Merry Christmas!

Matt, Jack and I had a wonderful Christmas with Matt's family.  Jack didn't make it home yet- but he's done so well the last week, we've definitely seen some miracles!  On Christmas Eve, the doctor's decided to move Jack to the nasal cannula, so a big step there- and only after a few days on the CPAP!  He's on 1 liter of oxygen right now and once he's down to 3/4 of a liter, then he can hopefully bottle/breast feed if he's ready.  They are beginning to assess him at each feed today and if he meets certain criteria at each feed (awake, etc), then they'll see if he's ready for feeding.  The technique they use is called "cue-based feeding."  I'll write more about that once I learn more.  Very exciting!  We are so very proud of him- making such big strides the last week! 

Jack is up to 5 lbs, 13.5 oz as of last night- he gets to start wearing newborn size diapers today!  Big step up!

God is good- we're so thankful for the gift of a wonderful, beautiful son this Christmas.  We can't wait until we're able to bring this gift home  :)

Below are a few pics from Christmas- Matt and I in front of the tree at his mom's house, St Martin's on Christmas Eve (such a beautiful service!) and Jack in his "first Christmas" outfit on Christmas Day.

CPAP!

Wonderful news- Jack moved to the CPAP on Wednesday!  Praise God- progress!!  AND he's at 26% oxygen this AM (room air and goal is 21%), so he's doing so well!  He's also up to 5 lbs, 11 oz.  Getting so big and cute, if I do say so myself  ;)  He's still in Level III, but hopefully he'll go to the nasal cannula soon and then he'll move to Level II and get to start bottle/breast feeding. 

Jack got to meet Santa on Tuesday- one of the respiratory therapists dressed up and so Santa was able to hold him and get a professional picture.  Below are the ones that Matt and I took with our camera.  Cousin Miles let him borrow an outfit to wear to meet Santa and one of the nurse knit his Christmas hat. 

In other news, our sweet, white boxer, Tucker (below) had to have surgery on Thursday to remove two mast cell tumors that we found on his hip and his leg.  He's still in recovery- trying to keep him still so the wounds heal is not easy!  We sent the tumors off to be analyzed, so please pray that they got everything and that he recovers well.  We can't wait for Tucker and Jack to meet- we are sure they will become best buddies!

Update

A quick update from yesterday- just talked to the Dr and Jack's blood gas looked good this AM!  They are going to lower his breaths per minute from 35 to 30 and see how he does.  They'll do another blood gas on Wednesday to see how he's doing, but if all goes well they are going to start to wean him off the NIPPV so that he can go to the CPAP.  Great news!  Definitely an answer to prayers that we are seeing good progress!  Keep on praying  :)

XOXO- Christine

Two Months Old

Jack is two months old today - he'll be 9 weeks old on Tuesday.  His gestational age is 38 weeks this coming Thursday.  We can't believe it has already been that long.. we are so ready for him to come home!  He's still in Level 3 on the NIPPV for his lungs.  He has another blood gas tomorrow AM- praying that goes well and he can go to the CPAP.  He's up to 5 lbs, 5 oz- growing so fast.  He's taking 41mL of breastmilk, 8 times a day- which is about 11 ounces a day.   He's still taking all his feedings through an OG tube- we aren't able to start bottle or breast feeding until he's down to the nasal canula (which is after he's off the CPAP).

I decided in church today that I'm going to start praying everyday for a miracle- that Jack comes home by Christmas.  The doctors would probably think this was ludicrous, but I thought that I would try.  If God isn't ready for him to come home by then, then we'll be peaceful that He has a different plan.  It would truly be a miracle for him to come home by Christmas.  We will see!  

Praying for patience everyday for Jack's homecoming- "But if we look forward to something that we do not have yet, we must wait patiently and confidently."  Romans 8:25

Mommy and sweet Jack time- love my baby boy.

 

 Uncle Greg got to meet Jack for the first time Saturday!  Jack wore his Aggie hat for him

 We made Christmas onesies in the NICU Support Group-  "Jack Frost"

8 Weeks Old

Jack will be 8 weeks old tomorrow.  He's doing well on his growth curve- up to 4 lbs, 14 oz as of last night.  He was in the 3rd percentile in height, weight and head circumference when he was born, but he's inching towards the 10th percentile now.  The doctors' goal is for him is to hit the 50th percentile.

