I was amazed at how much it seemed like she wasn’t in much pain. One of the nurses told me that the little babies tend to bounce back really quickly. My 2 week old daughter had open heart surgery and all she needed was a little bit of pain medicine few days.
Getting back onto the story of Isabel’s birth. If you missed any of the previous posts you can check them out here:
I was amazed at how much it seemed like she wasn’t in much pain. One of the nurses told me that the little babies tend to bounce back really quickly. My 2 week old daughter had open heart surgery and all she needed was a little bit of pain medicine few days. Crazy…
A few days after the surgery, we were able to start holding Isabel again. Her heart block was still hanging around and the doctors and nurses where having a little trouble figuring out exactly what was going on. By the fifth day after surgery her heart beat was getting back to normal and the sixth day after the surgery they went ahead and removed the chest tubes and the pacemaker wires. It was nice to not have to worry about her possibly having to get an internal pacemaker and it was great to not have as many wires hooked up to her.
The next big milestone for Isabel is to get back to the amount she was eating before the surgery. She went for a few days getting all her nutrition from an IV and it is going to take a little bit of time before she is taking everything by mouth again. We had been working on it but it was going very slowly.
Once we knew that Isabel was in the clear after the surgery Jen and I decide that I should head back to Crested Butte. My parents would be coming into town in a few days and Jen’s mom had been watching Addison for over 2 weeks by herself. I was looking forward to getting back home to spend some time with Addison and have a night or two of sleep in my bed again.
I was a great distraction for us to have Addison still in town for Isabel’s surgery. We had lunch downstairs with her and Mamaw PJ before they headed back to Crested Butte. One of the nurses would come out and talk to us or give us a call every 45 minutes or so to let us know how things were going. She told us that the surgeon decided to go with a procedure where he used a cadaver artery as a conduit connecting the right ventricle to an area of the pulmonary artery that had some blood flow already. One of the rules they told us is “If it flows it grows”, so the goal was to provide more blood through her pulmonary artery in helping the artery grow. We received word that the surgery was a success and we would be able to go see Isabel in her room.
I am going to talk in detail about what Isabel looked like when we got back to her room and include some pictures as well. They are hard to look at and I completely understand if you don’t want to see a week old baby like that. I am including them because it is what we went through and is part of the experience. You will not offend me if you don’t continue reading.
When we got to her room she was on her bassinet and there was a nurse and doctor that were making sure everything was setup exactly right. She had a blanket over her and the nurse told us that we are welcome to move the blanket and sit around her but they didn’t want us to move her. We could touch her head and let her know that we were there but that was about it.
We removed the blanket and she had a 4 inch long bandage over the incision on her chest. She had 2 chest tubes for drainage coming out from below her ribs and 2 wires attached to an external pacemaker coming from just above where the tubes were. She was in 3rd degree heart block. This means that her heart would not beat normally and she was completely reliant on the pacemaker. The doctor told us that they were a concerned about it because they did not cut on the heart in any places where it would have cause the issue she as experiencing. They were going to keep a very close eye on it and normally little kids start to come out of the heart block a few hours or even a few days after. If it did not go back to normal after a week then they might have to replace the external pacemaker with an internal one.
We spent the next few hours making sure Isabel knew that we were there and watching the nurses and doctors. This surgery was the first of what will be many that she ultimately has in her life. I don’t know if I will ever get used to seeing my little girl like this but it is much better than any alternatives.
Over the weekend we had multiple doctors letting us know the different options for surgery. Jen and I decided that we would have enough time to have Addison and Mamaw PJ come spend a day or two in Denver before the surgery. This had been the longest Jen had been without being around Addison and we both missed her a lot. We were told that they were scheduling the surgery for Friday, January 10th at 7:30 am.
Mamaw PJ and Addison arrived in Denver on Monday and we were able to spend some much needed time with Addison. We were even able to go through our normal bedtime routine Monday evening. It was really nice to have something kind of normal go on for once in over a week. On our way home from lunch Tuesday afternoon we received a call from the hospital. They had a surgery get canceled on Wednesday and they needed us to get all the paperwork filled out so that Isabel’s surgery could be bumped up to that spot.
When we got to Isabel’s room there were doctors waiting for us. Each doctor that was going to be involved in the surgery came into our room and explained their part and made sure any questions we had got answered. Also, since it is a teaching hospital there were a few of the doctors asking if Isabel could be a part of their study. I have always believed that as long as the study doesn’t require any extra procedures then I am fine with it. Who knows, maybe the data they learn from Isabel would help save somebodies life or maybe even her life in the future. The last person we talked to was the surgeon. Like every surgeon I have ever talked to, he was quick and to the point. He said that he had 3 different types of procedures he might use. He wouldn’t know exactly which one he will be doing until he can see exactly what her heart looks like. He made sure to explain that one is not better than the others and that he would perform the procedure that works the best for her anatomy.
