If you notice, all our time was in the ICU. Most people get moved to a regular recovery room. That part of Riley was under construction while we were there, and they had no open beds, so we spent the entire time in the ICU, which was awesome. Seriously. They downgraded our status from ICU to regular, which meant visits every four hours instead of every hour or two, but we were still in a very small ICU unit where there was basically one nurse for every baby. They were wonderful.
Around late Sunday (surgery was Thursday), we noticed a decrease in the swelling. This meant we could unhook her for long periods of time, and we would put in her in the ICU’s stroller and take her for very long walks around the hospital. Around and around and around and around. It’s a huge hospital, and we covered all of it. [Side note—this is another reason I loved being there, in a hospital for children. No one looked at us funny, walking around with this baby with this awful incision all over her head and swollen up like a balloon. No one looked at us even twice, because they were all carrying or pushing or wheeling their own kids around with IVs for chemo, or covered in bandages like a mummy because of burns, or in a cast from head to toe for whatever. In contrast, in public, even now, I get funny looks when people see Lis’s scar.]
The decrease in swelling coincided with an increase in alertness, which meant that by Monday morning, she was royally pissed off at the fact she couldn’t see. The only way to calm her down was to keep her in motion, which meant packing her into the stroller and walking forever and ever amen. I think this was because (1) it was familiar (we walk every day), and (2) motion let her know that someone was with her, especially since I would talk to her as we walked, or play music on my phone for her, and (3) there was a low buzz of different noises, and (4) she liked the change in “scenery.”
In short, the stroller was a godsend, and if your ICU doesn’t have one, bring one.
On Monday, I was awakened from my sleep at the hotel by Vor, who sounded like he had been crying. I panicked, because I only heard the tone, not the words and I was flying out of the bed and to the hospital before it registered what he was saying—that she had opened her eyes.
When I got there, she was still awake, and went I went over and put my face close to hers, she squinted her eyes open just a slit, and put her hands on my face. I will never forget that moment either.
We went home late Wednesday. They needed both of her eyes to open enough that they could perform some basic tests. She passed with flying colors.
The downside of Lis opening her eyes was that she didn’t want to shut them and she got really REALLY pissed off about not being to open them all the way. She went from a low whimper to being a scream fest baby because she was angry about the thing. BRACE YOURSELF. The night after she opened her eyes, she did not want to sleep. She was a mess, she wanted to be held, she wanted to open her eyes. It was a long night. The next day (Tuesday) was like that too.
The night nurses forever earned a special place in my heart on Tuesday night, and if the nurses should ever offer this to you, YOU TAKE THEM UP ON IT IMMEDIATELY NO QUESTIONS ASKED NO SECOND THOUGHTS. Do you understand me? Good.
They told us, “Look, you’re going home tomorrow. You don’t get to take a nurse with you. You’re going to be on your own, and you are exhausted. Let us take her for the night.” I hesitated, and Vor clamped his hand over my mouth and said, Yes, thank you. So, we slept in Lis’s ICU room, while the nurses paced the floor with her in a stroller, and fed her, and medicated her, and finally, got her to sleep in a swing. We slept from 10 pm until almost 7 am and it was glorious. I am forever grateful to the night nurses.
Going Home—The First Day And Night
I’m not going to lie, it was scary to stick her in that car seat and take her home. I felt even more overwhelmed than I had bringing home a new baby. Here’s what we did to make things easier:
First, my parents came into town and stayed with us. I took night shifts, they took day shifts, and Vor went to work. [NOTE plan on at least one parent off for at least a week after the week in the hospital. I didn’t go back into work for a week post surgery]. Vor’s mom came by every day to relieve whoever was on duty for a little bit.
Second, I got a notebook where we all METICULOUSLY logged when she had her last feeding, and when had her last dose of medicine, and what kind it was. This is REALLY IMPORTANT since they are most likely sending you home with something stronger than Tylenol and you don’t want to screw it up and over or under dose your kid. Either way is bad news.
Third, we set up the pack and play just outside our room in our hallway/dining room. We set it up with lots of towels and blankets to make it soft and on an incline like she had in the hospital. This way, we could get some sleep and not listen to her snore, but she was right there so we could hear her if she even began to moan. It was also easier to sit by the pack and play in a chair and soothe her or dream feed her than it would have been in her crib (her bedroom is upstairs; the master is on the main floor).
Fourth, people brought us food so that we didn’t have to cook. People also brought us groceries so that we didn’t have to shop. People came and cleaned the house while we were gone. People came and did our laundry. When we came home, the house was stocked and neat. It made life easy.
Fifth, we (obviously) have a dog. Telly went to stay with his best puppy friend while we were in the hospital, and he stayed with them the first night we were home as well. He’s a good dog, but I just couldn’t handle him on the first night home.
The first night was hell. Lis woke up constantly with bad dreams or in pain. We were up all the time--I do mean that literally. We pulled an all nighter. I can’t even describe how bad it was, because I can’t even remember. I was that zombie like. We survived, and that’s all you need to know. You will survive.
Okay, fine, you can email me at graceandpressure [at] yahoo [dot] com. Don't all flood me with emails at once, you know. If you're emailing about craniosynostosis, put it in the subject, and I'll respond quicker. Deal? Deal.