He's been pretty up and down with his lungs- we are having some good and some not so good days.  He's been fluctuating on the required oxygen- goal is 21% (room air), and he's at 30% this AM, which is much better.  He was up to 40-45% on Saturday, so he's been moving around alot.  They increased his diuretic on Saturday due to his increased weight, so that could have helped bring him down.  He had his weekly blood gas this AM and it looked better, so they are going down are a few of the NIPPV settings.  His lung x-ray from this AM looked about the same (hazy). 

Matt and I keep hoping and praying that all of his growth will help his lungs mature and grow- the doctor's say that they will, all on his timing.  Matt and I are definitely ready to bring him home- we've been at the hospital for over two months now and we can't wait until we're able to hold him and love on him at home.  I miss him so much when we aren't at the hospital- I pray hard everyday that he's home soon.

Here are a few pics from the last few days- Daddy gets to hold him on the weekends, as he's able to visit for longer (we have to hold him for at least an hour each time and can only hold him once a day.  We try to hold him for as long as the nurses will allow each time  :) 

Proud Daddy

 Daddy holding him and holding Mommy's finger there

 He loves to sleep on his hands or his arms- so cute  :)

4 lbs!

Jack is up to 4 lbs!  He hit the 4 lb mark last Thursday night- we were pretty excited!  He actually reached 4 lbs, 4 oz Saturday, but he lost the 4 oz yesterday... they think it could have been fluid in his lungs, so that is good thing he lost it.

He's doing okay on the oxygen- he's at 36% oxygen today- goal is 21% in order for him to move to the CPAP.  They say that his growth is really the only thing that can help his lungs develop right now, so each day he gets a little bigger is good.  We still have a number of things that have to happen for him to get home by his due date, so we're not sure if that is going to happen, but we're still praying that God works a little miracle for him to be home by January 3rd  :)

House divided!

Jack with his new Aggie hat

Jack with his Longhorn hat

Sweet baby boy

Thanksgiving

We had a good Thanksgiving- very low key, so it was nice.  We went to visit Jack in the AM and then lunch and football the rest of the day with my parents.  Jack was sad about UT's showing with TCU, but he's happy that the Aggies have been doing so well  :)  The only hat that fits him right now is a UT hat, so Matt will probably be shopping soon to make sure he's got both gear!

Jack is up to 3 lbs, 11 oz now- he's almost gained 2 lbs since he was born.  He looks great- definitely filling out.  Some exciting news from last week- Jack can wear clothes now!  They had to wait until he could regulate his temperature and he's finally one step down for temperature monitoring, so that is great.  My laundry loads have definitely increased, he goes through a few outfits a day!  He's taking 32 ml's of breast milk per feed, 8 times a day, so he's doing great there as well.

We had a good conversation with the doctor on Saturday about when Jack will be able to go home.  We have three goals right now- 1. he needs to be off oxygen  2. after he's off oxygen, he'll need to be taking 8 bottles of breast milk a day 3.  no A's and B's for 7 days (Apnea and Bradycardia, where he stops breathing).  Jack has done well with the A's and B's- had a few on the 17th, but hasn't had them regularly since Nov 9th, so that is great.  So- our biggest obstacle right now is oxygen.  He's still on NIPPV and his next step is CPAP.  We are praying that he's able to get off of all oxygen as soon as possible so that he can move to Level II and start bottle feeding.  They gave him a blood transfusion on Thanksgiving to increase his red blood cells and hopefully help his lungs mature a bit.  It hasn't shown noticeable differences yet.  They started him on a diuretic on Saturday to release any fluids from his lungs to help his breathing.  They are really doing everything possible to help his little lungs mature and be able to work properly without assistance.

Please pray specifically for lung development if you can.  We would love love love for him to be home by Christmas, but we have a few obstacles to get through before that can happen.  So, we really don't have a good idea of when he'll be home- will just have to take it all day by day.

Below are some pics from the last week:

holding Daddy's wedding ring

Passed out with Daddy's hand on his belly

In his new preemie outfit from Aunt Erin

Thumbs up for Matt's grandad, who had surgery last Friday

Happy 1 Month Birthday Jack!

