Par

Par Rich

2008-02-19T16:42:00.010-06:00

One thing that Dr. Kays said during our visit has been echoing in the back of my mind for a week now--"Now that Par has survived CDH..."
Wow. Par survived CDH. Being on the other side of the hill--it is too easy to forget the journey we've been on--which is good to some extent--for Par's benefit--we need to look forward as we work with him to gain weight, roll over, and eventually crawl, talk, steal our keys and take the car to pick up his girlfriend... But I don't want to forget how incredible our journey has been--how the power of prayer touched our lives so heavily--how Dr. Kays' knowledge and experience saved our baby boy. We feel certain our outcome would be different if it weren't for him. This blog has served many purposes as I have said in the past--but I feel if I continue on posting about Par and his progress it may lose the powerful message:
1. We know all of this is only because of our Merciful Father.
2. After all of our research, Dr. Kays is the foremost authority on the treatment of CDH, along with the highest survival rate in the country (could be the world).
3. Prenatal diagnosis of CDH is SO important--so ask that your OB screen specifically for this at your 20 week ultrasound(they should anyway).

Although not equally, these three points have given us an otherwise healthy son who is now enjoying his family at home and his new best friend Tiffany. Hopefully this blog will be of help to other pregnant mother's with a CDH diagnosis. If you want to continue to read my 'babbling' and of course keep updated on Par and Tiffany (his dog)--feel free to visit our new family blog-- www.familyofriches.blogspot.com

We've enjoyed each comment and felt every prayer for our son--thank you for all the support. May God continue to bless you.
Love,
Liz, Rusty & Par

Quick trip...back with good news...

2008-02-13T16:10:00.005-06:00

Our trip to Gainesville was long but not too bad. Par did really well in the car (as did Tiffany) and we didn't have to stop an excessive amount--he was good about eating and sleeping--no melt downs (thank goodness). As we arrived into Gainesville--

(cue Twilight Zone music)

it brought back some really strange/weird feelings. Last time I drove into this city I had no idea what God had instore for our little family. I was pregnant, anxious about Par's birth and the unknown and lacking 2 Christmas stockings. Now, driving in, I have our little miracle baby awake and ready to chow down, I know the outcome of the delivery and we've made it through a really emotional and physically draining NICU stay--these feelings overwhelmed me as we drove in--and I wasn't expecting it at all. To top it off, we walked into our "home" at the Homewood Suites--we were greeted by familiar faces and given our room key--they had upgraded us and we walked into our "same" room. Different floor, but our same room. It was a strange feeling.

But...our precious Par was here with us and ready to get down to business with eating and lounging. I fed him and then we headed to Josh and Tina's for a playdate with Ella. They fixed us a delicious meal--and although Tina and I were getting up throughout the meal to tend to our babies--it was a nice dinner and i am so glad we were able to spend the time with them. We slept well--all of us did--and woke up having to hurry to get to our appointment at 9:30am.

We were a wee bit late--but they didn't seem to notice. Par was stripped down to be weighed and decided that it was a good time to demonstrate his kidney function for the nurse. Needless to say, it was a mess and Par didn't even act like he knew anything had happened.

Par was tired and not being his energetic self the first time Dr. Kays came in--He perked up a little bit when Dr. Kays started to exam him but then got a little upset because he was hungry. Dr. Kays had just finished saying his main concern is Par's weight gain and because he was hungry, we all agreed to take a little break and let Par eat. Dr. Kays came back in about 30 minutes later and wrapped up our meeting: Par's oxygen is discontinued during the day and he only has to sleep with it for about a month. His lasix is to be weaned over the next two weeks and he is going to stay on his other medication for right now. Dr. Kays seemed pleased with Par's progress--but we just need to fatten this kid up...so we are working on it...sort of tricky, so please pray for Par to gain weight. The appointment was very positive and we don't have to go back to Gainesville until Par is a year old (YAY!)--they spoke volumes as to the confidence Dr. Kays seems to have in Par's recovery.

After our appointment, we went back to the NICU 3 & 2 to say a quick hello to some of Par's nurses--we didn't see everyone but it was good to see a few. We quickly headed back to the hotel to grab our bags and hit the road. Once again, Par was a perfect angel in the car the entire time--we were so blessed!!!!!! We thank you for all of you prayers for our precious son--he is doing well and we give all the glory to God for all the miracles He has given us.

Much Love,
Liz, Rusty & Par

Back to Gainesville we go...

2008-02-10T23:08:00.000-06:00

Bright and early tomorrow morning we are headed to Gainesville for a check-up with Dr. Kays! We are really excited because it could mean discontinuing some of his medicine and possibly his oxygen. But we know that having his oxygen isn't such a big deal, so if we have to keep it for a few more months--we will be okay.

This week has been good. Par has been a very happy little boy--he has gone on many walks this week and really enjoyed all of the fresh air. We played outside a little bit today--Par seemed to enjoy the natural vitamin D. Par has rolled over a few times this week--and I laugh when I tell you that Tiffany (our precious dog) is the one that taught him how. I spent a good amount of time rolling him from his back to his tummy and then letting him try--but he would just stare at me. Tiffany had been watching and ran over to us and started rolling over and over and over. Par was smiling so big--apparently thinking she was funny and then he just rolled over--just like that! Who needs a mom when you have a dog!?!

Please pray for our trip down to Gainesville and for our check-up with Dr. Kays--we continue to be amazed by this precious gift from God.

Much Love,
Liz, Rusty & Par

Par is 3 months old!

2008-02-02T17:01:00.001-06:00

I want to thank everyone for your patience in waiting for the next "Par Update"--only about 40 of you emailed me or left a comment asking for me to hurry up and update the blog...believe me, each email and comment made me feel so special--I am humbled by the fact that so many of you love our precious Par (uh...we don't blame you...but we know you have children of your own!) Anyway, sometimes it was difficult not to update--sometimes it was REALLY easy--either way, I'm sort of proud of myself for letting Rusty, Par and me have some good quality time together without worrying about the update.

For our really loyal fans, you probably realized that yesterday was Par's 3 month birthday. We had a great time hanging out watching Par smiling and cooing! He loves to stand up (obviously with assistance) all the time. This week we went on a few walks and some quick errands around town. We've been busy saying prayers for Par's friend Ella who is back in the hospital--please help us pray for a quick discharge.

Although a week has gone by, nothing big has happened--we're just plugging along and that is just how we like it! Tiffany got her teeth cleaned--and pulled through just fine. Thankfully her breath is getting more tolerable each day. As I type this, Par is beside me with his thumb in his mouth--he has been sucking on his hands a lot lately. He's been sleeping great--through the night like a champion! One night this week he had a little meltdown at 4am because of some gas issues--I felt terrible that I couldn't help him. He just cried and cried--pooting pretty steadily in between cries--it was actually pretty comical--but it didn't seem that funny at 4am.

We thank you for your prayers and continued interest in the blog. We praise God for each day with Par and for all that He has taught us by giving us this precious baby.

Much Love,

Liz, Rusty & Par

PS- We took this picture right after his bath--before we put his nasal canulla back on--so don't get excited, he is still on oxygen.

And the weaning begins...

2008-01-27T17:38:00.000-06:00

Yes..sadly I am not superwoman and keeping the blog updated daily is becoming more and more difficult with the demands of a 3mos. old baby (well, just about 3 mos.) and trying to get back to a normal life in Birmingham with my precious husband--not to mention the numerous doctors appointments between Par, Tiffany and me. In short, our life has become no different than anyone else! Praise God! The blog has been a great source of therapy for me--especially during the early weeks of Par's life. I can't thank you enough for the support you've shown our family. The power of prayer is a true testament to the faithfulness of our Lord.

I don't know how often I'll update--although I know it will at least be once a week. So, I'll try and wean all of us slowly--and of course, you'll never be deprived of a super cute picture of Par--I'll post those as they come!

This weekend has been quiet--my parents have both been out of town and Rusty worked for part of the weekend giving Par and me a chance to run some errands. He was a perfect little baby in church today--slept most of the time--how great is it that his "morning nap" falls at the same time as church--it just happened--praise the Lord for little gifts! (Now that I've acknowledged it he'll be screaming through the entire service next Sunday I'm sure!) We went on a long walk this afternoon and now Par is asleep--and in about 30 minutes he'll wake up abruptly startled by his own hunger and start screaming for food--thankfully this is easy to remedy.

Much love and peace to everyone!

Love,
Liz, Rusty & Par

Woo Hoo!!!

2008-01-25T23:32:00.001-06:00

Par went to the doctor for another vaccine--he did great--cried the necessary amount and then was fine. He didn't even need Tylenol this evening, he has been completely himself! Great news from the doctor--he seemed "pleased" by Par's weight gain. I was relieved because we sort of got off target when I went into the hospital--but for Par to go from just 1 ounce in 11 days to 13 ounces in 16 days--that IS a major improvement! Anyway, I think we will hang onto the scale for another week--mainly because of the switch-a-roo we've pulled on Par with bottle/breast--I just want to
be sure that all is going as it should be.

Par's eating seems fine--I know I sound like a broken record, but he is just a different baby when he is breastfeeding--praise God for this gift! It definitely helps to confirm that it was worth all the pumping--in the NICU and the past week of pump'n'dumpin...I pray--I sincerely pray--that I will not have to pump any more. But of course, I will if something else happens.

It is VERY cold in Birmingham--but somehow, Par has made a few trips outside today without it bothering him--I think he really likes the fresh air, I know I do! Apparently, there is a "winter weather advisory"--not sure what that means--I guess we'll see tomorrow morning!

Par has been very happy today--we told him that his friend Ella was released from the NICU today and is at home. He could hardly contain his excitement and was cooing a bunch this afternoon. He has just now gone to bed--we let him stay up until we had confirmation via Ella's blog. He is now fast asleep in our bed--and now, Rusty and I are enjoying some "down time"--yet, I'm still writing this blog...
We continue to be very thankful for all of the prayers.

Good night,
Liz, Rusty & Par

Another "Great" Day

2008-01-24T23:58:00.001-06:00

Par and I had lunch with my mom and my Grandaddy, Par's other great-grandfather--needless to say, it was a "great" lunch! I'm feeling much better--probably will be 100% by the weekend. Par is eating well--we're back breastfeeding--Par is/was a little confused--like, "Make up your mind Mama!"--but he does so much better breastfeeding, he is way more relaxed.

Ella has some really exciting news...check it out...ellawest.com

Thank you for your support. We praise God for each day--and thank him for such great friends and family.

Love,
Liz, Rusty & Par

Our STRONG little boy

2008-01-23T22:58:00.000-06:00

Par loves to hold his head up--he has amazing control over it and prefers to be sitting up to "converse" with us. He also is enamored by the television--once he zones in he can't be distracted--not even by his daddy with the camera!

He's been eating a lot today and napping--I am starting to pick up on his own "schedule"--so far it works for me!

Tiffany seems to be acting a little jealous--my mom has noticed how she sits right next to you when you sit on the sofa. She does this anyway, but not with anyone but me or Rusty before--now it is just whoever is holding Par. Tonight she wanted to sit with me but there was no room--she tried anyway. Picture her hopping up on the sofa and then backing up into my lap where Par is already sitting. I was cracking up--she was so frustrated...we've tried to give her some extra lovin' lately--if only it would get a tiny bit warmer and I could take her on some walks with Par!
We thank God for our precious Par and for my continued recovery--I'm feeling even better than I did yesterday--I'm looking forward to feeling 100%.
Love,
Liz, Rusty & Par

Just a regular day.

2008-01-22T22:05:00.000-06:00

Nothing exciting happened today--and you can't imagine the relief! Today was our first attempt at a normal day--and Par did great! We were up and rolling mid-morning. Par had his bath and then slept while I washed lots of dirty clothes, sheets & towels. He woke up very hungry and has been eating ever since! The witching hour isn't any better--but it doesn't bother me too much--I like trying to comfort him.
Par was smiling a lot today and kicked it up a notch when his dad came home...but of course, he was a little camera shy tonight--so we have some "serious" pics...

We thank God for your prayers and each day--we praise Him for the miracle of our son. Thank you.

Love,
Liz, Rusty & Par

No....not twins.

2008-01-21T21:54:00.000-06:00

I know. I know. The resemblance is uncanny! It is AMAZING how a simple nasal canulla can make two people look so much alike! Actually, the person to the right is Par's great-grandfather, Daddy Joe (my grandfather)--the person to the left is Par. :)

Praise God, my IV has been removed! Rusty administered my final round of antibiotic intravenously this morning and then I went to the doctor around 1pm to have it removed. For the next 6 days, I will be on an antibiotic orally that prevents me from breastfeeding Par--so for now we'll be putting a good dent into our collection in our freezer--and I'll be pumping (a lot). Hopefully the hospital stay and pumping are a penance that can be applied retroactively...not that I have anything in mind.

Par was very excited to wear his outfit that his Aunt Sally gave him for Christmas. He was very warm and cozy in it all day!

Well...for those of you wondering "what else could happen!"--we took Tiffany to the vet today because she had a heck of a case of halitosis! As many know, stinky breath can be a sign of something bad going on--but for Tiffany, she has a mean case of gingivitis. Later in the week she'll have her teeth cleaned, which means she has to be "asleep"--I'm nervous for her, but surely--SURELY--nothing else could possibly happen.

We are looking forward to getting into a routine (again)--or at the least, we are looking forward to clean clothes, fresh sheets and nice showers during reasonable hours--all in our own home.

Thank you for your continued prayers. We thank God for our health and for the great news we're hearing from Ella's camp--looks like she might be headed home this week. Please pray that all will fall into place.

Love,
Liz, Rusty & Par

Par's Baptism

2008-01-20T23:18:00.000-06:00

With all the drama going on with me, praise God that we were able to proceed with our plans to baptize Par today. This is most important to us because Fr. Donohoe (our priest and dear friend) was celebrating his last Mass at The Cathedral of St. Paul for a long while. He will be studying in Rome for the next two years--we will miss him very much but plan to visit.
At 10;30AM I was temporarily discharged from St. Vincents Hospital to attend the baptism and due back at 4pm for my next round of antibiotics. At around 1pm we received a call that a home health care person would be able to finish out my antibiotics at home via IV. This is huge--although it is just one more day in the hospital--I am still trying to care for a new baby with special needs and it was just time to go home. Rusty has been the one administering my drugs and so far he has done a great job. It does help that this is all very familiar to us from our long NICU stay--can you believe that NICU stay has already proven to be a great resource for us!?!
Mom threw a gorgeous reception at my parent's house. The food was delicious and the cake was beautiful. Although I was completely exhausted, I so loved being surrounded by family and friends.
Rusty and I look forward to having life back to normal--which involves getting this IV out of my hand--we hope that will be tomorrow. I know I'll have to take it slow--I'm prayerful that the infection is gone. We thank God for our precious baby. We thank Him for the powerful cleansing waters of baptism. Praise to You Lord Jesus Christ!

Love,
Liz, Rusty & Par

Snowy Saturday

2008-01-19T21:48:00.000-06:00

Today was Par's first snow...although he wasn't able to make any snow angels outside, he was still my little snow angel! We had a great view of the snow from my hospital room window. Thankfully, Rusty took some pictures at our hour for us to see...and Tiffany told her dad she wanted to wait for Par and me to come home before she played in the snow for the first time--how sweet! So--although we'll be the only people in Birmingham, our family will be praying for a snow later in the week when I finally get home.

We slept okay by ourselved last night--though we really missed Boo. Par slept through the night--I woke up around 5:00 AM in some pain and with a fever. I went ahead and woke Par to change and feed him and then we slept until around 8am when the doctors made their rounds. The doctor on call said that there was good news and bad news.

The bad news is that the doctor feels I'll probably be here through Tuesday. My heart sank--I am going crazy in here!!!! She said that they (the collective pronoun is meant to indicate she and the other doctors consulted) feel that we are SO close to getting this infection beat--my fevers are much lower and with more time between the pain episodes--but the fevers and pain still indicate a problem. Hopefully the tweaking of one of my antibiotics will be the trick.
Please pray that I will be fever free and pain free through tomorrow morning--technically, by 5am I will have gone 24hours without fever and could possibly be discharged. But--Above all, I want God's timing--my vocation is motherhood and being a wife to Rusty--unless I get well, I can't continue with these gifts from God.
The good news is that no matter what the decision is on discharging me tomorrow, I will get a "pass" to go to Par's baptism at 11am. It happens to fall between my schedule of antibiotics and so they will just unhook me from the IV (leave the IV in though) and let me out for mass and the luncheon. Praise God for this gift. I plan on starting a trend of hospital tape and IV's with needle marks and bruises--so tomorrow will be a great day to debut it!

Par is still the favorite baby in the unit. All the other babies are newborns and not much fun--so nurses are so surprised when they come in and see an alert baby with lots of smiles! Plus, this has been a great way to spread the word about Dr. Kays and Shands--everyone is so interested in his journey and this boy is not afraid to show his tummy scar--not to mention his tummy trick. One thing we've discussed with Ella's parents is the need to educate the medical communtity on the capabilities in medicine with saving CDH babies--hopefully, Dr. Kays will be able to point us in the right direction. But it was definitely reassuring to hear just how interested and "hungry" the nurses hear are to learn about Par's amazing journey and this famous "Dr. Kays"! Par is still eating well and still trying to nurse on everyone which is reassuring to me.
Now for the even better news--Sal is coming to spend the night with us tonight! Yep, Par's aunt/godmother is driving in from Furman as I write this for a slumber party and the baptism. I was worried Sally might not make it for the snow and ice--but as Sal texted, "neither snow, nor rain, nor sleet can keep me from getting to you" Welcome Home Sal!!!!!

I thank you for all the thoughtful phone calls, emails, notes--your prayers and support mean so much to me. I ask that you will continue to pray for Par as he is still "enjoying" his nasal canullas for his oxygen and for Par's friend Ella who is making HUGE progress. May God bless you.

Love,
Liz, Rusty & Par

Don't take their place!!!!

2008-01-18T20:14:00.000-06:00

For every mother and father out there--there have probably been many times when you've seen your child struggle or in pain and you responded to this struggle/pain by saying, "Oh, if I could take your place, I would"
Well I am here to tell you--those are stupid words. Children are much better at handling the pain and will soon forget the trauma than adults--from now on I'll just say "I would take the pain away if I could."
You see, I discovered today that I am just a big wimp. I have long prided myself on a "high tolerance for pain" yet today I found myself wincing at the alcohol wipe and immaturely not inviting the nurses into the room when they knock. Today has been rough--I was all excited to find out that plans were in process for me to be discharged tomorrow and then things started to unravel (uh...remind you of anything? NICU2?) Anyway, I started to run a fever and then my kidney started hurting a lot--to the point where I needed a pain killer. On top of that, my vein blew and so I lost my IV--I thought they might finish my antibiotic orally but that was a no go. So--count them--one, two, three, four, five nurses attempted to place the IV--yes, that gigantic needle was stuck into me 5 times unsuccessfully. Not to mention the number people who came and checked to see if they saw a vein and left without a stick. Finally, the nurse who had first put the IV in on Tuesday showed up and saved the day--but I do look like a drug addict with all the needle marks.
So, I don't know when I am going home. I can't control my fever--and in the long run, I need to get better or I could end up with kidney damage. As I may have mentioned before, my hurry is Par's baptism on Sunday.

Par enjoyed himself today--my nurse just loved him and was very attentive to both of our needs. He was all smiles this morning--and of course when his dad showed up (he always smiles for Rusty). He was so good when I went through a bad spell of pain/fever this afternoon--but was very intent on letting us know when he was hungry--and in turn, very good at eating it. Go Par! We haven't weighed him since Tuesday so I am anxious to weigh him when we get home.
Par and I are spending tonight alone--because of the pending snow storm, I didn't want my mom stuck here at the hospital and Rusty needed to be at home with Tiffany. Par and I are all snuggled up in the bed waiting on the snow--we are quite the pair--IV drips and oxygen--both of us tethered to these machines--thank goodness Par isn't a toddler or we would be way tangled up. I feel alright--the nurse just brought in a hot pack for my kidney to go to sleep with--please pray that my kidney will be healed and the fever gone and that we will be able to leave tomorrow, even if it is snowing. Praise God for all the blessings he has given us.
Hopefully we'll have snow pictures tomorrow.
Love,
Liz, Rusty & Par

Who needs Grey's Anatomy?

2008-01-17T22:46:00.000-06:00

Yep, who needs Grey's Anatomy when they spend most of their times hanging out in hospitals! Wow...am I sick of the beeps, the smells, the lights that are on 24 hours a day--for some reason this didn't bother me so much in Gainesville--but today it is starting to get to me.

My ultrasound of my kidney was fine--nothing abnormal--so we are still just dealing with a severe kidney infection. I didn't mention in the other posts--but apparently kidney infections are known to have up and down fevers while being treated. So--that is what I have been experiencing--thankfully this is the first day my fever hasn't been up to 105--my high today was 103ish--but that was around 9-10am--it has been around 100 most of the day and right now I am fever free. But Dr. Christine said she wouldn't be surprised if it spiked again during the night. Hopefully it won't!

Par is doing well...he is missing his mama/Par time. But he is enjoying his Boo being here to comfort him. My room is very happy right now--I have beautiful sunflowers from the Feagins, the Petreys brought me some tulips, Tina & Josh (Ella's parents) sent some roses and my grandparents (Mama Carol & Daddy Joe) sent some very sweet balloons! And I thought I missed out on delivering at St. Vincents! Julie was suggesting we put a blue bow on the door and just play it up like I've just delivered! (For those of you confused, I am in the postpartum part of labor & delivery so I can keep Par with me without fear of him catching anything from a sick person). Well, all I can say is that the generosity we've received with Par and now with me is only encouraging me to find more drama in our life--I'm not sure how we'll get along without all the attention! Obviously I am kidding, we are very anxious to get back to "normal" life--we praise God for the wisdom of Dr. Christine in putting me in the hospital without hesitation--(105 can cause seizures) and we are thankful that it is only a kidney infection and that it is treatable.

God is good. We praise Him for all the good He gives us in our lives--these wonderful nurses, our friends and family, Ella's recovery, Par's breastfeeding,--how great is it that this list could go on and on!?!

Thank you for your prayers. Thank you for your concern for our family.
Let is snow, let it snow, let it snow!!!!
Love,
Liz, Rusty & Par

PS--If anyone has any good ideas for an illness for Rusty--let us know, we don't want him to miss out on good hospital time!

Not so fast...

2008-01-16T16:52:00.000-06:00

I want to first put your minds at ease about Par. I know a lot of you are probably freaking out that my baby is with me when I am so sick--but his pediatrician made a "house call" (his practice is in a different wing of the hospital) and gave Par a head to toe assessment and said he is fine. He is also aware of the situation with me and told me I can call him at any time to check on Par.

As of this afternoon, we finally have an official diagnosis of kidney infection. Dr. Christine is still growing the culture to figure out how we can attack it better with antibiotics (right now we are using a broad spectrum of antibiotics). Unfortunately, it looks like I'll be here through the weekend...but Par is being a great sport and enjoying the extra attention from the nurses. I had an ultrasound of my kidneys this morning, we hope to hear back this afternoon if there is anything to speak of...but I'm hopeful that we're just dealing with a plain infection. I'll update later when we know more.

Par says hello and "thank you" for the prayers for his mama!
Love,
Liz, Rusty & Par

We missed hospital living...

2008-01-15T22:13:00.000-06:00

Well...I guess we just missed the hospital.

