In my own mind, I guess since she was doing so well and we were discharged so soon, I had taken the need for the first surgery completely off the table. However I was reminded at this appointment that it is always an option if anything changes, specifically if her oxygen levels change. The doctor does not think anything will change, since she has not shown signs of change in her pulmonary stenosis since she was even in utero. However if her blockage changes, her oxygen levels will change and she will need surgery. It is hard to judge her oxygen levels. We have a pulse-oximeter that we use every morning and night to check her oxygen levels. If you have never used one, it is pretty easy to use but hard to read. We put a sensor on her foot that has a red light on it and looks like a bandaid. Then the machine puts out numbers for her oxygen level and her heart beats per minute. The numbers change so we have to sit there and watch it for a good amount of time and then pick an average. She has a set range that she needs to be within or the machine will alarm to tell us she is out of her set range. At home she has been pretty consistently at 85-86%, which I think they want her to be at and stay at. When we have gone to doctors appointments, they come up with different numbers, both lower and higher, which has been concerning the doctors. They trust me when I tell them that she is normally at 85%, so when I don't get 85% at home, I start to get worried, but then I check it again later and it is back to her normal 85-86 (averaged). Please pray that her pulmonary stenosis does not change, at all, and that her oxygen levels remain consistently in the mid 80's.
She is still nursing well. We are starting to get into some sort of routine. She still sleeps pretty much all the time. I have been impressed with her weight gain and thought she was doing great. She is doing well, however the doctors want to see more weight gain. If she has not gained a certain amount by her next appointment, on Monday, they may want to start her on a calorie supplement. I'm not opposed to the calorie supplement, but obviously I prefer that we not add anything to her diet of breast milk. They asked that we start giving her one bottle a day so that if we need to add to her diet, she will already be used to a bottle and we can add it to a bottle of breast milk. Pray that she naturally gains enough weight to please the doctors.
I asked the doctor for a more narrow time frame for surgery because I am a planner and I had been hearing any where from 3 months to 6 months and every doctor we talked to it seemed to change. This doctor will be her doctor from here on out so his opinion is the one that matters. He disclaimed that things can change at any time so nothing is for sure, but if it would help settle my mind, we will be shooting for her to have the Glenn procedure in mid October. This would put her at almost 5 months old. It is helpful for me to have a time frame and to know that we should be able to get through the summer and Micah's birthday. He also explained what will happen pre-surgery. A couple days before her surgery, she will have either an MRI or a heart catheter. Both would be under anesthesia and outpatient but the MRI is noninvasive. Pray for timing and preparation for these upcoming surgeries.
Micah has just started to walk in his cast. He still has another almost 2 weeks in it. I hate this cast. I want it off so bad! He needs a good bath! It really limits what we can do and I feel like he is fussier than normal because he can't do everything he wants to do. I am also afraid that he will start walking with it on and then by the time we get it off he wont be able to walk with it off and it will take another week for him to figure it out again. When he broke his leg he had only been walking for a couple of months, it was still fairly new to him. Pray that he learns to walk again quickly and for no more broken bones! He has also been very cranky lately because he does not have or use enough words, so he gets very frustrated and just cries. Pray that his speech picks up quickly and he is able to communicate his needs and wants with us.
Ben has had an ear infection since we got home from the hospital but in general is doing fine. He is just the best big brother. He loves Maelyn and enjoys holding her and snuggling her. He is also so patient and loving with Micah. They are best friends. I'm not saying sharing isn't hard and they don't have their moments, but there was a moment today where Micah was just being fussy and crying and all of the adults were about to loose it and Ben climbed up to Micah and just kissed him. Thank you God for my sweet sensitive Benjamin. You made him perfect to be big brother to Micah and Mae.
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