I wrote this on Friday and forgot to publish it.. so here you go a few days late  :)

***
Jack is one month old today!  He has had a good week- he's gained a good amount of weight this week, up to 3 lbs, 1 oz as of this AM!  They were worried the weight gain was fluid in his lungs, so they gave him a diuretic and took some x-rays.  There was a little fluid, but not bad. He is growing fast, becoming such a cute little chunky monkey!

I read this verse in my devotional this AM and wanted to share- reminds me of how God's plan is perfect and we can't always see that in the midst of certain situations:

"Now we see things imperfectly as in a poor mirror, but then we will see everything with perfect clarity.  All that I know now is partial and incomplete, but then I will know everything completely, just as God knows me now.". 1 Corinthians 13:12

Matt and I wanted to thank everyone for your amazing generosity- the gift cards, dinners, cards, phone calls, texts- we are just overwhelmed by how incredibly blessed we are.  Below is the gift basket that Erin organized and so many of you contributed to- Thank you all!

Four Weeks Old Tomorrow!

Jack has had a good few days.  We called on Friday night to check on him and they surprised us with the news that Jack had moved floors.  There was an influx of babies that needed to be in Level III NICU and Jack was one of the more stable babies in Level III, so they moved him to an overflow room in Level II.   He still has Level III care, but it made us feel good that he was so stable and healthy... and that he's getting closer to moving to full Level II and then coming home!  The docs are still saying we can expect him home around his original due date (Jan 3rd)- I'm praying he's home by Christmas  :)

He also got a new CPAP machine last week- this one goes into his nose differently and stays in alot easier than the old one (thank goodness- it fell out a few times when I was holding him and it made me very nervous!)  This one also doesn't push on his nose the way the other one did, so looks much more comfortable for him.  Here's a pic of him today- he looks so snuggly and comfy!

 The one below is of us doing skin to skin today- we put in a pacifier so it blocks the air that leaks out from the CPAP and helps keep his oxygen saturation levels up.  I love his little hand!  AND looks like little boy might be outgrowing the hat that our amazing friends sent us!  Matt and I are pretty excited he's already outgrowing things  :)  He's up to 2 lbs 12 ounces, so he has gained a pound since he was born.

A better view from last week of Jack's monogrammed hat and the new CPAP machine below:

Holding daddy's hand during skin to skin on Saturday... LOVE.

A few of the signs on Jack's isolette- some sweet nurses and volunteers made the "Jack" signs and mommy made the Tucker sign- Tucker gave it a good lick before we took it up to show Jack  :)

Matt and I are doing well- just taking everything day by day and trying to stay positive and patient through the daily ups and downs.  God is good and He'll carry us through this- just trying to keep our eyes on baby Jack's homecoming.

XOXO, Christine and Matt

Election Day 2012

Jack gained an ounce- up to 2 lbs, 10 oz!  I got to hold him for the first time swaddled yesterday, I've only ever held him skin to skin before.  It was a little more difficult making sure his neck was in the right position for the best oxygen flow from the CPAP, but we got the hang of it and I was able to hold him for an hour and a half!  Could have been longer, but I had to go pump to get him some milk  :)  I talked to Jack about Election Day and how everyone was busy voting.  I was fortunately able to turn in my mail-in ballot (thought I was going to have to vote from the hospital a few weeks ago) in order to vote in person yesterday, so I told Jack all about that.  He was so sweet- just feel asleep in my arms while Mimi read him some stories.  Jack looked great- we had a good day.

Pictures of Jack

Holding Jack for the first time.  Heaven. 

Halloween onesie we made in the NICU support group- "Jack-O-Lantern"  

Jack holding daddy's hand

Our sweet baby boy at three weeks old (11/5/2012)- 15 inches, 2 lbs 9 oz

The Last Few Weeks- Updates

Below are my email updates from the last few weeks for anyone that missed them:

From November 5th:

Hi friends,

Jack will be three weeks old tomorrow- we can't believe it!  He is doing well- he got off of his ventilator last Sunday (he actually pulled it out himself!  He's a feisty one- he was ready to come off, so the doctor decided he'd leave it out) and he is now on NIPPV CPAP, which provides him with a little more assistance than a CPAP by itself.  