I was admitted to the hospital today for a kidney infection. I am typing this with Par sleeping right next to me. My doctor was nice enough to get us a room on the postpartum floor of labor and delivery so Par could stay with me.

Last Thursday my lower back started hurting and I called the doctor and the nurse said it sounded like a urinary tract infection and to just up my fluids and drink cranberry juice. She also said I could take Motrin for the pain. So that is what I had been doing, but the pain was getting worse. This morning I woke up with a fever of 100. By lunch time it was 103--then 104. I called the doctor and they said to come in to be checked out. Basically they said that it was past the point of treating with a shot and that I would need to be hospitalized for a few days to take care of the infection. By the time I was admitted, my fever was 105.4 and they put ice packs on me to bring the fever down. It is finally down to 98.5 and I am finally feeling like myself again.

On a happy note, Par weighed in at 8 pounds .1 ounces today. The doctor was satisfied with me giving him the weight over the phone so I didn't need to take Par in to be weighed--he said to just keep doing what I'm doing because it is working. Unfortunately, I can't breastfeed him right now because of all the antibiotics--but probably by the weekend.

Par has been a REALLY good little boy today--especially with everything going on. He just goes with the flow--we are so blessed to have such an easy going baby.

So, for the next few days I'll be here at St. Vincent's Hospital just hanging out with Par. My mom is spending the night with me and helping with Par--earlier today I couldn't even pick him up because I was afraid I would drop him because I was dizzy and shaky--but now I feel 100 times better--so hopefully mom won't feel obligated to hang out in a hospital all day.

I ask that you will pray for healing of my kidney infection and a quick recovery so we can go home soon. We continue to pray for Ella and of course, for our little boy Par.

Love,
Liz, Rusty & Par

monday...

2008-01-14T23:21:00.000-06:00

Par woke up hungry...but after he ate, he was all smiles. We are trying to get moving earlier in the morning--we are doing well if everyone is up and dressed before the Today show is over (thank goodness for that new 4th hour!)

Praise God for Par's little appetite! Although we still aren't gaining an ounce/day--we are gaining and several times today Par weighed in over 8lbs!!! But, we've seen that he burns those ounces off while sleeping (he isn't very good about waking up for a middle of the night feed). We go for another weigh in tomorrow, please pray that his weight gain will be good enough to continue with what we've been doing.

We had hoped to go on a walk today, but it was just too cold. I was feeling a bit stir crazy when Rusty came home from work--I'm sure it was more of a fresh air thing than a "stuck at home" thing--it just stinks that it is so cold right now...but anyway, I ran a little errand and left Rusty and Par hanging out together. When I came back (about an hour later) both of them were happily sitting on the sofa together--and Par was in a clean diaper (Rusty's first diaper change!). I was so proud! It was much needed bonding time for Rusty and Par--Par tends to get upset if his mom isn't holding him--but I know he is just using me!

I've been learning about "the witching hour" (also called, "arsenic hour")--it seems this is a common term among my mom's generation for when precious quiet babies turn into crying inconsolable babies--I've actually been gaining first hand knowledge of the phenomenon for the past 2 weeks--it is only in the past few days that I noticed the pattern--but it usually is sometime between 5-7pm and it comes on out of the blue. I have found that just feeding him calms him--even if he isn't hungry, he is still calmed. I think it is so strange that this is a common occurrence with babies...

We continue to pray for Ella--it seems that they have a plan--so we pray that every step in their new plan will prove fruitful to the recovery of this precious little girl.

We thank you for your continued prayers for Ella, Par and their friends. May God bless you and your families.

Love,
Liz, Rusty & Par

Sunday with Par

2008-01-13T23:23:00.000-06:00

We're pretty efficient...this is the second Sunday in a row where we've woken up, both taken showers and made it to church with a happy and full baby....beginner's luck? I don't think so!

Par had a full day--after church his Boo came to visit him and then he went to see his Gigi and Memommy (great-grandmother). Later, my cousins came over for dinner and a game of "pass the crying baby"--Par was just SO tired--but he didn't want to sleep--so he cried. Later (after they left) he was happy and content to just fall asleep in my arms.

We are still working on gaining weight--he's consistent--not quite where we need to be, but definitely improving.

Thank you for your prayers for Ella--and for Par.
Praise God for all of our blessings.

Love,
Liz, Rusty & Par

Par's Friend Ella

2008-01-12T20:23:00.000-06:00

We are so blessed to have so many people visit our blog to check on Par--he is doing well today, we are just working on adding those pounds, ounce by ounce. We thank you for praying for him. Below you will see some pictures of Par from today.

As many of you know, Rusty and I became friends with Josh and Tina, another CDH family in the NICU at Shands. There daughter Ella was born in late July and is still in the NICU on a very long road of recovery. Our families became close and leaving was difficult--I was so sure we'd leave around the same time. It was difficult to say goodbye to our friends, but also because Ella was still in the NICU. Since we have been home, precious Ella has not been doing well and it breaks our hearts to read of her struggles--but it gives us joy and hope to see how strong her parents are, and what a fighter she is--we know all too well the helplessness one feels in the NICU at times--their strength and desire for God's plan is amazing. We ask that you will take this time to pray for this precious child who is now back in the NICU 3. We ask that you will specifically pray for answers to the unknowns perplexing Dr. Kays and the nurses.

Love,
Liz, Rusty & Par

Pudgy Par? (not quite...but working on it!)

2008-01-11T22:55:00.000-06:00

Par had a weight gain of 2.7 ounces--not quite an ounce/day--but definitely an improvement from last time!!! Keep praying for continued weight gain-we go back for another weigh in on Tuesday.

We ran a few errands while out--we picked up Boo's birthday present and dropped off some items with our favorite hand-engraver. Par was a perfect angel during the errands--but did not enjoy his weigh in very much. Charlotte met us and saw Par in person for the first time--and then got to listen to Par exercising his vocal cords while we undressed him and weighed him in the lactation consultant's office. Thankfully he had gained weight or I might have also been exercising my own vocal cords.

The rest of the day was spent eating (Par, not me) and sleeping (both of us)--with a few visits from friends and family. Rusty, Par, Tiffany and I watched WE ARE MARSHALL last night--good movie--really sad, but good movie. Par seemed interested in the football, so in the next few days he is going to watch Rudy--we just want to keep things realistic for him.

Many of you know that Par received an i-pod while at 25 weeks gestation as a gift from his dad. Our cousin was kind enough to load over 7,000 songs onto it...yet, Par refuses to listen to any other song than The 12 Days of Christmas sung by a choir of children--we probably listened to it 20 times today--he screams out during the song sometimes as if he is singing--so it is worth it--but hopefully we'll get to the other 6,999 songs some day.

Please pray specifically for Ella today--for more info, ellawest.com

Thank you for your prayers.
Love,
Liz, Rusty & Par

Rain Rain Go Away

2008-01-10T23:43:00.000-06:00

Today it rained and rained and rained...
Par ate and ate and ate...
Tiffany ate and ate and ate...
They both slept and slept and slept.

I got a lot of laundry done between feedings--and Par was a happy baby for most of the day. A few meltdowns when he discovered he was too tired to sleep. I found myself "comforting" him by saying "Oh, you are just so tired"--it used to make me so mad when that was said to me by babysitters--but now I understand.

I caught Par on my cell phone around 1pm--I'm not sure who he was talking to--all I heard was "Just give it a good tug--then you get to leave" Very peculiar...hmmmmm.

Boo came to visit during the Tornado warning--she played with Par while waiting for the sirens to cease so she could head home. We weighed Par a few times--but he kept pooping so we kept reweighing him...I'm definitely obsessed with the machine. Below you will see the final weight of the night--(not actual weight because of his nightshirt--that weighs approximately 3 oz).

I'm proud of his hard work. But I can tell he is worried about tomorrow's weigh in...Please pray that we will be told we're on the right track and to keep pluggin' along.

We thank you for your prayers--please continue to pray for all these precious CDH babies--their battles are on going--their strength is definitely from our Lord. Praise be to God for how far we've come.

Love,
Liz, Rusty & Par

And they say tomorrow never comes...

2008-01-09T22:45:00.000-06:00

Yesterday we were waiting for tomorrow--thank goodness it came--because it was a much better day! Par has been eating--we've been adding in some "meatier" snacks with his medicines on multiple occasions--sort of like little "treats" throughout the day. He seems a little bewildered because they don't all taste like medicine (which is what he is expecting). He isn't taking a bottle at all--it is just not interested--so I am just doing more frequent little vials of hindmilk with a nipple on the end (this is how he gets his medicine). He's been nursing great and had a long nap on his Boo this afternoon. I weighed him numerous times (of course) and right now he weighs 7 lbs. 13.4 oz--so I think we are getting somewhere!!!

We went on a leisurely stroll this afternoon--Par just stared at the trees and me the entire time. I think the fresh air is good for him--and the temperature was perfect! Too bad it is supposed to rain tomorrow.

We went to visit my dad and brother's new office downtown tonight and Par got to go. As soon as we got to their floor--Par wiggled out of my hands and ran down the hall. When we found him, he was sitting in his Uncle Joe's chair imitating him. Par does a great imitation of his Uncle Joe when he doesn't get his way.

We are so thankful for our little boy's weight gain--Praise God for each little ounce!!! We continue to pray for Par's friends--we thank you for your prayers for them as well.

May God bless you...

Liz, Rusty & Par

I should have been more specific.

2008-01-08T20:19:00.000-06:00

I tell you what--this prayer thing gets me every time! Praise God for answering my prayer--but I should have been more specific. You see, I didn't necessarily literally mean "pray for a gain from the last weight"--I meant that his gain be in accordance with the amount he was already supposed to be gaining each day.
Par weighed 7 lbs. 9 oz. last time. Today he weighs 7 lbs. 10 oz.--he did gain weight-yes...but there is still a tiny issue.
It is hard to know how to approach this because of many factors--he lost weight the night before we were discharged and then he had a 10 hour road trip and was weighed not 8 hours later--so technically, he could have still been losing weight for that day or so with all the trauma of coming home. For all we know, he lost 12 oz. and has now recovered them with an added ounce. But they (doctors and lactation person) don't really care about the different scenarios--they just want him to gain weight. Well...so do I. After seeing the lactation consultant (she watched Par nurse--did a pre/post weigh)--she was impressed that he drank 2 ounces in our short nursing period--and without trouble. The good news is that we know he is getting it in his body--the bad news is the quality of milk--not quantity. Basically, the hindmilk is the fatty/high calorie milk that comes after the foremilk (which is like skim milk)--the idea is to get the hindmilk in him without expending the energy to nurse until he gets it--so I am going to express/pump off milk before nursing so he can get to the hindmilk quicker. We also talked about supplementing--I am not a fan of this--but we reached a good compromise--basically I am going to let the hindmilk/foremilk separate in the pumped bottles that I have and feed him his medicine with hindmilk (I was just expressing a little milk before)--hopefully, these two things will be just the remedy. In the mean time, I have a scale that they sent me home with so I can obsess over how much he weighs and eats each day. I go back for a weigh in on Friday--so, now for specifics--please pray that he will have gained an ounce or more each day until the weigh in. Actually, please pray that he breaks the 8 pound mark--not sure if that is possible...but worth a shot!!!

Speaking of shots...
Even before all that mess--we had a little issue at the pediatrician. Par got his immunizations today--6 of them--1 oral, 4 shots (2 are in one shot). Well, he was so good for the first 3...just wimpered a little--such a tough little boy. I couldn't watch, I was just looking at him in the face telling him it was almost over--then he let out the scariest scream--I turned and his leg is spraying blood out like a fountain--the nurse quickly put a cotton ball on and then his little thigh began to blow up--I was shocked and asked her what was going on. She went and got another nurse who then said to get Dr. Farr. By the time he came in, the blood was no longer spraying but he did have a little golf ball size knot on his thigh. He confirmed that it was a hematoma and that unfortunately there is a risk of infection--so we are watching it carefully and I am to call and report on it tomorrow. The nurse felt bad--apparently this isn't common--but I couldn't say "oh don't worry about it" because my baby was crying and in pain--so, on the off chance that she is reading this blog--I know it was an accident and there is no need for apologies.

Par has been fussy (obviously) for the afternoon--taking some deep naps between eating (not the best day to try and up the feeding, huh!?! In a weird way, today was a lot more difficult than being in the NICU--probably because I don't know these people and they don't know Par. They also don't normally deal with fragile children (I could be wrong, but it is just a regular pediatrician). Either way, I knew what I signed up for when I decided to go to Dr. Kays--we knew that he wouldn't be able to babysit us once we went home...but we still wouldn't change a thing--by the power of God, Dr. Kays saved our baby's life.

On a lighter note, I couldn't decide what Par should wear to the doctor this morning. I frantically dressed him in three different outfits and then chose what he had worn to church earlier this week. Ironically, his most boyish outfit (Christiane should get a kick out of this)--for the first time I had 4 different people ask me about my little "girl"! Now, I'm no brain surgeon, but Par was sporting his famous mohawk--and his his outfit did have blue on it--oh well...

Looking forward to a better tomorrow...

Love,
Liz, Rusty & Par

Su-Par Sleepy

2008-01-07T19:29:00.000-06:00

(for those of you who are not MadGab champs--that reads "Super Sleepy")

Par was Wide Awake this morning--eating like a champ--and then around 2:30 he decided to get a little nap in and slept until 5:30pm. I tried to get him up at 4pm--but he just kept on sleeping. When he did finally wake up--he was a hungry hippo! Boo was visiting and he put on a little smiling show for her...

Later, Rusty and I put on a "12 days of Christmas" musical for Par. He loves the song (ironic, huh?) and so we played the song multiple times adding different motions each time--he loves it (and he thinks his parents are crazy). He was a good little baby today and tonight...what he doesn't know won't hurt him...

What he doesn't know is that tomorrow he gets his immunizations--I am not looking forward to it. He's already been through so much, I hate to make him feel bad again--but hopefully this will be "nothing" considering what he has already had done. He has also had a little rash that I called the doctor about last Friday--not anything major, but hopefully tomorrow we'll find out if it is from something I'm eating or something environmental--it didn't show up until we got home.

He also gets weighed tomorrow. I am nervous--having switched to exclusive breastfeeding, he is bound to have had some weight loss--I just hope it isn't anything major that will keep us from plugging along with the breastfeeding--he is doing so well. Please pray that he will not have lost too much weight--actually, please pray for a weight gain!!!--wouldn't that be amazing!?!

We praise God for all the gifts He has given us in Par. We continue to pray for Par's friends and we praise God each step his friends are able to take.

love,
Liz, Rusty & Par

Beautiful Birmingham

2008-01-06T23:41:00.000-06:00

We received a belated Christmas present from God today--a beautiful spring day! It was gorgeous here and I could not wait to get home from church to take Par on a walk--nothing like some good natural vitamin D to do the body good! It was our first walk ever--very exciting--the first time to use the stroller and the first time for Tiffany to go on a walk since we've been home--so she was going crazy with excitement when we told her.

Feeding/eating is still going well...Par is still a mama's boy--although he was excited about the UNC game last night--and was there with his dad for the dramatic win.

We continue to pray for Par's friends. We still miss them, thankfully we are able to keep in touch via email and updated with each other's blogs. We continue to ask that our Lord give them peace and understanding for His timing.

Rusty has been working hard trying to finish up a job and I have just now figured out that I am tired--so I've been trying to take a few naps while Par is sleeping--I'm sure I'll catch up on my sleep in the next 18 years or so. Thank you for your prayers--and for the warm welcomes we get every time we run into friends here in Birmingham (the walk was full of them, thank you!!!! We loved it!)

May God continue to bless you as you pray for these precious children...

Love,
Liz, Rusty & Par

Happy Saturday

2008-01-05T23:59:00.000-06:00

Par had a great day of feasting today! Everything is going well with regards to his eating--he doesn't seem to miss the bottle at all--and we still think he seems so much more relaxed and comfortable while eating. He hasn't had any burping/gas issues the past day or so.

We went to visit my parents and Rusty's grandmother today, so little Par got all bundled up for the outing. He enjoyed it--but was very tired (and hungry) when we got home.

Rusty and I have both tripped over the 6ft oxygen line several times--and I just about launched the oxygen tank through one of our french doors earlier today when I tripped over it entering our den. This is reminiscent of being pregnant and bumping my belly into corners of tables and countertops--I'm sure we'll get the hang of everything before long. Par doesn't seem to really care, so no harm done.
Later, Par hung out and watched football and Ocean's 13 with us--we are treasuring these times--we realize that soon enough it won't be cool to watch movies with your parents!

We continue to pray for Par's friends still in the NICU--we ask God to shower them with peace and understanding for His timing. We praise Him for His perfect plan for each of these precious children.
May God continue to bless you.
Much Love,
Liz, Rusty & Par

99 bottles of milk in the freezer, 99 bottles of milk...

2008-01-04T18:09:00.000-06:00

take one down, pump one more round--and still 99 bottles of milk in the freezer.

When I went to sleep last night I started to think that my excitement for "mastering" breastfeeding may have been jumping the gun. I was sure this time things seemed different. Today I realized...
I WAS RIGHT! OH! You just can't imagine the excitement I have in my heart right now!!!! Going on 24 hours plus+++ exclusively breastfeeding at this point! I wish you could understand just what that means--I haven't had to pump in 24 hours--something I've done 6-8 times a day (and through the night) for over 2 months! I haven't had to wash out my pumping bottles, I haven't had to make a bottle--all that is required of me is....ME! And this precious little boy is happy!

Par hasn't been fussy at all--in fact, he seems more satisfied than he had been with the bottle. He's pooped and peed a number of times today (important to note, he is getting food)--all we need to see is for this little monkey to become a chunky monkey! Please know that I was never keeping the bottle from him today--I was ready (and willing--I don't want to listen to a screaming baby either) to give him a bottle the moment I thought he might be "hungry" or didn't get enough. I never had to--I didn't even "almost" have to--and he emptied me EVERY SINGLE TIME! (That will mean most to mothers who have previously pumped and switched to breastfeeding).

Birmingham natives will remember the Coffee Shoppe on Hollywood Blvd. It was so sad when it closed--one of the few places open 24 hours...anyway, I now know what it feels like to be "open for business" for 24 hours--and I have one eager customer! Right now, Par wants refills pretty much every hour--but I've been told he'll space it out on his own over the next few days as he continues to figure things out--and soon we'll be on a more manageable schedule. But I'm not complaining--I'd be okay if this is how it had to be.

Tonight we watched a movie (The Bourne Ultimatum) and had a low key evening--it was nice just hanging out with our new family. Par slept the entire time.

We thank God for our baby--we thank Him for giving us this precious child to raise. We ask that He will guide us in our parenting and that we will constantly seek His will. We continue to pray for Par's friends and families. May God bless them.

Thank you for your prayers.
Liz, Rusty & Par

What you talkin' 'bout Willis?

2008-01-03T19:20:00.000-06:00

Rusty shouldn't have been so happy about Par being a little clone...because his little clone is now a mama's boy. (cue hysterical laughter). Par loves his mama...and he isn't consoled as easily by his daddy. Here is a picture of Par alone with his daddy--he seems to be growling at him!

Par was eating well today (via bottle)and he seemed even more at ease in his new surroundings--by late afternoon I tried again to breastfeed--this time using Rusty's advice (which took us back to the beginning in the NICU). I had also received some great advice from another CDH mom who reminded me that Par had always been wide awake before and that his environment was quite different than here. So I duplicated the NICU as best as I could--TV on, lap top with music playing and me talking with fan going and lights--as well as some other early tricks--and what do you know--Par fell for it! He latched on almost immediately and as I write this he hasn't had a bottle since this afternoon--just nursing--he hasn't been fussy at all--quite the contrary. He is now sleeping on my chest. Hopefully he will continue to nurse throughout the night--my days of sleeping through the night may be over until he gets better at nursing--I just can't imagine that he'll be able to make it longer than 2-3 hours--but I guess we'll see. Praise God for such a wonderful gift for mother and child!

Par's bath time was uneventful--except that he sported a mean mohawk. He cried when we took him out--he loves it that much. Along with moving towards exclusive breastfeeding--there are other challenges--the pacifier being one of them--I think it is a great consoling tool--but I have been praying that he would find another way to console himself--he still likes us to hold it in for him--I think it is because he likes the smell of our hands near him--anyway, he has been using his hand lately to console himself--and it seems to be working. Don't worry, I'm not taking away that pacifier just yet (I can just hear family members shouting how cruel that would be to this little boy)...don't worry...I'm moving slow.

In a brief reflection--it seems that one of God's many purposes for giving us Par was to help me with patience--I have always been wired for instant gratification--but now, with Par nursing so well--I look back over 2 months of pumping and breastfeeding attempts--and I am overwhelmed at the gift of patience that I have acquired (with regards to Par--still lacking other places)--without this patience, I wouldn't be enjoying this gift of motherhood. Thanks be to God--ask and ye shall receive!

Thank you for all your prayers--settling into Birmingham has been neat. I have been receiving emails welcoming us back home--I know a lot of my friends and family want to meet Par---and we want you to! Please understand that Par is still fragile (as are other infants during this season, but especially Par). We are excited to be home--we thank you for understanding why we may not "socialize" for a while.

Please continue to pray for Par's friends and their families--we miss them and hope they know they were a huge source of strength for us while in Gainesville.

Much Love,
Liz, Rusty & Par

Sleepy little Par

2008-01-02T23:39:00.000-06:00

We have the best problem in the world...our baby sleeps through the night. I woke up in a panic at 3:30 AM and Par was sound asleep. Usually by 2:30 AM he starts crying for something to eat--but this time he was asleep and not budging. I went and fixed him a bottle--still sleeping. I gave him his bottle and he slept through the entire feed, but ate like a champ (burps included!)! Then I put him back down...and what do you know, we wake up at 7:20AM--Par sound asleep. This time he woke up too and was crying for some breakfast.

When we finally got out of the bed (I won't tell you what time) we gave him a bath. As usual, he loved it. He was awake a lot of the day today--more than usual I'd say--until this evening. I carried him around in a sling for most of the night--him sleeping soundly inside. It is a great invention--I was able to get a ton of stuff done!

I can tell Par is starting to feel more comfortable at home--he seems more relaxed now. He is such a good baby--we know how blessed we are with Par. We saw some more "real" smiles today (Mom swears he smiled 3 times at her today)--I've been working on getting him to smile purposefully at me...maybe tomorrow.

We continue to praise God for our son and thank him for the time we have with him each day. We pray for Ella that Dr. Kays will be able to discern the best course of action for her so she may go home soon.

We thank you for your many prayers.

Love,
Liz, Rusty & Par

Par is 2 Months Old!!!!!

2008-01-01T23:56:00.000-06:00

Our little boy turned 2 months today! He was such a sweet little boy this morning and tonight--but this afternoon he had a little crying fit--probably just a little gas--but he just couldn't get comfortable (and he was making sure we knew). We bundled him up and went on a car ride (of course, Tiffany went too!). We took a drive to Starbucks and then to pick up Davenports pizza--Par watched the Christmas lights out the window and seemed very content. It wasn't until the ride home that he fell asleep.

His eating was a little tough today because of excess secretions--I'm not sure the cause, but he was definitely hungry but his mouth was already full of secretions so he didn't know what to do. After sucking on his pacifier, it seemed easier for him to swallow and by this afternoon he was eating much better. Please pray that he will continue to eat well.

