Sorry for going without a post for so long. This has been a very upsetting week for us. When our Knittybaby was born, he had a heart murmur, which is quite common in newborns. By his two month check up, it was still there so our GP ordered an echocardiogram to check it out. I honestly thought it was just double checking, and it would be fine. However, it is not. Turns out our litle guy has a congenital heart defect called Coarctation of the Aorta. What this means is that his aorta is pinched, which results in a difference in blood pressure in the upper and lower body. Luckily, his is not as severe as many babies as he has no physical symptoms other than the murmur and blood pressure (many babies with very severe versions of this have emergency surgery just days old). However, he will be needing heart surgery sometime before his first birthday. If the aorta is repaired, his prognosis is good although he will need to be under the care of a cardiologist for the rest of his life. If not repaired it will most likely result in heart failure in his 40’s or 50’s and carries a lot of risk throughout his life, so the surgery is very important.
To make things even worse, this may mess up my plans to stay home with the boys. I had planned on not returning to the classroom this fall. We were going to buy private insurance as Hubby works for a very small business and has no benefits, but with this condition it may not be possible. It’s so hard to realize that even with the surgery this will be something he will carry with him his whole life, that as perfect as he seems he has something very wrong…..
Sorry to have such a bummer of a post, but it really helps to talk and write about it. Funny how people cope with things. What have I been doing? Planning what kind of special blanket I will knit for him for the surgery and hospital stay. Something with hearts…it makes me cry just thinking about it but it’s so important to me that he has it when the time for surgery comes.
11 responses to “Difficult week…”
I am sooo sorry to hear that!
I’m so sorry to hear about your little guy. It’s so unfair, isn’t it? Hang in there and I’ll be sending you guys positive thoughts!
Oh, what a tough thing to learn. Please let me know if there’s any way I can help out.
Oh, that’s so hard. BUt the cardiac care here in MN is so very excellent. My husband has had a couple of procedures, and he’s doing very well. Knittybaby will get great care here.
Knittybaby will be in my prayers. It’s funny – as parents you know that you just have to do what has to be done for the benefit of your child. Some people call it a sacrifice…others call it unconditional love.
I will be thinking about Knittybaby and your family. How hard for all of you!!
And really, feel free to vent here. I think we can take it. 🙂
Oh Becca, I’m so sorry to hear this. I know that everything is going to be fine and it’s a really good thing they found it when he is so young. He will never remember having surgery, you will never forget. If you need anything say the word. Amy is right though, there are so many wonderful cardiologists in town and wonderful hospitals that will take great care of him during surgery.
I am so sorry to hear about your week. I will keep Knittybaby in my thoughts.
While doing a search about my own son’s heart condition I came across your site.
My son was born with a coarctation of the aorta and a ventricular septal defect (hole between the two lower chambers of the heart). He had open-heart surgery at thirteen days old in Ann Arbor, MI and recovered beautifully. He is nine months old now and doing quite well. Hopefully he will never need another surgery.
Please know that you’re not alone.
P.S. I’m a knitter too! 🙂
I meant to reply sooner.
Your little one is in my heart!
Just read your post on your baby’s heart defect. My youngest daughter had an Atrial Septal Defect which was found when she was 8 months old, she had open heart surgery at 9 months, she is 5 years old now and is a bundle of energy. After having gone thro this, I think I understand what you are going through. It is an emotional roller coaster, nothing anyone says puts your mind at ease, you google evryday to see if there are other options or treatments. I think I found the waiting the hardest, as I would question had I made the right decision. I had made the right decision, my daughter is doing great, she does’nt even remember anything. Within a week of surgery she was crawling and trying to walk. The pediatric surgeons and nurses where she had her surgery are so compassionate and caring that they made an extremely difficult time a little easier. Something like this makes you appreciate every second with your kids. I’ll be thinking about you and your little one.