During the winter months the hospital doesn’t allow little kids in the CICU because of the risk of spreading flue and other winter time viruses. Since Isabel was going into surgery the next day, we talked to our nurse and they worked out a way that we could take Isabel out of the CICU so Addison could spend a few minutes with her sister. They allowed us to get Addison into a private waiting room just outside the CICU where she was able to see and hold her sister for a few minutes. It was wonderful and we were very thankful to the nurses for letting our family be together for a little while.
They took Isabel back around 7:30 the next morning. It was a very scary time. We loved on her for a while before and then watched them take her down the hall and through the surgery doors. It was an emotional time sitting in Isabel’s room empty room and not knowing what could happen.
Isabel is now a week old and is getting ready to have her first major procedure done. The doctor that was going to perform the Heart Catheterization came in and discussed the details of the procedure. They took her back and we waited. It it only took about an hour but it was one of the longest hours of my life.
The procedure was successful. We now know what Isabel’s anatomy looks like. Isabel was born with Pulmonary Atresia (PA), a Ventral Septal Defect (VSD), Major Aorto-Pulmonary Collateral Arteries (MAPCAs) and a Right Aortic Arch (RAA). Holy poop thats a mouth full. Honestly, I had to ask Jen for the terms because she is so much better at remembering the technical stuff. For those of you that my not have been paying attention during “Super Specific Heart Stuff 101”, here is a quick overview of what is going on.
In Isabel’s case this means that she does not have a pulmonary valve and has a very small main pulmonary artery that does not contain any blood flow. The pulmonary artery supplies un-oxygenated blood to the lungs from the right ventricle. She does have both the right and left Pulmonary Arches that are providing some blood to the lungs but, they are being supplemented by the MAPCAs, described below, and not the Pulmonary Artery.
Ventral Septal Defect
Isabel has a hole between the right and left ventricles of her heart. Oxygenated blood is mixing with non-oxygenated blood and then being pumped through the Aorta to the rest of her body. This causes the oxygen level in her blood (~80 %) to be lower than normal (between 95-98 %).
Major Aorto-Pulmonary Collateral Arteries
This is cool and one of the reasons I absolutely love the human body. As Isabel grew her body realized that it was going to need to get blood to her lungs. It wasn’t going to get there through the pulmonary valve since she doesn’t have one, so the body created MAPCAs in order to get the blood where it needed to go. She has many small arteries that move the blood from the Aorta to the Pulmonary Arches and the lungs. These are what kept my daughter alive! Mind Blown…
Right Aortic Arch
Most people have an Aortic Arch that goes up and to the left supplying the blood to the head and arms and then it goes behind the heart and down to supply the legs and other organs like the liver and kidneys. Isabel’s actually goes up and to the right but still supplies the blood to the same parts of the body. There are people that live with a RAA and never know it.
The Next Step
Another good thing we found from the Cath was that they were able stop the Prostaglandin they had started her when we first arrived because it was not the Patent Ductus Arteriosus (PDA) that was keeping her alive like they thought when we arrived. The PDA connects the Pulmonary Artery to the Aorta while the baby is still in utero. Normally after the first few breaths the PDA closes forcing blood to the lungs. Prostaglandin’s keep the PDA open.
Now knowing Isabel’s anatomy, the doctors are able to start planning her surgery. For the next few days we are waiting to hear from the surgeon about the options and when they schedule the surgery.
Isabel’s has had an exciting first 3 days of life including a trip on a private plain. It was going to be a few days before the Heart Catherization because of the New Year holiday and finding time in the schedule. They placed a Nasogastric Intubation (NG) tube and started her on IV nutrition in order to make sure that she was getting everything she needed. She was eating but not as much as the doctors and nurses would like with everything that was going on. We had a few doctors stop by the room to make sure that we understood everything that was going on with Isabel and to give us the opportunity to ask any questions. Jen and I are both the kind of people that like to know everything possible so we always had a few questions.
By the 4th day we started to realize that all we had was what Jen packed in our baby bags expecting to stay maybe 2 nights in Gunnison. The hospital was amazing and gave us a taxi voucher in order to get to Target and buy a few things we needed. It gave us a great opportunity to get out of the hospital for a few hours and walked around Target. Isabel was eating very well and was off IV nutrition by mid afternoon and was able to be off the NG Tube before the new year. We rang in the new year with the amazing nursing staff at and for the first time in days a baby that didn’t have any tubes taped to her face.
We spent the next few days in a holding pattern waiting to find out when they would be able to schedule the Cath. The hospital had different people stopping by our room letting us know what the hospital has for parents and they gave us a weeks worth of Gift Cards for the cafeteria. This is also when I started talking to the financial aid consular. She helped get everything organized with our insurance company so we didn’t have to hear anything from them or the insurance company about money for a while. I know I have said this a few time before but the people we worked with at every level during the process went above and beyond any of our expectations.
On January 2nd we found out that the Cath was scheduled for 8:00 am on the next day. We were happy to know it was scheduled but it also meant she was going to be put under and have a pretty major procedure done.