Later, his Gigi came by delivering Christmas presents and Par was there to keep her lap warm. I am glad Gigi got to spend some time with him--and thankfully he had calmed down by that point.

We thank God each day for our little Par. And we thank you for your prayers for Par and his friends. We praise God that Ella's fever has gone and we ask Him for His healing hand so she may go home soon.

Love,

Liz, Rusty & Par

Move over Dick Clark...

2007-12-31T19:02:00.000-06:00

Par's ready for 2008!

Par spent most of the day eating and sleeping. This evening he has been content sitting in his boppy on the sofa watching football with his dad and trying to put his fists in his mouth. He has not yet been successful, but boy--this kid does not give up easily! He's been making a lot of cooing sounds/noises--it is nice to hear things other than crying, grunts, hiccups & poots.

Tiffany has been giving Par a little more attention today--several times she came to sniff his feet while Par was eating. She doesn't seem jealous--sort of curious now--don't worry, we aren't leaving Par alone with her--we know dogs can snap.

Par requested that his mom and dad hang out at home with him tonight for his first New Year's celebration. We are more than happy to--we might be lucky to have Par sleeping through the night a good bit, but we aren't and so we are both pretty tired. Is this what it is like to be parents? Wow...we feel so old.

We were all set to just "hang out" when we got a call saying that Par had been asked to be the New Year's Baby at my parent's house. After all the stuff with the Gainesville Living Nativity, we knew this was just what our little boy needed. He made a perfect New Year's Baby--but was absolutely pooped when we got home.

We thank God for 2007. It has been a pretty incredible year--this time last year I couldn't have even imagined what we've just been through--and now, on the other side of it, I am trusting God for what He has in store for us in 2008.

We pray for Par's friends and we thank them for their friendships with their parents.

Happy New Year!
Love,
Liz, Rusty & Par

Sweet Sunday

2007-12-30T20:47:00.000-06:00

Par went to church for the first time today--he wore his Sunday best (the most precious baby blue daygown) and was perfect the entire time (except for the 2 times I had to change his smelly-poopy diaper so as not to offend those around us). We sat in the back and scooted out before everyone else to protect Par from any nasty germs. We don't plan on taking him out regularly--just to church--and only if we can do it this way (in and out without chatting with people afterwards).

Par was tired and so he took a nap on and off with eating in between--this whole "home" thing is hard work and I think all three of us are finding the adjustment hard (totally worth it, just hard). I can tell it will get easier every day--we just have to get into our groove.

Par was a bit fussy...

So we gave him a bath and he completely calmed down and just enjoyed getting washed and lotioned afterwards. We took his nasal canulla off for the bath (don't worry--it was like 4 minutes) and so we took some pictures--just adorable.

Par is doing well. He seems to be breathing the same as in the NICU (sometimes a little fast)--his appetite seems good. He goes through a lot of diapers and we seem to have done laundry about 5 times since we've been home! Not only are we blessed to have our precious Par with us, but he really is such a good baby.

Please pray for Par and me to get into sync with the breast feeding--the big change has not lent itself to an easy transition for this--although I know we'll eventually get the hang of it.

We continue to seek God's will and timing for our son, as well as for ourselves. We want nothing more than to cavort around town showing off our son without his oxygen tank--but we know that God has important things planned for us during this mini-hibernation. Our prayer is that we will be able to discern His will and act accordingly.

Please join us in praying for Par's friends--they are constantly on our mind.

Thank you for your continued support and prayers. Praise God for the love He shown us through our friends and family.

Love,
Liz, Rusty & Par

Lazy Saturday

2007-12-29T17:58:00.000-06:00

Wow...the past 48 hours have been amazing. Part of me can't remember life any different than it is now--and part of me wonders how people do this without a 2 month tutorial before taking your baby home. We have the advantage of knowing how much Par "can" eat, how many times he "should" poop and how long he "usually" sleeps--so we have something to gauge how he is doing--I couldn't even begin to imagine how a new parent just figures it out.

So much has happened since we left the hospital. For the first 4 hours Par didn't make a peep--he just panned his head from side to side--taking every thing in. The drive home was long--but Par did great! He slept a good bit--I'm sure the hum-drum of the car was a peaceful sound (reminiscent of the sounds from the NICU). As I said before, we arrived into Birmingham around 12:30 AM. It was so nice to drive on familiar streets knowing we were almost home. When we turned on our street we noticed baby blue bows adorning each mailbox--I looked at Rusty and said, "Wow. There sure have been a lot of baby boys born on our street!" I was tired--now I know how ridiculous that comment was--the bows were for Par! Every mailbox on our street and the streets leading to our house was adorned with a baby blue bow to celebrate Par's return to Birmingham. It was so touching--we are so blessed to have had such a warm welcome--even in the middle of the night.

My brother Joe and his wife Julie came over with their 2 year old, Elizabeth to welcome us--and take the pictures of us walking in our house for the first time with our son. We had only lived in this house for 6 weeks before we left for Gainesville, so it is like we are in a new house--and as I write this, stuff is all over the place--hopefully the clean up fairies will come while we are sleeping tonight.

Friday morning we were up early to head to Par's first pediatrician appointment at 8:45AM--as you can see, he was so scared that he would be put back in the hospital that he went undercover(s) to hide--but Dr. Farr wasn't fooled and found Par. He gave Par a good "tire kickin' and then sent us on our way.

We hurried home to meet Orlando, the respiratory therapist who was dropping off Par's oxygen tanks. He showed up with a concentrator--but we had been told that Par had to have a tank--so we had to call Kerry at Shands and figure out what to do--Kerry handled it for us--and by the end of the day we had a bunch of tanks--and the concentrator was gone. We are very happy with the tank situation because we don't feel tied to one room--we are free to go inside and outside and from room to room.

Of course, our family (my mom & dad and rusty's mom) intermittently came by to see Par--as you can imagine, they were just dying to see him in person. It was nice to have someone to hold and love on him while he was awake so we could attempt to start unpacking and putting stuff away. My grandmother was sweet enough to bring us a yummy dinner for our first night home. We got a lot taken care of (which is a nice relief)and so later that night we had my cousins stop over to have a peak at precious Par. They all washed their hands, sprayed their hands and then finished it off with a handful of Purell--I think they were more germ free than most hospitals by the time they saw Par! We look forward to the day when we can pass him around to every one.

We gave him a bath to wind down from the day--he loved his bath and it was nice to be able to cuddle with him for a while afterwards instead of having to hurry to put his leads back on as in the NICU. He ate and then fell asleep for a while. He woke up as on cue to receive his medicine at midnight. We all went to sleep for about 3 hours and then we all woke up for Par to eat. We all slept late and took our time getting out of bed this morning--it was so nice to cuddle with our family--Tiffany included.

Today has been even better than yesterday--Par has been very laid back and eating well. I wore him and his oxygen tank around the house while I unpacked--he slept soundly in the pouch--a great gift from the NICU is that Par can sleep through anything. Even so, we put him in his crib tonight for the first time--thinking he could get a peaceful nap in before he eats again (he was crying like he was really tired)--it was too quiet and he was upset so of course I scooped him up. I am wearing him now as I write the blog--I love having him right next to me--I think I'm going to be the one to have separation anxiety when he leaves for kindergarten...

I can't believe I'm already home--it still seams surreal to me--I honestly feel like I just found out that he has CDH. But looking back, I feel good knowing that I wouldn't change a thing about each step we took--going to Gainesville was the best thing we could have done.

Please continue to pray for all of Par's friends and their families--Jasmine called me today, please pray especially for her as she continues to deal with her great loss.

We are so glad to be home.
Love,
Liz, Rusty & Par

Is it morning yet?

2007-12-28T23:46:00.000-06:00

I know I said I would update in the morning--but is it morning yet?

Par has been a perfect angel--he's been sleeping, eating, pooping--just like he was in the NICU--and he slept a long time during the night--we had to wake him up this morning! Rusty didn't sleep much at all--he kept "watch" over Par and me--making sure nothing happened to us. And me, well--I didn't realize how difficult it would be to take care of Par and feed him AND to continue pumping--I know it will get easier to manage as I start breastfeeding more and more (because then I won't need to pump). Par likes his home and his "sister" Tiffany (Tiffany refuses to acknowledge Par at this point).

Words can't express how thankful we are to God for leading us to Dr. Kays and Shands/UF--the nurses and staff made our journey easier to make--giving comfort, reassurance, and the occasional comic relief. Thank you for giving us our little boy to take home.

We continue to pray for Par's friends and praise God for their friendship and their progress.

Thank you for being a part of our son's recovery.

Love,
Liz, Rusty & Par

We are Home!!!!

2007-12-27T23:59:00.000-06:00

We left Gainesville around 3:00pm and made it to Birmingham about 12:30AM--Par is doing great. We are pooped! We will update in the morning with more info and pictures once we get back from the doctor. Thank you for your continued prayers.
Love,
Liz, Rusty, Par & Tiffany

On the 2nd Day of Christmas my true love sent to me...

2007-12-26T23:35:00.000-06:00

Two portable oxygen tanks for our Par Rich in a pear tree!

That's right! We had 2 tanks delivered to us in the NICU and the instruction on how to use them today...why, you might ask? Because we're going home tomorrow!!!

We are ready. We feel very confident about taking Par home and caring for him on oxygen. We already have doctor appointments in Birmingham set up for Friday and we are planning to return to see Dr. Kays in 6 to 8 weeks (per his request). We praise God for such a quick journey--we know it is only through Him that we are leaving tomorrow with our precious baby--glory to God for our miracle!

Today was pretty exciting considering this big news. We think Par knows something is up... Dr. Kays came by to see Par--he said he was doing great and agreed that it is time for us to hit the road. He said Par would stay on oxygen definitely until our next visit--and 6-8 weeks should give Par plenty of time to gain strength and the ability to breath without help. We can't thank Dr. Kays enough for all he has done for us.

Our nurse had Par do a "carseat study" today--that involves Par sitting in his carseat for an hour while still hooked up to see if his numbers stay up--he passed! Obviously that would have posed quite a problem if he hadn't passed!

We had a celebration/farewell dinner with Josh and Tina tonight. This was planned previous to us knowing we'd be leaving--but the timing is perfect--they have been such wonderful friends on this journey here in Gainesville and we look forward to seeing them when we return in 6-8 weeks.

We asked the nurses to be a little more lenient with Par and Ella tonight--considering they won't see each other for a while--I know Par has been reprimanded many times this week for crawling over to Ella's side of the NICU(gasp!)--but I think it is only fair to let them have fun on Par's last night.

We don't know exactly when we are headed out of Gainesville--but we will definitely let you know when we have arrived home to Birmingham, Alabama!

Please continue to pray for Par's friends and specifically for there progress and God's perfect timing. We thank you for your unbelievable support to us during this incredible journey. Your thoughts, prayers, notes, emails, phone calls, etc. have meant so much to us--you've been a huge source of our strength.

As I finish this--I realize this is my last blog update from here in Gainesville--it feels like yesterday that I just arrived here--ironically I have the same feelings about leaving as I did about arriving--this is definitely bitter-sweet. As much as I hate to admit it--Gainesville has become our home and there are comforts to it at this point (uh--Shands Hospital and Dr. Kays to name a few)--so Birmingham will be another adjustment for us--but I'm sure it won't be too difficult.

Goodnight...

Love,
Your Homeward Bound Family--Liz, Rusty & Par (and Tiffany)

On the first day of Christmas my true love sent to me

2007-12-25T22:09:00.000-06:00

A Par Rich in a pear tree!!!

So, my favorite Christmas present this year (aside from Par) is the pear tree my aunt and uncle gave us. We don't know where we'll be planting it--but I can't wait--I'm looking forward to the year I can send out a card with our little Par actually climbing in our own pear tree.

MERRY CHRISTMAS!!!! Today has been such a blessing--we woke up late (obviously)and then rushed in to love on our precious little boy. He had just woken up when we arrived--perfect timing to feed him. His nurse was wearing antlers--she was very sweet--it must be hard to care for other people's children when you have your own at home--we really appreciate all the people who worked last night and today to help take care of our little Par.

Rusty and I gave Par a special "Christmas bath"--which really isn't any different than any other bath, except today is Christmas and it was especially drafty in the NICU, so Par was a little chilly--but he still enjoyed it, as always. And as always--we took a ton of pictures--but we won't bore you...

Later, Boo came to collect on her Christmas present and held Par for about 2 hours--he was very good for her--and it let me have time to go spend some time with Sally--and get a little hit of caffeine to help with the day.

Par ate, slept and pooped like a good little boy--he was pinned down by one of Santa's helpers that apparently fell out of his sack last night. Rusty and I got into the NICU just in time to save him.

Par is doing really well--we can't wait to hear what Dr. Kays thinks (he returns tomorrow)--and we are really excited about the thought of coming home--we get confirmation on the day tomorrow--so please pray that everything will run smoothly. We continue to pray for God's timing and patience.

We pray especially for Par's friends and their family today--a NICU Christmas isn't easy--but we know it will make all the rest even sweeter when we spend them at home.

May God bless you and your family on this holy day--Praise be to Jesus Christ, our Lord.

Merry Christmas,
Liz, Rusty & Par

Our Baby's First Christmas Eve...

2007-12-25T02:17:00.000-06:00

...was just lovely.

Today we spent time with Par then the four of us had a fantastic Christmas dinner in the hotel. Afterwards, Rusty and I stopped by to see Par on the way to mid-night Mass which was actually at 10:30pm. After midnight mass we went to wish Par a Merry Christmas and give him his first Christmas present. He was more interested in his bottle than he was the present.

Earlier, we met with the discharge coordinator--she gave us CPR lessons and lessons on how to give his medicine. We also tried o take him off oxygen today but it was just too soon--his saturations hovered in the mid-90's--they need to be 98 or better. So Par will be going home on oxygen. Par is still gaining weight--even with the breastfeeding--and with discharge in the future, they discontinued his fortifier that was in his bottle--hopefully he's getting enough calories now. It looks like Thursday or Friday is the big day...we'll know for sure on Wednesday.

When we returned to the hotel (1:30AM) we had dessert and opened presents with Sally and mom. Needless to say, it is WAY TOO LATE right now...around 3:30AM...We continue to pray for Par's friends and their families. Rusty and I wish everyone a Merry Christmas!

Love,
Liz, Rusty & Par

Christmas Eve Eve

2007-12-23T23:43:00.000-06:00

Par had a rough morning--we had told him Santa was coming to visit him--he thought we meant today--when he found out it wasn't today--he was very upset.

Par's oxygen was weaned today--yay! They weaned it to 100--if he continues to sat well (between 98-100) then they will try him at room air in a day or so. This shouldn't be any hold up on leaving--either we go home on oxygen or we go home not on oxygen--either way, we go home--it is so close.

Remember the last week of school your senior year of high school--that is what it feels like--I still have to leave Par each night and the nurses are still "in charge" of him--but soon enough we'll be FREE--I think even Par can feel something coming.

We thought Dr. Kays was returning today--but he isn't back until Wednesday--we hope he has had wonderful holiday (and that he'll hurry home to kiss us goodbye!)

Today was just another day of eating and sleeping--and looking at the cutest baby in the world! He did really well eating--it is hard to believe he ever had trouble--he is a pro now--still the hungry hungry hippo!

Of course, we continue to pray for Par's friends and to thank God for every blessing--including the gift of knowing His Son--we wait in joyful hope for the celebration of our Savior's birth.

May God bless you.
Love,
Liz, Rusty & Par

He got the part!!!!

2007-12-22T21:55:00.000-06:00

The shepherd boy is sick-- so Par has been called in to replace him--he has been wearing his costume all day--and practicing his lines...

"Look, up in the sky--the Par of Bethlehem" (I don't have the heart to correct him--it is because we sing "Twinkle Twinkle Little Par" that he is confused)

Par's oxygen was not weaned today (disappointed) but he had a great day and I hope that they will wean it tomorrow. There wasn't anything that kept them from weaning--it was a different nurse practitioner today and she just wasn't comfortable weaning it without watching him herself for a day--she is just being cautious--we are glad she is looking after his best interest--we are being patient--another day won't hurt him (or us!).

He has been eating well--the nurse this morning commented on how much happier he seems on the "on demand" eating plan--as far as I can tell, he has a good appetite and is keeping ahead of his minimums--I hope this sticks.

Par had a bath today--his nurse said it was time...thankfully Par still loves them! I think he likes them because he gets another view of the NICU--he is so curious about everything--keeping him visually stimulated is quite a chore--he constantly wants to be turned, propped, etc. for different views.

We worked on his standing skills today--he loves his boppy and I put him on it for some tummy time--immediately he started pushing up with his legs with a lot of force--he was pushing himself into the standing position! The best part of this is the grunt that comes with each push up--precious!

Word is out on the street about Par's departure--his NICU 3 nurses have been dropping by to see him and make me promise to come visit when we have his doctor's appointments (we'll be coming back in 6mos. and then once a year for appointments with Dr. Kays) So--although it changes each day according to our nurse or nurse practitioner--the consensus is that we will be discharged sometime before New Year's--but again, that could easily change tomorrow--we are still just praying for God's perfect timing.

Rusty's mom is heading back to Birmingham tomorrow and my mom and sister are heading down here tomorrow for Christmas--we pray for save travels for both of them.

We thank everyone for the prayers--please continue to pray for Par's friends.

Much Love,
Liz, Rusty & Shepherd Boy Par

The difference a day makes...

2007-12-21T23:43:00.000-06:00

and of course, lots of prayers.

I learned something important this morning--pray without ceasing and speak up for your child. Par's NJ tube was removed shortly after I arrived this morning, the nurse practitioner changed him to "eating on demand" and he had is MRI done at about 6:30pm this evening. I really don't know what to say. I went back and read my last post--it couldn't be any clearer how our Father really does listen to His children--we just need to ask and trust Him. Praise God for His endless blessings.

When I got there, our nurse had indicated that she had heard the discussion about the NJ tube and that they thought it should come out. Then the nurse practioner was called away and so the order was never written. That was disappointing--until our nurse said that we can't help it if he pulls it out himself...he extubated himself, he took himself off CPAP--it seems only fitting that he would pull his NJ tube out too (he actually pulls on it A LOT!) Unfortunately (or fortunately--we wouldn't want his nurse in trouble) he wasn't able to get it out...but thankfully the order finally came and so the tube came out--instant relief for our precious angel!

Par also had his hearing tested today and passed with flying colors! We are thankful but we aren't surprised--Par is SO alert and curious about every sound--he is great about turning towards people when they are talking and making eye contact--he looks so interested it seems like he has something to contribute to the conversation.

The nurse practitioner said she would probably turn his oxygen down to 100 tomorrow (keep praying) and see how he tolerates it--she indicated that he has a good chance of going home without oxygen (yay!) but still on his lasix--Dr. Kays tends to feel more comfortable knowing there is some form a lung treatment (the lasix is a dieuretic that helps keep fluid off his lungs).

We feel completely overwhelmed by everything that happened today--and Par is completely pooped, too! He loves his new eating schedule--you can tell he is way more relaxed now---even just after 12 hours. Glory to God for His gifts!

Please continue to pray for Par's friends--we ask that God will overwhelm them with His goodness and love.

May God bless each of you.

Love,
Liz, Rusty & Par

Papa-razzi

2007-12-20T23:31:00.000-06:00

Happy 7 weeks Par! Thank goodness the Papa-razzi was there to capture a billion pictures of our little baby boy!

I was frustrated again today--I don't know why I have been two days in a row--I am so thankful for how far we have come--I guess we are just so close and I am growing impatient as Par's mother. At this point, there is less dependence on the doctors and nurses and more dependence on the parents when it comes to how Par is doing. I say this because he has less of a need of medical treatment and more of a need for stimulation, love, holding, etc. from people who will be caring for him. So it is frustrating when Par is doing great with eating and the schedule they have for him seems to set him up to fail. For instance, he is scheduled to eat at 8,11,2,5--but he actually prefers to eat every 1.5 hours during the day and every 4 hours at night--I see this clearly, but there haven't been any changes made to accommodate his needs. I have tried to express this before and I did it again today. I have a feeling this time my thoughts will get to the right person. We'll see tomorrow.

The thing that set me off this morning is the NJ tube--I want it out because I can tell it is causing issues with his eating--he knows it is there and he seems frustrated by it when trying to breast feed (it seems to get in the way more then). When I asked about it being taken out (because I thought it would be gone by now) the doctor said it would probably be taken out sometime next week, but that she'd talk to the rest of the team about it. When I asked about it being removed tomorrow, she laughed and basically said when pigs fly. Par wants to know what the hold up is.

She also delayed Par's MRI for next week instead of tomorrow. At this point, we know we will not be home for Christmas. It is sad but I am glad to know that now--I can just focus on helping Par eat. Our new hope is New Years.

I was stressed today, but I still enjoyed being with our precious son. He ate well and slept a good bit. His 2pm feed was interrupted by his echo cardiogram. Strangely, the guy who did it walked up and said, "Well hey there Par! I have a friend named Par" I couldn't believe it--I was almost certain we had the only one--but nope--there are others out there--and his name also came from his initials.

Par's Gigi arrived today about 5pm and got to FINALLY see Par in person with his eyes open. He was busy eating but gave her some lovin' a little later. I was supposed to breastfeed at 11pm tonight but Par was hungry at 10pm--so I gave him a pretty big snack. I knew he would probably last longer than 11--and then I didn't know how he would even do (because he would be so tired)--plus, I didn't want to be driving home at 1am...so I left and they gave him a bottle. I can't wait to be home so I don't have to make these decisions that make me feel so guilty!

We received a precious gift from the March of Dimes today--it was an ornament made into a Rudolph out of Par's own footprint. This was done for all the NICU babies...how embarrassing that our son's monkey foot print barely fits on the snowflake!

We continue to thank God for his precious gift of this amazing child! Praise God for his gifts of love! We also lift up Par's friends and pray for their progress.

Thank you for all of your thoughts and prayers.

Love,
Liz, Papa-razzi Rusty, & Par

Par found his big toe

2007-12-19T22:34:00.000-06:00

I hesitate to give the full update on Par for today because realistically it could all change tomorrow morning. When we called this morning we had some good news--Par's bottle feeds were increased to 45cc's every 3 hours and I would exclusively breast feed for 2 of his feeds. But the biggest news was that his NJ tube had been discontinued (wait, don't get too excited yet)--discontinued for a trial period. As long as Par continues to tolerate his bottle and breast feeds, the NJ tube will be removed in the next 24-36 hours. So for right now, he still has the tube going down his nose and throat into his intestines, but it isn't actually being used anymore.

When I arrived, Par was ready for his breakfast and took the bottle like a champ--he didn't even seem to notice the added 5cc's. I can tell we are slowly getting to a full tummy because he seems less and less hungry after his feeds--especially today--he was fat and happy and fell right to sleep after he ate.

He slept through 2pm--and I finally had to wake him up around 2:20 to tell him it was time to nurse--Par's history shows that he doesn't like to be woken up and he never does his best eating in these situations. So, it wasn't the greatest experience for either of us (nothing like yesterday)--basically he latched on quickly and ate for 10 minutes. Then (per the order) I had to take him off and switch him--he did not like this and decided to scream-----loudly-----for ten minutes. Believe it or not, I remained pretty calm--I just felt bad for him. He finally realized I wasn't trying to deprive him and latched on again for about 10 minutes. Then he needed to burp and that was very traumatic because I could tell he had some gas and he couldn't get any relief--poor baby! Crying doesn't help--it just makes it worse--and he cried for about 15 minutes. I finally tried to feed him again and he latched on for about 10 more minutes and fell asleep. Good news, he ate. Bad news, it wasn't very efficient and i feel like he already used the calories he was taking in just by his crying fit.

