Thursday, July 14, 2016

Notes from the NICU

I tried my best to document a little bit each day, just so we would remember the milestones and special occasions along this journey in the NICU.  My grammar is all over the place so please don't judge me for my writing skills!
 
Tuesday, June 21
Baylor Jace is born at 7:15 weighing 4 pounds 2 ounces via C-section.  Delivered by Dr. Lafranca and Dr. Guidry.  Mommy doesn't remember much because she was miserable from the meds! HAHA
 
 
 
Wednesday, June 22
Mommy's first day meeting Baylor. We didn't decide until this morning what his name would be. We tested out Jace Maddox or Baylor Jace and ultimately we went with Baylor. This was a favorite name of mine and we laughed because Dr. Lafranca said it fit because we had to "bail" him out at the last minute! On this day, mommy and daddy got to hold B for the first time!!
 
 
 
 
Thursday, June 23
This was one of the worst days of our lives. This particular morning, the doctor said Baylor was very sick and needed to test for bleeding on the brain as well as meningitis. Baylor had a spinal tap done on this day. Baylor also had a blood transfusion on this day. Brother and sister got to take a quick peak for the first time.
 
 
 
 
Friday, June 24
A second spinal tap was done but still came back inconclusive. Mommy was discharged from the hospital this day and left that evening around 7.  It was heartbreaking leaving my little guy but it was nice to get home to my other two loves.
 
 
Saturday, June 25
Day 5 in the nicu. Baylor wore his first shirt today! It was adorable. Nana, Papa, Papa D, Meme and my sissy visited today!
 
 
Sunday, June 26
Day 6 in the nicu. Baylor had a great day. We were able to kangaroo today for about an hour. Baylor's weight dropped from 4 pounds to 3.11.  His platelets dropped from 120 to 90 to now 60. We will continue to watch and monitor. Meme, Papa D, CC, Uncle Brandon and Jessica came by to visit.  Baylor is taking 11 cc's an hour on continuous feeds. He even pooped on mommy today!  Great day.

 



 

 

Monday, June 27
Day 7 in the nicu. Sweet boy made such progress today! He did drop his weight down to 3 pounds, 9 ounces but his platelets went up on his own today! He was taken completely off of oxygen today so he is tube free! He also was switched from continuous feeds to Bolus feeds. This will help prepare his body to eventually take bottles. Carrie and Meme came to visit today.
 
 
Tuesday, June 28
Day 8 in the nicu. Baylor Jace you are 1 week old today!! Mommy had a very emotional day today and cried multiple times! I cried because they wouldn't let me bring my robe in, and later when I was unable to dress him. Your weight dropped to 3 pounds 7 ounces, and you had to be put back on the high flow cannula for oxygen. You are tolerating the Bolus feedings but spreading each meal out over 45 minutes. You and I got to cuddle today for about an hour and a half in the rain. It was so sweet.


 
 
Wednesday, June 29
Day 9 in the nicu. Baylor had another good day, his weight went up to 3 pounds, 9 ounces! My sweet friend Corrie came to visit all the way from Texas and spent most of the day with me! We had such special conversation together and it was so awesome to visit one on one with each other. Other special visitors included daddy, Meme, Carrie and Aunt Candice. Our nurse was Ms Suzanne and we really grew to love her.
 
 
Thursday, June 30
Day 10 in the nicu. Bloodwork is looking good, still a few things need to improve but overall he is making progress. He is doing one bottle feed a day and tolerating it very well! Weight is up to 3 pounds 11 ounces. Mommy, daddy, Papa Steve, and Meme visited today.
 
 
 
Friday, July 1
Day 11 in the nicu. Baylor had another great day. He was able to let mommy give him a bottle but he tuckered out after just a few sucks! Haha...it was pitiful. Weight was 3 pounds, 9 ounces, so down a lil but that's ok. Meme, CC, Papa Steve, Mrs Jan, Aunt CC, BB and David Easton visited today. Daddy came by this morning before work.
 
