Kaitlyn has a Complete AVSD. In a nutshell she has 2 holes in the septum of her heart and one large leaking common valve. Basically the oxygenated and unoxygenated blood all flow together. As complicated and serious as this is, it is the most common congenital heart defect in children with Down syndrome. She will require open heart surgery in the near future. Hopefully between 4-6 months of age.
We were told we would start to see symptoms of her heart defect, which unfortunately is the start of heart failure, between 8-10 weeks of age. Kaitlyn is 10 weeks old and her symptoms are here. About a week ago she started sleeping ALL the time, and rarely woke up wanting to eat. When she eats she gets tired quickly and stops. Its been a challenge. I've known since I was 27 weeks pregnant that she had this heart defect. I prepared myself, or so I thought, but honestly this is horrible to watch. She lost weight the last 2 weigh-ins at the doctor's office. Thank goodness she packed on the pounds the first 2 months. She's on two medications to help her heart, digoxin and lasix. Last week they increased her lasix and that has seemed to help some. We also started increasing the calories in each bottle to help her maintain her weight and hopefully gain again. I am anxious for her surgery. Hopefully she can still get bigger and stronger beforehand. The success rate is very high for this surgery! I've read many stories about kiddos with this heart defect and they instantly become stronger after the surgery. Please pray for Kaitlyn. She is a strong little girl with a bumpy road ahead. God has a special plan for this beautiful little girl.