Hospital stay with Iliana

This is what I wrote in the hospital the last night we were there after Iliana's surgery. It is pretty scattered, and not thought out. I just wrote. (And I was pretty sleep deprived at this point)

Oct. 2, 2010
I am at the hospital while my daughter recovers from heart surgery. Nolan is working on homework and doing laundry so I'm by myself. It really began on Monday, September 27. Iliana was starting to act funny on Saturday and Sunday. She was extra sleepy and not eating well. By Monday she would not eat at all. So we brought her to the emergency room. There she was poked and prodded about a million times because they could not get a line in her veins. After many tests, echoes, x-rays, and blood tests, it was discovered that she had a congential heart defect. A coarctation of the aorta. Which means that her aorta was so narrow that blood could not flow to the lower half of her body. At home, her body temperature had dropped to 95 degrees. Terrified I called Mom to take Oliver so we could take her. Nolan sat in the back with Iliana to make sure she didn't stop breathing while I drove as fast as was safe. Throughout everything I was so scared that she would die that I could not stop crying. Luckily Nolan was a stoic man and stood by my side to keep me calm. And then I learned that she could die, and I was even more scared. Monday night she got transferred to the UC DAvis Medical Center. But before she left, Nolan, Matthew, and my dad gave both her and me blessings. I really don't remember what was said and I really didn't feel better right away. Then they took her away and Nolan rode in the ambulance. I got scared again when they turned the sirens on. Sarah drove me to the other hospital. Matthew drove our car. Melissa, Sarah, and Mom have really stood by my side throughout this whole thing. I couldn't help but imagine what it would be like if she died. All the cute clothes she didn't get to wear and the tiny casket at the funeral. But mostly I kept thinking how long both of our families had waited for her and now we got one and God was going to take her back. But I knew that through God's plan she would always be our daughter. It's really hard not to cry even just writing this down. (Even typing it now, is making me cry again) Monday night she got settled in and they had her sedated and her poor face was just covered in tape. The only thing that happened that night was that her breathing tube came out and she had 5 or 6 people around her to get it back in. I stayed at the hospital that night, and Nolan went home to sleep. Tuesday came and it was just a day of talking to nurses, doctors, and surgeons. They said that they wouldn't even know what kind of surgery she would have until the next morning, and that they surgery might not happen til the next week. When they told me that I started to cry all over again. How could I wait a week for them to fix my daughter. Then recovery could take as long as 3 weeks in the hospital! I got so discouraged at that point, and Nolan's paternity leave was ending this week. Later that day they told me that she might have the surgery the next day, Wednesday. Then it turned into a definite surgery on Wednesday, woohoo! I went home that night to sleep while Nolan stayed. But I came back early to hear what the docs said after they had a conference about her. They saw that her VSD was already smaller and so they would only operate on her aorta and would not have to open her chest and heart. Her incision would be on her back. With that surgery, recovery could be as short as a week to 10 days. Woohoo! less time at the hospital. So she went into surgery around 3pm Wednesday afternoon. Mom, Melissa, Sarah, Nolan and I sat in the waiting room and kept ourselves busy while the docs kept us updated. The surgery went perfectly! They said it took longer to get a line in her than it took to do the actual procedure. Now, when they do an operation you have to sign consent forms for both the anesthesia and the operation. The funny thing that happened was that we had signed the operation consent form Wednesday morning but we didn't sign the anesthesia consent form until she was actually in the operating area. Like we would want her to go through this awake! Also, choices are much easier when they are a matter of life or death, which in this case they were. They brought her back to her room, got her settled in, then we were allowed to see her. She was hooked up to so many things that I couldn't even really see her. That night we were visited by Emily, and Matthew and Hillary. Nolan and I decided to both go home tht night since she was so sedated that we would be of no help. When we got back on Thursday they had already taken the breathing tube out. That day was just more talking and testing. I eventually got to try to give her some glucose water which she didn't really like. That night she was alert and awake and crying. But there was nothing I could do but hold a pacifier in her mouth. I stayed that night and Nolan went home. Around 4 am she finally went to sleep after a dose of morphine. So I got some sleep too, just to be woken up again at 6 am to talk to docs again. They told me I could feed her and hold her. (This was Friday morning) So I fed and held her and she went right to sleep. This was great because they had talked of her needing a feeding tube but we didn't at all. If it's one thing my kids can do, its eat. Friday was a super recovery day. They took her off IV meds and switched to oral, she got to eat all day, and the doctors even said she could possibly go home the next day, Saturday. The nurses however, know how much is really involved in discharging a patient and knew it would probably not happen. She looked better and better as the day went on. That night Melissa and Sarah stayed with her so Nolan and I could sleep. Melissa kept me updated. It was decided to keep her another day so the could see how she did without blood pressure medication, so they wouldn't have to send her home with it.

10/3/2010
Saturday was just another day of waiting. We got moved out of one PICU to another. The other PICU is where less serious kids go. We no longer had a private room but at least we had a window. We stayed there a while until they moved us again out of the ICU altogether. At Midnight. We were moved to another non-private room, but no window this time. Now it's Sunday morning and we are just waiting and waiting. All the paperwork takes a very long time. But her recovery has been so short we never thought we would ever go home this early. But they always say never believe it until you're in the car.