That next day, after the worst day of my life, was Sunday. Chris and I slept in a little then headed back up to Primary Children’s. We didn’t really know what to expect when we got up there. We still didn’t really know what was going to happen with Aili.
Aili’s nurse that day was an older lady named Pam full name “Pamela Anderson”. She looked nothing like the Pam Anderson that comes to your mind when you hear that name. As we started talking to Pam she tells us that Aili is getting a cardiac catheterization on Monday and Surgery on Tuesday. We kind of freak out when she told us that, because just the night before we were told that they didn’t expect to do surgery within the week, and now we are being told she is having surgery in 2 days.
So as you would expect we start asking a billion questions, which our nurse did not know how to answer. She didn’t know that no one had told us those plans. So all day we are trying to get answers to what is going on and feeling very overwhelmed and rushed.
We had posted Saturday night and Sunday morning on Facebook about Aili, and asked our friends and family to pray for her and us. A facebook friend posted a link about Dr. Hanley from Stanford, and other parents experiences with him. The parents were basically saying that he was a miracle worker and if your child had tetrology of fellot with pulmonary atresia you had to go to him. One lady named Astrid even left her phone number and said to call anytime to talk to her and get information to get in touch with Dr. Hanley.
Little did Chris and I know but Dave, Chris’s dad, had called Astrid and talked to her all about her experience that morning. She gave him all these numbers to get in touch with Dr. Hanley and offered any help we would need.
So once we find out that Dave had called Astrid, after we read about other parents experiences with him, and after one of the cardiologist had told us he was the best that first night in primary children’s, we were feeling pretty strongly that we wanted Dr. Hanley to do Aili’s surgery. So now that they were telling us they were doing surgery on Tuesday we were freaking out.
Finally later in the day on Sunday we got a Cardiologist Fellow to come and talk to us and fill us in on what was going on. They had some ideas on what was going on in Aili’s heart but they needed a better picture. That is what the cardiac catheterization was for. They put her to sleep and put a catheter into the big artery in her leg up into her heart, and put dye into the blood so they can see how the blood is flowing, where it is flowing and measure the pressures. Then we were told based on what they see there they will decide what needs to be done in surgery. That the surgery wasn’t for sure going to happen Tuesday but they blocked out the time for her just in case it needed to happen.
So on Monday around noon we took Aili down to the cath lab. It was really hard handing her off, knowing that she was going to be put to sleep and that there were some risk to the procedure. We both gave her lots of big kisses and told her we loved her. We were then given a pager and sent off to wait for her to be done. They told us it would take 3-4 hours (which is short to them). They would page us to come back to the cath lab when they were done to tell us how it went.
We went and got some food, and met up with our moms as we waited for her to be done. About 2 hours in I decided to go pump so that I would be done by the time that she was done. My pumping stuff was up in the cardiac ICU so I went up to go get it. As I turn the corner I first see Aili’s little friend next to her that had gone for his heart surgery early that morning. He was hooked up to a billion things I couldn’t believe it. Then as I walk further I see Aili! Um….didn’t expect that! We never got paged and she was already done and back up to her little room in the ICU.
She was still asleep coming out from being under anesthesia. She had a breathing tube down her throat and was hooked up to all of her other monitors. Her right leg was really limp, pale and cold. That was the leg they put the catheter in. They watched that leg carefully to make sure that it would be okay. It was so sad to see her knocked out like that. Poor little thing. Slowly you could see her waking up twitching here and there.
So again we start asking our nurse, who is Pam again, a bunch of questions. Again she couldn’t answer any of them. She thought they had already called and talk to us about what they did in the cath lab, but no. So she calls down to them and tells them to come up and talk to us. I told Pam I needed to pump,and asked if I should do it now or wait for them to come talk to us. She told me they are on the way up and to just wait. We ended up waiting like an hour and a half. I was SO pissed. I was coming to learn that that is what you do at primary children’s sit and wait for the right people to come talk to you. I was about to explode because I needed to pump so badly, and I was starting to lose it. I didn’t want to go and miss them coming to tell us what they had found out though. Then all of a sudden the cardiologist fellow shows up. Pam tells him we have been waiting and I really need to pump now. He says something to the effect of, “We have lots of other patients we are taking care of, we came when we could” for some reason that really pissed me off. I felt like he was trying to make me feel guilty for being upset. Um I’m sorry that you guys didn’t page us and talk to us like you were suppose to, then didn’t come talk to us for almost 2 hours after she was done, and we just happened to come up and see she was done!
We told him he was going to have to wait I had to pump, but then the pumping room was occupied when I went to go pump, which just put me further over the edge. We asked where another one was and the girls told us the next one was on the 4th floor. We were on the 2nd floor. So Chris and my mom went with me to go find it. Chris went with me so they would have to wait to tell us anything. We got up to pumping room and it had a locked door with a code to get in. Again I lost it. I was ready to explode and it was just one thing after another. Finally my mom stopped someone who knew the code, and we went in. I was a mess. I hurried and pumped and went back down to Aili to hopefully talk to someone about her Cath.
Thankfully Pam had told them they couldn’t leave the floor and had to wait for us to come back. So we talk to 2 cardiologist, one of them did the cath on Aili, and cardiologist fellow. They had drawn a picture on the computer of what her heart looked like, and how it was working. It was actually working a lot differently than they had originally thought.