He took is 5pm bottle without any problem--but then was hungry for a quick snack at 6pm. He then was very upset again--possibly more gas issues--or possibly because he was tired. We left him upset at shift change and grabbed some dinner. When we returned he seemed calmed and quite content. I was nervous about the weigh in--potentially he could have lost weight today--but he actually GAINED weight--our nurse seemed surprised--especially in light of what all went on today and his feeding changes.

I nursed him at 8 (only about 10 minutes)--he was very relaxed and fell asleep--so relaxed that I know he didn't get enough--which normally wouldn't be a big deal, except I don't live at the NICU and I just knew that he would be hungry when he woke up--I felt so guilty for leaving--but I knew he would sleep for a while and his nurse would make the right decision if he woke up hungry.

Rusty just got off the phone with his nurse, he did wake up about 45-hour later and was hungry so she gave him 25cc's of a bottle and he is now sound asleep.

I'm completely ready for this--it is just difficult in the NICU. It is hard to give your baby a snack or just to "see" if he is hungry because it involves finding a big screen so that you can have some privacy and not expose yourself to everyone--then you have to position the pillows just right in the wooden rocking chair--and the pillows and blankets often slide off--and then you can't use them if they've hit the floor--so this entire time there is a crying baby and you still don't even know if he is hungry or what. Anyway, home will be much easier as far as feeding/eating goes.

The nurse practitioner has scheduled a echo cardiogram for Par sometime tomorrow--this is standard for CDH babies when they are nearing the end of their stay (still not getting our hopes up). She has also tried to schedule Par's MRI of his brain for Friday--mandatory for any long term NICU 3 baby before they are discharged.

We continue to praise God for all of Par's steps forward--how great is it that our biggest issue is eating. We thank you Lord for our son's life.

We also continue to pray for Par's friends and their family.
Much Love,
Liz, Rusty & Par

PS- if you are wondering if Par got the shepherd boy part for the Gainesville Living Nativity...well...that would be a "NO"--and we had to put Par in a straight-blanket to contain his rage.

Par & His Papa

2007-12-18T21:41:00.000-06:00

Par's NJ feeds were decreased to 5cc's per hour and his bottle feeds were upped to 40cc's today and his 2pm feed was exclusively breast. He did great! He latched on immediately and ate for over 35 minutes! We are so excited because at this point--it looks like he just might be the breast eater in the nicu by the end of the week! Hopefully he'll do well tonight and they will increase his feeds to 45cc's tomorrow morning. I'm not sure if they'll add another breast feed or if they'll just keep the one at 2pm. FYI- Our little boy is topping out at over 7 lbs 5.2 oz--woo hoo!

Rusty and I had some musical visitors roaming through the NICU-they play this musical instrument called the "Freenote"--very soothing sounds. I really liked it--they let me play it too (although I still really want a harp)--Par had a different opinion on the matter...

After shift change, Rusty and I gave Par a bath--as we have said before, he LOVES his baths...especially his shampoo--Par loves the head massage his dad gives while lathering the shampoo--our little boy is so spoiled! (I can say that and not feel guilty as long as he has feeding tubes and oxygen)

After his bath, Par tried to convince us to take him back to the try outs for the Gainesville Living Nativity (I don't know why he won't just drop it!) Anyway, he wanted to audition for the part of the shepherd boy--we find out tomorrow if he got the part.

Rusty and I spent the rest of the night just being a family--holding our baby and loving on him. I just love watching Rusty with Par--it amazes me how much they love each other, or better--it amazes me how looking at them, it is like they've always known each other. (I can't put it into words--that will have to do.) We read him a book, rocked him to sleep and then said his prayers. It was easy to leave him tonight because he looked so peaceful and we know he is in loving hands.

We praise God for another day--we thank Him for the miracle of our baby and all the precious babies in the NICU. We ask that he will wrap each family with love and completely remove all the stress and anxiety the holidays can bring and just let each family be 100% there when visiting their babies. We ask only for God's perfect timing when it comes to going home.

We continue to pray for Par's friends. May God bless you.

Love,
Liz, Rusty & Par

Thanking God for Peace, Progress & Par

2007-12-17T21:42:00.000-06:00

Another great day in the NICU 2! I arrived to find Par sound asleep after his mid-morning feed. He did really well over night and his feeds were upped to 35cc's every 3 hours. He then took his 2pm bottle really well and then slept for about an hour. After he woke up, he was desperate for a mommy snack--which he took and then fell asleep for another hour. He demolished his 5pm bottle and about 20 minutes later, he was ready for a mommy dessert--which he also took really well. He did so well, I was nervous he wouldn't take his next feed completely--but much to my surprise, he did fine--a little slower, but he still took the entire bottle. It amazes me how far we have come in just a week.

I was discussing Par's progress with the nurse practitioner--she agreed that he is doing really well but was cautious about pushing him--so she wants to continue upping his feeds by only 5cc's for right now--so if all goes well tonight, his feeds could be increased to 40cc's every 3 hours. Also, because he is doing so well breastfeeding, his 2pm feed tomorrow will be only by breast--no bottle supplement on standby. This way, we can start transitioning from the bottle and hopefully be exclusively breastfeeding by the time we leave. Finally, if he continues to gain weight and does well with his feeds--the NJ will possibly be discontinued on Friday--that would mean he would be getting his feeds either from me or a bottle and he would lose the feeding tube....if we get to this point, then we are pretty much in the clear for the chance of needing a G-tube...but we aren't there yet--but now you know specifically what we are aiming for.

The nurse practitioner also mentioned that she wants to wait until he is off the NJ tube before she tries weaning him down on his oxygen more...he is currently on 200--the next wean would be to 100 and then to 50. So Par probably won't be weaned any more until Saturday--unless Dr. Kays makes the change himself. I told Par that if he doesn't want to go home on oxygen, he better start praying really really hard...

Below you will find a video of Par from today--this video may indicate why the doctors seem to be moving so slow with regards to Par's recovery and discharge plan--we clearly are not ready to take this baby home--poor kid....

Unfortunately, we had to give Par some bad news today--he didn't get the part for the baby Jesus in Gainesville's Living Nativity. We told him while he was practicing his role--he didn't take it too well. He then asked where the person was that makes the decisions--he said he had a knuckle sandwich for them.

We opened Christmas Cards tonight with Par--he seemed to love some of them...

but was bored with others...

and some he had a few jealous words for...we heard him mumble something about "my Boo"

We thank God for yet another day of progress. We feel so blessed for this opportunity to take this journey with each other and with Par. We continue to pray for Par's friends and especially for their parents--we know all to well that being away from our family and friends during the holidays is difficult...so our prayer for them is peace and joy to celebrate the coming of our Savior!

May the peace and joy of this Christmas season be with you and your family!

Love,
Liz, Rusty & Par

Saturday Night in the NICU

2007-12-16T21:45:00.000-06:00

There was a terrible accident in the NICU last night--when they were giving each baby the nightly dusting of cuteness they accidentally dumped the entire bucket on Par--and look what happened! I almost fainted when I saw how absolutely adorable he looked this morning. We feel just awful--to think of all the little babies who didn't get their nightly dusting! Oh well...

The nurses all comment how social and interactive Par is during the morning. We see him wide awake a lot of the time--but I've never seen him "socializing"--well, not until this afternoon when the nurse practitioner was walking by--sweet little Par gave a wave and said, "Hey Nurse Jenn"--I was shocked--seriously, it is difficult for me to keep all the nurses names straight.

As you may have figured out, not much has happened "new" with regards to Par and his recovery. He is plugging along--eating, burping, pooing, crying, loving, semi-smiling--all normal baby things. Hopefully his bottle feeds will be upped tomorrow and his NJ feeds decreased. He is still "standing" when I hold him--he loves to push up and back with his skinny little legs. Our nurse today advised that we should start putting things in front of his face to work on grabbing and hand coordination. We tried a couple of different toys without much luck so we have taped a picture of Ella to all of his toys and now he grabs them without any problem--I guess he REALLY misses her.

I saw Tina and Josh briefly today--I hope Ella is doing better today. We also saw John (Jayden's dad) and it seems that Jayden is doing really well--I bet he's in the NICU 2 before we know it.

We continue to be thankful for all of the prayers--especially during this holiday season.

Love,
Liz, Rusty & Par

The Exploder

2007-12-15T23:43:00.000-06:00

I do not need to elaborate on the title of this blog--only to say that Par is eating well and this really is his nickname from the nurses. We apologize to all the nurses.

Dr. Kays visited Par EARLY this morning. Apparently, our nurse had stepped out and another nurse was keeping an eye on Par. The story we heard was that Par was awake and fussing (probably screaming bloody murder) and Dr. Kays walked up to the bed and said, "What's going on Par" and Par immediately stopped crying. The nurse thought it was so amazing how Dr. Kays can have that affect on a little baby--Rusty and I aren't surprised--we continually tell Par how Dr. Kays saved his life and to be respectful of him--hearing this story makes us proud parents. Aside from that little story--we have no idea what else happened when Dr. Kays visited the bedside because nothing had been changed on any settings and there we no new written orders...we think he just stopped in to check on Par--rumor has it that he's out of town this week.

Par has found a way to keep in touch with Ella since she is on the other side of the NICU now--he fell asleep while texting.

Today has been just like yesterday--lots of eating! He still gets so mad when he's hungry and he doesn't get his food fast enough. He did excellent breastfeeding and took his bottle like a champ! We tried to capture the growl--but of course, with the camera right there he was a perfect little boy and never growled....not until Rusty put the camera away. He continues to progress (he even looked like he grew a little bit last night)--we are just so thankful. We praise God for our miracle.

This is Par being burped...not so interesting...but check out creepy monkey foot creeping out from under his little night shirt.

Today is Tina's birthday, so the five of us went out to celebrate--it was a nice dinner with lots of laughter--perfect evening with our friends. Mom (my mom) got to hold Ella today--she was so excited (she's been wanting to hold her ever since we got here)--when I asked her how it was she replied, "Ella loves her mama!"

Thank you for your prayers...we miss everyone!

Love,
Liz, Rusty & Par

Hungry Hungry Hippo

2007-12-14T23:28:00.000-06:00

I never had this game--but I remember playing it at my friends' houses--I always wanted my own game. Now, I have my own hungry hippo--his name is Par. Not sure what exactly happened from yesterday to this morning--but our little boy is a ferocious eater. He even does a little growl when he latches on to the breast or his bottle. It is really funny--Rusty is going to try and take some video of it tomorrow (of the bottle, sorry) and put it on the blog. Basically today was a GIANT FEAST--he took a bottle every 3 hours and breastfed in between--he just couldn't get enough. Hopefully he'll get an increase in his feeds tomorrow (they upped his feeds and downed his NJ this morning--apparently not enough)--the theory is not to give him too much or he might get turned off by eating--but if he is hungry--GIVE THE BOY SOME FOOD!

So, seriously--this is all we did today--plus trying to manage the crying fits because he wasn't getting his food fast enough--but it didn't bother me a bit--because he is the cutest crier every!!!

We saw Jasmine and Chris again today--we are still praying for them. They were on the way up to the NICU to see Tina and Josh. We asked them how they are and Chris replied they are just taking it one day at a time. We are still in awe of their strength to come back to the NICU--our prayer is that they will cling to God during their times of pain and sorrow--as well as take joy in knowing their son is with our Father in Heaven for eternity.

We thank you for your prayers, emails and notes--we are humbled by so many caring and loving friends and family. Thank you.

Love,

Liz, Rusty & The Hungry Hippo Par

"Blessed are they who mourn

2007-12-13T18:54:00.000-06:00

For they shall be comforted." Matthew 5:4

As I have said before--or maybe I haven't--but I know I have thought it about a zillion times since I've been here--our God sees the entire masterpiece complete--from beginning to end. He knows that every little thing that happens in our lives--it is all part of His plan--His plan for good. It is easy to lose sight of this when we are faced with sadness and the loss of a precious innocent child. Chris and Jasmine came to see us in the NICU 2 today--they came to tell us that they said goodbye to Jonathan yesterday afternoon. Our hearts were breaking--they still are--I know Jasmine and Chris are so grateful for everyone's prayers for them and their little boy--I ask you to continue to pray for them as they prepare to return home. Rusty and I are humbled by their strength--they wanted to see Par--I'm glad he was awake for them. Of course I didn't know what to say--no one ever does--and now I don't know what to write. I just wish I could show them a glimpse of why this had to happen--but I don't know that either--I do know that Par will be told about Jonathan--one of his first friends--for 23 days they were right next to each other--both fighting this difficult fight. Rusty and I will make sure that Par knows how strong Jonathan's mom was during this time--how she was an example to me for incredible hope. The story of how they even ended up in Gainesville will not be forgotten.

Father, we praise You for Your glory--we seek You in all things, we seek You in the loss of our friend Jonathan. We ask that You surround Jasmine and Chris with peace and comfort--we ask that they may feel the love of every single person praying for them right now. We know You have been glorified in the life of Jonathan and in the dedication of Jasmine and Chris as loving parents. We thank You for the opportunity to have our paths cross with such special people. We also thank you for Dr. Kays and ask that you will give him an understanding of Your plan for baby Jonathan's life. We praise You for the gifts you have given Dr. Kays and we pray he will seek You in his own times of joy and pain. Amen.

Par has done well today--he focused on eating for most of the day--he has a new bottle that really helps him--and his breastfeeding was great. We continue to wait--and we are trying to wait patiently. We are just grateful we are to this point and we know it only because of our merciful Father. He has been enjoying his new worm--we are told he stares at it a lot--he seems to love the face...we were able to catch him staring at it later in the morning--they were right--he seems very intrigued by something, huh?

Mom helped me give him a bath today--he was a precious little monkey--a little slippery too! Believe it or not, he went through all of his clean clothes in 2 days--little boys sure are messy! Rusty was sweet enough to wash them this afternoon--unfortunately, Par had to go naked until they were cleaned--but he didn't seem to mind. In fact, he did his "baby Jesus" imitation--he really wants to be picked as the baby Jesus for the Gainesville Living Nativity--we told him Jesus wasn't ever on oxygen or a feeding tube--he didn't seem to understand--he just kept practicing.

Rusty and I went to see Par this evening--we fed him and put him to sleep. He was pretty hungry--which is good--and now he will sleep soundly (we hope!) We won't need to worry about Par and Ella getting into any trouble anymore--Ella was moved to the other side of the NICU--we are very sad--but from what we understand, it is in Par & Ella's best interest--this way they each get a nurse with fewer babies--which means more attention.

(Rusty is wearing a mask because he feels a little under the weather--just to be on the safe side).

We are pretty tired tonight (what is new?)--we feel drained and we just want to go to sleep--we're ready for a new day. We thank you for your prayers for our son and our friends here in Gainesville.

Much Love,
Liz, Rusty & Par

What did you say?

2007-12-12T23:16:00.000-06:00

In our particular journey, there aren't too many "good" surprises-- in fact, most of the surprises are bad--"surprise, your baby has CDH" and "surprise, the kidneys were up in the chest cavity" or "surprise, we had to use a larger patch because there was no diaphragm in the back"--yep--lots of surprises--but just too few good ones...but when the good ones show up--it is glorious.

"Give thanks to the Lord, who is good, whose love endures forever." Psalm 106

Our merciful Lord has let the "cup" of reflux pass us by. We had the upper GI study done today at 1:30pm--the results came back quickly and we have been told that Par doesn't have any sort of reflux issues at all. He does have a slowing of the esophageal--this is mainly from the trauma of the tubes going down his throat and him not being able to utilize the muscles--it should work itself out on its own through regular eating and swallowing. We were shocked when we heard the news--literally shocked. Rusty thought they said the results weren't in--I thought they were telling us it was really bad--but all she said when she approached us was "No reflux." I replied, "What did you say?"--and she repeated it. I was stunned. Miracle. Praise God. Please note that God has now answered every prayer from the post on Monday night--amazing.

So what does this mean? It means that Par will not have the nissen surgery for reflux and he won't need to go home on a feeding tube as long as he can eat enough calories through a bottle and breastfeeding. It also means that it is time to get serious about his eating--the nurse practitioner says that starts Thursday mornings with mandatory bottles every 3 hours, no matter what. If I am around, I can breastfeed him instead of the bottle. This could be a fast process...or it could be slow...we don't know. So for all of you out there wondering if we could be home for Christmas--we just have no idea--it is pretty much up to Par--and he REALLY likes all the attention from the nurses...so we'll just keep praying for God's timing and keep enjoying our baby.

His upper GI study was done at 1:30pm and lasted about an hour. We watched him get wheeled away in his crib--he loved going for a ride around the hospital. We took pictures for part of the way, but then they got on the elevator.

We were so excited for him and just played with him the rest of the day--very fun! He is pushing up (trying to stand) with his monkey feet--he loves to be up--either standing or sitting up--he just likes to see what is going on. He is holding his head up a good bit on his own--but you can tell when he is tired because his head will flop around. He was very lovey after his test--but they said he didn't cry a bit--Elaine was with him the entire time, so I'm not surprised--he loves her--she is so soothing and calming.

When we went back to see him after break, he was sound asleep--so we said our prayers and kissed him goodbye.

During his upper GI study, a nurse from NICU 3 wanted to introduce us to a new CDH family--their son was born about a week ago. We met John and Hope and their precious little boy, Jayden. He is doing very well--they loved that I wanted to put them on our blog to pray for them--so please add them to your prayers--they have 3 other children, so I just pray that Jayden's recovery is quick so they can get back to their family.

Ella had a good day--you should check out her blog to see her big change. We saw Tina and Josh tonight playing with their precious baby girl--we continue to pray for her progress.

We didn't talk to Jasmine today--we saw her from afar standing at the bedside. We continue to lift Jonathan up in prayer, as well as Jasmine and Chris. May the Lord be their strength during this time.

I forgot to mention that Par's PICC line was removed yesterday--so he is free from intravenous lines--yay!!!!!

Again, Rusty and I thank God for such a blessing with Par's upper GI study results--a true miracle.

Blessings to all.

Much Love,
Liz, Rusty & Par

Par "Kobayashi" Rich

2007-12-11T22:06:00.000-06:00

If you are up on your important sports heroes--you know that Kobayashi is the six-time hot dog eating world champion--and with the way Par tossed back FOUR bottles with 19cc's each in a single day--Kobayashi might soon have some new competition! We are so proud of Par--he was completely pooped from all the hard work--but it definitely shows a lot of progress.

He is still showing the signs of reflux--so Elaine came and worked with us during one of his feeds today and changed some things up to help make him more comfortable while eating. She noticed that he may be dealing with some esophageal issues--possibly that the muscles don't move the liquid down fast enough. She indicated that the upper GI study (that we are having done tomorrow) will let us know if that is part of the problem. I can't get over how patient Elaine is with him--we are so thankful that she has been here to help him. Par also had a very successful breastfeeding session--he's becoming an old pro!

Most of the day consisted of us feeding Par or playing with him--Rusty was finishing up a project, so mom and I had him to ourselves all day. He is back to his normal self and was our sweet little boy the entire day--but with quite an appetite.

We are praying the results of the upper GI study will help determine a clear cut course of action for getting Par eating and getting us home. I know I've mentioned "getting home" in a few of the recent blog posts--but that is where we are at this point--barring no other complications--once we get the feeding figured out--not much else is keeping us here--we might or might not go home on oxygen--we are SO close...Thank the Lord for Par's recovery--Rusty and I know his recovery has been quite remarkable (faster than normal)--it is only through His mercy.

Chris (Jonathan's dad) is back in town and was able to hold Jonathan for a long while today. I spoke with Chris and Jasmine during shift change--they were explaining that Jonathan may be weaned off ECMO tomorrow. We ask that God--our Physician of Physicians-- will miraculously heal Jonathan's body so that all may see His Glory. We continue to pray for peace within the hearts of Chris and Jasmine during these next few days.

Thankfully, there hasn't been any tom-foolery between Ella and Par. She's been the sweet little girl as always and Par was a perfect gentleman...although we are curious how one of Par's mittens ended up under Ella's crib...hmmmmmmm......

Thank you for your prayers and comforting words....
Love,
Liz, Rusty & Kobayashi Jr.

Welcome to the Neighborhood!!!!

2007-12-10T22:57:00.000-06:00

Par has a new neighbor...you guessed it! Ella moved in right next to Par. We are hooking up the paper cups with string as we speak so they can talk to each other in their beds. Seriously, we've already had "the talk" with Par--He and Ella are just TOO young to be getting serious and they are not to be alone together--thankfully we are able to have 24 hour chaperones!

I could tell that Par definitely felt better today--although he is not all the way back to normal, he does seem to be feeling better. He was a rock star today when it comes to breastfeeding--he latched on immediately and did well. He has a tendency to stop and just sort of hang out--but it doesn't matter--this is great progress. Tomorrow I hope to have him breastfeed at 3 different times. The nurse practitioner and I spoke for a while about his feeding today--she was disappointed that he wasn't offered the bottle very much over the weekend and I was frustrated because of the same reason--I told her I didn't feel right trying to BF when I know he needs his feeds from the bottle (only because BF takes a lot of time--we can work on that in Birmingham, but getting him on the bottle and off the feeding tube is our ticket out of here). She completely agreed and wrote an order that upped his bottle feeds without interfering with my BF attempts. The not so great stuff--Par didn't do well with his bottle feeds today. He had some major reflux signs (he never does with BF). All he needs to do is take one little suck and swallow and he would turn red, eyes water and he would arch is back and then spit it out. It was so hard to watch--he has never acted like that before--but he also has never had so much in him--so maybe we've reached our limit. Whatever the case, we will have the upper GI study this week (Thursday) to see the severity of his reflux--then Dr. Kays will tell us the game plan for getting us out of here!

As always, I left for my ritual pump. I have been doing it at bedside--but Ella had just moved in and Rusty and Tina were chatting--so it was just easier to run to the pump room then try and get screens and stuff. Anyway, while I was gone--Dr. Kays came by! Of course--the one time I leave! I was glad Rusty was there--Rusty asked Dr. Kays to look at his abdomen and when he (Dr. K) undid his diaper--the protrusion "popped out"--Dr. Kays said, "Isn't that a neat trick!" Thankfully, he said he isn't worried and it should fix itself. That is good enough for us--we aren't going to worry about it anymore--although we may video it popping out and put it on YouTube and see how famous we can get. Dr. Kays also turned Par's oxygen down to 200 (was 300). He also chatted briefly with Rusty about his feeds-but that is about it.

Boo is back! My mom (sweet sweet mom) made the long trip back down here today and just in time! Par had ALMOST forgotten who she was--but thankfully mom made it and he DEFINITELY remembers her now. Of course, she stood there trying to be "so good" so she would get to hold him--and at this point, I'm glad the hospital puts the alarm bracelet/anklet on the babies--because the look in my mom's eye said that she just might take my baby and run. Luckily, she sat in the rocking chair next to his bed and just held him and rocked him. She only slipped up and called him "my baby" (like saying he was her baby)once while loving on him--I'll let it slide this time--but I have asked the nurses to keep an extra eye on her!

