Helena is now in therrr-a-pee too. We're seeing both a speech therapist and a physical therapist and she's making good progress with both.
With the speech therapist Helena has gone from holding her tongue in a defensive position (who knew there was such a thing?) to not, and she will actually allow things in her mouth without screaming and/or gagging now. She's licking her hands, her blankeys, her lovey and anything that comes near her mouth. It sounds like nothing, but it's actually a big deal for her. Just two weeks ago none of that was happening. She's actually letting me put her nee-nee (Natarelli for pacifier) in her mouth now. She's still not latching on to it, but she's tolerating it in her mouth and playing with it in there which is big progress for us. Her therapist actually said she's made more progress in two weeks than some babies make in two months, so we feel really good about that. We're still not attempting any bottle feeds, but we feel good that there is progress being made.
We also just started physical therapy (PT) per the suggestion of our speech therapist. Helena's default position is to hold her head to the right looking up and away to the right. We learned that this is very common for reflux babies, as it helps ease the pain of the reflux. The downside is that her neck muscles aren't strengthening as they should be, and she's really tight on the left side. Her speech therapist said if we start PT it will help strengthen the muscles and it can help the reflux and I'm on board to do anything to help that so we signed up. I'm actually super glad we did because it turns out Helena really needs PT. Because of all her time in the hospital, her arms and legs are weak and in weird default positions from being strapped down and hooked up to everything. She despises tummy time with a vengeance, and frankly because of her surgery we weren't able to start it right away so she's behind on her head/neck control. The therapist showed me different ways to do help her work on that, as well as stuff to get her reaching and stretching more and get some more muscle in her body. I had no idea she was so far behind, so I'm so glad we signed up for this. We're already seeing progress there too - she's reaching for toys on her playmat and putting her hands in and near her mouth.
It may seem like nothing, but to us her sleeping like this is major progress
All of this stuff has thrown us for a loop. We were so focused on the heart stuff, we never thought about how the heart stuff would impact her regular development. We never even considered needing all this therapy, but we're glad that it's available and that it's helping her so quickly. It was just very unexpected for us, and I wish someone had warned us that cardiac babies almost always have reflux and/or eating issues and that she might have motor control and strength issues from her time in the hospital.
Otherwise she's doing very well. She's finally beat the cold (it took us like 3+ weeks to beat it, of course it took her a bit longer), she's smiley and she's interacting with people more. The one downside to her getting better control of her hands is that she's becoming too good at pulling out her NG tube, so I've resorted to putting socks on her hands anytime she's in her bed. She wakes up and is so quiet we don't realize she's up and then pulls it right out. We went through two in two days, which resulted in a call to our medical supply company to order more. I need more than 4 a month with this kid! She's also gaining weight well and is over 11.5 lbs now!
The plus side is we get no-tubie photo shoots
So things are good. We're getting her the help she needs, and she's progressing and developing well with it.