Friday, June 8, 2007

Lilly had her follow-up appointment with Dr. Williams, her cardiologist, yesterday. Thankfully no further testing had to be done because it was all done at Palmetto Richland. Of course, he said she definitely needs surgery to repair her VSD. MUSC should call me in a few days to schedule the surgery. Dr. Williams said the wait time is normally 4-6 weeks. He also stressed the importance of keeping her well. (Lilly already has contracted another respiratory infection and is wheezing again.) They will obviously not do surgery if she has any infection. In hopes of keeping her well, we plan to keep her home as much as possible. (Sorry Polly's class, Lilly will not be joining our Sunday School class until after surgery.) We also plan to implement new handwashing and "kissing Lilly" measures with all of us (no more kisses on the face from her sisters and brothers!) As some of you may know, I am pretty vigilant about germs anyway; however, Dr. Macpherson said she gives me permission to "obsess" about keeping her well. Our hope and prayer is that surgery will be scheduled sooner rather that later because it is going to be stressful trying to keep her away from germs. This is made more difficult by the fact that she is in a new country and is being exposed to a whole new set of "bugs" as Dr. Williams said.

Thankfully, Lilly is still a happy baby. She sleeps well during nap time and at night although she is an early riser. Her appetite is great (being on oral steroids helps!), but so far she hasn't gained much weight. She weighs 17 pounds, 10 ounces. She can wear 6-9 month clothing and is 19 months old. Even though she is tiny, she is developing new skills all the time. She can already push herself up to a sitting position and is working on crawling. "Baby Net", SC's Early Intervention Program, will be coming to assess her on Wednesday for any delays she may have. If delays are found, they will provide services in our home at no charge to us.

Thank you again for your prayers and support. Dr. Williams asked me yesterday if I would do this over again knowing what I know now. I was a little shocked at the question, but then I quickly responded, "YES!". If I could have chosen our path, of course I would have chosen for her VSD to be small and not require surgery which is the case for most babies and children with this heart defect. However, this is the path that God has chosen for Lilly and for us so we will do our best to glorify Him through it!


Rebecca and Danny said...

She is just adorable!! So thankful she is here and is yours to care for. I look daily for updates and new pics!!! Grandmama Becca loves her adoptive "grands"! Will keep praying for her and for your evaluation with Baby Net. That is a great service. I learned about them when Jennifer was young with her disabilities through my contact with Pro Parents where I learned Jennifer's rights and our rights as parents to be an advocate for our child with disabilities. I feel lots of what I learned helped in the long run with where Jennifer is a teacher helping others with disabilities!! So know you have someone to talk to when you wonder what to do next.
love, Rebecca

GRACIE said...

Thank goodness she is going to be okay. I am sure the surgery will go fine! Say well!