Kim and I finally got some sleep last night (Tuesday night) and Kim was able to get some during the day today. Alexandria starting eating (drinking that is) like a champ around 7am, which was a significant change from her eating much less than normal on Tuesday. She had one cardiac episode where her heart was beating fast around 1am, but no serious respiratory episodes today.
Harry and Gretta, Kim’s parents, left for Midland this afternoon after helping us out for a week with the boys. They were incredible and it was great to have them here.
Aden and Ethan Looking in on Alexandria
I spoke with Jessica, one of our Hospice nurses today, who was checking in. She wasn’t in the office until this morning and is going to stop by on Friday. We spoke for a few moments about how well Alexandria is doing, and she agreed with Mary that this is more than likely a part of the “compensation” phase that they have seen in children with Trisomy 18. I asked for a little more information about that, how it works from a physiological aspect. She explained that one of the most common examples they see involves Patent Ductus Arteriosus. Before children are born their Aorta and Pulmonary Arteries are connected by a blood vessel. Shortly after birth, sometimes within a few hours to a few days, this duct closes in children of standard birth weight and genetics. Children with Trisomy 18 sometimes have this duct remain open, which compensates for a lack of blood flow to the lungs and the rest of the body. As she gets older they expect this duct to close, her blood flow to be lowered, and the episodes we saw early on to return. Her episodes early on were caused by her brain forgetting to tell her to breathe, this would be a different cause for low blood oxygenation. Still, it’s an unknown, maybe this will be a problem, maybe it will not.
Her health was so good that we talked about taking her to the service at church this evening… and finally decided to do so. It felt so good to have her there in Church. I felt like she was safe, that for a few moments we could let our guard down. It has been difficult for us to put her down, in fact she’s slept in our arms since she was born. While we were leaving church I was actually comfortable enough to ask a good friend for help and ask her to hold her. I knew she’d be ok for the few moments it took me to put Aden’s coat on him. That was the first non-blood relative non-medical person to touch her since the hospital. 🙂
We’ve read median survival is between 5 and 14.5 days. She’s passed the lower end of that spectrum and is doing terrific. I hope hospice is wrong. I hope the past performance is not a prediction of the future. I am treasuring every moment I have with her, like I said, I can’t put her down. She’s so fragile and so perfect. We are so blessed to have her. It was so normal to take her to church. 🙂
Sorry, the comment form is closed at this time.