Every day I make a deposit of milk from the night before when I come into the NICU--I've been doing this since the day Par was born. Today I was told that I have taken over both the freezers for the NICU. They took me to see it so I could understand the magnitude of the situation. I was in awe. I have never felt more proud of all the hard work pumping than seeing hundreds of bottles of milk made by me. Bad news...it would be impossible to get it all home--but I'm going to take as much as I can. Good news is--I will be able to donate some of it--so I feel really blessed to have that opportunity to help out some other family who needs breast milk--pretty cool to think about--the world is sort of making full circle--back in the days of Jesus, if a mother died in childbirth, another mother would take the baby and nurse him until he was "of age"--4-5 years old! Can you imagine nursing your neighbors child for 4-5 years....anyway...

I had the very special opportunity to speak with Jasmine at Jonathan's bedside--she was holding him! She had been holding him for several hours--he is still on ECMO and I told Jasmine we are all praying for this precious child. Please understand, holding your baby while on ECMO is not a common occurrence...I ask you to pray for Jonathan and that God will heal his little body and allow him to come off ECMO and make a full recovery. I also told Jasmine that we are praying for her--there is nothing like holding your baby for the first time--I ask our Lord to keep that feeling close to Jasmine's heart in the coming days.

Rusty and I continue thankful for our wonderful friends and family who keep our spirits up, ourselves in check & our energy going. Of course we want our baby healthy and with us--but it is because of you that we want to come home--we can't wait to share him!! (but I still probably won't let him out of my arms for the first 5 years once we get home, so don't get your hopes up or anything).

Praise God for answering every single prayer but one from yesterday's blog entry--we'll find out about the reflux one this Thursday!

Much Love,
Liz, Rusty & Par

Long day.

2007-12-09T23:58:00.000-06:00

Even cute babies have bad days. Nothing serious happened--I'm just hopeful for a new day tomorrow. Par wasn't himself--seems a little congested (not in his chest--but in his nose and eyes)--he cried/fussed a lot today--he just didn't seem to be able to get comfortable. Rusty and I are thinking that the Reflux Monster might be starting to rear its ugly head--we are praying it won't. Par has had a lot of changes in the last 24 hours--so hopefully he is reacting more to the changes and isn't actually having reflux issues. He had his fentanyl discontinued today--so if he tolerates it over the next 24 hours--then he'll have his PICC line removed--and then he is free of wires going into him!!! (his feeding tube and nasal canulla don't count). His feeds were "ok" today--but he only latched on once today--that was my only opportunity actually--I tried again tonight, but he was sleeping. I appreciate all the friendly advice on breastfeeding in our comments section--but keep in mind, Par still has a serious condition that is being monitored by his doctors--unfortunately, his feedings have to be closely monitored (and other than breastfeeding--measured precisely)--his tummy can only hold so much--so we can't have "free feedings" and just try any time he is awake--the written order says we can only try when he is "awake, alert and actively showing signs of hunger"--that way we know it won't hurt him. Also, I can't let him eat as much as he wants, I have to take him off after a while for the same reason. Just because his tummy is back where it is supposed to be doesn't mean it works properly--this is why we are concerned about reflux.

I was glad I was able to be with Par and just hold him today--especially since it seems like it was a rough one. We are also concerned about his tummy. It seems that his stomach is starting to protrude from the abdomen more than in the past. We've noticed that it is mishapen (just part of it) but today it looked almost cartoon like with the bulge. Unfortunately, Dr. Kays is out of town but will be back tomorrow. When the surgery team made rounds tonight I showed them what we were concerned about--he said he would let them (Dr. Kays and his partners) know my concerns but that he thought they were already aware of it. Hopefully they have noticed and aren't concerned...I guess we'll know tomorrow. We ask that you will pray it is nothing--we really don't want another surgery.

Right now it is about 2:30 AM--I'm really tired and not feeling very energetic for writing a super-entertaining blog entry. I just want to go to sleep (but I can't because I have to pump in 10 minutes) and wake up refreshed tomorrow so I can be there 100% for our precious baby. Lord, please give me a peaceful nights rest. I thank God for my husband Rusty--I can't imagine this journey without him or with anyone else.

We had dinner with Tina and Josh tonight--it was good to catch up. Ella is doing well--her CPAP is possibly going to be weaned even more sometime soon--we pray she tolerates it well--we pray she will continue to progress in her feedings as well. We thank God for our friendship with the West family--they are a great strength for us here in Gainesville. We continue to pray for Jonathan and Jasmine.

Good night to all.
Love,
Liz, Rusty & Par

Party Pooper

2007-12-08T23:12:00.000-06:00

Precious, huh? Seriously--cutest baby in the NICU--but Par was very very mischievous today--and I can guarantee you that "smile" is because he is most likely replaying our moments from this morning when Rusty and I arrived.

Par had just woken up a few minutes before we arrived--he was very content and just looking at his mobile. While Rusty and I talked to the nurse about his night, we stood by his bed gazing at our angel. All of the sudden, loud noise from the bum area--followed by lots of loud noises. Well, because Rusty and I are the most immature parents in the NICU--we started cracking up--it was so funny. So, as a good mom, I waited a few minutes and went to change his diaper. Halfway through changing him, he made a second deposit. Again, Rusty and I laughing. Well, this happened 5 times--no kidding, I had five diapers stack one on top of the other by the end--and he just laid there with this innocent look on his face--like, "Who? me?"--well, nothing like this happens without a mess...so it was definitely bath time--and time to change all his bed stuff too. Our poor nurse, she just stood there--I'm sure thinking that our baby doesn't have a chance with us as parents! We are now officially christened as parents by our little "party pooper."

It was his first "real" bath--and he didn't cry at all. He really seemed to enjoy it--although, he slid all over the place! After his bath, we attempted breastfeeding--and we had a VERY successful feeding--and then again tonight. I am so excited!!!!! At this point--along with everything Elaine taught us/him--success comes when he is WIDE awake--I just wish I could be there all the time so I could take advantage of it (today the Nurse practitioner wrote I can breastfeed as much as I want-before it was once a day if successful). His food is now coming exclusively from his NJ tube and from a bottle or me. He gets his medicine through his NJ tube. He is still on the fetanyl drip--but hopefully that will be gone tomorrow--it is now the only IV drug--so the PICC line should be out of here sometime soon.

After his big lunch this afternoon, he said goodbye to his dad (Rusty left to catch up on stuff) and decided to take a nap. I fell asleep too and the nurse took a picture. (Note to self, extend chin and apply lipstick during naps in the NICU). I'm glad she took it--it barely captures the joy I get from napping with him--but it is a nice glimpse.

Rusty and I were talking about how it gets harder and harder to leave him each night. We are so anxious to leave Gainesville with our son--but we know that our time here is for a purpose greater than that of Par--and our own agenda is nothing to the bigger picture that our Maker has--we ask that we can be still during this Christmas season and know that our God has us where He wants us right now. We know that everyone in the NICU wants to be home by Christmas, we ask that they will all have a peace in God's perfect timing for their little one.

We didn't see or hear anything from Par's friends today--but we continue to pray for them.

May God bless each of you.

Love, Liz, Rusty & Par the Party Pooper

Spoiled little Rich kid

2007-12-07T23:59:00.000-06:00

So I bet most of you checked the blog wanting to see updated pictures. I can't blame you...we've definitely spoiled you by putting up lots of pics with each post--and let's be honest--Par's been doing well, no real immediate danger and no one really wants to read about Par's progress with breast feeding. You've been spoiled--and we plan on continuing...We just can't help ourselves--we literally take about 50 pictures a day (today 125). We are still completely in awe that God has chosen us to be this little boy's parents--He must know something we don't!!! Anyway, I was thinking today...does this blog get me out of having to make a baby book? Hmmmmm....

But of course, Par is the one who is really spoiled. I know before I said I didn't want to get to the point where he cries to be picked up--too late. I can't help myself--I just can't get enough of this precious baby!!! I held him from 11am to 10pm today--with just a few breaks (lunch, dinner,shift change & when he was in his swing)--I even pumped with him in my lap (he was sleeping). He slept on my chest for about an hour and then in the cradle position for another hour--and we played and sang Christmas songs--the day just flew by!!! So...he loves being held and cuddled--and he definitely cuddles back!!! The nurse had to pry him out of my arms to do vitals and weigh him tonight (he finally broke the 7 lbs mark!!!! woo hoo!!!)--so after she weighed him she held him on her chest and just said "I just have to get some sugar--I can't give him back"--he is such a sweet and gentle little guy--you can't help but love him. It doesn't hurt that he is self-soothing and doesn't scream half the day like a lot of the other babies.

We are hoping to see some BIG changes tomorrow--they are supposed to change his nutrition to 100% breastmilk through his NJ tube tomorrow and bottle feeds/breastfeeds. That is a big step. Elaine worked with me again today on breastfeeding--we spent about 30minutes going over some stuff and practicing with Par--he seemed interested like last time, but just couldn't quite do it. About 5 minutes after she left, PAR LATCHED ON!!! He stayed for about 5 minutes and seemed very happy and content. I hope he can do it again tomorrow--I wish I could try at every feed...but because of his CDH and stuff--we have to be careful not to get to worn out because he'll end up using too many calories and won't have enough energy to breath. Just another ball to juggle in the air--a big reason why this takes time.

We continue to pray for Jasmine and her son Jonathan. We thank the Lord for his goodness and mercy for each of us. Praise God for his promises! We also thank God for Josh, Tina & Ella who have constantly inspired us to seek the Lord in their words and example--having a blog takes "accountability" to an entire knew level! We thank God for the opportunity to share our journey with so many--sometimes it is therapeutic, sometimes just fun to share exciting news, sometimes great to vent--sometimes it seems like homework--but all the time, we are completely recharged when we receive comments, emails and phones calls about our little boy's blog. We give all the glory to God for such a remarkable tool.

May God bless you and your family during this mad shopping season (by the way, I finished my Christmas shopping in September)

Much Love,
Liz, Rusty & Par the spoiled little Rich kid

A long day at work...

2007-12-06T21:38:00.000-06:00

Par worked SO hard today. He worked on his eating and did very well (although, it is still far from being "mastered"). We also spent some time on breastfeeding--again, he did well and didn't get as upset and frustrated as he has before. I could definitely see progress which is reassuring. I "practiced" breastfeeding on my own today (without Elaine) which was hard but it was good that Par and I could just try it out by ourselves.

Par took lots of little cat naps today--when he was wide awake, I put him in his swing and he loved it--and of course, 10 minutes into it--he fell asleep for a LONG time. We had a lot of visitors (nurses) who came over to see Par and talk to him--he is so alert when he is awake and he looks like he could have a conversation--isn't it precious how he raises his eyebrows and his little forehead wrinkles!

Par's fetanyl has been weaned even more and his "pretend food" was also weaned and his NJ feed (breastmilk) was upped--he'll possibly be on full breastmilk feeds by sometime next week--and then MAYBE we can get rid of the PICC line.

Today was also heavy--I ask that you will continue to pray for Par's friend Jonathan as he continues his fight. Please continue to send up prayers for Jasmine--we ask that God will shower her with peace as she continues on this journey--our only certainty is God's love--I pray that Jasmine can find comfort in His arms and strength in His Word.

We continue to thank our Father for the gifts of Jonathan, Ella and Par. May they continue to progress in His time. May we find peace in knowing that He knows what is best for us.

Thank you for your prayers for Par and his friends--I can't imagine this journey without each one of you--I've said it before--we feel each prayer.

Liz, Rusty & Par

Stretchy Par

2007-12-05T23:50:00.000-06:00

We arrived to a peacefully sleeping baby boy. Of course, we REALLY needed our Par "fix"--so we stood there--staring at him and "wishing him awake." It worked! We then got to see Par stretch for like 5 minutes--seriously--he woke up and stretched then went back to sleep--then woke up--stretched some more--sleep--up--STRETCHING FOR A LONG TIME--sleeping--then the final stretch which started with his head going from side to side and moving to his arms, arching of his back and the flailing of his legs--ending in a "pick me up mommy" cry for the grand finale. We would gladly pay money to see that show again--absolutely precious!!!! All of the stretching pictures are blurry because he was moving--he also did some facial contortions--Rusty caught the end of this one.

The transfusion went well--Par was definitely pinker today from the extra blood--and more alert. I took advantage of this alertness and Elaine (OT/Lactation) met with me again and we made some real progress with breastfeeding. Although we don't "have it" yet--this time I could even see that Par has made good progress. It was definitely reassuring and gave me more confidence in what we are trying to accomplish. On top of that, he has done really well with his bottle feeds and has been upped to 12cc's (was 10cc's) every 3 hours--his NJ feeds have been upped to 9cc's/per hour continuous feed and his IV fluids have been decreased (YAY) as has his fentanyl.

After all the work we did--Par and I took a long nap--it was great--we both really slept. I love falling asleep with him on me--it just feels like he is supposed to be there--it is amazing how soundly he slept and his breathing (which has been a little fast) actually was much better because he could feel my breathing. God really knew what He was doing, huh? Praise God for His creation-- it IS GOOD!

Rusty and I put him to bed a little earlier tonight--trying to learn stuff really takes a toll on his little body--he probably woke up 5 minutes after we left, but we like thinking he sleeps when we are gone and is only awake when we are there--there is a certain comfort living in fantasy land. Anyway, after we read his prayer and kissed him goodnight we went back into the waiting lobby outside of NICU 3--I wanted to complain about something rather petty (but it did feel good to get it off my chest, no matter how petty)--while in there, we saw Jasmine and she filled us in on Jonathan. She asked us to pray for her--We don't know what the Lord has planned for Jonathan--but I ask you to pray for peace within Jasmine's heart as a mother--peace for knowing that our Father, her Father--has a very special plan for her and her son. Jasmine's strength is amazing--her son is very blessed to have her at his side. Rusty and I are in awe and feel humbled by her spirit.

May God bless each of you.

Liz, Rusty & Par

Eating and Transfusing

2007-12-04T23:00:00.000-06:00

Before I begin...doesn't this picture sort of look like me? I know he looks like Rusty--I am not discounting that--but doesn't this remind anyone of me as a baby?

As I write this blog, precious little Par is receiving his first (hopefully last) blood transfusion. He will receive approximately 2 ounces of blood in about 4 hours. This should help with his anemia and hopefully he will be like a "NEW PAR" tomorrow with a lot of energy.
When we arrived this morning, we thought he had already been given the transfusion because he seemed really energized and had taken his oral feeds really well the past few times--we found out later he had slept for 5 hours straight and was just REALLY REFRESHED! The good thing about his "mini-hibernation" is that it kept him awake for a good part of the day and we were able to work on breastfeeding for a long time. Elaine (OT/lactation) was great and VERY patient (I don't know how she does it)--she was so supportive and after about 45 minutes of working with Par he started figuring things out. Elaine seems to think that Par already has the tools and he is just getting frustrated. Something is telling him "I'm supposed to be doing this, this feels right" but he just can't "get it"--by the end he was figuring it out but had worked so hard that he fell asleep while attempting to latch on. Elaine reassured me that this is HUGE progress and that it is a blessing that he is so interested in breastfeeding--he gives all the cues for wanting to--hopefully over the next few days it'll "click" before he gets too tired.

On top of that, he's been eating all 10cc's of his bottle of breast milk at each feeding--and he actually shows hunger cues beforehand and immediately calms down when the bottle touches his lips, so he knows that the milk with satisfy him--another big deal! As I have said, this is a slow process--but hopefully he'll be upped on his bottle feeds.

He's been enjoying his NJ feedings--I can't tell you how happy it makes me to see all my pumping put to use! Please pray that he can get up to full feeds by the end of the week and that he'll progress nicely with breastfeeding. My ultimate goal is for us to go home with him being exclusively breastfed--although this might change if we find that he is having reflux issues--but so far, so good--just keep praying.

Rusty and I gave Par a bath today--he cried a little bit--but he loves to be clean--you could tell he felt so much better. After his bath, we cuddled for a long time--I just enjoyed breathing him in. He is such a sweet little boy and you can tell he loves being loved on. Watching Rusty love on Par feels amazing, but watching Par love his daddy is even more amazing. Praise God for the love of a child!

So here is something pretty funny (a little scary)--the picture above is of Par and me cuddling--we cuddled for a long time. Funny thing is--we didn't notice that his nasal cannula had come out until we saw the pictures tonight. It pops out a good bit when we are moving him around, so I am sure I noticed when I moved him into a cradle position and just figured it popped out during the transition--but now we have proof--it was out before then--and his saturations never went down--maybe we'll be off oxygen before we come home--wouldn't that be awesome!

Rusty and I fed Par this evening and then I held him for the first hour of his transfusion to keep him calm--they have to check his vitals every 15minutes and they (babies) tend to get upset being bothered so often, so holding him kept him relaxed. He eventually fell asleep pretty hard--so hard he didn't even notice when his blood pressure was taken (he usually cries pretty hard)--so we felt that was a good time to leave. We put him in his bed (Rusty made a cozy little "nest" for him) and said our prayers and then left. We pray that he'll feel 100% tomorrow.

We praise God for the work we can see in our son's life and for what He has in store for us in the future. We know that God sees the entire picture and we trust in His will for our lives and our son's life.

May God continue to bless all of our friends and family and those we do not know. We praise Him for the goodness He has shown through those we've met here in Gainesville and those we've met through our blog.

We lift Par's friends up in prayer--precious children of God--may angels surround them as they sleep tonight and may they wake stronger as they heal in God's time.

Much Love,
Liz, Rusty & Transfused Par

Patience II

2007-12-03T21:24:00.000-06:00

I arrived this morning to find Par just waking up--and with an NJ tube in his nose. It was upsetting--I was all prepared to patiently give Par is 12pm bottle feed--I just knew he was going to do well--and here I see they have already placed the feeding tube. I was very discouraged and a little confused--I thought they would wait a little longer. The nurse practicioner came by and spoke to me at length about about the placement of the tube. She explained that the sooner he is off his nourishment via IV drip--the sooner we are out of here. Plus, it is important that they get him up to full feeds--hopefully by the end of the week. The good news is, I can still keep on giving him a bottle and working on breastfeeding as long as he is alert, awake and interested. This calmed my heart and actually took the pressure off.

The nurse practioner also gave us some other not so good news--Par needs a blood transfusion because in layman's terms, he is anemic. We've avoided this until now--and I sort of thought we were past things like this since we left NICU 3--but CDH babies don't go by any sort of rules--so I don't know why I'm surprised. He should get the transfusion tonight--and hopefully he'll feel like a new baby tomorrow.

On a happier note, the OT/Lactation consultant met with me this afternoon and talked to me at length about what I can expect from Par (she has experience with plenty of CDH babies). After we talked, she watched Par try and breastfeed and then helped with positioning and such. It is very hard because I have to be careful of his wires/IV-- so I can't do what feels natural immediately because I have to check that it won't hurt him--so with her help, we could get into a position quicker while he was still interested. He did latch on for a little while--but he needs lots of practice because of all the tubes he's had in his mouth, he has forgotton some of the things he is supposed to know how to do. She showed me some things I can do with Par to help him "practice" and she is going to meet with me again tomorrow during one of his awake/alert times.

<

When I bottle fed Par this evening, he ate like a champ! I was so proud of him. I am praying that Par will continue to progress in feeding with a bottle and with nursing. I know that patience is important--we continue to seek the Lord's timing for Par's recovery.

Par's friends are still in NICU3--we are still praying for the healing of their little bodies. We ask that you will continue to lift them up in prayer.

Much Love,
Rusty, Liz & Par

Patience...

2007-12-02T22:33:00.000-06:00

As I sat down to write the blog I had a lot of things on my mind that I was ready to get out and into cyberspace--and then I uploaded the pictures from today and I have fallen in love with my son all over again--and with that--I really can't remember what I wanted to write--all I know is, I want to be with Par 24 hours/day--and right now that just isn't possible. It is tough--especially now with so much interaction--I know he isn't old enough to know what it means when we leave--but it is bitter sweet to know that I can walk in the NICU 2 and calm his crying just by my voice when the nurses have been trying to calm him for the previous 10 minutes. He needs his mama--Rusty and I need him--and today God has shown us that we need patience--we need to trust His perfect timing--because the truth is--right now all I have is a repaired CDH baby who still can't breath on his own and doesn't know how to eat--that won't last long at home--no matter how much we love him. So, we have no choice but to trust in God's timing and just to go with the flow--and to seek Him when it "seems" more than we can handle.

Ah yes...I've remembered one of the things i wanted to write about...

My poor baby is not eating well. The frustrating part is that I have seen Par eat--
I have seen him eat vigorously--and swallow without problems. He has shown such progress--and then today he seemed to be very disinterested and slept through 2 feedings--he just wouldn't wake up--even with the bottle in his mouth. The nurse tried to wake him too--he was just tired and not hungry--or not hungry enough. (He is just like his dad!)People keep telling me this takes time--I think it is just now sinking in--I see now why people say this is so frustrating. The first hurdle of CDH is something we have control over--fixing him. The second hurdle is something that only the baby has control over--and you can't reason him through the exercise of "sucking, breathing and swallowing"--he is just supposed to figure it out. So right now, I offer this problem up--I pray that I can have the patience to be diligent in helping Par learn to eat. We have an occupational therapist/lactation consultant meeting with me possibly tomorrow to help me breastfeed and watch how Par takes his bottle--I pray she will have some answers on how to make all of this a little easier.

We gave our little stinker a bath today--Rusty washed his hair while I scrubbed his little body! In the pictures you may notice that below his chest it sinks in--this is called "Pectus" and is commonly associated (is an effect of) CDH mostly in boys. Because his lungs are small and his diaphragm didn't form correctly in the first place, his breathing draws him in just above the sternum causing the pectus. It may or may not get better as he gets older. There is a corrective surgery he can have later (10-12 years old)because sometimes this can cause breathing issues--but most people have it fixed for cosmetic reasons. We spoke to Dr. Kays about it (along with CDH-he is also proficient in Pectus repairs)-he isn't worried about it at all--he says it probably won't have any sort of effect on Par's breathing. Dr. Kays responded like it was a "nonissue"--so we feel much better now (we started noticing it after his surgery and it was getting more and more obvious). FYI-there are plenty of people who have Pectus and never had CDH--so you may have seen it before--pretty common--1/300 (well pretty common compared to CDH).

Well, the NICU 2 that was SOOOOO empty last week is now filling up fast. We already have been moved--mainly because we have so much stuff and I am there all the time--so they moved us around the corner where we have a little more room--so it is a nice change actually. Par didn't love the move--I don't blame him--they pile everything in his bed and cart him around the room and then make a bunch of noise setting everything back up. Hopefully, our next move will be home.

Speaking of home--mom left with her dad and sisters early this morning and is now sleeping comfortably in her own bed. I can't express how blessed I have been to have her here with me--she is the most loving and caring mother--I hope I can be that for Par. I miss her terribly--and I know Par does,too.

More and more I am starting to think that Par isn't really my baby. It appears that he may be a clone of Rusty. That just makes the most sense. It is really getting to be creepy--each day that goes by, the more Par looks like Rusty. I realize this is completely normal for a child to look like the parents--I just never imagined how similar two people can look with a 32 year age difference.

I haven't seen any of Par's friends or heard any updates lately (because we are not in NICU 3 anymore)--but we continue to pray for them and their precious families. We praise God for using Shands Hospital as an instrument in the healing of these children.

May God continue to bless each one of you. We thank God for today and we look forward to tomorrow--may God grant us patience so we may see His work.

Love, Liz, Rusty & Par

Par's One Month Birthday!!!!

