Today marks the 1 year anniversary of Isabel’s unifocalization surgery. I can remember it like it happened last week.
Jen and I walking across the pedestrian bridge to the hospital at 5:45 in the morning.
Not wanting to let Isabel go back with the nurses even though we knew she was in the best hands possible with the nurses and doctors.
Waiting for what seemed like days in the waiting room.
The surgeon finally coming out and telling us that she is doing well in the abstract way that surgeons do.
The smile on Jens face when Isabel opened her eyes.
Cringing when Isabel started to crawl across her crib a few days after surgery.
That day will not be something that I ever forget. I am thankful to everybody that said an extra prayer for Isabel.
So a year later, how is she doing?
Isabel is talking, walking, running, crying, EATING, and drinking! She is very close to no longer needing her feeding tube. She is no longer on oxygen and we have reduced the number of medications she takes throughout the day. Her last doctors appointment went well and we are working with the doctors at Duke to figure out when, and where, her next Cath is going to take place.
If you are interested in learning more about Isabel’s story you can check out the posts about Isabel’s Birth.
Isabel had her first trip to a North Carolina Emergency Room. She woke up around 3 in the morning screaming, which is very unlike her. She had a very fast respiratory rate and was running a fever. After about 2 hours she still wasn’t calmed down. We tested her o2 stats and they were low as well. We have always been told that a fever, high respiratory rate, and low o2 stats mean a trip to the ER.
ER Trips are always interesting for us. This time Jen described the doctor as the “kid” who looked at Isabel. It is kind of funny when we describe Isabel’s condition to an ER doctor. You can see their eyes go blank and they start trying to remember back to med school. This time the doctor started off on our bad side saying that she probably just got upset and it wasn’t anything. I normally trust doctors but we know Isabel and this was not a baby just getting upset. There was something wrong. They took a chest x-ray and tested her for FLU and RSV which both came back negative. They released her saying that her diagnoses was an “UPPER RESPIRATORY INFECTION”.
The next day we took her in to see our pediatrician. After giving Isabel the normal once over they asked if the ER doctor looked in her ears. Jen told them yes and the pediatrician laughed at the incompetence of the ER doctor we saw. Isabel has a double ear infection! They gave her some antibiotics and she should be getting better soon. I am just amazed that the ER doctor didn’t see it. Is it possible that the infection was so minor that it was easy to miss in the ER but when we got to the pediatrician it was that obvious? I am not a doctor. I don’t know, but it really makes me wonder about the service we will get at the ER next time.
The Courage Classic is a bike tour to help raise money for the Children's Hospital Colorado starting July 16th and lasting till the 21st.
The Courage Classic is a bike tour to help raise money for the Children’s Hospital Colorado starting July 16th and lasting till the 21st.
When we were at Isabel’s Cath last week, we had one of the nurses talk to use about the Heart Institute’s team, Cardiac Climbers. They have been riding in the Courage Classic for 11 years and have raised almost $700,000. All the money the team raises goes directly back to the Heart Institute for new equipment, education, research and family assistance. The team consists of cardiac parents, members of the community along with many of the Heart Institute employees including doctors, nurses, anesthesiologists, echo technicians, surgeons and support staff. Each rider dedicates their ride to a cardiac patient.
This year one of the Cardiac Climbers will be riding for Isabel. We need to get them a little more information and then I will post how to support the team and Isabel’s rider. I was amazed at all of the resources that we had available to us while we were in the hospital and I am sure some of those were because of the Cardiac Climbers. Go check out the links above to learn more about the team and the Courage Classic.
Go like the Cardiac Climbers on Facebook to show your support and help spread the word about the Courage Classic.
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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.
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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!