He's grown an inch and a half since he was born (up to 15 inches now) and is at 2 lbs, 9 ounces.  They started feeding him my breast milk through a feeding tube last Monday- they started him at 1 ml, 8 times a day and he's already up to 18 ml's, 8 times a day in just over a week.  Our goal is to get him to 22 ml's, 8 times a day- so not too far from where he should be!  He's done great with the breast milk, so we are all hoping that helps him grow big and strong.  I was also able to hold him for the first time the Friday before he was taken off his ventilator.  Matt was able to hold him the next day.  Holding him is simply amazing- he can be fussy in the beginning, but then he just melts into our chest and falls asleep.  It is just heavenly. Attached is a picture of me holding him for the first time.  I try to hold him everyday if they let me- they say that is great for his development as well.  He's also having ALOT of books read to him- when he's not being held, we are reading books to him or telling him what's been going on in the outside world.  He's also getting lots of visits from my parents, who have been in town helping us since I went in the hospital, and Matt's parents, who live in Houston.  Matt has him trained up on America and baseball- Matt just wishes he was old enough to vote!  :)

I've been going to a NICU support group meeting every week, which has been wonderful.  Last week we made Halloween onesies for the little ones (even though he can't wear clothing yet)- pictured attached.  The March of Dimes has some amazing resources for NICU parents, so that has been great support for us.  We've also made a few friends with parents who also have babies in the NICU.

I've decided to start a blog with (hopefully) more frequent updates- http://www.weiglefamily.blogspot.com/  or Weigle Family blog

Please excuse my amateur blogging skills- it appears that I'm 10 years behind on that technology  :)  I'll be updating this in the next few days with more pictures and entries.

One of the things that we've seen so much through this journey is how amazing our friends and family are... I know that sounds cliche, but it is so very true.

We love you all!

Christine and Matt

On Fri, Oct 19, 2012 at 11:40 AM, Christine Schwarte <cmschwarte@gmail.com> wrote:

Dear friends,

Thank you for all your prayers, calls and texts.  I know we've talked to a few of you, but wanted to make sure we updated everyone.

We had a rough Sunday night with my blood pressure spikes and baby decelerations in heart rate, and unfortunately it got worse on Monday.  The doctors began to worry about my health and a possibility of a stroke, heart attack or seizure, as my diagnosis had turned into severe preeclampsia.  They tried to change my blood pressure medicine, but nothing seemed to be working, so they decided it was best to deliver our sweet baby boy early Tuesday morning.  

Jack Matthew Weigle was born at 3:57am on October 16th.  He came out breathing on his own (although he's on a ventilator now to help develop his lungs) and they keep using the word "feisty" for him, which is a wonderful thing for a NICU baby. He is so adorable! He'll be in the NICU at least until his due date (January 3rd) receiving the best of care to make him strong and healthy.  The doctors and nurses have been amazing, so we are very blessed by that.

Thank you for all the love and support the last few weeks- we're prepared for a lot of ups and downs the next few months, but we are so hopeful and prayerful that all will be okay.

Much love,

Christine

On Oct 15, 2012, at 11:00 AM, Christine Schwarte <cmschwarte@gmail.com> wrote:

Hi everyone,

Great news- it's not a tumor!!  AND baby boy grew 7 ounces in 6 days (he is 1 lb, 13 oz)- so whatever we are doing here is working!  We are so very thankful we get to stay here at Woman's and that baby boy can hopefully stay in my belly much longer to get stronger and healthier. 

They have diagnosed me with preeclampsia- it's atypical because I don't have alot of the common symptoms, but I am having pretty significant blood pressure spikes.  They've been giving me blood pressure meds to try to control everything and think we just need to do some adjusting to better control the spikes.  Baby's heart beat is also fluctuating, so praying that stabilizes soon as well.  Either way, preeclampsia is so much more common and they see it here all the time, so much more manageable.

We'll be at the hospital until he is born, so praying for endurance on that front :)

Matt and I am so very blessed by such amazing friends- thanks so much everyone for your prayers and notes!