 
 
 
 
 
Saturday, July 2
Day 12 in the nicu. Aubrey and Weston came to visit Baylor today! Aubrey got to hold him and she didn't want to let him go!! Nana also got to hold him for the first time! Such special moments. Baylor's weight was 3.10 and he is working on two bottle feeds a day. They tried him off the oxygen again today and he couldn't do it. He kept going into the 80's so they put him back on.
 
 
 
Sunday, July 3
Day 13 in the nicu. Me and my sweet boy got to cuddle for about 2 hours this morning all alone and it was so glorious. Weight is 3.11 and we are still doing two bottles a day. No bloodwork or labs today, just testing and growing stronger. Nannie and Dani came to visit today.
 
 
 
 
 
 
Monday, July 4
Day 14 in the nicu. Baylor had an incredible day. He was moved out of his incubator and into a regular bed!!! He is going to a bottle every other feed and most incredibly...he and I got to nurse today!!!!! I really never thought that was possible but he did amazing! He latched on and never once got frustrated. He nursed for a full 20 minutes and never let go. I am in shock. All his bloodwork and lived functions came back normal! The doctor told us he could go home as soon as a week! Praise the Lord!!
 
 
Tuesday, July 5
Day 15 in the nicu, Baylor is continuing to make great progress in nursing! It is such an incredible bonding experience for me and him. Mommy, daddy, Aunt Casie, Meme, Uncle Brandon came to visit. Weight was 3 pounds 11 ounces.
 
 
Wednesday, July 6
Day 16 in the nicu. Weight is up to 3 pounds 15 ounces. Nana and Meme came to visit as well as mommy and daddy. Today we tried taking Baylor off oxygen completely!  He struggled a little but we were determine for him to push through. The faster he gets off oxygen, the quicker he can go home!
 
 
Thursday, July 7
Day 17 in the nicu. Today was a wonderful day! Found out our insurance deductible won't be as much as we thought.  God is with us even in the small things. So thankful our Baylor is getting the best possible care.
 
 
Friday, July 8
Day 18 in the nicu. One of my bestie's... Carrie spent the morning hanging out with me and Baylor. Such special moments and conversations have occurred in this hospital room.  I am so thankful for my precious friends and all the support they have given me. Carrie and I had such a blessed time together...she is truly been a rock for me through all these days.
 
 
 
 
Saturday, July 9
Day 19 in the nicu.  Baylor is up to 8 bottles a day and is doing his carseat test today!  Nana and Papa came to visit today. Papa D came as well and we spent about 2 hours together just talking and hanging out.  What a blessing!  Brother and Sister came today and boy are they noisy!  Both got to hold Baylor.  Doctors are talking discharge so we are anxiously awaiting that news!
 
 
 
 
Sunday, July 10
Day 20 in the nicu.  GOING HOME TODAY!  Sweet boy was discharged today.  His weight was 4 pounds and he barely fit in his carseat!  Praise the Lord for his mercies.  Can't believe this day has finally arrived.
 

Monday, July 4, 2016

Baylor Jace Moots- our miracle baby

I've sat down many times in the last few days, thinking I was ready to write about our sweet little man and his pregnancy and birth, but then been overwhelmed with emotions and had to stop. I can't really wrap my mind around the events that have occurred these last few days as a whole, I have to process things in bits and pieces...taking one day at a time, one moment at a time actually.

At my 33 week doctor's appointment, I was told I was measuring only about 28 weeks. I am not a huge person, so this wasn't really alarming to me as both of my other two were somewhat small as well.  However, my doctor was slightly concerned just because I mentioned that I did not feel this baby move very much at all.  In fact, throughout my entire pregnancy I would comment that I never really felt him move. I would occasionally feel a kick or two throughout the day, but never anything like I felt with my other children. I remember Christian and I spending one night, taking almost an hour, to try and get him to move or give us some indication of movement. We eventually did feel him, but that was just an early indicator to me that something was different about this pregnancy.  So at my appointment, Dr. Lafranca decided we needed to check on things via ultrasound. I went back later that day to see what was up.  At the ultrasound, it was determined that he was in fact measuring quite behind. He was about 6 weeks behind where he needed to be and only measuring in at about the 4th percentile for what was normal. Dr. Lafranca wasn't really sure what was up, so she decided to send me to Maternal Fetal Medicine, just to see if we could further determine what was causing his slow growth and development.

