Mary Clare at 3 months!
I can’t believe Mary Clare is over three months now! She weighs 11 lbs and 10 oz!!! She is giggling out loud and smiles all the time and is such a happy baby. She is eating more and more everyday and gaining quickly! I think now her night time feedings are more of a habit, so I’m working on breaking her of those. I know the little turkey can go for longer than 3 or 4 hours because she did it on our drive to Charleston yesterday!! She ate at 4 am, and I planned on feeding her at 8 am just before we left for Charleston, and she refused to eat a drop! I knew I would have to pull over, but she slept the whole way and never fussed! Even when we arrived in Charleston she woke up, was quite content and smiled at one of her cardiologist that I saw in the hall on the way to her clinic office! She didn’t eat again until 10:30 am… that is 6 1/2 hours! So now I KNOW she can do it…the little stinker!
Our visit in Charleston yesterday was for her routine clinic visit and her kidney function study. All looks well with her kidneys!! She doesn’t have kidney reflux, which means that she will not have to take a daily antibiotic!! As far as everything else, it looks okay at this point, but she did have a bit of narrowing of her shunt and aorta simply because she is growing quickly. (Along with the heart reconstruction, her aorta was widened with the first surgery, the Norwood, and the shunt was placed to supply blood to her lungs) The shunt is made of synthetic material and therefore doesn’t grow as her heart grows, which is the reason for her second surgery, the Glenn, where the shunt will be removed and a bypass to her lungs will be created.
Although the shunt and aorta are narrowing, her blood pressures and O2 levels look fine. They will continue to monitor this at each clinic visit with MRIs and echo cardiograms. We may have to move up her cardio catherization and possibly her surgery. Currently the cath is scheduled for November 13, with surgery early December. The catherization will check her heart valves and pressures to be certain she is ready for her second surgery. We are told this surgery will not keep us in the hospital long if all goes well. Possibly as little as about 10 days!! Although I’m not looking forward to another surgery, I know she must have it to live. She is growing so well and looks great. We are so very blessed!
Another note on sweet Mary Clare. Up until this visit, her echos have been rather easy…she slept right through them. They are done in a warm dark navy blue room with the ultrasound machine humming in the background. The rooms are designed to make patients relax. (Mel also found it very relaxing, as he ALWAYS fell asleep when we were there this summer.) I can tell Mary Clare is getting older because it wasn’t quite as easy to keep her still. She babbled and hummed and kicked for a while. Then she laughed at the ultrasound tech, then she wiggled off of her pillow…got ultrasound goo all over herself and then she cried… we even had to re-do a few of the pictures. The ultrasound tech told me we may have to begin mild sedation meds for the next round of echos…which most kids end up having to take.
She was such a trooper though. She endured so much…we left the house at 8, vitals done at 10:30 clinic, blood drawn, echo cardiogram, RSV vaccine #1 of 6, cardiologist visit, catherization for kidney study THEN kidney study, Charleston traffic jam and flooding, terrible rain storm on the LONG way home, home at 5…and a partridge in a pear tree…what a day!
Mary Clare loves sitting up now! If she is awake, she has to be upright looking around. She is so funny because she twists and jerks her head from side to side taking in everything.