Part 3: Journey to Baby Small Fry: Gastroschisis Birth & 98 Day NICU Stay

Hi Friends! I know it’s been awhile since my last Small Fry post, but this one was more difficult to sit down and write. I look through pictures from this time weekly & they still bring me to tears. I didn’t know any different then, but looking back it still feels really raw for me. Before continuing, please be aware I will include some graphic pictures of Warner from when he was born. While I am sharing this story with all of you, it is also a journal for our family to look back on in the future & that includes his newborn pictures, even though they may appear scary to others! 

So I ended the last post with us finding out Warner would be born with Gastroschisis. Between that and the day of his induction, not a ton happened. We had regular ultrasounds with my OB and we met with the specialists in Little Rock often. They did ultrasounds, measured fluids, and kept an eye on the organs that were exposed and how dilated they were becoming from the amniotic fluid. Each appointment, we had questions and most of the answers included “we will know more once he is born”. I felt like my birth experience was tainted by these words. I was so jealous of my friends that were able to look forward to the birth of their children & I was terrified of what would happen to mine after he was born into a world once he was outside of my safe womb.

I was told I would be induced at 37 weeks because the risk of stillbirth goes up for these babies after that time. I had started to dilate and was at a 2 when I went down to Little Rock for my last appointment before the induction, around 34.5 weeks. My OB had told us to go packed & prepared to stay as they might not want us far from the hospital since I was already dilating. That is exactly what happened. We got a hotel & booked it for the next 11 nights until my scheduled induction at UAMS. At my 36 weeks checkup, I was dilated to a 3 and the nurse stripped my membranes & said “you’re at a 4, now”!

It was the longest 11 days of my life. I was miserably nauseous & had extreme pain in my hips, which caused me to need to rotate every 15 minutes or I would wake up screaming in pain to Jordan that I was stuck. He was (and always is) SO patient, encouraging & helpful! He helped me roll from side to side, brought me soups & bland foods, and was seriously SO stable while I was freaking out. I tried to sleep for the next 11 days as much as possible. Jordan worked from the hotel & tried to stay busy. His parents visited a couple of times. One day we went to an outdoor mall so I could walk around a bit.

June 18, 2017 FINALLY came. Jordan’s parents, my grandma, & my sisters all came to Little Rock for the birth of Warner. I arrived at 10PM on Father’s Day & they started an IV & Pitocin. I started having mildly painful contractions and by 3AM my sisters & Jordan had convinced me to get the epidural & WHAT A BLESSING it was! I fell asleep & slept for the majority of the next 16 hours.

My night nurse, Julia, (who I loved!) continued to up my Pitocin & check my dilation. I was slowly dilating through the night and into the next morning. I had a reeaaalll sassy (not in a good way) nurse during the day shift. I was still taking Zofran for nausea and was starting to feel contractions. I told her multiple times I was in pain and she assured me that I was “fine and shouldn’t expect the epidural to rid me of all the pain”. The anesthesiology team came to check on me & I told them I was experiencing some semi-painful contractions. They said I shouldn’t be in pain with the epidural and gave a bolus of meds & told me to page them if it happened again. My sassy nurse came in and I told her they gave me a bolus but that I was still nauseous and asked for my Zofran again. She rolled her eyes and muttered “you’re really starting to grate on my nerves”! She is lucky I had the bolus and was feeling good & sleepy. Mind you, I had slept 90% of her shift (EYE ROLL)!

A couple of hours later, her and the resident doctor came to check my dilation. The nurse kept telling her to be careful not to break my water because Warner was not engaged yet. Apparently, when she felt his head he would “start to swim away” and wasn’t ready. I had been at a 7 when all of a sudden things went haywire. My monitors started going off & sassy nurse put an oxygen mask on me & instructed me to remain calm, take deep breaths, and focus. The resident had, apparently, broken my water “on accident” and Warner’s heart rate skyrocketed. Suddenly the room was full of hospital staff and they were making my sisters & grandma leave the room. She had me roll back and forth until his heart rate stabilized. Whew- everything was okay so I started to sob & scream for Jordan. He was right behind me, but I had no idea. Everything was stable & they said that typically happens, but he was doing fine, my water had broken, and now we were just waiting for him to engage and for me to fully dilate.

I slept another few hours and was awoken at 7PM to check baby again. I was at a 10 & it was GO TIME & my sweet night nurse was back! They got me set up in the stirrups & told me to push until they saw the head and then they would get the doctors in. I started to panic and asked how long it would take. They said it varies, but it could be hours before he was born. They said to hold on to the handles and push down as hard as I could. I did this twice and was told to “Stop! Wait for the doctors”! It was 7:14PM when the team arrived and they said to do exactly what I had done before. I held on, pushed twice, and heard Warner’s cries. it was 7:16PM and he was HERE! His first APGAR was a 7 and his second was a 9. They suctioned his nose, I held my arms out for him, and he reached for me.

