During my 20 week ultrasound, we found out that Hailey had a heart defect - we didn't know exactly what, so we were referred to a high risk OB clinic - Maternal Fetal Medicine and then to the U of M. Within that week, it was confirmed that her defect was AV Canal Defect (AVSD). With this specific heart defect, it is very common to have a Down syndrome diagnosis - so to be prepared, we did an amniocentesis. This test confirmed Hailey's Down syndrome diagnosis.
At my 25 week ultrasound appt, they were seeing reverse flow in the umbilical cord which was causing Hailey to work harder. They also noticed she hadn't grown much in the 5 weeks since my previous ultrasound. Overall, she was only in the 11th percentile - with parts of her body in the < 1 percentile. They admitted me for monitoring for one night at the U of M and gave me a steroid shot (betamethesone) to help grow her lungs, brain, and intestines. After being admitted, the OB doctor wanted me to be monitored 3 times a week. We made it through the weekend and had our next appt on Monday, September 16th. At this appt, they were seeing the reversal even more so they admitted me that night hoping I could potentially make it to 32-34 weeks. Dave and I went home and packed my things, got Olivia and Charlie and came back to the hospital. They visited for as long as they could and headed home about 8:45pm. About 10pm, the dr came in and said they needed to do an emergency c-section.
Miss Hailey was born on Monday, Sept 16th (26w1d) weighing 1lb 4.5oz and was 12in long.
Typically, they tell you to expect to be in the NICU until your due date - in our case this is December 22nd; however, we're just taking things one day at a time. Since I'm late starting this journal and we're already on day 48 in the NICU, I'll give a few updates from the past 7 weeks below.
Hailey had to have an ileostomy surgery on her intestines at 6 days old because they were seeing a blockage. She's been on cpap twice already and is currently back with the breathing tube and using the ventilator. She also had a minor heart surgery to close her PDA. She’s had a blood infection, has needed a lumbar puncture to culture her spinal fluid, many many IV’s, she’s on her second PICC line. There is probably lots more, but that’s what I can think of right now.
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