Many months ago I joined hundreds of other bloggers and committed to write a post today about prematurity.The idea is to unite our voices to raise awareness.
Thing is, if you are a reader of this blog (all 5 or 6 of you), you are well acquainted with prematurity. You know that Daphne was born over 3 months early after we lost her sister. You know that we spent five long months in the NICU (March 2 – July 27).
I don’t have to tell you that it was hard. For the first couple of months, we had absolutely no sense that we would get to keep her. It was up and down, all the time. In addition to the paralyzing fear that we would never bring home the tiny baby in the acrylic box, the sheer logistics were a nightmare. There was daily driving to the hospital, and managing care for then 3-year-old Lucy. Z and I didn’t see each other for more than minutes at a time. When I was home, he was in the NICU. I would be white-knuckling my phone waiting for his text updates, and firing back questions. At times, it really felt like it would never end.
I wish that I could say that Daphne is now a completely normal, happy, healthy baby. That is not true. She has developmental delays, severe reflux and feeding issues, directly related to her prematurity. She is incredibly small. She is in no danger of catching up by two. But I still feel like we are fortunate. There are so many other horrible outcomes that we dodged.
She is a lovely child, smart, happy, affectionate and oh, so cute.
She is strong, resilient and continues to amaze us with her progress. Amazing as Daphne is, let’s be frank: she would not be here without modern medicine.
I had amazing prenatal care that allowed my doctors to make the decision to put me in the hospital early for monitoring. In the NICU, there was the amazing coordination of neonatologists, specialists, nurses, RTs, working together in a sometimes cacophonous orchestra. I also recognize that we were lucky. Lucky that we had amazing health insurance. Lucky that my job allowed me to take as much time as I needed to sit in the hospital, pump, and coordinate Daphne’s care. Lucky that we have amazing family who supported us and loved and showered Lucy with attention when her parents were busy, tired, worried, desperate.
Prematurity has changed our family forever. We now know what it is like to lose a child. We know what it’s like to have a critically ill child, and still have to go on with life. We have become advocates. We have become part of a community of preemie families that is warm, active, supportive and an incredible source of information.
If you would like to know what you can do, check out your local chapter of the March of Dimes : The rate of premature birth has risen more than 30 percent since 1981. In half the cases, we simply don’t understand what went wrong. The March of Dimes is leading the fight for answers. And, ultimately, preventions.
Get good pre-natal care. Learn about the signs of pre-term labor. Support a family who has a preemie in the NICU. Support a NICU. And spread the word.