He wasn’t placed in my arms and I didn’t see him again for an hour. They wrapped him up in a sterile baggy, all of his intestines hanging out of his body, and whisked him to a different room. Jordan went with him. I had known I wasn’t going to get to touch him. I knew I couldn’t do skin-to-skin. I was aware I wasn’t going to get to nurse him or kiss him or tell him it was okay and that he was safe with me. I still feel so much sadness thinking back to those moments. I am still SO sad about the entire birth experience and can’t help but feel like we missed out on those sleepy, happy first days of life with him. From the moment I found out about his defect until the day he was released, it was total stress. Not the normal stress about when would I get sleep or is he eating enough. I was forced to leave him & I could have slept as much as I wanted. I couldn’t worry about whether he was eating enough because he didn’t get to eat until nearly 3 months old. He was on TPN lines, forcing medicinal nutrients through his veins.

The room cleared out & they removed my epidural needle and catheter. I was able to start eating and drinking. I waited and waited and waited and, finally, the Angel 1 team arrived with Jordan and by 6 lb 7 oz. baby boy.  He was in an incubator & covered in wires, cords, and machines. They rolled him to my side and said I could reach in and touch him for a minute or two before they took him to the Arkansas Children’s Hospital down the road. I help his tiny little hand & he held my finger and peeked his little eyes at me before they said it was time to go.

Jordan & the Angel One team took him by ambulance to another hospital and I was inconsolable in a room with just my little sister, Maddie.

I cried and screamed about how unfair it was & how he needed his mom. I was finally wheeled upstairs to the recovery wing. My sisters & grandma were with me & Jordan & his parents were with Warner. Warner was having a silo placed. They would take all of his exposed organs, place them in a sterile bag and tie them up to a metal rod above his body. The idea is that gravity will do its’ job & the intestines would gradually fall back into the abdominal cavity. Once the silo was placed, Jordan and my in-laws left Children’s Hospital came to my recovery room at UAMS. (I had slept for the past 20 hours or so, everyone else had been awake for nearly 36 hours at this point!)

They shared that Warner was doing well & was in great hands. They loved every single surgeon, neonatologist, nurse, NP, etc. that they met & assured me he was being very well cared for. Jordan gave me the login info for our NicView camera. (The NICU provided online cameras above every bed and we were able to login and watch Warner 24 hours a day, which was SUCH a relief, but we all obsessed over it as well!) I logged on and he was crying & it absolutely broke my heart that I wasn’t there to comfort him. I could see on the camera that the nurses were touching him, repositioning him, etc, but I couldn’t help but feel like he just wanted his mom. It was unimaginable seeing your child inside out, crying out, and not being able to comfort him. I felt SO worthless. (It’s even worse to look back at these photos now. I didn’t know any different then, but now I’ve seen what a brilliant, beautiful, brave little boy he is, I get so overwhelmed seeing how fragile & sad he once looked. I’ve sat down to work on this post for weeks now and every time I leave, crying, going to get Warner up from a nap even more thankful for him than when Iaid him down.)

Jordan explained how placing the silo had gone well, but also had some other news. We were told while I was pregnant that Warner would likely spend 4-6 weeks in the NICU for this defect. That felt like a lifetime. Jordan informed me that, while the surgeons were setting his silo, they discovered what they thought was at least one, maybe multiple, atresia (disconnects) in his small intestine. This meant that after his initial closure, he would need to wait another 6-8 weeks for his bowels to heal & spread out because his guts were all matted together & swollen from being exposed to amniotic fluid for so long. After the second surgery, they would wait for his bowels to “wake up” before starting feeds & then getting to full feeds would likely take another few weeks, at least.

I was completely devastated by that news, but I couldn’t really fathom at that point just how long that timeline would feel.

It was the middle of the night at this point, so Jordan and his parents went to sleep for a few hours at the hotel. A nurse came to help me pump for the first time and my sisters when to get us something to eat. I had lived on Ramen noodles and saltines during pregnancy and I ate a Wendy’s cheeseburger that night. My youngest sister and my grandma left soon after to rest and my sweet Emmy stayed with me in the recovery room. She helped me get to the bathroom to shower, measured and recorded my urine output for the nurse, & made sure I was as comfortable as possible. Neither of us slept & then it was morning. My family picked up Emily and took her to the hotel to sleep & then they went to Children’s to see Warner. I was alone for the rest of the morning and into the afternoon, but was thrilled that everyone was with Warner and could send me pictures and updates. My dad sent me flowers & that lifted my spirits while I waited to be released. I watched the NicView camera and checked the clock, waiting to leave. Finally, Jordan came to my room and the doctor started my discharge paperwork. She knew I was ready to see my son.

