- Posted June 17, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Life with a Pprom Micropreemie
We knew from the start this wasn't going to be an easy pregnancy. I had bleeding early on, several reasons why were tossed around for weeks. I spent time on and off bedrest, each time being told the odds of us carrying this pregnancy to term was 50/50.
Her growth started lagging early on in the pregnancy. At 20 weeks my water broke. At that time we were given the statistics and told that most families go in to labor within 72 hours. If by chance we made it past those 72 hours, we would be sent home, I would be put on bedrest, and return to the hospital at 24 weeks until our sweet baby entered this world.
At 28 weeks Piper decided to make her way in to this world. We made it 53 long days since my water originally broke, until I delivered. She was extremely growth restricted, weighing only 1 lb 10 ounces and was 11.5 inches long. She had hypoplastic, or extremely underdeveloped lungs. She spent several weeks on a ventilator to help her lungs grow. In August, just a few days past her original due date, she received a gtube. A feeding tube that goes directly in to her stomach. After 128 days she was released from the hospital and we were finally able to bring her home.
Life has been rocked, from the very beginning. We have had moments of absolute, complete joy. The first time she said dada, the first time she started crawling (she was over a year old), hearing that sweet baby laugh, watching her become her own feisty little person with her own personality. There has also been a lot of tears, sleepless nights, and heartache. She refuses to eat anything by mouth, due to being on the ventilator long and complications with reflux and other feeding issues. So she is 100 percent tube fed. We have spent numerous hours, days and weeks in doctors office, in the hopes of finding the mix that will allow our daughter to do something as simple as eat comfortably (even if it is through a tube) . She is on full time oxygen as she still has fairly fragile lungs and other complications from that. She has some pretty significant developmental delays from this whole experience as well, but with the help of early intervention she is slowly but surely catching up on those milestones.
We have been blessed with a child who now has a "family" larger than we ever could have dreamed of. Nurses, doctors, community members, family, friends, have gone above and beyond to support us and our little girl. Raising a child with special needs has resulted in us recreating a new normal. It took us a while to be comfortable in the every day things like going to the park, taking her to the store, going on road trips. But we're slowly becoming old pros. We're also first hand witnesses to the power of good in people, strangers who will come talk to us, ask questions, and care about a little girl that they just met a few minutes before.