I cannot believe how well our little Kiran is doing! He is surprising us.
He was originally going in to the cath lab yesterday to get a better picture of his heart as a road map for the surgeons. However, they couldn’t get an anesthesiology team, so they did a CAT scan to see if they could get the information they needed from that.
What they saw is that the vessels he has taking blood to the lungs are not dependent on the in-utero duct remaining open. They were able to take him off the prostaglandin yesterday, and his oxygen saturation levels have stayed in a good range for him. This looks like it means we will be able to wait for him to grow before he needs his first heart surgery!!!! We did not anticipate such good news, and we are hopeful his saturation stays in a good range!!
Also – he passed his breathing ‘test’ and was able to be extubated yesterday afternoon! It was so good to see his face again and to have him be more alert.
Most exciting of all, both Arif and I got to hold him last night!
We both took a couple turns and snuggled him for a good long while. And, throughout the night, he has been practicing taking a little milk from a bottle. He’s been quite the trooper so far and has figured out how to take in a little bit. We both had the opportunity to hold and feed him – and it was so, so good to hear his precious cries throughout the night.
One piece of more difficult news that is still waiting on a test confirmation: Kiran does have some physical characteristics of a genetic disorder called diGeorge syndrome. This could be the reason for the heart defect, if the genetic test confirms the diagnosis. We may get the results for the test by Monday, but not before and possibly later. We are trying to not focus or worry about this until we have an official diagnosis, but I do know the implications of this syndrome vary greatly from individual to individual.
Overall, good news. Kiran is a fighter and a trooper. We are so blessed with him and so lucky he is ours. If things continue to go well (though we understand we may still experience roller coaster-style ups and downs), we will keep moving forward and doing the work it will take to get him home.