2007-12-01T23:21:00.000-06:00

Above is a very special poster made by Par's Aunt Sally (sophmore in college)--as people may know--Joe (my brother) brought it to our attention that naming our son "Par" was like naming him "Average"--so in an effort to clear everything up--Sally gave us this great sign. Amen, Sally--you said it girl!

Today we celebrated Par's 1 Month Birthday with 13cc's of breast milk every 3 hours! He had a little trouble because he was pretty much asleep during 2 of his feedings--his final feeding at 9pm he was zonked out and he didn't drink any. We tried waking him up--but that seemed to do absolutely nothing--he was tired from such a big birthday!

In celebration, we (Rusty & I) gave him a swing--he loves it! He sat in it for about 30 minutes today--just happy as can be--very content sucking his pacy and swinging back and forth.

Dr. Kays came and spoke to us today--we had a few questions for him and our nurse was kind enough to request a meeting for us. He was very impressed with Par's eating progress and said that he can try breastfeeding any time now. At Par's 6pm feed he got a little cranky after his bottle and so we decided to hold off on trying--then he was asleep at 9pm--so we are going to just wait and try breastfeeding tomorrow. I'm really excited--I'm praying he'll latch on correctly--a few people (with CDH babies) have told me that although breastfeeding can be more work for babies--they seem to do better with it--so we'll see. Either way--we are so happy that his feeds are going well. But Dr. Kays cautions that we still don't know if he is refluxing--sometimes it can be silent--he'll do an upper GI study a little later and then we will have a better idea on what is going on.

Par had some special visitors today--his Great-grandfather, and his two great-aunts (Lissy & Virginia). Unfortunately, Par slept through their visits and has no idea they were even there (although Aunt Lissy tried to pry his eyes open with her fingers in an effort to wake him up). Anyway, my point is--there is still an even playing field when it comes to the coveted "favorite great aunt spot"--so aunts, continue to send flowers and gifts please. :)

We are so thankful for everyone's continued prayers. I know this blog is just a glimpse of what is going on here--but your notes, emails, comments always come at the perfect time and say just what we need to hear/read...so I guess the "glimpse" you are seeing is accurately depicting our emotional/spiritual needs--so thank you.

Love, Liz, Rusty & Birthday Boy Par!

Moving Day!!!

2007-11-30T23:15:00.000-06:00

Par spent the first part of his day enjoying the hustle and bustle of the NICU 3--but soon after lunch the orders were in for him to be moved down to NICU 2--lots of babies were coming and they needed the room! Packing is pretty easy--they just threw all his cords into the bed with him and we were off to his new home! A little bit cramped--but hopefully we won't be here long.

Par was worn out from the move and all the eating he has been doing--so it was a pretty low key day--he mostly napped between feeds or just stared at his mobile. We noticed this morning that he had a PICC line put in his forearm last night to replace his central line in his neck. The surgery team came by after we settled into the NICU 2 and removed the central line--Par didn't even cry! Par has been eating well and is up to 9cc's every three hours! I fed him a few times today--once he burped twice and nothing came up (yay!)--the other times he had a little bit of a wet burp--but nothing out of the ordinary for a baby. Par has now been started on Reglan to help him with reflux and to tolerate his feeds--more of a precautionary thing.

Our sneaky son has learned to fake sleep--today we caught him opening one eye to make sure we were still there. We were--with camera in hand--how clever is our little boy! Tonight when we left he really had fallen asleep--he was awake in his bed and so I picked him up and he just went right to sleep and then I set him in the bed and we left--hard to leave, but easier that he was asleep.

We continue to pray for his feeding, reflux and his little body that is surely still healing from his repair surgery. We praise God for allowing us to be here in Gainesville--we thank Him for our many blessings.

Please continue to pray for Par's friends and that they will continue to heal--we pray they will join us soon in the NICU 2.

Love, Liz, Rusty & New NICU 2 resident, Par

For this child, I have prayed. I Samuel 1:27

2007-11-29T19:28:00.000-06:00

We are so thankful for our son and so thankful for the prayers for his healing from all of our friends, family & those we've never met. We are overwhelmed by the outpouring of love--but trust that your thoughts and prayers have not been in vain--our child truly is a gift of our Father and our prayer is that his life may help bring others closer to our Lord. It is so true--for this child, we have prayed many days and nights. Rusty and I were remembering how just 3.5 weeks ago, we had one eye on our critically ill baby and one eye on this machine that we really didn't understand completely. We prayed for every single digit that his saturations needed to rise to keep Par off ECMO. Today, his saturations are still very important--but we barely pay attention to them (by the way, they stay at 100 most of the time). His steps have been remarkable--we praise God for his progress.

Par has done well eating--but he isn't quite there yet--he is still a little confused about why when he sucks this "pacifier" liquid comes out. He gets the cutest little look on his face. Because of his good feeding yesterday, Par's feeds were upped to 5cc's of breast milk every three hours throughout the day. Our main issue has been that he gets WAY too comfortable and snuggly when I'm holding him and he falls right to sleep. Of course, I absolutely love that he loves being close to his mama--but he needs to eat when I feed him--that is our ticket out of here! We had a great nurse today who thinks Par is going to be on full feeds before we know it (really, she is just speaking in very positive terms)--but I love hearing that he is doing well--even with our little sleepy issue.

As usual, I spent some time telling Par about Birmingham and our house that he is going to live in when we get home. Below you can see the reaction when I told him about how if he works on feeding then we may be home by Christmas--and if he doesn't--he might have to have another surgery. I think he understands the seriousness of the situation now--thank goodness.

We still are in NICU 3--and just like yesterday, our move is expected at any time now. We could possibly go in tomorrow to find him moved. Mom and I toured the NICU 2--it seems very empty compared to where we are--but that can change very quickly. It was pretty quiet and less action. Although I may not be ready for the move--I pray that Par is--although when I told him about it, he immediately tried to hide-- (see picture below)--but I told him they'd probably find him anyway. (Isn't he precious!)

Par is four weeks old today--I can't believe it has been that long--it seems like everything just happened. Praise God that we have our precious baby.
We continue to pray for the health and healing of Par's friends.

Much Love,
Liz, Rusty & Par

I let him become the smelly kid...

2007-11-28T23:59:00.000-06:00

When we called this morning to check on Par the nurse asked us if we'd bathe him when we got in because he smelled. On one hand, we were thrilled we'd get to give him his first bath (which turned out to be a glorified sponge bath)but on the other hand, how embarrassing that our baby smelled so bad the nurse had to ask us to clean him.

He didn't love his bath--but he didn't scream bloody murder as we have heard other babies in the NICU. He definitely likes being clean--and just as a reminder--this is the first time EVER that he has been cleaned because they didn't clean him when he was born because he was so fragile--so we were literally cleaning off stuff from his old living quarters (ie-the womb).

As another surprise we found out he was definitely going to try to feed today--but with a BOTTLE! I was shocked. They felt that since his sucking seemed so strong and he was "acting" hungry (rooting and stuff) they thought he might take to a bottle feed. This is just to try--if it doesn't work out--they'll feed him through a tube as planned. So I got to feed him 1cc (which is a tiny amount) in a teeny tiny bottle with a normal size nipple. He was a little confused but seemed to swallow pretty well. We did it again at 8pm and then at 12am--so far so good. They'll feed him again at 4am--and if all goes well he'll get 5cc's at his feeds tomorrow. Apparently, this first feed is really to work on swallowing and to prime his stomach since it has never had any food in it. Tomorrow will be more telling--it will actually be enough to spit up if he is going to have reflux issues. Please pray that this nasty reflux problem has decided to skip us (but we know it is almost a certainty with cdh).

After his feed, they came and took is UA line out--which was quite a process because it has to go really slow--pull a bit out, wait 5 minutes, pull a little more, wait 5 minutes--all this so that it clots because it is going into an artery--that's the danger with these--if it is pulled out too fast there is a potential for bleeding internally. Thankfully our NP took her time--unfortunately I came back from eating to find mom had just about fainted from watching the procedure--so they had mom sitting with her head between her knees.

With his UA line gone and him being clean now--he can wear clothes! So we put on one of his little sacks that it sooooo cozy--he loves it! He's looking more and more like a real baby!

Ella is still taking her time, although it seems that her latest xray showed slight improvement--Praise God! Continue to pray for her lungs to get stronger and stronger.

In closing, we receive all but an eviction notice from the nurse practitioner in the NICU today. She said that the NICU is expecting 2 more critically ill babies in the next day or so (one of them being ANOTHER CDH baby) and there is just no more room. I said something about this in the post yesterday--I didn't know we'd be the people they'd move out! We should be thankful that Par is doing so well that they feel he can take a step down to the NICU II--but I feel it is just a little too soon--the amount of care isn't the same as in the NICU III--plus, we'd really never see Dr. Kays--but, it is the next step to coming home--i just wish it was because Par was ready and not because they need the space--but hopefully by the time he moves (which isn't definite quite yet--but possibly by Friday)--both will be true. I guess it is just bitter sweet.

Thank you for your prayers!
Love, Liz, Rusty & the smelly kid, Par

Who's in Charge?

2007-11-27T22:12:00.000-06:00

Who's in charge? Par is in charge! He told us loud and clear that he did not need his CPAP anymore! When we arrived this morning he was wearing the CPAP gear--but even his nurse didn't notice that he had cleverly slid the nose prongs out and they were just propped next to his nose. No wonder he was being so good and quiet. But then a nurse across the way heard us talking about it and came over and stuck them back in--so of course, he got upset. He has the cutest "mad" face--it isn't "sad"--it is definitely VERY mad and you can't help but laugh at him when he is crying--he is already way too spoiled. In fact, at this point if you stand at his bed you have to either be holding his pacifier in or playing with his monkey toes--and sometimes you have to do both at the same time. I am guessing that is because his feet were the only thing we could touch for a while, he still finds comfort in us touching them.

Dr. Kays came over after lunch and wrote the order to have Par taken off CPAP and put on nasal cannula ASAP--and yes, we have video of this momentous event. We let Par take the CPAP off himself since he is so good at doing it. Dr. Kays also wrote an order to have the UA line removed (yay!) and he doesn't have the tube down his throat except when he is fed (which still hasn't happened yet). Additionally, they discontinued all of his medicines except his fetanyl and lasix. He is slowly but surely losing all of his lines because he is doing so well--we give glory to our Lord for such remarkable steps forward Par has taken. We understand he may start trying to eat tomorrow--so we'll see. Please pray that he will not have any reflux issues.

While we visited, Par decided to show us his new trick of crossing his eyes (which freaks me out--but yes, I realize this is normal for babies to do). Anyway, Mom and Rusty thought it was funny and they tried to get some good pictures of him.

Par had a big day--and he was up the entire time. When we went to say goodnight and read him his bedtime prayer around 10pm he was sort of awake but drifted off by the time we left.

Please continue to pray for Jonathan as his repair surgery is still scheduled for tomorrow morning. Ella is having an xray tomorrow which will be part of determining if she is ready to be extubated--we just ask for God's perfect timing for extubation and we thank Him for Ella's successful feeds.

May God bless you.
Liz, Rusty & CPAP-free Par

Pacifier Duty

2007-11-26T23:08:00.000-06:00

Par was not a happy camper today. He was awake for about 6 hours straight—it was shocking. I asked the nurse if he was on any sort of speed—she said no. One minute he would be content and sucking (loudly) on his pacifier and the next minute he would be air-boxing with his little hands trying to take his CPAP off and pull his replogle tube out of his mouth. Most of the time he succeeded—not because we can be over powered by a 3 ½ week old baby—but because when he starts flailing his arms he sometimes catches on other lines (the ones going into his body, like his central line) and we’re trying to keep him from hurting himself—the CPAP we can put back on—the central line or UA line can have devastating effects if he snags them just right—anyway, he just HATES his CPAP (most babies do) and he just wants it off of him. I don’t blame him—how comfortable would it be to sleep in scuba gear—that is basically what he is doing—it would drive anyone insane!

Mom was with me all day—we took turns on pacifier duty. During one of his “content” spells the nurse asked me if I wanted to hold him—so of course, I jumped in the chair. He was only content for about 20 minutes—he actually seemed uncomfortable—like something might be hurting him, so we opted to put him back in his bed and he seemed to calm down.

As I have mentioned before, it is difficult when he cries because I can’t do the natural soothing things one might do for a crying baby. Even when I’m holding him, I’m only able to hold him in that same position. The good news is—he does seem to be relatively consolable—I guess he just had a lot of “personal issues” today and each one needed addressing!

Dr. Kays came by about 6:45—right before I was leaving for shift change. He had been tending to the other 2 CDH babes for most of the day. He asked me how Par seemed and I said he was sick and tired of the CPAP get up. Dr. Kays said, “Well okay—let’s just get rid of it then—how about tomorrow?” I asked if he was serious—he said yep. He said he would do it tonight but he didn’t want something to go wrong and be called to come in at 1 AM—I don’t blame him.

When we arrived tonight (Rusty worked today so tonight’s visit was his first for the day) his blood gas had not been very good. I have no idea how that will impact his change from CPAP to a nasal cannula—but I have to think it might. We’re praying that his 4AM blood gas will be good so Dr. Kays can move on with his plan. Also, his replogle was removed and replaced with an OG tube. This tube is used to naturally vent the stomach (the replogle is suctioning the stomach) so it doesn’t fill with air. This tube is also used to feed—but we are not doing that yet—but at least now we’re ready! The other good thing about the OG is that it is much smaller than the replogle tube—in fact, the nurse said Par did not even seem to notice when she put it in and he hasn’t been pulling on it like the other one.

Ella has been feeling better—she fell asleep while admiring herself in a mirror on one of her toys tonight while I was talking with Tina. She is so precious! Please pray for her lungs—pray for clean films so she may take the next steps in her recovery. Also, pray for toleration of her feeding tube as they continue to increase her feeds. Please keep her parents in your prayers as they continue to be strength for their daughter and each other. Jonathan’s surgery is tentatively planned for Wednesday (finally—remember, he hasn’t yet had his repair). We ask that you will continue to pray for healing in Jonathan’s kidneys and liver and for Jasmine.

We thank God for the progress Par has made in his short life—we continue to be in awe of the love we’ve been given with this precious baby boy and we give all of the glory to our Lord. Liz, Rusty and Par

Par counted to ten in spanish today!

2007-11-25T23:11:00.000-06:00

Well...not so much...but for the past three days we've been on a roll--so this wouldn't have surprised us at this point! Today was VERY low key--Par slept a lot (actually, he slept a lot when we were with him).

When we called this morning we found out he had been a good baby--but when we arrived to visit him we found out he had not had a very good blood gas--thankfully the nurse was able to pinpoint what was happening around the time it was taken and it can reasonably be assumed that he had too much going on, his CPAP wasn't secure, he had just had diaper changed, etc.--this is reassuring that he isn't necessarily "not tolerating CPAP" but that it was just a bad time to take the BG. Dr. Kays didn't seem worried--and he was around the NICU most of the day--so we feel reassured. The only thing Dr. Kays ordered was that his secretions in his mouth be suctioned before blood gases. Seems easy enough, huh!?!

This afternoon we read Par a new book we received from some new friends in Gainesville--it is the sweetest book-- ON THE NIGHT WHEN YOU WERE BORN. Mom cried when I read it the second time--all you moms out there need to get this book--it is precious. Par seemed to really enjoy it--although he did sleep through it.

Tonight Rusty had some father/son time with Par while I was pumping. He recorded Par's famous suck--it is so cute!

Thank you for sharing in these incredible moments with our family over the past few days. We continue to appreciate each and every prayer and word of encouragement. We thank you for your friendships and support.
Love, Liz, Rusty & Par

PS- There have been several questions about when Par will begin nursing or taking a bottle--there isn't really a good answer for that--but it is a long way off. We might try eating this week, but that involves a feeding tube and 1cc of breast milk to see how he responds--this is a very slow process--nursing/bottle won't happen until we know there aren't any reflux problems.

God is Good.

2007-11-24T16:58:00.000-06:00

I didn't think it could get any better so soon--but it did and we thank God for allowing so many amazing experiences for Rusty and me-- and in record timing! I'll cut to the chase--

After 24 days, Rusty and I were able to hold Par for the first time today.

Thanks to our great nurse, Jenn--we held him around 1pm. I really couldn't believe it--Jenn had mentioned yesterday that we might be able to today--but he didn't have a great blood gas this morning, so I was more worried about how Par is doing on CPAP than I was about getting to hold him--don't get me wrong--it is all I think about--but I've known that I only wanted God's perfect timing with everything--from extubation to holding him--I just didn't realize they'd come back to back. When we arrived to see Par he was awake and sucking on his pacifier--his suck is so loud you can hear it as you approach his bed--pretty funny. The only problem is that you have to hold it in for him--he is very high maintenance! Anyway, as soon as I took over her pacy holding position she said "We're going to get a blood gas right now and then you'll probably get to hold him"--I was thrilled and tried to pep talk him about giving a good blood gas so we could--he performed admirably with a fantastic blood gas!

Okay...so of course we have video of us holding him...in the videos, Par is crying when I'm holding him and completely content when Rusty is holding him. What you won't see is that once everyone left us (Rusty, Par & me) alone, he immediately stopped crying and just sucked his pacy and gazed at both of us--he was happy--he just didn't like the commotion. I'm telling you that so you don't think "Oh, poor Liz--he cried the entire time." After I held him for a while, Sal came back to see me holding Par and she got to see him with his eyes open for the first time! Then mom and dad took turns coming back--and Par was such a good little boy for his audience. A lot of the nurses came by to take a peak knowing that it was our first time to hold him--for such a "sterile" environment--the NICU sure does seem to brighten up with something so simple as a mother and father holding their baby for the first time. Also, for Rusty to hold Par, I had to pass him off to Rusty--so there wasn't anyone to take a video of that--then I picked up the camera and started filming--but we were afraid the battery was going to die and I definitely wanted pictures--so it cut Rusty's video short.

I'm afraid that he liked us holding him a little too much and Jenn tried to impress upon me that because of his UA line, some nurses won't let us hold him still--so just because we held him today, it doesn't mean we can hold him tomorrow. Plus, he has to still be progressing--sometimes too much stimulation can throw them off and then their saturations go down or bad blood gases--anyway--we'll just take it day by day. I just don't want to get to a point where he is crying to be held and we can't hold him--so we're going to try and be really patient about it--but we're definitely already addicted.

After all of the excitement--Par needed some rest so we sat there with him in his bed and waited for him to fall asleep. He isn't quite as sleepy because they have weaned his sedation medicine even more in an effort to get him to move around a bit more because his film from this morning showed his left lung a little wet (which is completely normal for a baby who was just extubated yesterday--because he can't be suctioned anymore he has to figure out how to "cough it up"--it just takes a little time). After sitting with him and holding his pacifier in his mouth for over an hour, he finally fell asleep. We felt this was a good time to leave so we could beat the game traffic (huge game--Florida plays Florida State today).

As we were leaving the NICU was spoke to Tina & Josh (Ella's parents) and they asked us about the "holding experience"--we told them how wonderful it was. We told them that we didn't cry as we both had thought we would--they assured us that once we saw the pictures and video of today we most certainly would--they were right. Watching it on video for the first time felt even more emotional and we both cried--what a gift is our son! What an amazing gift is parenthood! I pray that we both can hold on to this profound understanding God's love that we have experienced today--if we can, life will be sweet for a very long time...if not, we have this moment to remind us.

We headed back over to see Par after dinner--and thankfully he was asleep--so we just said his bedtime prayer over him and then kissed him goodnight. We want to remind everyone of the other precious babies in the NICU--Ella, Jonathan and the new CDH Baby girl. Ella is recovering well from her recent surgery--there is talk of extubating her in the next few days--but I know her parents want her to just take her time--please pray that Dr. Kays will be able to discern the perfect timing for this step and the step to start her feedings. Jonathan is still on ECMO and waiting for his repair surgery--we continue to pray for his liver and kidney functions. And the new little baby--we saw today that she has been put on ECMO. We ask that the Lord will protect and comfort her and her parents during this journey that has just begun.

We thank the Lord again for His many blessings.

Love,
Liz, Rusty & our son, Par

PS- The extubation video from yesterday's post is now working properly

EXTUBATION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2007-11-23T17:05:00.000-06:00

That's right--Par was extubated this afternoon--a complete surprise for us! We checked on him early this morning and the nurse said he was doing well and his blood gas had been good at 4am so he was weaned a tad bit more. When we got there it was really busy--the new CDH baby had arrived (a little girl) and the NICU was hoppin'! We visited with him for a while--he still seemed a little confused by his new surroundings--but we had a big surprise for him--his new mobile! We were also a bit confused--he looked different but we couldn't figure out why--and then we realized the oximeter strip (the thing on his forehead that measures oxygen in the brain) was missing--we were seeing Par's head for the first time--and it is just as cute as the rest of him! When I left to pump (which if you haven't figured out by now, is an every two hours ritual)Darrell and Mary took turns visiting with Par. When I was finished, I sat in the waiting room and waited for Darrell to come out so I could go back in and sit with my precious baby. Rusty and Darrell came out together and Rusty said (without any sort of facial expression), "Dr. Kays says he needs to speak with us together"--or course I had a mini-freakout in my head and quickly asked why. Rusty then said, "He thought Par's mama would want to hear him cry for the first time when he extubates him"--I was so excited! So we went in and waited excitedly by Par's bed. I was telling Par everything that was about to happen--he just stared at me looking very confused. Dr. Kays came over and joined the two nurses and....well...just watch the video. (FYI- you will see the actual extubation, so if you don't like seeing tubes pulled out of a little baby's throat--then you may want to prepare to turn your head) Rusty and I are so proud of Par--this is such a HUGE step for him and we are praying that he will take to the CPAP. The CPAP is the getup he has on in place of his ET tube.

We are headed back over to visit our baby and will update later tonight with some precious pictures of him. Liz, Rusty & Par

UPDATE: 12:10 AM

Par is sound asleep--he is tolerating the CPAP very well with saturations of 100/100. We tucked him in with his blanket made by his Gigi--he is very warm and cozy. As much as we wanted to wake him up--we knew it was best to leave him asleep since he had been a little agitated earlier by this big change. Rusty and I stood over him and said our bedtime prayer.

Please keep Jonathan, Ella and new CDH baby girl in your prayers. We ask God to bless each of these babies and all of the parents--we thank him sincerely for this amazing journey.

May God bless you.
Liz, Rusty & Par

Happy 1st Thanksgiving Par!!!

2007-11-22T23:10:00.000-06:00

Par had a wonderful Thanksgiving today (and three week birthday)--he is very thankful for all of the prayers that have been said for his recovery and he is especially thankful for Dr. Kays and his incredible team that has given him his life.

We called to check on Par early this morning and found that he had been weaned on the ventilator a bit more because he had a good blood gas. When we arrived later that morning Par was asleep and shortly thereafter I went to pump. Rusty's dad and grandmother came to visit again and thankfully Par was awake for his audience. We've learned that Par wakes up really early and then has his midmorning nap, only to wake up again around lunch--and when he wakes up he is wide awake.

After pumping, Rusty left and I spent the rest of the time knitting at Par's bedside. While knitting, I overheard some of the nurse talking about moving Par today because of another CDH baby due tomorrow. My mom came around 2pm and we grabbed some lunch and visited with Par who was having a pretty fussy time because of a wet diaper and a dangling central line. He ended up having an x-ray to make sure he hadn't pulled the central line out--thankfully, it looks fine. By this afternoon, Par was weaned even more on the ventilator--12 breaths/minute! During this time, I also whipped up a little indian headress for Par (and one for Ella) so he could feel festive and in the holiday spirit.

