Monday night we didn't leave the hospital until around 1am. We just wanted to stay and hold our little baby girl while we still could. Reluctantly, we left her and went back to the Ronald McDonald house to sleep for a few hours.
When we got to the hospital early Tuesday morning, Lyra was no longer on formula and could only have pedialite until 9 am, at which time all fluids had to stop. They had also put her IV back in her hand and were giving her maintenance fluids. She was totally fine with not eating until about 8:45 am. When we tried to give her the pedialite, she fought us (it was unflavored), so we tried to give her cherry flavor and she wasn't having any of that either.
Eventually we calmed her by holding her close and she fell asleep feeling our warmth against her naked belly.
A little later, they came in to take her blood in case she needed a transfusion during surgery. They did a heal stick and took the blood that way. She put up a fuss and bloodied her blankets. I don't blame her!
Around noon her nurse came in and told us the OR called to start prepping her for surgery. That's when it really started to get real for us. They started giving her antibiotics and other medications to help fight any infections that she would be at risk for getting during the surgery. Since Lyra would have her belly open and exposed for about 4 hours, they needed to take all the precautions they could to fight it before it begins. Another nurse came in and took more blood from the poor little baby. This time they took it out of her arm. Everyone was confused as to why they had to draw blood twice. Apparently, a doctor put in another order after the first blood was drawn.
While we waited, we took as many pictures of her as we could. We held her, kissed her, told her how much we loved her. We also took pictures of her perfect little belly. After the surgery, she would have a scar that would run almost the entire width of her tummy and we wanted to be able to show her when she was older how her belly looked before.
Around 1pm, a surgical OR orderly came down to get her. We went with her to the room where they put all the patients before their operating room is available. Once in there, the nurses went through her charts, and told us what we could expect. She asked how many children we have and when we said "six" she looked at us and said "Six! No wonder you're so calm." We must have put on a good show because we were absolutely terrified to leave her.
Lyra had really good doctors and most of the head of the pediatric doctors were going to be with her for her surgery. One of her doctors was Dr Kavork! That made us a little nervous, but he assured us he was no relation. :o) While we talked and went over some more of the procedure, and what to expect, Lyra started to fuss and cry again. So, the doctor said that they were just going to take her back to the OR and put her to sleep. He said she would be more comfortable, and they could get her ready easier if she was sleeping. So, we reluctantly kissed her goodbye and left our little girl and her life in the hands of strangers. We were told that it took an hour to just set things up, about an hour to explore and confirm her diagnosis, and then the procedure took an hour and it took half an hour to suture and get her ready for transport. So, they said give them 4.5 hours at least before we start to wonder about how she is. They told us to stay close and took down our cell phone numbers.
As Daddy and I walked back up to Lyra's room, we held hands so tight that I could feel his pulse against my hand. The next couple hours were spent not saying much, and pretty much just looking out the window and waiting to get a call. We were anxious for the phone to ring, but also terrified that it would ring too soon.
At 3:49 pm, we got a call from the nurse in the OR. She told us that they were done exploring, that it was biliary atresia, and that they were going ahead with the Kasai Procedure. Although we knew that she had biliary atresia, they needed to confirm it by looking at the liver. Her liver is green, hard, knobby and she has significant scarring and cirrhosis. The scarring occurs when the bile is not drained from the liver. For some reason, Lyra's bile ducts are blocked and the bile backed up into the liver. Bile is like a detergent and it destroys the liver cells when it is not able to escape and drain into the gall bladder to be stored and squeezed into the intestine. They were not able to see Lyra's gall bladder on the ultrasound. It was pretty much destroyed by the time they got to operate on her. We were also told that she was going to go to the picu (pediatric intensive care unit) when she got out of surgery so that they could keep a closer eye on her.
We told her nurse that she was not going to be coming back up to Barbara Bush Hospital after surgery. After we packed up anything in the room that was not essential and took it to the car, her nurse took us down to the picu so that we could take a tour. It was busy down there, and was really scary to watch people running in and out of rooms. There was also a lot of people (there is adults in the picu too) with wires and hoses coming out of them. We were really scared that Lyra had to go there, and it was scary to think that she was so bad that she had to be in the picu.
At 5:45 pm, the surgeon called and dictated how the surgery went. He told us that they took a little longer with the exploration because they were a little confused by her insides. They found that she has intestinal malrotation: (It occurs in 1 out of 500 babies)
After they fixed her intestines, they also took out her appendix. He said that instead of her appendix being on the right, it was on the left because of the intestinal malrotation. We also learned that she was going to stay on the ventilator because they felt she was too sedated to breathe on her own. It was really horrible for us to hear that because we were told that she wouldn't need the breathing tube after the surgery. We later learned that when they took the tube out, her throat swelled so she needed to have it put back in to keep her airway open.
He told us that she was getting prepped for transport to picu, and that it would be about 20 minutes before we could see her. It ended up being a lot longer and when they called upstairs to tell us we could see her, we took off for the picu. We were so nervous to see her. We didn't know what she would look like, and whether she would have tubes and wires coming out of her. We were terrified because she left us as this perfect little baby, and we were going to be seeing her for the first time with the tubes and wires hooked to her. We really didn't know what to expect and I am sure that hundreds of images of what she would look like passed through both of our heads as we waited to see her for the first time.
When we finally got to the picu, we had to wait to see her while they took x-rays. From outside the room, we could see all the wires coming off of her and we just wanted to run in and see for ourselves that she was ok. When we went in, there was our little baby girl laying there with a ventilator going into her mouth, an epidural tube running into her back, electrodes on her chest, iv in her arm, iv's in her foot to monitor vitals, and her arms were in sleeves to keep her from pulling out her tubes. She also had a foley catheter. While we were in there, the nurse put a tube in her nose that went down to her stomach to help drain it. Lyra grimaced at that, but we were happy to see her react to something.