We picked up my prescriptions (pain/consitpation/Iron) and booked it to the Children’s hospital. It was a LONG walk to the NICU, so Jordan had to push me in a wheelchair for the first few days because I was still too sore to walk that far. We arrived, I checked in and got my badge, and I was finally going to see Warner!

In all honesty, that first week is kind of a blur. The Ronald McDonald house was booked and we had already been staying in a hotel for 2 weeks leading up to the birth. Thanks to Jordan’s parents, we were staying in a furnished apartment a couple of miles from the hospital and went there to sleep. Jordan and I sat by Warner’s side from early morning until late night. We weren’t able to hold him, but we could hold his hands, touch him, & talk to him. We were both dying to hold him and snuggle him, but with his intestines in the silo above him, we weren’t able to. Every day, sometimes multiple times a day, the surgeons would come by to check on how gravity was doing on getting his organs back into his belly. To hurry the process along, they would squeeze the back and then tie it with a rope, manually squishing his guts down. He was on pain medications, but it still looked excruciating.

He also struggled with blood flow to his little feet and they were nearly black for the first few days. The nurses were constantly moving him to different positions and taping little heat pads to the soles of his feet to increase blood flow.

Finally, on day five, after nearly a week of squeezing, his intestines were level with his belly. They had wrapped gauze around the opening and said they were going to let me hold him before surgery the next morning to close him up. I was thrilled, but I also had a feeling they did that just in case something went wrong & I was never able to hold my baby alive. It was the best moment of my life! I broke out in hives I was so excited. He was so small and perfect & he just stopped crying and started up at me while I held him. I had been longing for that for SO long! I savored those few minutes before they said it was time to put him back down. They said Jordan could hold him after the surgery & he was absolutely fine with that, but I felt bad I was able to wrap him in my arms and Jordan wasn’t.

The next morning, a Sunday, we were the first on the schedule for surgery. We got to the NICU while it was still dark to spend time with him before he had the closure. I can’t put into words what it felt like sending my 6 day old baby off with a surgical team. He was so strong, I knew that, but there was always the fear of something bad happening. He had never been put under- would he react badly under anesthesia? Would he be in pain afterwards? Would he wake up? I think those thoughts secretly cross everyones minds when it comes to surgery, but this was so different; he was so fragile. We walked with them as he was rolled to the surgery floor. They explained what they were going to do and said it would take 30-45 minutes once he was asleep. We were the only ones in the waiting room that Sunday. Jordan, my dad, and I waited an eternity for the doctor to come out. He said the closure had gone very well and he was doing fine waking up. CUE ALL THE TEARS, what a relief! He reinforced the fact that it would be 6-8 weeks until the next surgery. His intestines were plentiful (this was good news, in case they needed to remove any dead tissue, blockages, or narrowings in the future; this lowered the risk of having a g-tube) but very matted together and needed time to heal and grow. He said until then, Warner would be a “maintenance baby” and would remain on TPN and fluids until the surgeons decided he was ready for the next surgery. In the photos, you’ll see a tube into his mouth. This was down his throat and into his stomach and it suctioned out all of the bile be was producing. His intestines were not connected, so there was nowhere for the fluid to go but up.

We met the surgical team back in his NICU pod. He was intubated for a little over a day and then Jordan was finally able to hold him (we all were) freely after that, which was the most relieving feeling to finally be able to comfort him!

Jordan was able to stay in Little Rock for another week before he had to go back Monday-Friday for work each week. The Saturday before he went back to work, I ended up in the ER with a gallstone attack. It was excruciating. I was terrified of Jordan leaving because I would not have been able to make it to the ER on my own in that much pain. I was okay and only had a few mild attacks that week until his mom volunteered to come stay with me until I could see a surgeon about getting it removed. While I had nausea my entire pregnancy, I assumed it would stop after he was born. It continued & I thought it was related to my gallbladder. I had a couple of smaller gallstones attacks while I was pregnant, but these were torturous and came on so suddenly. I completely stopped eating anything with fat until I had the surgery, although that didn’t help much!

During all of this, I was setting my alarm every 2-3 hours to wake up and pump. For the entire Little Rock stay, I experienced terrible nightmares and would wake up with night terrors. Although I had never nursed Warner and he had never been home with me, I would wake up in a panic searching the bed. I would feel around in the dark thinking that I had gotten up to nurse him and then fallen asleep with him still in the bed. I scared Jordan a few times! I would finally wake up, gripping my pillow like a baby, thinking I had saved him. I still tell Jordan how strange that was & how scary it felt before I woke up and realized I hadn’t suffocated him.

I am going to stop and continue another time- I hope this isn’t too wordy to read; I know I can be long-winded and I want to make sure I am documenting all the details so Warner can look back and read these some day! I have been printing them all out to save for him & hope he knows how much he was loved & what a brave baby he was! We are so thankful he will never remember the pain he experienced in his first months of life.

xoxo,

Sarah