As anxious as I was to see my son after surgery little did I know that this was going to be the hardest part. Haven’t read about the beginning of our Day? Click here. Missed the what happened during his surgery? Read it Here.
I left off at meeting with the surgeons after they finished his surgery. We were told it would be another 45 minutes before we saw him. The wait was long, but I was ready.
We received the page and made our to the other side of the hospital. As many times as I had been to Seattle Children’s I never really knew how big and how much like a maze it was. We made it to the ICU and went to the front desk. He was in room 305. This was the moment I was waiting for.
We walked in and there he was, my bean. My heart hurt when I saw him. His face was swollen but it wasn’t that bad. His lips were the worst. The raspy sound he made when he tried to call out made me want to cry.
In the ICU we had to share a nurse with another patient, a little girl. I didn’t know what was going on with her but I knew it wasn’t good. The nurse was ALWAYS in her room. In between going back and forth between the rooms the nurse filled us in on what was going on with him. Then there was a shift change and we got a new nurse. It was all so overwhelming.
They wanted to monitor him to make sure every thing was ok. They gave him one dose of morphine and changed to oxi (oral) and Tylenol (oral) after that. In about 6 hours they wanted to try to feed him. Whether he breastfeed or took a bottle was my choice. I decided to give him a bottle at first. I wasn’t comfortable holding him with all the IVs in.
I disliked the nurse he got after the shift change. She was very pushy. All the other nurses asked me what I wanted to do in regards to feeding and pain meds. They would ask me what I was comfortable with or if I thought he was in pain. If I was unsure they helped me come to a decision. This nurse was pushy. She didn’t really listen to what I wanted. She just stated what she thought was best and tried to get me to agree.
This was one of the hardest things for me that night. The nurses demeanor and the other child made me feel like my sons needs weren’t good enough. Do I call the nurse away from a little girl who needs her? Is what I need really that important? He’s trying to cry, do I wait and see if he stops? When should I call the nurse? Should I try to help him myself? What if I make him worse?
I wanted to feel like my son was important too. You don’t know how horrible I felt.
I was on my feet until night came. I wanted to stay by his side. I wanted him to know I was there. My feet were killing me, but I didn’t know what else to do. It seemed like anytime I even thought about sitting down he’d make a noise and I couldn’t move.
I was an emotional wreck. On top of the fact that I was hungry and tired. I was supposed to be getting a tray, because I was breastfeeding and it was taking forever to come. It put me in one of my moods. That wasn’t good, because when my mom would try to comfort me I would push her away. I hated it, but I couldn’t help it.
At around 7 pm I was able to breastfeed him. They had taken out a few of the IVs so I was a little more comfortable holding him. He ate as much as he usually did and that was encouraging. They said when he starts eating as much as he normality does they would stop the fluids. At that time he was eating every four hours when he usually eats every two hours. I believe this was because of the fluids. He didn’t start eating more frequently until they stopped it the next day.
That night, the first night was a very long night. I barely got any sleep at all.
The days after
The next morning we were visited by doctors from neurology and plastic surgery. They checked on him and said he was doing good. So they moved us out of the ICU that afternoon.
I was getting more comfortable holding him, but not picking him up. He was only connected to one IV and had a monitor on his foot. On this day his swelling peaked. It was so bad he couldn’t open his eyes. So he would scratch at them. I couldn’t imagine what he was feeling.
I wasn’t sure at first, but it seemed like holding him was helping with the swelling. That encouraged me to hold him more even though I was uncomfortable. It also helped me feel better and sleep more with him in my arms.
He slept pretty much the whole time we were in the hospital after surgery. He would only wake up for a few minutes at a time and to eat. I think this made the time we were there a little easier, especially since he couldn’t see anyway.
Late afternoon on January 9 we were discharged. This was scary for me, because I was still uncomfortable picking him up. My mom was fine with doing everything that I was not. So I was fine with being discharged. I think I was also worried about him being in pain.
That night I held him the whole night. In the morning the swelling had gone down. He could open both eyes now. He was finally staying awake more, though he still slept quite a bit.
It took a few days, but he slowly started getting back to his old self. The only difference was that he was super clingy, but that was ok because he had just had major surgery. For 3 weeks after we were still giving him medicine for the pain. Only when we thought he needed it.
I’m happy and thankful we got his surgery done when we did. Children are so resilient and they bounce back so fast. A few weeks after his surgery you would have never been able to tell he even had surgery.
This is the last part in the My Hardest Day as a New Mom series, but this is not the end of our story. He has to wear a helmet for a year. I’m also hoping to continue to raise awareness for Craniosynostosis. Thank you for joining us on our journey.