Yesterday was our January cardio appointment and it was much better than I feared--she has been cleared to wait another month :) I am always hopeful that she will be well enough to wait and wait and wait until one day she doesn't even need surgery at all :p The realist in me knows that is unlikely but the longer she can wait, the better her chances at a good outcome for her surgery so every month Dr K says we will keep an eye on her and see how she is next month is a good appointment :) Her pressure is up a little and her breathing is heavier and more congested as I had been observing but he thinks it is still okay enough that she will be fine. He was pleased that she gained a pound over the last month--it isn't as much as you'd see in a normal baby but for a heart baby, it is enough :) We are to continue the weekly weight/vitals checks with Dr A and of course continue looking for our List of Things You Must Go Immediately to the Hospital For. *sigh* I hate that we have to have a go-to-hospital list. It is just yet another reminder that her health can change in no time at all and we could have a happy alert baby one day and be in the ICU the next. Positive thoughts tonight, though--in her four short months with us, she has never shown any of the List symptoms :)
Today was her four month well baby visit with Dr A. Baby I continues to be ahead of the game developmentally--she may be tiny but she is energetic and strong! She complained for a few seconds on one of her shots but didn't cry and was cooperative, even drinking the oral vaccine without spitting it at anyone the way she does her heart meds ;)
For the last few months, I have noticed that she had begun to spit up more frequently but didn't think anything of it as it wasn't that much. But it kept increasing and I thought perhaps it is being caused by the meds. One of the listed side effects of her meds is gas and boy, did she ever have it bad. Perhaps the gas was causing a little upset and spittiing. But over time, her body adjusted to the meds and while she still occasionally will have an impressive burp or fart, for the most part she has adjusted and she isn't bothered by gassiness. The spitting up, however, continued to get worse. The last week or so, she soaks her clothing several times a day. Every few days she will have a session of screaming and crying and nothing makes it better. She has begun to arch her back when these crying fits hit. Nursing will calm her down for a few swallows and then she will cry again. She wants to nurse, asks to nurse, but it just isn't soothing enough for her. I was thinking she may be getting reflux but I didn't want it to be that because she has enough to deal with :/ But I talked it over with Dr A today and she is also thinking reflux :( Mild but getting worse--not bad enough for meds yet but if it continues to get worse, we'll need to see if she can take anything with her heart meds.
For now, though, she suggested cereal to try and soothe I's little tummy and help her keep down her breastmilk--perhaps she will grow a bit more if it works. Dr. A said she normally wouldn't recommend it but for I's special circumstances, it would be a good idea to offer it and see if I will take it. I must admit, I have never used cereal before--I have always waited until the kids were at least six months and showing all the other signs of readiness and then I just gave them regular food. Sweet potato was always first, then avocado, then banana. After that, whatever was in season that we were eating. We had planned to do the same for I. But I bought a small box of organic baby cereal and mixed up a spoonful with some breastmilk and we tried some out at dinner. She was not sure about this strange stuff we put in her mouth LOL She smacked her lips/gums, she rolled it around on her tongue, she spit some out and then licked it off her lips, she made faces at us, she fussed at us but then once her face was wiped clean accepted another little bite to blow bubbles with, etc. But amongst the playing, there were a few little swallows and the amount she spit up after she nursed tonight was a lot less. Could be coincidence, could be even a few small swallows of the cereal helped. We will try again tomorrow and see how it goes.