On the 13th of this month Nathan turned six. For most parents their child's birthday is simply a reminder of the joy they experienced the day that child was born, but for us it's a reminder of how strong our little boy is and how far he's come in six years.
It seems hard to believe that it was six years ago that Nathan was born and our nightmare began. We were first time parents with a very sick child. To say we were overwhelmed would be an understatement. That wasn't what we had prepared for when we first found out we were pregnant.
Then on the 14th we had a different anniversary, it was the sixth anniversary of Nathan's first surgery. He was first wheeled into the OR when he was less than 24 hours old. It was supposed to be a three hour surgery, the surgeon called us six hours in to get a verbal consent for a couple more things and told us it would be a couple more hours until it was all over. The surgery didn't go as planned and there had been a couple surprises, we later learned that this was just who Nathan was and he seldom had a surgery go as planned.
The 14th was also the day we got a much better idea of how long Nathan would need to be in the NICU and the result was devastating to both Matt and I. We were prepared for a couple weeks at most, we were told then that it would be six weeks - I laugh at that now, six weeks would have been great. It ended up being 12 surgeries, one 'get to the hospital now, he's really sick' phone call, and one flight to Boston or in real people time 20 weeks before he was discharged.
I'll never forget the day he came home. Matt left Boston first to drive our car and all our stuff home, I stayed to ride in the ambulance with Nathan. It was the longest ride ever and I felt like we'd never get there, but we did. They wheeled Nathan into our tiny apartment and just looked at Matt and I and asked where we wanted him, we had no idea. We had never been solely in charge of his day to day life before and this was new to us. He looked so tiny and fragile, who were we to make such a decision?! We settled on the swing. His equipment vendor was there getting things all set up and the paramedics made sure he was all setup before they left. Then his home care nursing arrived, what a nightmare they were. The nurse manager should have been a clue they wouldn't last long in our house. Then the nurse left and we were alone. Another nurse was coming at 11 for the night shift but we were on our own until then.
It was the first time we'd ever had our son at home and it was scary. I think all parents are scared the first time they're alone with their baby at home, for us that fear was magnified. We had been read the riot act by the NICU about what to go to the ER for (just about everything) and we didn't want to go back, but we did and we went back a lot that first year.
But here we are six years later. Nathan is in first grade, he loves to read and color. He loves going to school and playing with his friend. He's had a few more surgeries since he left the NICU. He's been in the hospital a lot but inpatient stays have become fewer and farther between as he gets older.
But on his birthday all I remember is the fear from that awful day. But no matter what else happened it was the day I became a mom and in the end that's all that matters.