When she first got to PCH (primary children’s hospital) they put her on medicine to keep her PDA open. That is a vessel that all infants have that close soon after birth. They thought the PDA was the only way the blood was getting to her lungs, because she didn’t have a pulmonary artery at all that did this. But this was not the case. Her little body hand created what they call MAPCAs. Those are collaterals that grow out from the heart to get blood to the lungs. It’s seriously a miracle that her little body did this to make up for her heart not having a pulmonary artery. That cardiologist told us he was pleasantly surprised at how “big and juicy” those MAPCAs were. These MAPCAs are why she never looked blue like most babies with this heart problem do.
This is the picture of the Aili's heart that they gave us after the cath. My dad later colored it so that you could see each part better. The orange with the dotted lines are the "big juicy" MAPCAs her body grew to help out. The bottom 2 chambers have a hole between them which makes the blood mix. The horizontal orange with solid lines is part of the pulmonary artery. Those are pretty small, and should have a whole artery that connects it to the lower right chamber of the heart. The pulmonary artery is what takes the blood from the lower chamber to the lungs to get oxygen. Compare her heart to the picture of a regular heart below.
Because of these MAPCAs there was no need to do the surgery they thought she needed the next day. Halleluiah! The plan now was for them to talk about her in their big meeting on Wednesday and make a plan for surgery from there. The basically told us they rough plan would be to do surgery in 3-4 months. Chris at this time basically told them we knew about Dr. Hanley, that he was the best at exactly the surgery she needed, and that if he was the best we were going to go to him. We asked them to send the information they got from the cath down to Dr. Hanley so that he could at least look at it and give them his input on what should be done. They told us they would FedEx the info to him. They have worked with him before so it wasn't a big deal.
When they told us of this a Chris and his mom were very happy and optimistic about everything. I was not so much. I think I just looked at the ground the entire time they talked. I was having a hard time feeling good and positive at that time. It was all still very overwhelming. It's hard to look at the positives about a heart defect your baby has.
We left late that night, overall pretty pleased with the news that we got, could have definitely been worse. Aili was doing so well with what she had. We felt like things were as good as they could be considering everything. Aili still wasn’t breathing on her own when we left. We called around midnight to see how she was doing and if she was breathing on her own, she still needed a little help. About an hour after that the nurse called and told us they took the breathing tube out and she was doing great.
Tuesday (Valentines Day) we headed back up to PCH with Chris’s parents. Right when we got on the freeway I got a call from a cardiologist saying that Aili was doing well. She was moved to the 3rd floor, and would probably be able to come home in the next couple days. We turned around to get her car seat so they could do a car seat test with her.
So we headed up to the 3rd floor when we got there. Wow was that floor so much better than the ICU. She was now in the Children’s Surgical Unit. She was all the way down at the end of the hall in a corner room. It was a big private room with a door that closed, a bathroom, and a window that looked out over the valley. It had a rocking chair and a couch. So much more comfortable and quite than the ICU.
On Wednesday we headed back up there unsure if Aili would be coming home or not. Once we got there they told us she would be going home. We were told a cardiologist would come and talk to us about everything before we went home, and we could ask them any questions we had before we left. Again….we waited quite a while. And no one can give you and estimate on when they will come talk to you. Eventually the cardiologist came. This cardiologist was awesome though! The very best so far. She actually had a personality, social skills and a heart. I felt like she actually cared about us, and would stay there and talk to us as long as we wanted. She answered lots of questions for us and we felt really good after talking to her. She told us that if we could and we felt comfortable going to California to get the surgery, that that was probably a good idea, but that the surgeons at PCH would do a good job as well.
While we waited for our discharge papers, and the breastfeeding specialist lady to come talk to me about transitioning from pumping to breastfeeding we had to watch a video on infant CPR and practice on a fake little baby. We had to pass it off with our nurse, who was a guy, and they nurse helper was a guy too. Totally didn’t like that. Not that I don’t trust that they can do their job well, I just don’t feel like they have the same compassion for babies and mothers as women nurses do.
It took forever to get our discharge papers, I don’t know why. We just sat there and waited and waited and waited. Super frustrating. Again pretty sure that's all you do at PCH is wait. I don’t know why it took so freaking long. I think we left around 7pm when they told us we were for sure being discharged at like 10am. It was dark and cold when we left.
I called my mom as we started on our way home. I just started crying. I was so happy to be able to finally go home with her, but I was so scared and the same time, knowing her heart does not work like it is suppose to, and not knowing if something would go wrong at home.
I asked my mom to be at my house when we got there. She made some food for us to eat when we got there, which was very nice. After we got home I was sitting in Aili’s room feeding her and broke down again to my mom. I wanted so badly to go home with a baby that was healthy. I didn’t want to have to go back to get a surgery. I just wanted her to be home and stay home and not have anything to worry about. It is so hard not to wish away reality. I just wanted a normal healthy baby so bad. Reality was way to hard.
I think having a new baby at home is nerve racking no matter what, but I was super scared that something would go wrong. Before I had Aili, and knew she had this heart defect I was just planning on her sleeping in her crib in the room next to us. Now there was no way I would have her not right next to me. My parents went out that night to buy a bassinet so she could sleep right by me.
Chris had not been back to work since we had Aili, so he was planning on going back to work that next day. I didn’t like that. I didn’t want to be home by myself with her the first day home. My mom told me should would take a half day off of work to be with us that next day. Thank goodness. Even though it wouldn’t be really eventful it was nice to have someone else there to help out.
So Aili was home, and it was SO nice. It felt like things could be kind of normal until she needed surgery, that we could just enjoy her for a few months. Little did we know it would be a lot more eventful that just enjoying her quietly at home for a few months….more on that to come.
1 comment:
Love you guys! She is beautiful!
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