At our MFM appointment, the doctor spent about an hour performing an ultrasound and thoroughly checking him over for any signs of something being off.  He then took us into his office and informed us that Baylor was indeed small and honestly he was quite confused as to why he wasn't growing. He felt like everything looked normal with all his organs, but that he was just lagging behind.  He was also slightly concerned because he could not get a Doppler on the umbilical cord...something was off and he couldn't quite figure it out.  He knew that Baylor was functioning okay in my belly at the time, so he wanted to see me in a few days to check again.

We went back the following Tuesday, which put me at 34 weeks. We went in for the ultrasound and two doctors and the representative from GE (the sonography machine) came in to perform the ultrasound. The specialist also had trouble finding the oxygen going from the umbilical cord, but couldn't see that Baylor was in any distress.  They were overwhelmingly perplexed as to why the machine couldn't pick up on the arterial flow through the umbilical cord. They consulted other doctors and no one could explain what was happening. This made me as a mama very nervous. I knew his umbilical cord was his lifeline and to think that it was not functioning properly made me think it was just a matter of time before things went downhill. The doctors kept telling me to keep track of his movements, so I would know if anything was wrong, but I kept telling them that I couldn't ever feel his movements, so how on earth would I feel if something was wrong! I was a nervous wreck. The MFM doctor told me he wanted to see me in two days and we would do another ultrasound to check him again and then make a decision on what to do from there. As we were leaving, he said, "you know what, let's just do a stress test on his heart later today...just in case". Christian and I agreed and went home for lunch.  I went back to Lafranca's office a few hours later for the stress test.  I hadn't been on the machine for more than 5 minutes when the nurse flew in and told me to get on my side and handed me a drink. I was slightly confused, but did what she said.  About 5 minutes later, she came running back in and told me to go immediately to the assessment center. At this point, I knew something was up. I checked into the assessment center and they began monitoring his heart. He had absolutely no variability and you could see the concern on everyone's faces.

After a few hours of constant watching and tons of doctors checking him out, I was admitted to labor and delivery.  At this point, I started to have contractions on my own and each time I had even the slightest contraction, Baylor's heart would decell into a dangerous point. This was greatly alarming. At this point we had about 6 nurses in my room and multiple doctors on the phone and in the room. It was complete chaos. The doctor was extremely blunt and said, "ya'll have 30 minutes to get him out". At that point, I lost it.  I was informed that I would have an emergency c-section and may or may not be put to sleep. The thought of being asleep during his birth devastated me and I was just sobbing. I was immediately rushed to the operating room and I was just beyond scared of what was going to happen with Baylor. I knew he was in distress and things had gone bad very quickly. I honestly didn't care at that point about anything but getting him out safely.

Not 30 minutes later, I was prepped and ready to go. Thankfully they were able to give me an epidural and allow me to be awake for his delivery. We watched as the doctors pulled out our lifeless little boy.  He didn't make a sound as he came out and was purple. They spent what felt like hours, rubbing him raw to get him to respond. He actually had a nasty looking abrasion on his back from where they rubbed him so hard to get him to respond.  Finally, our little guy let out some sounds and was whisked away to the next room full of a whole team of nurses and neonatalogist.

I don't remember a lot of those next few moments or hours because I was so drugged up and miserable (morphine is my new enemy). It wasn't until the next morning that I was able to see my little guy in the NICU. I was blown away by just how small he was and all the tubes, wires and machines hooked up to his little body. As a mama, this was one of the hardest things I've ever had to see or experience... to see my little guy, fighting, helpless and so sick broke my heart in pieces. Every single plan and expectation I had had for my little guy felt like it was crushed, it felt like a cruel punishment that I couldn't even hold my sick child to comfort him and give him that love I so desperately desired to lavish upon him.  I couldn't even begin to wrap my mind around the fact that he was fighting for his little life.

