Like so many, we did not know that our son had physical problems before he was born. The only hint we had was a single umbilical artery that was found at his 20 week scan but subsequent scans showed he was fine so we figured it was a fluke. Well, It was not a fluke and something was very wrong. When he was born the first thing we noticed was that something sounded really off about the way he cried, it seemed oddly melodic.
After my son was rushed off to the NICU because he was 10 weeks premature, I thought everything was fine.
After having multiple complications that landed me in the ICU with, at most, a 20% chance of survival; I didn’t get to see my son for two weeks. My poor husband had to go between the two of us who were fortunately still in the same hospital. He brought me pictures of my son and told me everything was going to be OK. He was trying so hard to stay positive for his son who had a 50/50 chance and his wife who was pretty much told she was going to die from the moment she made it to the ICU. Obviously I’m not a ghost so I survived.
It was easy to stay detached during that time because I had my own recovery to consider and I had not yet had an opportunity to bond with my son. After I was moved to a step down unit I was allowed to see him for the first time and I have to say it wasn’t easy. It was surreal almost. We were both covered in bruises from failed IV’s and blood draws. We were both still healing and trying to get out alive. He was still paralyzed from the surgery. All I could touch was his foot.
The day after I was released and sent home on bed rest without my baby, I was right back at the nicu to visit him the next day even though I could barely even walk without resting every 10 feet. I couldn’t think of anything else that I could do at the time except cheer him on. My roughest day in NICU was the day that he tried to stop breathing over and over and over and over again. I lost track of how many times in a half an hour my son stopped breathing and the nurses had to rub his back to make him breathe again and it struck me that day how fragile he really was. I was scared to bond with him at that point because I didn’t know if he was going to live long enough for me to bring him home. I started to cry in the middle of The NICU and I had to stop myself because I didn’t want to break down in front of people. I don’t know how to pretty cry… So I went to my car as fast as I could and I just screamed and cried and beat my steering wheel with my hands until they were swollen and bruised.
Over the next couple of months while my son grew, I was told he had reflux. I don’t think I understood exactly what that meant. I think I was kidding myself at the time that once he got out of the hospital, just like me, he would be right as rain.
When he was about to graduate into a step down unit, a doctor sat down with me and tried to explain to me that he was going to have issues throughout his life and that he would need dilations and other procedures in order to thrive. Part of me heard him but part of me was not ready to understand and most of the things that he said it went right over my head anyway. He may as well have said nothing at all but looking back he was the only person There who tried to talk sense to me. I was so ignorant at the time of the things that we were going to be facing. I didn’t even know what these things were and I took everything at face value rather than look it up myself to learn whatever I needed to know.