Bringing a child into the world is often filled with many hopes and dreams about that child’s future. Delivering a child with complex medical issues completely changes those desires for the future. Once our son received a Trisomy 18 diagnosis, our goals changed from future family and career to survival only. We just want him to be born alive.
Reaching that goal was amazing, and the next goal of getting him home was set. I feared so much the first two days of his life that we would not reach that goal, but as the car got packed, and he was packed into his car seat, the reality that we met the second goal was overwhelming. I cried the entire way home. Our baby was alive. Our baby was coming home. We were going to get time as a family.
We walked into our quiet house with our son, and I took a deep breath. We made it this far. Now onto goal number three…a one week birthday.
My husband began to unload the car, and the trunk full of medical equipment filled our home. I set up in the living room with all of the medical equipment, breast pump, and our sweet baby. The oxygen concentrator was plugged in, and the hum enveloped our living room. The sound of our son’s constricted breathing filled our house. All of these new sounds gave me hope and fear at the same time. They were the sounds proving his life, but they were the sounds showing how close to death he was.
We started trying to find our new normal. Our beginning days consisted of pumping, feeding, changing diapers, letting big brothers help and hold him, trying to sleep when possible, and trying not to cry. Family, friends, and medical professionals crowded our home. Our front door was never locked during those days, and visitors learned to just come in and out.
I stayed in the living room with our son for the first few weeks 24 hours a day. It was easier to manage oxygen, feeding tubes, and pumping in one room. Family stayed the first two nights to watch over our baby and make sure he was still breathing.
Those days and nights seemed like a blur.
It is hard to sleep with a new baby, but adding on a baby that has medical issues meant double feed and care times, in addition to the normal baby routine. I had to pump, still attempt bottle and breast feeding, and then tube feed him as well. He needed a lot of rest and skin-to-skin time in between cares because each task wore him out and he would have increased difficulty with breathing. He spent much of the time skin-to-skin because even the task of putting clothes on taxed him.
We chose one task to do each day. He needed to be weighed three times a week because he had difficulty gaining weight at the beginning. We wanted to give him a bath at least once a week. We celebrated weekly birthdays, so we wanted to put clothes on him once a week for his parties. Visitors also wanted to hold him, so we left that to his remaining two days.
Looking back at that time now, I see all the things I have learned to make our lives easier. I discovered a hands-free pumping bra that allowed me to pump and feed at the same time. I realized a Moby wrap could allow me to be skin-to-skin and still move around the house getting things done (and even exercise some!). I eventually found the 25-foot oxygen extension tubing buried in the bag the medical supplies that allowed me to not only sleep in our bedroom, but also allowed me to move around the house a little more freely. I still couldn’t answer the front door, but I could at least get to the kitchen!
We met our goal of having a first week birthday. We feared that we wouldn’t meet a two week birthday because he began having apnea episodes again, but we did. We met a third, fourth, fifth and sixth week birthdays as well. After that, we moved to monthly celebrations.
Our baby was alive, thriving, and slowly beating all medical odds.