A cord-free week at home

We just returned from a beautiful evening walk; it was such a gorgeous day today. Sophia wore her little snowsuit and fell asleep in her stroller. Sophia is just like Mukwa; when she sees you gathering things that mean she is going outside (her coat), she gets all excited.

We had a good week; Sophia seems to be recovering well from surgery. I was home from work with her all week, and we had fun spending lots of time together. John was able to get the bathroom done too, so now it is child-safe and brightly colored.

The home health nurse came on Monday, and Sophia’s vitals were good. (She also got her second dose of her $1500 antibiotic to prevent against RSV). Sophia’s gaining weight really well now that her heart is fixed, so we’ll have to continue to monitor that. Her pediatrician saw her on Friday, and he also thought she looked good.

As it turns out, the surgeons also closed Sophia’s patent foramen ovale (PFO), a specific type of ASD. It is a normal opening in all fetuses, but in most people it closes naturally. (It’s failure to close is often asymptomatic and exists in a large percentage of stroke patients). This is a different opening than the patent ductus arteriosus, which they kept open with a Prostaglandin IV intentionally after Sophia was born, to help with the coarctation of her aorta pre-surgery.

On Wednesday night, Sophia went to her first book signing at a cute little neighborhood bookstore (our wedding photographer was in town signing his new book). She slept great through a nice dinner, but about two minutes into Tom’s presentation, she started wailing. The store wasn’t big enough for us to get far enough away that we wouldn’t bother the other patrons, so we spent most of the time walking around outside. I think her heart surgery improved her lung capacity, as she has developed an extremely loud cry.

Because her reflux has been so good, I worked on oral feeding some this week. She still gags after awhile, but she is willing to try a little. She actually took 5 ccs from a bottle (after two months with just tube feeding)! She didn’t like her first taste of applesauce, but by the second time, she liked it okay until she coughed. I don’t want to push her as the coughing/gagging can hurt her incision, but if she is ready to work on this, we want to be sure to do that, too. Our speech therapist from the school district comes next week to help us with her feeding.

We are also working on “supported sitting” to help her gain the strength to sit by herself. As is typical of children with Down Syndrome, she has shorter arms, so needs extra support to balance while learning to sit. One of her new favorite things to do is to hold toys and faces with both hands at once, which is a great step for her. She also loves to take our glasses off and smile at us while she hides them behind her back.

Early Sunday morning, Sophia’s cough returned and later on in the day, her projectile vomiting as well. We are really hoping this is just a fluke as we had two good weeks without them, but time will tell. (I can’t explain how heart surgery would have resolved those problems and can’t explain why they would return, either. Hopefully, a doc will have some answers). It is really sad because it hurts her incision so bad to cough that she tries not to and then cries (which hurts it even more). Luckily, Grandma is a good sport as she got both the wailing and the projectile vomit this afternoon when she stayed with Sophia.

PS to our snuzzle-friend Simon, if you want more captions for the pictures, Sophia’s Papa says you can submit ideas on the contact page, and he’ll add them. Sometimes he runs out of ideas…