We found out in early December that Ella would be having surgery at the beginning of April. She was just shy of seven months old. The surgery went really well. I was amazed at how calm I was during the surgery itself. Both of our parents were there with us in the waiting room and the time went by quickly as we anticipated updates. The first update was that they had gotten all the lines in they needed to get it, this had taken about one hour!! I was shocked to look up and see our neurosurgeon standing in the waiting room within the next hour and half. He said things went great and that the plastic surgeon was finishing her up. This took about another hour to hour and half to do. I was anxious to see her as it had been so hard to hand her over to be taken off to surgery. We waited and waited and waited! Finally we got to see her. They had taken her straight to the Pediatric Intensive Care Unit (PICU) and they were getting her settled.
I saw her......
I was prepared that there would be lots of tubes and lines coming out of her.
My heart broke.......
She was laying there crying. Crying this horrible small cry that you knew came from pain. I couldn't do anything for her at that moment. I could only brush her cheek and say "Ella, mommy's here."
To be honest I was a bit upset. I didn't understand why she needed to be awake enough to be experiencing pain. I didn't understand what I was to do next. The neurosurgeon made a comment that they can be very fussy for some time after this surgery but I was looking at him with concern......I mean we were only less than a couple of hours post surgery. I finally asked "Can I hold her?"
The nurse said yes but this was no easy feat! It made holding her in the NICU look easy!! She had an arterial line which was inserted directly into an artery so that they could monitor her blood pressure at all times. This also allowed them to take blood gas readings easily as well. With this line in, we had to be very careful when handling her and the nurse had to actually move her over into my arms.
Once we had her in our arms she seemed to do much better and sleep more comfortably. We also go her a fish aquarium for her bed which she enjoyed and things continued to go well. We had many visitors that evening including the grandparents, Kim and Ryan, and Aunt Robin.
During Ella's procedure and the next two days she would need many blood transfusions. We knew this ahead of time and we were able to find our own donors for the blood. Ella ended up to have one of the more rare types of blood and I wasn't a match. It ended up to be difficult to find some matches. We found two friends, Brandon and Carol, who were willing to donate. Aunt Robin couldn't remember her blood type but she had a gut feeling she was a match. She ended up requesting her hospital records from when she had her children and it turned out she was a match too! Ella received her blood first but through some difficulties over the next few days we ended up needing all three bags of blood. We are beyond thankful for those three people who were able to help our daughter in such a special way!!
The night went wonderfully and we had a great nurse who was very concerned with keeping Ella comfortable and making sure she got some rest. I was so thankful for a smooth night. The next day Ella started running a fever. It is probably a good thing that I am not familiar with temps in Celsius as I would have been very alarmed early on. Her nurse was getting concerned with her temps and called the PICU doc in. Her temp was over 104 degrees. The doc said it was too high for it to be related to post surgical issues and that she likely had an infection. They gave her a dose of antibiotics to take out whatever was getting in her way.
Interestingly enough, several people including the docs on the floor remembered us from when we had been admitted with Ella's heart condition. The same doc who ordered the antibiotics was the one who made the decision to "reset" Ella's heart so many months before. One resident said that they had several learning opportunities from her case last fall. I told Ella "Thanks for helping them out sweet girl, but I think you have taught them enough for now."
We spent a few extra hours in the PICU getting Ella's temperature and blood gas levels to even out. We were then moved to PIC. Ella was doing good but her eyes were beginning to swell. She couldn't open them for about 48 hours which made her mad. They finally took off the gauze on her head and her drain came out as well.
Surgery was on Wednesday morning and by Friday night we were in a regular pediatric room. They finally gave Ella some steroids to help with the swelling. On Friday night we were so very happy to finally see her peeking her eyes at us and by Saturday morning she was a brand new baby!!
On Saturday we were told that she seemed so much better and that we were going to go home!! I was a little intimidated to be taking a baby home with so many stitches in her head but we were ready to be home! It seemed incredible to me that we could have such a major surgery with some ups and downs afterwards but still get to come home so quickly. We are so blessed to have such an amazing facility so close to home who took amazing care of our sweet baby girl! We are forever grateful!!
