She did have 1 stool today with NO blood! Thank God! Claire has had a few bradys - seems like every time I try to burp her, she has one! The doctor said for Claire to go home, she must be stable on whatever formula/milk she is eating.
I met with the cardiologist that did the echo of Claire's heart before she was born. We really like him! He said the plan for Claire's heart surgery is to do it around 4 to 6 months of age. So basically she would be having her surgery in about 2 to 4 months if everything goes according to plan. If she has a tet spell in that time period, she would have to be admitted to Duke and do the surgery then. I learned what to expect with a tet spell, when to expect them, and what to do if she has one. It's very scary. I hope and pray she never has a tet spell.
They will do a repeat echo of her heart before she goes home and then we will have to bring Claire back in about 2-3 weeks of leaving Duke. The after that, Claire will need to see them (cardiologists) again 3-4 weeks after that, then monthly until the heart surgery. The recovery for the open heart surgery is usually 7-14 days. Claire will have to see a cardiologist at least once a year for the rest of her life.
I asked the doctor if he thought Claire's liver cyst would affect the heart surgery. He used the analogy of a "really low speed bump." Like if you were driving along and saw a really low speed bump in the road, you wouldn't really be worried about it. You might slow down just a bit, but it wouldn't change your path or speed very much. That's kind of how he tried to explain the cyst and heart surgery. They would know it's there and it would be "a twist" to the normal TOF surgery, but it shouldn't affect anything.
Claire ate well today. She is getting about 35 mL of EleCare and sucks it down most of the time.
The physical therapist came by again today to work with Claire's extension and flexion. She didn't quite know that Claire had a humongous cyst in her belly until today. She was like, "oh, no wonder she is always tense!" She said she's probably so uncomfortable - that's why she's always so tight with her legs and arms. I would be too!
Oh, and we saw Eliza's mom today and she is up to 3 pounds!!!! Yay Eliza!!!! We are so happy for her!
The Scott Family
|2 months old|