Much love,

Christine

On Oct 13, 2012, at 11:06 AM, Christine Weigle <cmschwarte@gmail.com> wrote:

Dear friends,

 

Apologies for the delay in me sending this- have been meaning to send for the last week, it's just been a pretty exhausting one... it's amazing how tiring bedrest is!  :)  I know I've talked or texted with a few of you, but wanted to provide a more substantial update just in case. 

 

So- a little background if I haven't been able to talk to you- I had some bleeding at work last Thursday (10.4) and my doctor told me to go to the hopsital to get it checked out to make sure everything was okay.  Matt was fortunately on his way to school, close to downtown, so he picked me up and we came in for testing.  Baby boy looked fine, but they did notice they my blood pressure was incredibly high- which is not normal for me, as it's usually pretty low and has been through all of my pregnancy.  They did a few tests and decided to keep us overnight for monitoring.  Over the night, baby's heart beat had some signigicant swings and my blood pressue was pretty volatile again, so they decided the next day to keep us to Saturday to test for Preeclampsia.  I didn't have any of the other typical symptoms of this (swelling, etc), so these were a bit perplexed, but they wanted to see what was causing my blood pressue issues.  We got those results back Saturday AM and everything else was normal- so no preeclampsia.  Baby's heart beat and my blood pressure were still irregualar, so they said I needed to stay for a few days until those were under control. 

 

On Monday morning, we met with a high-risk pregancy doctor, who did an additional, more accurate ultrasound.  He said baby looks really small for where he should be (12th percentile) and only about 1 pound 6 ounces.  They began to worry that my blood pressure spikes had caused a placental abruption, which had potentially caused the bleeding, and potentially affected baby's growth.  They haven't been able to see this on any of the ultrasounds, but they haven't ruled it out yet.  So- it was decided Monday that I would be on hospitalized bedrest until baby gets here. I've been on constant monitoring since last Thursday, which means I have straps around my bellly that monitor baby's heartrate and any contractions, so I feel better knowing they are contstantly watching if something were to happen.  I DEFINITELY miss home- miss being at home with Matt and Tucker, but I just keep focusing on the fact that the longer we are here with him in my belly, the less time he's in NICU without us here.

 

They are still trying to figure out the blood pressue issue, so they've had a slew of doctors come meet with me and they decided on Monday to start testing for some rare things just in case.  The one that they are most concerned with now is called Pheochromocytoma (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001380/).  I had an MRI on Tuesday and the results were "indeterminate."  The radiologist noted a small spot on my adrenal gland, which the doctors say could potentailly be the Pheo tumour.  Unfortunately, they can't tell conclusively, so they had to do blood and urine tests, which will hopefully help confirm.  The tumor is extremely rare and there are only a few places in the country that do the blood and urine tests, so it's taken longer than we hoped to get those back.  We were supposed to hear yesterday, but no word- so we're praying for Monday.   They have never seen a Pheo here at the Woman's Hopsital, so we'll have to move hospitals if that is what it is.  Memorial Hermann down the street saw two cases last year, so that is where we will go. It will definitely be a different atmposphere if we go there- will have tons of doctor's around and professors from UT Medcial will be involved because so few people have seen these in practice.  We are trying to enjoy the soft and coziness of Woman's just in case we do have to move.  They can't remove the tumour without removing baby (and removal is the only option), so they will decide if it's best to take him out immediately or to wait and monitor.  The chances of the tumor as still so low (.007%), think they just want us to be prepared just in case.  If it's not the Pheo, they will try to monitor my blood pressue with meds and we'll stay in the hospital, hopefully to full term.  My due date is Jan 3rd (40 wks)- 37 weeks would technically be full term and be December 13th.

 

Sorry for the long-winded email, just wanted to get everyone all the information we have. (Also somewhat therapeutic to write it all out <330.png>  )  Right now, Matt and I feel so very blessed that he has stayed in my belly another week and that he's hopefully getting stronger and healthier everyday that we are here.  He was 28 weeks on Thursday- so he still has an almost 100% chance of survival if he is born anytime soon.  We are also so blessed by my benefits with insurance and work- one less thing to have to worry about here.  Everyone has been so amazing and helpful and patient with us as we deal with all this.  It's amazing how quickly life can change, but it just reminds us that God is good and that His plan is so much greater than ours.

 

I'll send another email back when we get more information- hopefully Monday.

 

Much love,

Christine

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