Hi everyone,
Well, we had a pretty long, stressful day today. Natalie had her catheter surgery, and we got the results back. Her pressures are quite high, and her ventricle hasn’t grown. However, this could very well be because she hasn’t grown either. She has actually lost weight since we got home from Boston in January.
Initially, the surgeon’s thoughts were that we should think about abandoning the heart repair. This would mean that we either reverse all the work that’s been done on her heart and go with the single ventricle pathway, or we move to a heart transplant. Yeah, we were devastated. The single ventricle pathway carries with it a 70% chance that Natalie will survive to adulthood, and she would probably need a transplant in 10-20 years. We spent about two hours thinking that this was what the future held for Natalie. It was not a fun two hours for Heidi and I.
Then, we spoke with the attending cardiologist, and she had a much better outlook. They had met as a team, and they were in agreement that it’s way too early to give up on her heart as it is. She is so very close to having a fully functioning heart, and they want to give it a chance to develop. They are adjusting medications so that she can eat better. This will cause growth both in her, and in her heart. If she isn’t able to increase her food intake over the next several days, then they will proceed with giving her a feeding tube. That way, we can be sure that she will get enough food in order to help her grow and develop.
We pray that this works, and that she can have a bright future with a normal heart. Only time will tell. We’ll know a lot more in another 2-4 months, so until then, we’ll make sure that she eats plenty.
We want to thank everyone for the prayers and support as we’ve gone through this latest ordeal. We’ll be sure to keep you updated as we move forward.
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