Bryn’s Birth Story – Our Spina Bifida Journey Continues

Our sweet Bryn is seven weeks old now! So much has happened in the seven weeks since her delivery, yet it feels like she was born just yesterday at the same time. I wanted to share her birth story and our NICU experience before it all fades into the newborn blur of sleep deprivation!

The last time I shared, I was 32 weeks pregnant and everything was looking remarkably stable. The following week at our 33 week ultrasound my fluid level was very low again. At that point it was decided that it would be safest for our baby to proceed with scheduling our C-section for 34 weeks exactly. I was feeling disappointed to not be able to make it to 36 weeks pregnant, but I knew it was the best option and I was getting excited to finally meet the baby that had turned our lives upside down.

On January 22nd, three days before our scheduled C-section, I awoke with cramps early in the morning. I had not slept well in the hospital for weeks by that point so I didn’t think much of it at first. When I started noticing that the cramps were coming and going at regular intervals I started to get concerned. I had never gone into labor before (induced with both of the other babies) and I knew it was dangerous for my uterus to labor after fetal surgery. I got hooked up to the monitor and we watched my contractions for about two hours before deciding the labor was progressing and it would be best to go ahead and deliver that day! Connor’s brother and sister-in-law were in town to help out with the kids, so Connor was able to leave right away to come be with me in labor.

Unfortunately, the humidifier in the operating rooms on the labor and delivery floor were randomly not working which meant the operating rooms could not be used. My C-section would need to take place in the main operating rooms downstairs and my nurses were scrambling to figure out exactly what extra equipment they would need to make this happen. I was in a great deal of pain and feeling nervous as I waited for them to get the OR ready for me. Finally, just after 10AM, we were able to roll downstairs and get things started. At 11:15AM our beautiful baby Bryn was delivered and we were beyond thrilled to hear her sweet cries fill the room. She was 4lbs 10oz and overall, just as healthy as could be. Since she was almost 7 weeks early, she was taken to the NICU and I was able to head over to see her shortly after my recovery period. We knew she would get a feeding tube and some low flow oxygen given her prematurity. Despite that, she still latched right away and no other issues were discovered. Her neuro exam even showed movement and feeling down to her toes and a stable brain – meaning no immediate need for a shunt. We were feeling all kinds of blessings and joy!

After all we had been through, we thought the hardest days were finally behind us. Little did we know that the hardest days were in fact still to come. The day after Bryn’s birth, Connor’s sister-in-law tested positive for Covid-19. Since they were staying with Connor and the kids the week prior, we needed Connor to get a test too to make sure we were protecting our newborn daughter. His test came back positive as well, meaning he had to immediately leave me and Bryn at the hospital and head home to quarantine with our two older kids for 10 days. Luckily, Bryn and I did not develop symptoms. This turn of events was shocking, and without a doubt the worst days of my entire life. I still have trouble fully processing those 10 days. Luckily, I was able to discharge to my mom’s house and she so selflessly stepped in to be everything for us in our time of need. She took me to and from the NICU each day and took care of me while I crumbled.

After 10 days, Connor was able to rejoin me in the NICU and I was finally able to return home and see my older two kiddos. Things slowly started to become more normal and we focused on getting Bryn home! Thankfully, the only issues holding her in the NICU were the two standard preemie hurdles of taking all of her feeds by bottle and keeping her stats stable. The NICU was overall very nice and the doctors and nurses were fantastic with us; but nothing can truly prepare you for the emotional and mental toll the NICU takes on you. Especially since Bryn was doing so well, my brain had a really hard time understanding why I couldn’t take her home. My whole being ached for her every night when I had to leave her. At the advice of several friends that reached out with prior NICU experience, I would call in to get updates on Bryn during my middle of the night pumping session and that slightly soothed me.

After 27 days and several “one step forward, two steps back” instances, we were finally able to bring our girl home! Walking out of the hospital and reuniting our entire family for the first time in over two months was one of the most surreal and happy feelings I will ever experience. Honestly, I think I’m still riding that high almost 4 weeks later. Our transition to a family of five has been overall very smooth. The kids are absolutely in love with Bryn and I am beyond happy to return to my mom duties.

We have had and will have many follow appointments for our girl as we watch the three main areas most commonly affected by Spina Bifida – Neurology, Orthopedics, and Urology. Our neuro follow up was extremely uplifting since Bryn still does not show any signs of needing a shunt or any other intervention. This was one of the biggest potential benefits of fetal surgery and our driving force for going that route. Her ortho follow up showed a bony abnormality in her foot, which will be casted and surgically corrected in the coming weeks. While we are feeling terrified for this process, we are also extremely grateful that our orthopedic surgeon assures us Bryn is strong enough to walk unassisted one day, and thus sees a need to fix the issue. Urology follow up will occur later this month with a full urodynamics workup. Praying for more good news! She will come off her low flow oxygen next week and we were able to switch her to nursing full time!

Lastly, I just want to take a minute and thank each and every one of the many people who have helped us in this journey. Our people have showed up in a big way and I could not be more grateful. The many meals we have received have allowed us to eat well and not have to worry about how to make dinner happen among our chaos. The gift cards and gifts for the kids have been such a blessing as they adjust to yet another new normal. The text messages, direct messages, and facebook messages have been greatly appreciated whether we talk every day or every few years. The flexibility from our jobs has given us stability when we need it most. We would not have made it through this season without each and every one of our people. We especially would not be where we are today without my incredible mom. She has put her life on hold time and time again, dropped everything, and lifted our spirits to take care of and support us. She is our actual angel on Earth.

We are forever grateful and we are here to repay the favor if ever you have a time of need. Thanks for following along and being with us in this journey!

4 thoughts on “Bryn’s Birth Story – Our Spina Bifida Journey Continues

  1. Sheila Cleary

    Wow! I had no idea what you all have been through but happy life is getting better for you. Always knew you had the best mom ever. Wishing you all continued good health and happiness. ❤️Sheila

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