Doesn't she just look so uncomfortable?
The nurses told us that from the older kids that can talk the part that hurts the worst are the chest tubes. So you just want those to come out as fast as possible. They took the first of the threes chest tube out this day the one on her left side. The one on her far right side was the one that looked the most uncomfortable. Now that Aili's swelling was down you could see the chest tube under her skin and it looked like it hurt.
She got to try to eat for the first time this day. She did okay. The stomach is the last thing to start working again, so they just ease them into it. She couldn't breastfeed yet though. They like to know how much they are getting and she was still hooked up to too many things I think. But I pumped my little heart out the this whole time and she had plenty of frozen breast milk to choose from.
That night Aili was so sad all night. She just cried and cried. We didn't want to leave her crying. Until that night Aili had her own nurse, but they felt like she was doing well enough that her nurse that night could look after two people. So I didn't want to leave her because I knew that the nurse couldn't always be right there helping her and comforting her. We stayed pretty late playing her music and rocking (shaking) her crib, until she finally calmed down and went to sleep. Then we slipped out to get some sleep ourselves. I hope she stayed asleep and slept well. Poor little girl. We worried about her all night. She had such a bad day.
Wednesday, May 23rd, I was nervous walking up to her room that morning because I was afraid she would be really sad, and in pain again. When I walked in I was so surprised and so happy when I saw her. Her hair was no longer greasy, it clean and fluffy, she looked so comfy and had a big smile on her face! I love it!
Yay our happy girl is back!
Look at the sweet, little, angel face.
When the doctors came in for rounds that morning she was just smiling at them the whole time. They would stop in the middle of what they were saying to look at her and talk to her because she was being so cute. They thought she was doing awesome, they were really happy about the way that she had been progressing since her breathing tube came out. They made a comment that she didn't even notice that it came out. I guess some babies have a hard time transitioning to breathing on their own. That morning they also took out another chest tube. The one on the far right that looked the most uncomfortable. I think that helped her a ton. She didn't look like she was in pain at all.
The doctors also told us that she was doing so well that they didn't feel like she needed to be in the ICU anymore and that she would be moved to the 3rd floor for the rest of her recovery. I didn't really want to go up to the 3 West (3rd floor) and share a room, but I wanted to go because that meant one step closer to going home! Yay to moving on up to the 3rd floor!
P.B. was Aili's nurse that day, and she was awesome! She rearranged Aili's bed so that she was nice and comfortable, and she was so sweet and nice to her. I seriously think that made a lot of difference too, to have a nurse that is sweet and loves you. Aili totally loved her. They took out one of the IVs in her wrist and the one in her neck. The one in the neck is stitched in, so that was really gross and I didn't watch them do it. It didn't look fun.
Taking one of Aili's IVs out. Yes! She's having a blast.
All done!
This day we finally got to hold Aili! First time since she had surgery. A whole week without holding her. I was pretty nervous to hold her with her chest tubes still in. But since there was only one left, and she seemed to be pretty comfortable, it wasn't too bad.
Chris and I left to grab some lunch really quick. When we came back we saw the cutest thing! They had turned on cartoons for her, and she was smiling ear to ear just watching the TV. It was so funny. She loved it! I don't really want my baby to be a TV junky, but when you have open heart surgery your parents let some thing slide. It made her really happy so we, and monkey, just watched with her.
She's glued to that TV.
Oh and this day she was off ALL her medications. She had no continuous medications going into her. Amazing. She only had open heart surgery a week ago!
All the medications that use to be hanging there are gone! Go Aili you're a rockstar!
1 comment:
Yeah for moving up floors! Thats how we knew we were getting closer to home too! Unfortunately, I thought it got harder as he got older. He had 5 caths before he was 2 and then surgery at 4 1/2. This most recent one was hard because he kind of knew what was going on but it was hard to really prepare him since he doesn't remember anything from before obviously. I'm hoping for his next one (hopefully in 10 years) he will really understand everything and it won't be so scary for him. We used lots of the pictures from his first surgery to prepare him for this most recent one, so it's good you are taking lots of pictures too! And you will be amazed how much better they feel and act after all those chest tubes are out. Zach had surgery on a Thursday and they told us he'd probably go hom on Sunday. I thought there was no way until they took those chest tubes out on Saturday morning and he was a new kid! He could barely walk down the hall before and then he was taking laps with the nurses! Those chest tubes are aweful!! Oh, and we did know about it ahead of time. I found out at about 30 weeks into my pregnancy. I don't know if it really helped or not, it gave me a lot more time to research and learn about the defect but that isn't always a good thing :) But I knew when I had him, he wouldn't be going home with us, so at least I was prepared for that. He had his first surgery at 4 days old (and that was the first time I got to hold him!) and he came home on oxygen yet when he was 3 weeks old. The good thing is they will never remember any of this and their lives will be so much better because of it! It's definately hardest on all of us watching and waiting! Hoping her progress continues and you are able to keep moving up the hospital!
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