I know that we didn’t stay long; I was in pain, exhausted, and out of it from pain meds.
I think it was the next day when I saw them again, this time with my dear friend Kristie, who had come to visit. I think that is when the “baby blues” hit and the shock wore off. I cried on and off most of the day. Kristie brought me up to the NICU to see the girls, and as she stood next to me and we looked down on them, I couldn’t stop crying and thinking, “I am so selfish. I forced my body to get pregnant and this is what happened.” I saw the girls with oxygen support, IVs everywhere, monitors for their hearts, O2 levels and body temperatures. I saw them greased from head to toe in Aquaphor and wrapped in cellophane so that their transparent skin would stay moist. I saw them hidden under a mask to protect their eyes from the phototherapy they were receiving for jaundice. I saw them naked, without diapers on, light fuzz covering their bodies. They looked like tiny birds that had just hatched and been unexpectedly tossed out of the nest.
In those first moments of really seeing them, I honestly wondered if they were meant to die, and we were keeping them alive selfishly and for our own good, rather than letting them pass on without suffering. They did not look like newborn babies, they looked like fetuses that should still be in the womb. What were we doing, using technology to have them in the first place and then to keep them alive. Was this truly meant to be? How premature is too premature?
And yet, with every fiber of my being, I wanted them to live. I wanted to touch them, nurse them, kiss their heads and fingers and toes. I wanted to tuck them into my hospital gown and spirit them back home. I wanted to go to sleep and have them back inside me, kicking and punching and moving around in their protective water bath with each other for company.
It wasn’t until the girls were two days old that I got to hold them, one at a time and for only a few minutes, tucked under my hospital gown and nuzzled up next to my naked skin. I was petrified to move, to disturb all of the wires and lines. They were so small that their bodies literally fit into the palm of my hand. I didn’t have much energy to sit with them for long, but the minute the nurse scooped them back up and returned them to their crib, I wanted them back again.
We spent the third day in the hospital trying to decide on a name for our second daughter, and paged through baby name books in between visits upstairs to the NICU, phone calls to family and friends, and catnaps. After some time, we decided on Isabelle Hope. Isabelle is a name we had discussed before, and Hope felt like a positive, life-affirming choice that was particularly appropriate now.
Hannah and Isabelle spent two months in the hospital and came home weighing approximately four pounds each. On many fronts, they sailed through the NICU amazingly well, escaping many of the horrors we had been told to be prepared for: life-threatening infections, heart malformations, inability to be weaned off supplemental oxygen, gastrointestinal problems. But unfortunately, we did not get off scott-free. One month after their birth, the girls had a cranial ultrasound to check for brain bleeds that are common in micropreemies (those born weighing less than 1,000 grams and earlier than 30 weeks). Hannah's ultrasound showed evidence of PVL, which put her at increased risk for being diagnosed with cerebral palsy, as well as learning disabilities.
Since their discharge, we have watched the girls grow with hope, faith, and bated breath, especially Hannah. Initially, they were on the same developmental timeline and meeting the milestones of other babies born at their "corrected" age (when they should actually have been born, which was 3 months later than their birth age. But as they grew and the fine and gross motor skill challenges increased, the gap between Hannah and Isabelle grew. First it was only a few weeks, then a month, then six months, and now it is more than a year. While Isabelle reached all of her motor milestones in an age-appopriate fashion, Hannah is developing some of those skills at a pace slower than a child at least one year younger than her.
Thankfully, on the social and verbal front, the girls are both right on target. This is a huge relief as preemies in general are more prone to learning disabilities and preemies with PVL are at an even high risk. It is hard to say if more subtle difficulties might arise when the girls are school-age, where some learning disabilities become more evident. But at this point, they are both typical two-year olds in this regard.
There have been so many challenges to adjust to since we had our girls: their early arrival, the fact that there are TWO of them, and Hannah's developmental delays. I hope to use this blog as a place to share some of our triumphs and struggles through this process, which has changed all of us in so many ways.
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