By the time they started to really talk about the move, Rusty had returned. Apparently it is a pretty big ordeal with the drips, monitors and ventilator--so Rusty and I left right as they were getting ready to move Par. We would have waited for the entire move, but with it being Thanksgiving there were a few less nurses on staff in the NICU (no worries – all babies are getting their necessary care), so it took a good amount of time to get the number of nurses available (with babies stable and doing well) to make Par’s “move”. So, Par made his “move” while we went home for Thanksgiving.

Thanksgiving dinner at the hotel was amazing! My mom did an incredible job making us feel at home--and our T-giving guests made it extra special: Tina & Josh (Ella's parents), Jasmine (Jonathan's mom), Mary & Darrell, Memaw, Mom, Sal and me. The only upset to the fantastic meal was Sally finally getting the larger end of the wishbone when she and I split it.

I was excited to return to see Par--all of us parents arrived back at the NICU at the same time to visit our precious babies. As we expected, Par was very cozy in his brand new big boy bed and new spot! It was a little dark and sort of in the middle of everything--but I'm sure we'll get use to it (we were so spoiled by his big room). Par was asleep so we decided to leave him in peace.

Rusty and I are very thankful for all that God has given us. The blessings we've received while in Gainesville have been nothing short of miraculous. We thank each one of you for your prayers for our son.

We continue to pray for Ella and Jonathan as they continue their own journeys--we are thankful for their precious lives--and their precious parents.

Thank you for your love.
Liz, Rusty & Chief Par Monkey Toes

Peaceful Par

2007-11-21T22:14:00.000-06:00

Thank you God for giving Par a peaceful day. We praise You for Your perfect plan for our son and we thank you for giving us patience as Par is weaned.

Par continues to wean well on the conventional ventilator. He is now on 40% oxygen (they won't wean anymore on that) and 24 breath/minute (they wean down to anywhere from 15 to 5 before they extubate). He has continually had good blood gases that has allowed his progress and his pre/post saturations have remained at 100/100.

We spoke to Dr. Kays today and he said he is going to wait until Par is extubated before they try feeding him. This is a little different than Dr. Kays' original plan to remove the replogle today and feed him later this week (they like to take the replogle out and see what happens for a few days before they feed him--the replogle is a tube that goes down to his stomach and drains out extra "stuff")--but Dr. Kays once to extubate first and then work on feeding next--which is sort of the order of things anyway--feeding is the next big hurdle after extubation--we are praying that Par will not have any reflux issues--and of course that he'll take to oral feedings and then naturally to breast feeding.

Par was asleep when we arrived today but then woke up and was fussy (he was on his tummy). We gave him his pacifier and he sucked on it for an hour and a half--this wouldn't be such a big deal, but we had to hold the pacifier for him to suck on it--which was fun until we needed to eat lunch--which didn't happen until 3--Par might be a good sucker when it comes to his pacy--but obviously Rusty and I are the bigger suckers since we stood there holding it in his mouth for so long--he is going to be so spoiled. It was precious--he would just gaze back at us--he seemed so content, so peaceful--not at all like a sick baby with tubes going in and out of him. I think in a way it was our first glimpse of "regular" parenthood--we look forward to that time.

After lunch, I sat with Par for the rest of the afternoon while he slept. I have started knitting my stocking now--I've just about finished Rusty's! I did get to change Par's diaper several times today which was great. As a reminder, I still have never held Par, so changing his diaper is a pretty big deal to me--plus, it doesn't hurt that he never cries when I change is diaper and he always cries when a nurse changes him--I love being his mama!

Right before shift change mom & Sal stopped by to say hello to Par and then Rusty showed up with his dad, Mary and Memaw (his grandmother from Asheboro). They had just come into town and will be spending Thanksgiving with us. Although Par was sleeping, I'm glad everyone got to see him before shift change! While leaving we saw Fr. Gillespie entering the hospital--he had stopped by to say a prayer and bless Par the night before while we were gone, so we were glad we got to meet him and thank him in person.

We came home and ate dinner and then of course, I pumped. I took an hour nap (which was SOOOOO nice) and then watched some tv--and then pumped again. We headed to see Par around 10pm--thankfully he was asleep (remember, I can't stand leaving him while awake)--so Rusty and I just looked at him for a few minutes and then said our bedtime prayer and left. As I said before, Par's day was peaceful.

We continue to pray for Jonathan and his mom as they continue to take baby steps. We ask for miraculous healing on baby Jonathan's liver and kidneys so he may have his repair surgery. We also continue to pray for baby Ella who had her feeding tube/nissen surgery today (typical Dr. Kays surprise for her parents)as well as a central line put back in and her abdominal wall gortex patch removed. We ask that the Lord will help her to heal and for her to only move forward from this point on. We also pray for Tina and Josh as they continue to hang on to the Lord's promises for their life--we ask that He will renew their faith and trust each day--and that tomorrow they will feel 100%.

Thank you for your prayers.
Love, Liz, Rusty & Peaceful Par

Breaking all the Rules

2007-11-20T22:28:00.000-06:00

With CDH babies, every one is different. Seriously, no two are alike. I look at the current situations for Par, Jonathan & Ella--they all go against the expected paths for the severity of each of their own cases. Jonathan's hernia is the least severe out of the three--but he is definitely the most critical at this point. Par's hernia was thought to be moderate and we found out it was severe after the surgery and now he seems to be breezing through the weaning process--and Ella, precious Ella--everyone says girls have an easier time with CDH because they are better fighters--Ella is definitely a fighter--and although her hernia was severe--her stay has been much longer than the average CDH baby. When it comes to a rule of thumb for CDH babies--there isn't one--which is why Dr. Kays is so amazing--he has to rewrite treatment for each child without knowing the outcome and do it confidently--there are no rules, except for the ones he makes as he goes along.

As you may have noticed from our last two posts--we were less than confident in the care of Par for the past two nights. Let me first say that we have no doubts in the competence of any of the nurses at Shands--we know they all are well trained with a lot of experience. But it was difficult to leave Par and feel that he wasn't going to receive the attention we think he needs. We knew he'd be awake (since he slept most of the day) and we knew that he would need some interaction, someone to calm him and someone to suction him throughout the night. Of course we can't say whether or not any of this happened--we weren't there. We can only go by our intuition which never had us feeling this way in the 2+ weeks we've been here until now--so that has got to mean something. Anyway, this morning we walked in to find that Par had not been weaned because his blood gas wasn't very good. We were disappointed, especially when we found out he hadn't been suctioned before the blood gas was taken. There aren't any definite rules with suctioning--there are actually two schools of thought--suctioning before a blood gas is taken (like 45 min before) will give a better blood gas; or suctioning before a blood gas is taken can stir stuff up and make the baby agitated resulting in a bad blood gas. Well, when Dr. Kays came in this morning he looked at Par and how good his sats were and stuff and looked at his chart and saw he hadn't been suctioned--he reprimanded the day nurse for the night nurses' mistake about not following the "rules" of suctioning--he was frustrated obviously--he went ahead and weaned Par down.

Rusty and I were glad that Dr. Kays could still tell that Par was doing well enough to be weaned. When Dr. Kays came in later, I was there and he stepped in and said with a bit of a laugh, "I weaned him earlier--I'm not even following my own written orders!" If there is one thing the nurses keep telling us about Dr. Kays--you never know what he is thinking and he changes the rules without telling anyone--apparently he even breaks his own!

Par was awake when Rusty and I visited this morning--he seemed happy. He didn't cry when I changed his diaper--he only fussed one time when he needed some suctioning--otherwise he was just a happy little baby.

Rusty left to do some work and mom brought me lunch. After lunch mom came back to sit with me for the rest of the afternoon. We walked in and immediately Par's nurse came to tell me that mom would need to leave because the rules of the NICU say that only the parents can be in there between 3 & 4pm and so mom would need to leave (it was 3pm). I was dumbfounded--we've almost been here 3 weeks and no one has ever told us anything about "visitation rules" other than the 7pm shift change rule where nobody can be there. I was so frustrated--mom left and I just sat down and started knitting getting more and more frustrated. Shortly thereafter, Tina and Josh walked by and asked what was going on--I immediately started crying--I don't know why it hit such an emotional nerve, but it did. Of course, we don't want to break any rules--it was just frustrating that today is the first day they decided to enforce them.

Saying goodnight to him this evening was easy and felt good--we left with a very good feeling about his nurse. She seems very attentive and Par looked extremely relaxed. We pray he will have a peaceful nights' sleep and have a good blood gas so he can be weaned a tad more. As you can see in the picture, at one point Par started "thinking" really hard about something and reached back to twirl his hair--is it possible that Rusty & I created a mini-Joe IV? (oh no!!!!!!!!!)

We continue to pray for Jonathan and Ella. Jonathan's kidneys started working a little better this morning--we ask that God will give full function back to his kidneys and stop the swelling of his liver so he may be recovered for his hernia repair. Ella was reintubated today--we pray for her comfort as she readjusts to her breathing tube. We also pray for continued strength of Tina & Josh--we ask that the Lord will renew their confidence in Dr. Kays and in God's perfect plan. We thank God for their example.

Thank you for your prayers for Par and his friends.
Much Love,
Rusty, Liz & Par

Progressing Par

2007-11-19T22:27:00.000-06:00

We woke up a little late this morning not only due to my typical night-time pumping, but also due to the fact that our little girl (dog) Tiffany decided she HAD to go out at 4:00am. We called the NICU when we woke up to find out how Par was doing and the daytime nurse reported that Par had a good night and that he was doing well. His blood gas was good (not exceptional but good) and that was basically all the information we had at that point.

When we got to the NICU we were still a little apprehensive because when we left Par last night we let him know that he may have to “fend for himself” during the night and once again reminded him that we were at Homewood Suites in room 311 if he needed to get in touch with us. When we got to his bedside we were happy to see not only that Dr. Kays had been there, but that he had also ordered a gradual weaning of his oxygen and breaths per minute (provided by the ventilator). The instructions were to wean his oxygen down gradually (2 points for every favorable blood gas) and to wean his breaths per minute down 4 breaths per minute each time his CO2 levels were below 56. Par’s most recent blood gas was taken at 4:00am and Dr. Kays had ordered that they would be taken every 8 hours (a very gradual weaning process), so his next one would be at noon. We also were told that a “babygram” was ordered, which is a more extensive x-ray of the full body and abdomen to determine whether or not the area of concern in his intestines is an area of infection or just nothing.

His blood gas at noon was good, so they weaned his oxygen down to 44 (room air is 20) and his breaths per minute were at 52. During our morning visit with Par he was pretty much asleep until I had to go pump at a little after noon (after the blood gas). While I pumped Rusty sat at his bedside and played his music for him (he was awake but not very responsive). About the time I came back from pumping he was starting to become wide awake and was intent to listen to his music and take turns looking at me, then Rusty, then his blue bear (dangling from above), and then back to me. He definitely can tell the difference between his mom and dad and also likes looking around to see what else is there. Rusty was planning on leaving to go work when I got back from pumping but since Par was awake and obviously taking enjoyment in having his mom and dad (and blue bear) there Rusty didn’t end up leaving for another hour or so.

During this time, we also got to speak to the nurse practitioner about Par’s x-rays and she told us that his antibiotics had been discontinued and that the “area of concern” was either nothing or had been knocked out by the antibiotics. Nevertheless, they will continue to monitor it in the upcoming days. Although I had hoped Par might be able to start feeding today or tomorrow (with small amounts of breast milk delivered directly to the stomach via tubes), we were told that they would hold off for a few more days to make sure the incident in his intestines wasn’t an infection or bacteria. In any case, although feeding is delayed, we are still encouraged because Par has still had some poops indicating that his intestines are performing normally.

Rusty and I noticed that Par's hands were sort of sticky from all the tape he's had on him so we decided to clean his hand. You would have thought we were sticking him with needles--he was so upset. As soon as we stopped (we each had a hand) it was as if nothing had happened.

When Rusty left mom came to sit with me while I worked on Rusty's stocking. Dr. Kays came by and seemed encouraging about Par's progress. He checked on Par and looked at the ventilator and said, "Looks good. We'll see how he does!" and then left. It was good to see him after a few days--I just hope Par continues to do well on the ventilator.

When we went back tonight, Par was on his tummy in what looked like a somewhat uncomfortable position. Although we wanted to move him around in an attempt to make him more comfortable, he was sleeping well and continued to do so during our visit, so we left him to the care of his nurse. I don't think I could bare to leave him awake like I had to last night. During our visit we learned that his oxygen levels were good, but that his CO2 level was at 59 (above 56). So, per Dr. Kays’ orders, his oxygen levels were weaned down 2 points to 42 and his breaths per minute remained at 52. We were also told during our daytime visit that Dr. Kays nearly always weans things (except for things weaned in extremely small amounts) in even numbers because he seems to have an aversion to odd numbers. Being that I also have an aversionj to odd numbers, I feel even more comfortable about putting my child's life in this man's hands! Before we left, we read him his bedtime prayer as usual (with his music in the background) and said our goodbyes to him and told him we’d be back to see him in the morning.

We spoke to Jonathan's mom earlier today and learned that his kidneys are not functioning properly--please pray that God will heal his kidneys so he may continue on his journey of fighting his CDH so he may have his repair surgery. Also, Ella's rough night was due to her left lung collasping--pray that her lung will be strong and able to take the next steps for her recovery. We also ask that you will pray for their parents so they may be refreshed each day so they can be 100% there for their baby and enjoy each day with them, while being able to make critical decisions about their care.

We thank you for all of your prayers--we feel them constantly and we give all the glory to God for the miracles of the friendships we've made and the progress of Par. We thank you for being a part of our journey.

Much Love, Liz, Rusty & Par

Glow Par! Glow!

2007-11-18T18:05:00.000-06:00

Yet another xray for Par! The intestine issue is still not resolved and so they have to wait on another xray tomorrow morning. This boy has had a lot of xrays--especially in the last few days--the good news is-- with so much radiation exposure, we won't have to buy him a nightlite for his room--heck, we won't even need a flashlight if the power goes out! (They say the exposure is fairly minimal, not to alarm anyone, but it's still a lot of xrays for a little boy). But this intestine thing is minor compared to the excitement of this morning--PAR IS ON THE CONVENTIONAL VENTILATOR!!! That's right--our boy is movin' on up! His transition wasn't seemless--it had some tweaking to do after he presented with an unacceptable blood gas right after the switch--but since the tweaking, he is doing well. I can't believe how big the room feels with all those other machines gone... Ba-bye oscillator!!!! Hello conventional ventilator! Par has become a professional contortionist over the past few days--every time we visit he is put in a new position--some he likes (he loves being on his back) and some not so much--(doesn't enjoy tummy unless he is asleep). He's been placed on his side a few times but tends to wiggle onto his back. He was really fussy this morning and we had a hard time calming him down, even with the "holding" technique (cupping his head and feet), but we decided to turn his music on to see if it would help (the same songs he listened to while in the womb--especially the last few weeks), and he immediately calmed down. I think especially in this somewhat strange environment of the NICU it is amazing what "familiar" sounds can do for a little baby. He seemed to feel right at home and was very peaceful as I went to pump. Rusty got to stay with him during that time and instead of going to sleep, he was wide awake, so Rusty just talked to him and they listened to his music and he really engaged his dad with his eyes and they spent some good quality father-son time together. Another adventure in motherhood today--I got to change his diaper for the first time! Now--please note--I have changed many diapers in my lifetime--of course, Sal's diapers (sorry Sal) and then my numerous younger cousins' diapers and the babes I babysat for--so this wasn't something totally new---but changing a fragile little boy's diaper--with wires and breathing tubes keeping him alive--it is a little intimidating to say the least. Plus, he is a wiggler! Not to mention,he absolutely hates it--thank goodness I couldn't hear his screaming--that would have really thrown me off my game. But I did change his diaper and as soon as I was finished he calmed down like it had never happened. I've been told I can change his diapers any time he's wet or poopy--is it wrong that this made me so happy today? Leaving him tonight was hard because he was awake and upset--but like before we had to tell him to buck up--tonight he is on his own. We reminded him where we are in case he needs to call us--but hopefully he'll fall back to sleep. It is just so hard knowing that he might easily scream for an hour and no one would know unless they got up to check on him...and I'm not positive he'll be checked on other than hourly--so I pray he'll sleep through the night. When we were leaving we ran into Josh and Tina and found out that Ella had a rough night--we ask our Lord to calm Tina & Josh's hearts and minds so they may sleep peacefully tonight and we ask Him to comfort Ella and to continue to heal her precious body from head to toe. We know that NOTHING is hidden from God--nothing in all of creation--so we ask that Tina & Josh will be comforted knowing that their baby girl is being held in the palm of His hand. We also continue to pray for Jonathan as he is still on ECMO and his surgery is still postponed. We just ask that he get to that "stable point" so he can have his repair and start the recovery. We ask for God's perfect timing and for patience in waiting for God's timing. Please continue to pray for peace for Jonathan's parents as I'm sure they are feeling very frustrated and powerless. And one more prayer request...we found out that Par might have a change of address--because he has done well, they told us they may have to move him out of his room onto the floor of the NICU (like where Ella is now) because there is a new CDH baby coming on Wednesday. We are praying for this little baby--that the timing of his birth coincide with Dr. Kays' schedule and that the mother have an easy delivery--and for the baby to have a quick and easy stay in the NICU. We thank everyone for their prayers for our little Par. Much Love, Liz, Rusty & Par the Glow Worm

SigEp in Training

2007-11-17T17:42:00.001-06:00

Par had a big day today—although when we arrived this morning he had not been put on the conventional ventilator as we had hoped. The ventilator is still just sitting there waiting to be used—but Dr. Kays just hasn’t been in since yesterday and he is the one that will do the switch from oscillator to conventional. This is a little frustrating because the hold up has nothing to do with Par and of course we just want him to take this next step—but we have to remember that God’s timing is what we want and if this is how it is going to be then okay. Hopefully Dr. Kays will be in tomorrow morning and we’ll be surprised when we come tell Par good morning.

So, this morning Par was just hanging out watching his bear dangle above him. We had a good report from the night nurse that Par had good blood gases and sats. He also had his foley catheter removed, so now he is peeing in his diaper like all the other babies! Thankfully he was awake and in a pretty good mood (as anyone who had just had their catheter removed would be!). Rusty and I had brought his music that he had been listening to while in the womb—he really loves music and so we played it for him while we were there and he seemed to enjoy it. When we left to go shopping for some coats (we didn’t bring any—this is Florida, it isn’t supposed to be cold here!) we put on a recording of me reading The Velveteen Rabbit—hopefully it put him right to sleep.

After lunch, we walked in to find Par on his tummy. And as a tribute to his dad and all of Rusty’s Sig Ep fraternity brothers, Par has started “bunny on head night” and continues to remain the coolest kid in the NICU. Aunt Sally arrived just as I finished my afternoon pump and was able to enjoy “Bunny on head night” live and in person. She hasn’t seen Par since a few days after he was born—so I’m glad she is back to spend some more time with him. Sal will be here all week for Thanksgiving break.

I decided to just sit with Par for a few hours between pumps—mom and Sal went back to the hotel a little after Rusty left. The nurse practitioner came over to tell me they were putting Par on 2 different types of antibiotics because of something they saw in his x-ray today—they thought they saw something in his intestine but she said it is probably nothing and they’ll get another x-ray tomorrow morning to confirm—but to be on the safe side, she went ahead and started him on medicine. She indicated that most likely it is a blur from Par moving during the x-ray (anything to get attention!)

Before I left for dinner and shift change, Tina gave me a little knitted baby hat from a woman named Tracy from Memphis, TN. Tracy is also a mother to a CDH baby that was treated by Dr. Kays at Shands. Tracy’s son Jonathan was born in May and passed away at the very end of July—just days after Ella’s birth and days before our initial visit to Shands. Her strength is inspiring to me—she knows of Par and the other baby Jonathan from Tina and Josh. For her to give us such a precious and thoughtful gift—well, words can not express how touched Rusty and I are right now. We pray that God will continue to give her this strength and peace so she may continue to touch other people’s lives with the life of her son Jonathan.

When we went back to tell Par good night he was wearing the hat—it is the first hat he has ever worn and it looks precious—you hardly notice the brain strip on his forehead now, right? He was happy when we saw him, but then we turned on the light to take the picture—so please do not think his crying is a reflection of his thoughts on the hat—we can tell that he loves it very much. Par was in yet another position this time—I guess now that he is stable they try and reposition him as much as possible—we’ve been told that it will be much easier to do this once he is on the conventional ventilator because those tubes are much more flexible. After we turned on the light and he got upset it took a little bit to calm him down—he loves the song Twinkle Twinkle Little Star—he especially likes the second verse of the song—Twinkle Twinkle Little Par—it calms him down every time. We said our nighttime prayer out of a book given to us by the Elizabeth Ministry at our church in Birmingham, The Cathedral of St. Paul—it is such a thoughtful gift and I look forward to using it with Par. After the prayer, we left him sleeping peacefully—hopefully we’ll have a surprise when we visit him tomorrow—but only if the timing is right.

As always, we continue to pray for Ella—it seems that she will be having her surgery for a feeding tube next week. We ask that the Lord will comfort Tina and Josh with this decision and that Ella’s surgery and the days leading up to it will go smoothly. We continue to pray for Jonathan who is still on ECMO—we ask that God will strengthen him and continue to heal him. And we thank God for Tracy and for her strength and for sharing her son with us through the gift of a hat for Par—something we will treasure forever. We know Tracy’s strength and peace can only come from the Lord and we praise Him for His constant love for us.

Thank you for your love for us and our baby—we are so grateful for our friends and family. Much Love--Liz, Rusty & Par the SigEp in training

Ba-Bye!

2007-11-16T22:21:00.000-06:00

Well, it has been quite the day for precious Par. Of course, when Rusty and I arrived he was asleep (and had been awake earlier) but just as soon as we stepped into his room, Dr. Kays walked in. He told the respiratory therapist to wean Par down to .5 on the Nitric Oxide over the next 3 hours and then said he’d see about putting him on the conventional ventilator this afternoon. Guess what…

Ba-Bye Nitric Oxide machine………FOREVER…

Yes, at 2:00pm Dr. Kays waltzed on in to Par’s room and looked at the machine and then spun the knob from 2.0 to 0.1. It sort of scared me because just a few hours earlier he had said to only wean to .5. He then looked at some of the other machines, agreed with me on how cute Par is and then went to tend to Jonathan next door. About 10 minutes later, Dr. Kays came back in and turned the machine off and yelled to the respiratory therapist—2:10pm/NO is OFF. Par and I were thrilled—although he was asleep at that point.

I then went to pump and mom arrived to sit with Par for the afternoon. When I returned from pumping the conventional ventilator was in our room. Mom was smiling and said Dr. Kays had just stopped by again and ordered the delivery of the conventional vent and implied he would be putting Par on it sometime in the near future. Again, Par slept through the excitement.

He wasn’t awake that much today—although he had his moments. He was sort of cranky —but I think it was because he’s been moved around a lot lately and he’s just not used to “change.” When we went to tell him goodnight he had been moved again—onto his right side and was being entertained by a blue bear hanging from his heater and his little lamb sitting right in front of him. He had a couple of little “get this tube out of me” fits between his games of “opossum.”

