September is NICU Awareness month! Two years ago I had very little idea to what the NICU actually was, now I know the ups & downs of NICU journey.
Carter Elizabeth was born on 10/21 at 29 weeks. After a wonderful trip to the beach I went to my 27 week ultrasound appointment while Eric stayed home with Elliott. I was excited for the alone time & to see our baby girl. Our ultrasound showed some fluid build up around her heart, lungs, brain & stomach. I was immediately sent next door to the “high risk” OB for a more detailed ultrasound. It was confirmed that it was Hydrops Fetalis, which after googling I cried & cried. They sent me to Duke L&D for some additional testing. I was sent home, then Wednesday I was sent back for more tests. Friday we had an appointment with a pediatric cardiologist, they discovered she had an interrupted IVC, we were again sent to Duke. This time we were told we would be here until we had a baby. The “goal” was to make it to 32 weeks. Eric & I stayed in the hospital & my parents brought Elliott for a couple hours every day to visit. Every day we have a non-stress test, an ultrasound & an echocardiogram. It was exhausting, terrifying but also comforting in some weird way to know that we were in the right place should things take a turn. Exactly one week after being admitted Carter’s right side of her heart was enlarged, her cardiologist along with my high risk OB decided it was time for a baby. I was induced that afternoon, after 30+ hours of labor our sweet girl was born in the OR. She was perfect. They immediately took her to the NICU where she was put on a ventilator & was incubated to help control her body temp. After 4 hours I was able to go see her, I cried happy, scared & sad tears all at once. On day 4 I got to hold Carter for the first time. It felt unnatural holding this itty bitty baby with wires, picc line, & her breathing tube but it was also the best snuggle ever. During the first few weeks our results from the amnio came back & we found out that our Carter had a significant deletion of chromosome 12. There was no cause that we could pinpoint (both Eric & I were tested) but it did explain the way her heart & other organs formed & is likely the cause of the hydrops in the first place. When researching this we discovered that Carter was only the 14th ever recorded case of this deletion (2nd girl) & is the only one with her exact grouping. Most call it a genetic disorder but we call it a genetic unicorn! After about a month of her struggling to keep down feeds we discovered she had a malrotation of her small intestine (likely due to her genetic unicorn) that would need surgery. Because of her size they wanted to wait for her to gain a little weight before they attempted surgery. She was put on high calorie IV fluid & a few weeks later was ready for surgery. Surgery is terrifying in general. It is terrifying as a parent watching part of your heart being taken away to undergo surgery. During the 5 hours it took to perform the surgery I prayed, cried, drank way too much coffee, paced, sat, & prayed some more. Post surgery cuddles were again some of my favorite. I felt a huge weight lifted when after 2 days I could snuggle her again! A month after her surgery Carter came home & our lives have never been the same.
During our NICU journey I blocked out so many things, whether intentionally or unintentionally I think it was part of my coping mechanism. Every day was a rollercoaster. Some days we’d take 2 steps forward while other days it’d seem like we weren’t even in the race. The emotions were raw & all over the place. Carter still has some mountains she has to climb, COVID has paused all our therapies. She isn’t talking yet but we are working on sign language & she is excellent at getting what she wants! She is still on respiratory assistance twice a day but y’all girlfriend is CRUSHING it!! We got to bring home our little unicorn & for that I will always be grateful!
