Father, Husband, Tech Guy
Here are some pictures from the dive to Denver and today’s Catheterization. Everything went well, it was just a long and stressful day. Enjoy the pictures!
Here are some pictures from the dive to Denver and today’s Catheterization. There probably will not be another long post until we are back in Crested Butte. Driving home tomorrow after a trip to the Zoo! Everything went well today, it was just a long and stressful day. Enjoy!
Today’s trip to Denver was uneventful which is always the goal. We got out of the house on time and made it to the hospital early enough to each lunch before Isabel’s G-Tube checkup.
Today’s trip to Denver was uneventful which is always the goal. We got out of the house on time and made it to the hospital early enough to each lunch before Isabel’s G-Tube checkup. It went well. Tomorrow is going to be the stressful day of this trip but hopefully there will be good news by the end.
I think I have been living in a small town for too long. We went out to eat at a chain restaurant for dinner and they had UFC or something like that on every TV. Now, don’t get me wrong I think it is fun to watch but my 3 year old daughter doesn’t need to watch that kind of stuff. It would be one thing if we were there late or even sitting in the bar but we sat down to eat at 6:30 at a table in the middle of the restaurant. I never complained to our waitress but looking back I wish I would have.
Am I out of line to think this is a little ridiculous?
We have been going to Denver almost monthly since Isabel was released form the hospital at the end of January. I think I could make the 5 hour drive blindfolded at this point.
It has been great being able to describe how I was feeling and what we were going through with Isabel’s birth. I also know it has been a little confusing since everything happened a few months ago but I am just now writing about them. To make things even more confusing for everybody today’s post is about something that is happening in the future.
Tomorrow morning we are leaving Crested Butte heading to Denver for a few doctors appointments for Isabel. We have been going to Denver almost monthly since Isabel was released form the hospital at the end of January. I think I could make the 5 hour drive blindfolded at this point. Denver is about 20 degrees warmer than it has been in Crested Butte so I am looking forward to taking a pair of shorts with me. Isabel and Addison do extremely well in the car and I am very thankful for that.
Tomorrow afternoon Isabel will have a checkup on her G-Tube and then Friday she will have her second Catheterization. This Cath. will let the doctors know how much her arteries have grown. This is important because it will give us a better idea on when the next surgery can be scheduled. The first surgery Isabel had back in January was to make sure there was blood going through the pulmonary arteries giving them the opportunity to grow. The next surgery will hopefully be the one that fixes her heart by closing the VSD and placing a new valve or conduit connecting the pulmonary artery to her heart.
They are planing on her staying the night in the hospital after the Catheterization. They also asked us to stay in town for at least 24 hours after the procedure to be closer to a hospital just incase something was to pop up. As long as everything goes well, we are planing on spending a few hours at the Zoo with both the girls while we are in Denver. Hopefully we will have some fun pictures to share next week.
If you missed any of the previous posts about Isabel’s birth you can check them out here:
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.
If you missed any of the previous posts about Isabel’s birth you can check them out here:
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.
