A Little Mustard Seed. Tiny and Mighty!

When we found out we were pregnant we were so excited and could not wait to experience parenthood together.  I started to see my normal OB for bloodwork and for my first ultrasound sound! The cloud, I’ll call it, didn’t come until my second ultrasound when the doctor came in and asked if I could call my other half so he could tell us both some news.  My heart instantly dropped, I could tell by his expression this wasn’t normal good news. He told us that in our 12 week ultrasound it looked like our baby had a hernia and he would be referring us to MFM.  Fast forward to 16 weeks, we received our official diagnosis of an Omphalocele.  I cried, and cried and cried. I felt like I had this impending dark cloud over me and anytime I would have a second to myself my mind would race.  

It wasn’t until about 20 weeks when I found an online support group that I found my first glimmer of hope. We had met with every specialist and surgeon to give our little girl the best chance. We then started going in for weekly scans at 30 weeks and NST on a different day for extra precautions, so I had two weekly doctors appointments. We meet with our NICU team who then prepped us for a possible BWS diagnosis and a 3-6 month long NICU stay but could be upwards to a year long. We were also told she would be intubated for the first month of her life due to undeveloped/small lungs because of her Omphalocele. My MFM doctor didn’t want me to deliver a day over 37 weeks due to the risk of me going into labor on my own and my OB wanted me to have a full term baby…so I delivered at exactly 37 weeks at a hospital that specializes in births.

Paisley Rae Jordan was born on March 29, 2024! Our daughter was born via C-section and we heard her crying when she was born! We got to see her for a couple seconds before she was taken to the NICU, they got her stable and then she was transferred to the hospital next door which was Children’s Hospital of Atlanta.  Upon arrival at Children’s, they did an echo on her heart to make sure everything was okay. It was then discovered that Paisley has a small VSD. She was extubated on day 3 and placed on hi flow oxygen.  On day 10 we were off any oxygen support at all and completely breathing on our own.  We did still have our NG tube in because we loved to sleep.  This girl would sleep through any feed you would let her.  While in the NICU Paisley’s eating was her biggest struggle.  She dropped below her birth weight and upon discharge was only an ounce more than her birth weight.  By day 14, we got our NG tube pulled.  The very next day, a Friday, I got a call first thing in the morning that we would discharge from the hospital that Monday.  So after a short 17 days in the NICU, we were going to bring Paisley home! We were doing the paint and wait method and had mastered our wrapping techniques.  As I had said previously her weight was her biggest issue, so that weekend our hospital set us up with a Jefferson Car Seat.  I was learning about the car seat with the hospital car seat technician when she asked “Your baby does meet the minimum weight requirements for this right? 7 and a half pounds!”.  My heart sank to my stomach because Paisley was no where near 7 and a half pounds, she was just at her birth weight of 6 pounds and 2 ounces.  I told her no and explained her weight issues, I had this fear that they were going to make us stay until she could go home in the Jefferson Car seat! 

To my surprise she said “no worries, we will get you set up in a Hope Car Bed.” We discharged from the hospital on April 15th, 2024! Paisley had full skin closure by 5.5 months old! We are currently awaiting her closure surgery, which should happen around 14 months old.  Paisley is currently 9 months old.  She loves to roll all around and ‘inch worm’ around as we call it (because she hasn’t quite figured out the whole crawling thing).  She constantly has the biggest smile on her face and loves to explore new places and take in all the sights!