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.
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keeping kaitlyn in our prayers.
ReplyDeletePraying for little Kaitlyn and her family!
ReplyDeleteKaitlyn is so cute. Our family will keep her and your family in our thoughts and prayers.
ReplyDeletePraying for sweet Kaitlyn
ReplyDeleteI know this is a hard time before the surgery. Bennett became somewhat symptomatic as well. Have your doctors talked about adding extra calories to her bottles? That really worked for Bennett when he started to slow down with his weight gain. He quickly (like in 2 weeks) put on close to 3 pounds. Hang in there:)
ReplyDeleteJenee, I know firsthand how difficult the wait can be, and how easily imaginations wander. Kaitlyn did a great job of growing to prepare for her surgery, and you have every reason to believe that she will keep on working hard, doing her best.
ReplyDeleteI will be praying for Kaitlyn and for your family.
Praying for precious Kaitlyn that she will remain strong and continue to gain weight so that she will be healthy when she finally does have the surgery. I'm sure God has awesome plans for her life!!! Blessings...
ReplyDeleteShe will do great. Expecially because she's been so healthy so far. You'll be amazed at how fast she recovers. Probably a 5 to 6 day stay. Go Kaitlyn.
ReplyDeleteJenee~ Everytime I read your blog my heart aches for you but I smile. Kaitlyn is beautiful and she is very blessed to have such a wonderful family. God only gives us what we can handle and he knows that you, your family, and Kaitlyn are very strong. Thank you for keeping such a wonderful blog. You all are in my prayers. Take care.
ReplyDeleteI always read your blog but rarely post. I have been following sweet Kaitlyn since before her birth. She is such a beautiful baby. I am sorry that those signs of heart failure are starting but just remember that this is the course towards getting her heart back to perfect. Hang in there baby Kaitlyn and get bigger and stronger quickly.
ReplyDeleteI know how hard the waiting is. I just wanted that surgery overwith. Max had his 6 weeks ago, at 5 months old. These kiddos are fighters. Like Max, Kaitlyn seems to be healthy otherwise, so I'm sure she'll do fine. We'll definitely keep her in our prayers. {Ironically, after the surgery, Max now takes twice as long to eat - it's suppose to be the other way around!} Max was on lasix and then oxygen too, and is still on oxygen at night. Hang in there!
ReplyDeleteMorgan had the same heart defect and went into heart failure at 4 weeks old. She wouldn't take a bottle and she was losing weight breastfeeding. More work than calories. So we had to ng tube feed her and it was a hard time. But it's something so far behind her now. I want you to know that everything will be fine and Kaitlyn will be a new baby after her heart surgery. It's so nice to have behind you. I remember just wanting to be able to worry about Down syndrome. I couldn't until her heart was fixed. You have many friends out here that have you in our thoughts and prayers!!
ReplyDeleteWe're praying for Kaitlyn and the rest of you. She is so lucky to have such a great mommy and such a loving family to care for her.
ReplyDeleteIt must be so difficult to watch your little girl struggle. I will keep Kaitlyn in my prayers as you anxiously await her surgery.
ReplyDeleteThis is such a hard time period... waiting for surgery. I'll pray she stays strong and that you are not too stressed as you watch over her.
ReplyDelete