I haven't been very good about keeping everyone up to date on Harper lately and I'm sorry.
We came home two Fridays ago and tried to get the hang of everything. The boys went to stay with Nemo until Thursday afternoon so that I could totally focus on caring for Harper. It was so nice to get everything in order here and get a little rest myself (emphasis on "little"). I've had a lot harder time really recovering from the surgery this time and it felt so good to just sit and rock my baby all day. Harper and I, along with a sweet friend from church who drove us, went to Lubbock last Tuesday for her first cardiologist appointment. She did great on the trip there and back and even through the two hour wait in the Dr.'s office. We got a great report from Dr. Robinson. She has grown, which is our main objective and she now weighs 6 lbs, 6 oz. She had just had an echo cardiogram the previous Friday, so he didn't see a need to redo that so soon. We are supposed to see him twice a week, but because she looked so great, he didn't want to see her back until today. I think that the fewer trips to Lubbock that we have to take, the better it will be for Harper.
I was really encouraged by her appointment. I know that Harper's situation will get worse at some point in time...it is inevitable. But, I was really hoping and praying that we could have at least a couple weeks at home before things got bad. I questioned whether or not we had made the right decision to bring her home, but since she is growing and doing so well, it has really put my mind at ease.
My boys came home Thursday and stayed until Monday. It was SO good to all be home together and I even survived my first day with all three kids by myself. Eli and Landon love Harper, but they pretty much leave her alone most of the time, which is really nice. They will occasionally come by and kiss her forehead or say something like, "I like her, mom." It makes me smile and I tell them that I like her too. And I do...I like her so, so much.
We went back to Dr. Robinson today. Harper has been showing subtle signs that she is struggling a little more: rapid breathing, lower oxygen saturation levels, sweaty skin, and she seems to tire more easily and sleep more. The great news today was that she gained 12 ounces in one week and now weighs 7 pounds, 2 ounces. We could be close to 8 pounds by next week at this rate.
While doing an echo cardiogram, Dr. Robinson mentioned that it seems as though the hole in her heart is getting bigger. This was so discouraging to hear. There is a point at which a hole is so large that it cannot be patched, which would mean we would have to take a completely different route with surgery. This would mean the difference between one surgery that fixes the problem completely and three surgeries that still don't guarantee a good heart at the end. This would be completely devastating to us. It is our prayer that the hole in Harper's heart stays within the size limit of being patchable.
Dr. Robinson also said that he expects her surgery to be within the next 1-2 weeks and no later than 4 weeks from now. The possibility of surgery as soon as next week makes me completely anxious. I try to not worry, to hand Harper's situation over to God, to have more faith...but I feel like I'm failing. I'm terrified and I'm a complete mess.
So that's where we're at right now...just waiting. We have another appointment next Tuesday (unless we feel like we need to bring her in sooner). Eli and Landon went to Nemo's last night, but will hopefully be home Thursday evening. My mom is coming this weekend and I absolutely cannot wait. So here's to enjoying another week home with my family.