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Challenge: NICU Parenting

Born Before Viability

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Josephine was born on Valentine’s Day at only 23 weeks and 5 days gestation, just days before most hospitals would even consider a baby viable. I had an extremely difficult pregnancy. I was in and out of the hospital due to a very large subchorionic hemorrhage, causing significant bleeding and eventually contractions that could no longer be stopped. I was life-lined from my town hospital to a hospital with a Level III NICU. My OBGYN told me there was nothing more they could do to stop labor from progressing, so she needed to get me to a hospital that would try to save our daughter, because ours was not equipped. We were able to keep Jo in for 5 more days before my water broke. Because we had not yet hit “viability week”, the decision was ours: try to resuscitate our baby or let her pass peacefully in my arms. It was a paralyzing decision to make. Do we put her through pain and medical interventions that still might not save her or leave her severely impaired for life? Or do just hold her and love her for the few short minutes that she could survive without intervention? Even though we knew the odds, we just couldn’t give up on her. We asked (more like begged) the NICU team to save her. It was the most terrifying day of our lives.

Josephine was immediately ventilated and taken to the NICU. She weighed 1lbs 8oz and was 12in long. Seeing her for the first time was heartbreaking and relieving. Her skin was was waxy and completely translucent. We could see every vein and her tiny flickering heart. But there was so much life to be found behind her barely developed, fused eyelids.

Josephine did really well for the first few days. Then on day 6 she got sepsis and everything started going downhill. She was immediately transported to Riley Hospital, where she started a series of antibiotics and went drastically up on her respiratory support. The Riley Hospital doctors and nurses are miracle workers. They saved our daughter’s life time after time.

In Josephine's 120 day NICU stay she had 4 blood transfusions, 11 IVs, 3 PICC lines, countless blood draws, a collapsed lung due to self extubation, steroids to improve lung function, isolation due to a respiratory virus, multiple ultrasounds, an MRI, medications for severe swelling and internal hemangiomas, and 12 eye exams for ROP. Even with all that, we are extremely lucky. She hasn't had a single surgery. Her eyes continue to improve, she has gained weight remarkably well, and she now exclusively nurses (something we were told very likely would never happen).

She is 9 months old now, and while we have some catching up to do with development, Josephine is thriving. Just this week we were able to completely wean off of oxygen, after 9 months of respiratory support! We have been so blessed with our tiny miracle. Jo’s brothers just adore her, and Mommy and Daddy couldn’t be anymore proud of her strength and progress!

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