As we begin April I can't help but think back to April of 2008, my little boy was nearly 5 months old at that time. He had also just come home from the hospital. 140 days. 12 surgeries. Countless procedures. 1 helicopter ride (he says he remembers it!)
For Matt and I it was 140 days of panic, fear, heartache and more worry than we ever imagined. Things were going good, we thought we were in the clear. We even had a "room-in" night scheduled at the NICU so we could stay there and practice taking care of our son before we came home. Then one morning Matt and I were getting ready to head to the hospital, my mom and Aunt were going to meet us there. I called and talked to Katherine, she said he was fine. Then we hung up because she said he had thrown up a couple times and he looked like he was going to do it again. This wasn't out of character for him so I didn't worry. While Matt was still in bed I took a shower. As soon as I was done my phone rang, it was the hospital. I figured it was Katherine calling to tell me that he had thrown up and was fine now - she knew I worried. As soon as I answered the phone I knew it was bad, it was the Doctor. It was the call I had always feared but never received until then.
It was our "get to the hospital right now" call. They knew there was something wrong, really wrong, but didn't know what. He was getting sicker and sicker and no one knew why. They had surgery in the NICU ready to place an IV and needed consent. I told Matt to shower as soon as I realized what was happening, he got ready in record time. We got to the hospital quickly. Nathan's nursery was closed because of everything going on with him. We waited in the hall - then the Dr came out to talk to us and I saw all the people crowded around my little boy, more people than could fit around his little crib. He was so little but needed so much help just to survive. That was the moment Matt and I made the decision to demand a transfer to a different hospital, we knew Albany Med had done everything they could for our boy but he needed more.
The surgeon (a different one from the usual surgeon) agreed and started working on it. They intubated Nathan and sedated him. Family came - that's how I knew things were bad. While our family had always been supportive and visited frequently, they all came at once. Aunts, uncles, friends, cousins.... they were all there at once. The family was rallying around us and while I knew it was because they wanted us to know they supported and loved us, I couldn't help but think that it was because we might lose our boy and they all wanted to be there for us "just in case"
They tried to do a spinal tap but because of the position Nathan needed to be in to get the fluid they were unable to safely get it done. His O2 dropped dangerously low because the breathing tube was knocked out of position while they were attempting this. The social worker helped us with the transfer, she helped us feel comfortable. We were leaving everything we knew and everyone we loved. We were leaving the staff who loved Nathan as much as we did. We were going to a whole new place and it was scary.
After a couple days we knew it was a matter of hours until the helicopter came for Nathan. Fear paralyzed me. I wasn't sure we were making the right decision. I wasn't sure of anything. I was going to Boston and we weren't sure if Matt was going to stay with me or not. The hotel was reserved for us, we just had to wait. Matt and I were at lunch with our parents when my phone rang. It was Katherine, the flight crew had arrived - it was time.
We ran back to the NICU. We watched as they loaded our little boy up into a tiny incubator (he was 3ozs. over the max weight, we all decided those 3ozs. wouldn't make a difference). Then an announcement was made that Nathan was leaving, we had been there for 17 weeks and had grown to love everyone, we wanted the chance to say goodbye. Doctors, nurses, respirtaory therapists, staff, and other NICU parents all came to say goodbye and goodluck.
It was the scariest flight of my life and my feet were firmly on the ground the whole time...
That is just a little bit of how Matt and I felt during one of the worst days of our NICU stay. I am telling you all this because that pain is a pain I wouldn't wish on anyone. No parent should ever be scared for their child in that way. No parent should have to watch their child struggle so much just to survive their first few months of life but we did. I am asking you to consider a donation to the March of Dimes so they can continue to their lifesaving research into making sure that one day all babies are born healthy.