Carolena is officially 4 weeks old as of Wednesday although technically she is not 1 month old until tomorrow. I have always been a little confused with how this happens...the actual number date does not match up to the number of days. Please do not try and explain the time phenomenon to me, I do in fact understand how it works it just still gets me how it all works out.
Anyway, the little miss has been home over 3 weeks now. So awesome. And soooo very tiring. Kevin and I get to deal with all the normal infant behavior with the added bonus of trying to decipher Carolena's every move. Is her tummy hurting because she has gas like all infants or is she experiencing problems because of her malrotation? Is she screaming because she is cranky like all infants or is she not feeling well because her heart is not working efficiently?
I have a hard enough time with the normal infant things without adding on constant worry about Carolena's fragile health balance. Her health could literally turn on a dime and we need to be ready to jump. Immediately pack up, jump in the car, call the hospital, med transport Carolena to St. Pete. No passing go, no collecting $200.
Tuesday we were in St. Pete with the cardio doctor for her visit. Carolena is still plugging right along. No symptoms of heart issues at the moment so we continue with the waiting plan. However, the cardio doctor did say he is okay with Carolena getting surgery to fix her malrotation sooner rather than later. This is based on her cardiac condition being stable right now and if the stomach surgery can be done now than it is one less thing to worry about once we start in on doing the heart surgeries. So, it looks like we will be having surgery in the next month or two. While I am completely freaked out about her surgery, especially because her heart is still unrepaired, I know that as long as all comes out well then there will be one less thing for us to be so worried about. Doing the surgery will drastically reduce the risk of her bowel twisting and her possibly dying for it. However, she could have serious issues under anesthesia because of her heart. Oh joy. Good news from cardio doctor is that we do not have to see him again for 2 weeks. I will take what we can get.
The best news we received from this week was from Carolena's appointment with her pediatrician yesterday. And just in case you missed it, we have seen at least one doctor, sometimes two or three each week since we have been home. I am terrified of how I will be able to do all this when I go back to work, which at this point is not an option. I have to go back to work. So, her pedi visit went well yesterday. Hurray! She gained 7 ounces in one week. She officially weighed 7lbs, 15oz. Awesome. Still not quite a return to birth weight but very, very close. Her pedi was very pleased with her progress and does not have us returning for 3 weeks. Holy cow, I could so get used to having a week with no doctor's appointments.
Today I found out a little more about Carolena's hearing. Because she was admitted to the CVICU right after birth she automatically gets screened for everything...vision, hearing, etc. Her vision was just peachy, her hearing not so much. Of course all the docs said there could be many, many reasons none of which is actual hearing loss. Had her follow-up appointment today and the doctor is concerned because her testing so far is showing congenital nerve based mild hearing loss. If confirmed she will more than likely need a hearing aid to help her get to 100% hearing to prevent any development delays with speech, etc. Oh goody. One more doctor, one more round of visits. Just what we need.
So. We go one step forward, one step back. Such is the life of a child with complex severe congenital heart disease. BUT, Carolena is still at home. And all is good with our world.