Dr. Lafranca came to see me a day or two after his birth and told me, had they sent me home, and not done the stress test, she had no doubt that he wouldn't have made it to Thursday. She explained that my placenta had come back normal, but my umbilical cord was extremely flat, meaning not much oxygen or nutrients was able to get to Baylor throughout my pregnancy and that finally his little body had just had all it could take. That coupled with the  fact that each time I had a contraction caused his oxygen to be cut off, would have been detrimental to his tiny, frail body. Hearing those words, coupled with the emotions of the last few days, caused me to just break down in her arms. I knew it was vital we got him out when we did, but actually hearing those words from his doctor was like a punch in the gut. Christian and I can overcome a few weeks in the NICU and a traumatic birth, but I don't think I could ever overcome having to bury a child. I just wept at the mercy and the hand of God. It is only by His grace that Baylor was delivered safely.

On day two of his little life, we learned that even though he was here safely...he was most definitely not out of the woods. His bloodwork, organs and overall health were still functioning at very dangerous levels and his body was not well.  We were told that morning that they were going to do a spinal tap to check for bacterial and viral meningitis, as well as bleeding on the brain. Again, this was just absolutely devastating to Christian and I. We left the room with tears streaming down our faces, but faith that God brought this little guy here for a reason, and we were confident that He would walk us through this trial. We clung to family those next two days and prayed that God would once again come through in a mighty way. They did a spinal tap on Baylor at just 2 days old, as well as a blood transfusion because his platelets were dangerously low. The spinal tap came back inconclusive because of blood contaminating it, so they proceeded to do another one on him. Again, it came back with blood in it...we decided at this point to not risk another tap and just treat him with the antibiotics regardless. Over the next few days, we watched, waited and prayed and miraculously...Baylor began to improve. He has done amazingly well considering just how sick he was and how close we came to losing him, not only in the womb but with the infection that he encountered soon after birth. God spared his little life, not once but twice and we give Him all praise and glory.

Baylor has a long road ahead of him of growing stronger and bigger, he is just 3 pounds 9 ounces right now, so he has to get a good bit bigger before going home.  Doctors are keeping a close eye on his liver and heart, hoping that with time both will get back to 100%.  We are watching his platelets and bloodwork closely, just to make sure those improve over the next few weeks as well.

Our little guy has had quite an entrance into this world and our lives, making a huge impact on so many already. We have felt the prayers and support of so many, and I know I have said it before...but I'll say it again...we could not walk this road without our family and friends. So many people have been absolutely amazing and gone out of their way to offer texts, social media messages, meals, gifts and well wishes and each one has been felt whole-heartedly by Christian and I. We look at our tiny little miracle and we are in awe at the goodness of God. He has spared us from many far worse outcomes and He has sustained us throughout each day. We are so thankful to God for his divine protection and hand being on our Baylor. I have no doubt that God will do mighty things through my little guy and this is just the beginning of many testimonials of God's goodness in his life.

I pray that Christian and I will never forget these days, this journey, but that we will take these lessons learned and become stronger in our faith, more sensitive and caring towards others walking tough roads, and above all that we would be a witness to God's amazing power and might...may Baylor's story be one that does nothing but give glory and honor to God. As a family, we will only grow closer and stronger because of Baylor and his journey...we are so honored he is a part of our family and that God saw to it that he was able to overcome the toughest of odds, right from the start, and ultimately he will fight his way to a glorious homecoming! We look forward with great anticipation at his joining us at home with a clean bill of health....and on that day we will once again give all glory and praise to our healing Savior.  Keep fighting my precious Baylor...we are all cheering for you.










Our little warrior, tiny but oh so mighty.