Although it was disappointing to return tonight and find the conventional ventilator sitting there and not plugged in—Rusty and I realize that we are so blessed to be in this position—Praise God for Par’s healing! We thank God for His perfect timing and His love for each of us. We know that God’s timing is key in Par’s recovery and although we want everything fixed now and in our timing, we know that isn’t best for Par and so each day we have to hand it over and say, “Lord, Thy will be done.”

We continue to lift up Ella and Jonathan in prayer as they continue on their CDH journeys. Jonathan is still on the ECMO machine—and his mom and dad are just so tired—I pray for them to be recharged by a peaceful nights sleep. Ella’s parents are battling the sniffles and her mom was out of town today (due back tonight)—I know they are ready to make some decisions about the next steps for Ella and we pray that they will find peace with their decision.

Thank you to everyone for continuing to pray for our little precious Par. Thank you for allowing us to share his journey with you--from surgery to monkey feet--your prayers mean so much and we truly feel the love surrounding us with each day we face. Much Love, Liz, Rusty & Par and his monkey feet

Happy Birthday, Par!!!

2007-11-15T20:00:00.000-06:00

That’s right! Par is two weeks old today!!! Wow—to think what all has happened in just two weeks! Par has spent most of the day sleeping (boy do I envy him!). When we (mom and I) arrived to visit he was conked out. I was told he had been bright-eyed and bushy tailed all morning—he was looking around (probably looking for his mama and daddy) and sucking/gumming on his tubes. SO…….he got two (2) birthday gifts from the nurses.

The first is this clever mobile made of yellow tape and neon stickers. They said he was so alert they felt like he needed some stimulation so they made it for him.

The second present was a pacifier. They said his sucking/gumming of the tubes may just mean he wants something to suck on (because it is part of his natural instinct) and so they gave him a pacy and he started sucking right away. It doesn’t stay in great because of the tubes, but when I hold it for him he loves it and just sucks away! It is refreshing to see him do something so natural—and it is a good indication that he will take to oral feeding, as well as breastfeeding. A lot of CDH babies have oral aversions and strong gag reflexes because of the tubes they’ve had down their throats—they associate anything going in their mouth with the way the tube felt—so getting them to eat can be difficult—not to mention that swallowing sometimes has to be “taught” because if they go too long without doing it from birth—the brain thinks it doesn’t have to. So seeing Par with this pacifier is really great news since I really want to be able to breastfeed him. Please pray that he’ll keep working on these great exercises (sucking and swallowing) as they are vital to a successful recovery.

Rusty was out of town today—he went to Mobile for work but got back late tonight. Thank goodness Par slept most of the day so he didn’t notice his daddy’s absence. Unfortunately, he literally slept through his entire birthday—when we went to visit tonight when Rusty got home he was asleep again (but apparently had been awake while I was gone—tricky tricky!). We got one little picture of a semi-smile—almost a little smirky like he is fake sleeping.

On the vitals front-- his blood gases have been so good that they have turned up the hertz to 12 and turned down the amphs to 28—I really don’t know what all that means except to say that both are an indication of progress toward putting him on a conventional ventilator—so we know it is a positive thing and we wholeheartedly praise God for every little bit. They discontinued all of his antibiotics today. WOO HOO!

Nurse Meg (she’s been with Par before) is with him tonight and has plans to turn his head—they turned it before but had to put it back because of the central line taping coming loose. But they have to replace all that tonight and so they plan on turning it. Because it has been on his left side so much there has been some fluid build up on his left side of his head and face—but once he is repositioned it will go back to normal—just part of being in the same position for such a long time—but we know Nurse Meg will take care of him and we can’t wait to see his new position in the morning.

We humbly thank God for another day of progress and we are so thankful for every person He has sent into our life during this journey—we are amazed daily by the people we come in contact with that are so uplifting—from the emails and cards to the doctors, nurses and even the custodial staff here at Shands. Please continue to pray for Ella and Jonathan and their continued recovery.
Love, Liz, Rusty & Birthday Boy

Our little Weaner!

2007-11-14T21:42:00.000-06:00

Yep...Par's just been weaning away! Tonight he is completely off his Epi drip, his Versed is down so low that there is nothing more to wean, just to stop the drip (but they haven't stopped it yet), his Nitric Oxide was turned down to 7.2 by the end of our visit tonight with orders for it to be down to 4 by morning (if he's still doing well), he had his belly sensor removed and finally, his oxygen is down to 50. The nurse said that there is talk of his Replogle tube (the one in his nose) being taken out by the end of the week (Par will be so excited!)and...with everything going so well--he may be switched to the conventional ventilator by the end of the week.

So here is the hard part--I have my hopes up so high. This is reminiscent of turning 16 and being SO SURE that my parents were giving me a car for my birthday (even though they said they weren't) and then waiting all day for them to surprise me with my car--the one that never showed up. Anyway, I just can't help myself--things are going so well and I find myself getting ahead of the game and in my mind he'll be fixed and ready to go home next week. I pray that God will calm my heart and mind--I pray that He will give me perspective so I may be a good (rational) mother for my son. I pray that God will comfort me as I learn the hard way that the road of CDH is bumpy--even though this stretch of it seems smooth. Rusty and I try to remember to be patient and we constantly remind ourselves of little Ella's journey and that Josh and Tina have been here for nearly four months (they are a perfect model of patience, perseverence, and trust in God during this journey we are now on). Nevertheless, it is hard to believe that only a week ago little Par was there with the ECMO machine warming up and blood in the cooler. With that being said, Rusty and I thank God for these good days that he has given us this week so we can experience loving our sweet baby on an upward climb.

This morning I read Par his daily Bible story and devotion (he always listens so attentively). He really does like his story time and when he is awake he stares at me as I read. This morning he was tired--but I'm positive the message was still heard. After that, he was awake for much of the day, but when he would settle down (allowing me to sit down) he would once again start moving around and "act up" so that I would get up and quickly come to his bedside to comfort him...I'm convinced this little boy is learning to "work the system" and will be so spoiled by the end of all this.

On another note, we are guessing Par was trying to get at his tubes again last night with how "bound up" he was--some how he still looked precious. This is probably good training for when we have to put him in a straight-jacket for being a mischievious little boy!

We continue to pray for baby Jonathan--he as put on VA ECMO today (he had been on VV ECMO). I had thought he was having his surgery today but it was postponed again. Please pray for his parents to have strength and understanding as they continue to wait for their son's repair surgery. Also, we continue to pray for Ella and her recovery--and her parents as they fight off the sniffles. Rusty and I know that this journey would be much more difficult without these two families--although we may not speak every day or know much about each other--their presence alone gives us strength as we stand at our baby's bedside. Again, I ask God to bless Par, Ella & Jonathan--such precious children.

Thank you for your continued prayers and support for our family.
Love, Liz, Rusty & The Little Weaner

Movie Star Par!

2007-11-13T21:59:00.000-06:00

Par is going to be featured on the Children’s Miracle Network! He made is filming debut this morning—and slept all the way through it. I humbly accepted the role to play the loving and adoring mother to him—he was excellent and I expect we’ll now have to get him an agent—but I guess that can wait until we get back to Birmingham.

Dr. Kays has ordered to continue weaning the Nitric Oxide—it should be down to 10 by the end of the day. Depending on how his sats and blood gases look—they may continue to wean—but as they say over and over—it has to be very slow. It is now down to 11 (it was last weaned to15). They have also cut his Epi drip down. His oxygen is at 55 and they are weaning to 50 by the morning.

They told me he was wide awake this morning for about an hour just looking around—fussing a little bit—obviously just wanting his mama and daddy. When I got there he opened his eyes just slightly and then fell fast asleep—he just had to make sure I got there.

When they made rounds this morning I heard only positive things said about Par’s progress—they mentioned the fever from earlier but indicated it had been taken care of and isn’t an issue anymore. His incision looks really good and is healing so well…

I took off one of Par’s boxing gloves while he was sleeping—just to make sure they are still the cutest hands I’ve ever seen (and they are!) and he grabbed on to my finger. When I would try and pull away he would grimace and when I stopped he would relax—It was like he was this little puppet—pull, grimace, stop, relax, repeat. He is so precious—I know I really shouldn’t mess with him like that—hopefully he’ll just think it was part of his dream.

I got to be Par’s mama again today. I asked about his oral care and the nurse said I could do it—he has some “stuff” around his lips and mouth from all the tubes and tape and she showed me how I can clean it off myself—so I did it and he just gazed at me (the nurse had indicated he would probably fuss). Then I put him to sleep. After some tube tugging episodes that ended with me yelling for the nurse to come in (I’m sure I overreacted, but I would do it again—I’m sure I will do it again)—anyway, after all of the commotion little Par was understandably upset and I settled him down and then I put him to sleep. This is way different than me standing there and him falling asleep—I got to calm him and I could see he was tired and I cupped his head and feet and sang him some songs and whispered how much we love him and he drifted off to sleep. It was a wonderful feeling—I feel more and more each day that he knows I’m his mama. I know he knows instinctively that I’m his mama—but now it seems that when he looks at me he “recognizes” that I am his mama and I’m different than all the nurses who do stuff to him. He looks at me and immediately relaxes—very powerful feeling—another gift from God, I know.

When Rusty visited tonight Par was asleep but then woke up about 20 minutes into our visit. He was wiggling around a bit and then was able to make the slightest crying sound. I thought I had heard it earlier today but wasn’t sure, now Rusty has heard it—it is very soft and really weak sounding—but that is our little boy’s sound and I’ll take it any day over a silent cry. I asked the nurse how he is able to make the noise and he said it is because the ET tube isn’t cuffed like it would be in an adult and therefore it can have air leak out allowing him to make a slight noise. He said it doesn’t hurt him.

We continue to pray for the recovery of Par, Jonathan and Ella. May God bless their sleep tonight and send dozens of angels to comfort each of them during the night. I still am in awe by all the people around the world praying for these special children—and we thank you. We continue to take comfort in the plan of our Father—and although the roller coaster is going “up” right now we know there are sudden drops and we are clinging to Him for the next drop. Our prayer is for His perfect timing and for patience.
Love, Liz, Rusty and Movie Star Par

"Look Mom, No Hands!"

2007-11-12T22:12:00.000-06:00

Par has been a bad little boy today. When we visited Par this morning we found out that he had pulled his ET tube out (endotracheal, the one that is breathing for him)—they had to replace it (obviously) which isn’t a very comfortable thing because it is his biggest tube. I’m so glad we weren’t here when that happened—it would have been scary for us to watch them bag him while they changed it out.

During my stay with him from mid-morning to the late afternoon he managed to pull his red rubber out about 8 times. The first 7 times he was using his hands, first pulling off the tape and then pulling out the tube. Not to be redundant, but my kid is a genius to understand such a complicated task of needing to “first do this, then you can do this”—not to mention that he obviously has unbelievable coordination. But I digress.

So…I asked the nurse what we could do to prevent him from pulling it out again and she got some really strong tape (I have no idea why they wouldn’t have used this before). It definitely works and he hasn’t been able to get it loose…so he’s moved on to his ET tube and started pulling on it…and then I remembered my little NICU kit that I made before we got here—it has mittens in it. So we put these little mittens on Par’s hands—he didn’t get upset or anything but he looks like a little light-weight boxer. He was throwing punches at the air for a little while and then he calmed down. I saw him reach up to his red rubber a few times and pull his mittened hand back down. Then his little face scrunched up and he was silently “wailing” so I jumped up and asked him what was wrong—he stopped crying and just kind of looked at me with his big eyes and the red rubber started uncoiling out of his mouth. His little look said it all, “Look mom, no hands!”—he had “gummed” the red rubber up—this thing is 24 cm long—quite impressive. We’re bringing the cherry stems in for him tomorrow to see if he can tie knots in them with his tongue.

Rusty and I saw Par’s x-ray from this morning—it is a full torso x-ray (I think there is some special name for it). We saw that his right lung looks much clearer today than it did yesterday—so that is good news. We also saw that the left lung has sprouted even more—an untrained eye (ie- Rusty and me) might think at a glance that the lungs were about the same size—but keep in mind, the right lung isn’t normal size either, it is just the least compromised of the two—but we are blessed because they both seem to be a decent size---how well they will work is another story. The nurse practitioner is the one who showed us the films today and I started asking her questions about changing over to the conventional ventilator—I was sort of taken back when she said “because Par is critically ill..”—I sort of wanted to correct her. He seems so “social” now that he’s been awake and he has taken to our cupping his head and holding his hands and feet so well…he seems so perfect to me—I guess I sort of forget how long this road is… If you are following Ella’s story, her mom touched on this last night in their update and I hadn’t really thought about it…but we do/have become desensitized to stuff because this becomes all we know. Tina and I are both first time moms—although everyone knows that what we are going through isn’t typical—it is all we know and we are surrounded by the same type situations throughout the NICU. Anyway, it sounds so negative to say Par is “critically ill”—I prefer “high-maintenance life-liver.”

Rusty went to the hospital after dinner and I stayed home for yet another pumping session—it was actually pretty good timing because that way Par’s GiGi (Rusty’s mom) could spend some good quality time with him before she leaves tomorrow. When I arrived about and hour later I found that Par’s nurse had spoken to Dr. Kays and we got some exciting news—THE RED RUBBER CAN GO! There was my precious baby free from that bad red tube—I had told him I would get rid of it for him—I’m glad I could keep my promise. Also, Dr. Kays ordered them to go down on the Nitric Oxide—it was on 17 when I was there and they are weaning it to 15 by morning. Every step counts—I count these as victories! Praise God for healing our little boy—even if it is with baby steps!!!

I haven’t seen Dr. Kays today, but I’m interested to see what he thinks about Par’s recent blood gases and pre/post sat numbers—his sats have been 100/100 for most of the day today and his blood gases have been “better” than before—not great, but definitely improved. Please keep praying for precious Jonathan and Ella as they continue to heal. We ask that God will continue to heal them and give Dr. Kays and the nurses discernment in the proper treatment for each of them. God is so good with what he has given us—We look forward to each day seeing and loving on our precious baby.

Par is a Genius!

2007-11-11T22:21:00.000-06:00

Our baby boy is a genius. Apparently he has been watching his nurses take his tubes in and out to clean/replace them and he has figured out how to take them out himself. Yep--that's right--he is removing his own tubes--mainly the red rubber one. Several times we (Rusty and I) have strategically placed his blue bunny to intercept his little fingers--but he is VERY sneaky and has managed to fool even us into believing he is playing with the bunny when really he is removing the tape in an effort to pull the tube out.

Today we had a nurse during the day that we absolutely love--only here a little more than a week and Rusty and I definitely have our favorite nurses. She was very attentive to our little Par--he seems to like people fussing over him. He also really likes me holding his feet and playing with his tiny little toes and putting my hand on his head. Rusty attempted to give his hair a mohawk today--he likes his hair played with--just like his mom! We didn't see Dr. Kays today--he seems content with how Par is doing. They weaned the Nitric Oxide to 18 (down from 20) and his oxygen to 60. Dr. Kays mentioned to Par's nurse that he might put him on a conventional ventilator by the end of the week...we'll see.

After being in the same position since birth (except when they moved him for the repair) Par got a new position--he is very relaxed--he has his head back and feet propped up--I love it because he has the cutest feet! He seems to like it better because he isn't always looking left (although that could be great practice if he wants to be a NASCAR driver).

Rusty and I got to see Par's x-rays today from before the repair and after. It is amazing--we can literally see the left lung grow right before our eyes. You know those little capsule things that you put in water and it grows into a sponge animal--that is how this lung has reacted to having more room in the chest. Right after the surgery is this tiny bud of a lung and then the next day it has "sprouted" and then the x-ray from today it is even bigger! For size comparison from the day of surgery to today--think of the difference in a grape and an orange--isn't that an amazing difference. Praise God--the human body is amazing!

We do have some not so great news--Par has been running a low-grade fever and they sent some cultures to the lab and they came back preliminarily positive for what would be the onset of pneumonia--but he was already on 3 antibiotics (for the repair surgery) and they started him on 2 more for precaution. We pray that we have "caught" this early enough for it not to be an issue--as you can imagine, an infection in his lungs can be very dangerous. They showed us the cloudiness on the x-ray indicating some "junk" that could be the infection--hopefully his film tomorrow will look clearer. FYI- this is only in the right lung (the healthier lung) and his left lung looks great.

Rusty and I went to check on him tonight and found him asleep with his right hand stuck to tape that had once been attached to his red rubber. His left hand was on the red rubber--and guess what--it was pulled out. He had a new nurse tonight so I tried to stress to her that he pulls them out on purpose so she needs to check it frequently--not sure if she will--she sort of thought I was kidding--until I had to get her because he did it again while we were there. Hopefully she gets it now.

He was asleep when we left--although it was hard to leave him in the hands of a "stranger"--the other nurses were just more friendly and warmer--his nurse tonight just seems like she wants to keep to herself--although, she is very nice and she responded without hesitation every time Rusty and I had a question--I guess it is the same feeling one gets when hiring a babysitter. It was still difficult to leave, so we told Par that he would have to fend for himself tonight and Rusty told him if he needed us we were at the Homewood Suites Rm 311--but I'm sure he'll do just fine.

Correction for an earlier post--the incision is 9cm, not 9 inches--my mistake!

Please continue to keep Jonathan and Ella in your prayers along with Par. This little babies are so precious--and such little fighters! We thank God for everyday we have with our babies--even if the setting/place is not our ideal--we trust in God plan and timing--He sees and He knows the complete bigger picture--how can we not trust in His timing?
May God continue to bless all the precious children in the NICU and all the friends and families praying for there day to come home.
Thank you for your prayers.
Liz, Rusty & Par the Genius

Par is Wide Awake!

2007-11-10T22:53:00.000-06:00

Our little Par has been shunting a good bit which causes his sat numbers to be low—possibly because Dr. Kays discontinued the hypertension medicine before his surgery and possibly because he just had major surgery—either way, Dr. Kays doesn’t seem terribly concerned about it—or better, I’m sure he is concerned, but he hasn’t changed any of his setting except to turn down his oxygen to 65—so we are going to try and remain calm about it. Before, these numbers were a major part of the decision of whether or not to go on ECMO—it is hard for us to change gears and not be concerned about the numbers—but no sense in worrying about something that isn’t the major issue right now. Also, his nurse noticed that even though his numbers are low, they are better when he is awake--so Dr. Kays ordered that his sedation be decreased.

Dr. Kays is still watching his abdomen. It looks even better today. Par was wide awake most of the time that we visited him today-it was wonderful. He woke up for his daddy this morning when we first went and then after lunch he was wide awake when Boo and I sat with him. It felt so good to sit next to him and interact with his innocent little eyes. He seems mesmerized by all the lights blinking around him. He only “cried” a couple of times when I was there today—but all I had to do was put my hand on his head and one on his foot and he would calm down immediately—OH! I just love being his mother!

Baby Jonathan who is right next to Par has been having a rough time—please lift him up in prayer. He is back on ECMO and is having his repair surgery tomorrow morning at 8am. I spoke to his parents tonight—they seem drained so please pray for them to get a peaceful nights’ sleep so they can be 100% tomorrow. Lord, I ask that you will lay you hands on Chris and Jasmine and calm their hearts and give them a peace about their baby boy. We ask that you will give Dr. Kays the rest he needs and a clear mind to repair baby Jonathan’s hernia. We know you are the great physician and we trust in your plan for this child of yours. Amen.

Also, please continue to pray for Baby Ella as she continues in her recovery and faces new obstacles. Pray that her parents will have a peace about any decisions they make for their precious baby.

Again and again I find myself in disbelief that God has given us this little baby boy. We look forward to seeing him tomorrow! Thank you for your prayers, as always—we know they are the fuel that keeps us going.
Love, Liz, Rusty & Par

Sweet Little Par...

2007-11-09T22:47:00.000-06:00

Sweet little Par is healing well. When we visited this morning his incision already looked better and he isn’t swollen at all—which is surprising to us because we expected him to be swollen all over. When we got to his bedside Dr. Kays was there with one of the reps for a piece of medical equipment he is using—they decided to try something new to monitor the intestines and the kidneys. They put the two additional monitors like the one on his forehead. One is on his back monitoring the kidney that was up in his chest and the other is on his lower abdomen monitoring his intestines. Dr. Kays admitted that he isn’t sure what he is looking for with regards to numbers from the monitoring—but if Par establishes a baseline for himself, he can then know if something changes if the numbers change drastically. These monitors aren’t harmful to him at all—and we continue to learn more and more about treating CDH—we feel honored to be part of this experiment. His other numbers aren’t where they need to be but Dr. Kays is okay just watching them—his main concern is the abdomen. It has been soft but you just never know—he’s had good urine output which is a good sign, but Dr. Kays admits that he can’t know for sure and that “he isn’t finished worrying about his abdomen quite yet.” That is fine, we hope he never quits worrying about our son, period.

When mom and I went back after lunch Par was more awake than I have ever seen him. He would open his eyes and look at me and then close them. Open them again looking somewhere else—eventually he kept them open and was moving his eyes around. He seemed to be a little “drunk” still from all the drugs from last night—plus, he is still on sedation medicine. He seemed very alert and was moving his legs and arms around. At one point he started crying really hard—it was so hard to watch—because as I have said before, no sound was coming out—but you could tell he would have been wailing if those tubes weren’t in his mouth. As his mother, this is VERY difficult to watch for a number of reasons- first, I immediately think he must be in pain—there is a 9 inch incision in his tummy and he did have major surgery last night—but then I remind myself of what Dr. Kays says—“Babies cry. It is what they do.” Knowing that my finger touching his hand calms him down reassures me he isn’t in pain or he would still be crying. The other reason is that my instinct is to pick him up and hold him to calm him down—but I can’t. Forget that he is so delicate because of his situation—but he is tangled up in the web of tubes and wires so it would be difficult to accomplish anyway. I’m sure it would be harder to resist if he were just laying there without any tubes—so I guess I can thank God for putting that barrier there so I’m not overcome with my motherly instinct. It was especially difficult to leave him this afternoon with him so awake—but of course, I had to pump and the nurse had to change some tubes and before I’d be back from pumping, there would be shift change and I would have to leave anyway. I could have pumped at his bedside but I just felt like that would be too much to do for one pump (they bring privacy screens, the pump, close curtains—it is sort of an ordeal).

I’ve been especially tired today from being up so late last night—again, I don’t know how Dr. Kays does it. When Rusty and I arrived in the NICU this morning tons of changes had been made—Ella (Par’s friend) had been moved to a more “social” part of the NICU. The little boy right next to Par had been taken off ECMO (praise God) and his parents have been told his repair surgery is in the very near future. The baby on the other side of him had been moved to a bassinet instead of the kind of bed Par is in.

Rusty and I went back to visit with him this evening—he was sound asleep. His little lamb was sitting next to him and his blue bunny was serving as a tube prop. His left hand was in mid-pat as though he fell asleep while patting the lamb. It was so cute. I think his incision looked even better—his numbers were about the same and they had to go up on the nitric oxide a bit. I pray that he’ll have an uneventful night—the more time that goes by without any “complications” the better—obviously—but with regards to his abdomen, I’m just waiting for Dr. Kays to tell us when we can breathe a sigh of relief.

Thank you for all of you prayers yesterday—I know that every one of them was heard—how amazing to think of all those prayers for our son being lifted up to heaven for the glory of the Lord! If you go to ellawest.com and see yesterday’s post there is a really powerful picture they’ve included. Thank you again for your prayers.
Liz, Rusty & The Upgraded Par