We met her nurse who was very nice, and got all situated for the night. Once you get moved up to 3 West you are basically practicing, and getting ready to go home. So the nurse has like 4 different patients in different rooms, and doesn't stay in the room. So, they kind of expect at least one of the parents to stay with the baby while they are there. I was kind of nervous to spend the night with her, because I didn't know if she would sleep, or how well she would sleep, or how I would need to help her. I had started to breastfeed her once we moved up to 3 West. She wasn't doing awesome, but I would think that is expected after open heart surgery....right?
That night she did pretty well. I don't think she ever got that hungry...and least she wasn't waking up like she was hungry. So I got up to pump then tried to feed her a bottle. But she wasn't really interested in the bottle at all. She would stick her tongue out like you were gagging her with it. Funny girl.
We shared a room with a cute little baby boy who had heart problems and had down syndrome. Poor little guy didn't have anyone that stayed the night with him. He cried most of the night, but his cry was almost silent, I think from the breathing tube and everything. It was really sad. The nurses wouldn't know to come in until his monitors would start beeping. I wanted to help, but I don't think I could really do anything.
Thursday, May 24th, they took the dressing off of her stitches. I was holding her when the nurse came in to do it. I hadn't seen her chest at all since it had been cut opened. I was really nervous to see it. I looked away when she took it off then slowly looked down. It was quite the site, kind of gruesome if you ask me. The stitches were big and pulling the skin together. I was surprised at just how big the cut/scar was. As awful as that cut looked, my baby was as beautiful as ever! I love her some much. I just realized how amazingly strong she is. I don't think I could do what she had just done period....but then have a smile on my face too, no way.
She is SO beautiful! I love her!.. and her amazing hair!
What open heart surgery? Let's play!
This day was also kind of hard. They had a lot on the agenda for her to do. During rounds they said she was doing great. The last chest tube wasn't draining much anymore so they were going to take it out, she had already gotten blood drawn for labs, then she needed another chest X-ray (they do one everyday), an EKG, and Echo, and a lung profusion scan. They kind of wanted to get it all done that day, because if they got it all done and everything looked good we could possibly go home the next day...Friday (9 days after surgery).
First off was taking out the chest tube, I left during this because...well I just couldn't watch,and I hate hearing my baby cry when I can't do anything to help her. It took forever because they couldn't get a good blood pressure reading on her. She cried a lot and really hard. We hadn't been there for the other two being taken out. Chris and the Child Life Specialist tried to comfort her and distract her with toys during it. Chris said they just yank it out, and the stitches holding them in are designed so that when they pull the tube out it cinches the hole together and they tie it up. The "stitches" are more like heavy quadrupled over thread (maybe even thicker). They weren't like the thin stitches down her chest.
Aili needed to eat at this point, but they said she had to lay flat for an hour and get her X-ray before you could move her to check if there was any bleeding from taking the tube out. Then they did the EKG, and then the Echo. Thankfully the lady that did the echo this time was a million times better than the lady who did it before her surgery. It was way faster this time, and the lady just let Aili hold the wand and cord and didn't try to strap her down. Made it so much easier because Aili was happy. And I think the lady was just faster and better at it. It took a little less than an hour.
Then we were off for the lung profusion scan. All the other stuff they bring the big equipment to her room, but this one we had to walk with her out of the Children's hospital and into the regular Stanford hospital (they are attached, but separate.)
We went down into this area that was like deserted. There was no one down there...it was towards the end of the day I guess. We went into a room with a massive machine (That's why we had to go to them, they couldn't come to us). Then the Nuclear Medicine Technologist (ya nuclear, sound dangerous) came in to get Aili started.
We strapped her to a board and bundled her up in her papoose. She wasn't too happy about that at first.
Then the Nuclear Medicine Technologist injects her IV with a radioactive isotope. This isotope is super small so they get stuck in her lungs, and then they can take pictures of it with this massive machine that they put Aili into.
The machine come down and kind of looks like it is going to squish her.
The white, in the middle of the black, on that screen are the isotopes in her lungs that they are taking pictures of.
We thought for sure that she would cry pretty hard through this whole thing...well we were wrong. We walked away from her and she was silent. Then we realized that she fell fast asleep! It was so cute, and perfect for the test!
They do this lung profusion scan because the amount of blood going to her lungs now after the surgery is a lot more than the lung are use to. So they are seeing how the lungs are doing with the new blood flow and measuring how much blood is going to each lung.
It was a long day, but we got everything done that needed to be done. The doctors and nurses were surprised that is actually all got done. Usually it takes forever to get things done. It was tiring for Aili, but after it was done she could just rest, and then hopefully go home!
1 comment:
She is crazy cute! Hard to believe she's smiling after open heart surgery!
You guys are awesome.
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