I postponed updating due to health reasons with my pregnancy. Never could I have imagined the roller coaster life would put me on with baby no 3.
A few weeks after my postponement, I had the routine ultrasound around 20 weeks of pregnancy. The ultrasound came back a little off. Future ultrasounds showed that our little baby had a heart defect. Hypoplastic Left Heart Syndrome (HLHS) was the official diagnosis of the defect. It is rare, but I'm finding it is not as rare as one would think. This condition is more often than not fatal if not caught during pregnancy.
HLHS is a condition where the left ventricle quits forming and becomes a small mass of scar tissue that doesn't work. In a normal heart, the left side pumps bood through the body, and the right side pumps the oxygenated blood to the heart from the lungs. There are a set of three surgeries done to help kind of correct this condition. I say help because there is no way to completely regrow the left ventricle. Some people live a full life with this condition, some don't make it, and some end up with a heart transplant.
Bubbles was born and had his first surgery at a week old. Complications kept us in the hospital until the second surgery at 4 months old. We ended up on a feeding tube feeding into the J (first part of intestines). It took over a year to be able to feed into his stomach. After five and a half months, we were able to come home. Most of the time, I stayed at a McDonald House near the Children's Hospital as our home was a 2 hour drive on a good day. My husband stayed home with the 4 and 6 year old, going to work and keeping them in school.
Upon coming home, we were delayed in the milestones. This resulted in weekly physical therapy and occupation therapy appointments.
Almost a year after discharge, we were facing another open heart surgery to fix his tricupsid valve (the valve between the upper and lower parts of the right side of the heart), which was severely leaking. That ended up being another 8 day stay at the hospital. Which it is not completely fixed and I see another surgery for that in the future outside of the third surgery for his defect.
Bubbles is almost 2 now and is stable, which is all I can ask for. We are still on the feeding tube due to an oral aversion with the plans to start therapy for that soon. He still has weekly appointments with pt and ot. He takes up a lot of my time, and I'm working on getting some outside help for his condition because, honestly, I'm getting really worn out.
I do plan to return to this story and others when I can, but right now, it is just not a priority. Thank you for being understanding.
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