Helena finally kicked that horrible cold and has been putting on weight like a champ. We had a cardiologist appointment on Monday, and he was very happy to see how much weight she's gained. Her cardiac functions are all doing what they're supposed to do. Her doctor did an echo on her and said everything looks great. They were planning on discussing her at the big cardiac meeting last night, but the general thought is that we'll do a cardiac catheter procedure in December to get a better idea of what exactly is going on in her heart. Then we'll hold off on the big corrective surgery until January or February. She's doing really well and putting on weight so they want to wait as long as possible to do the surgery. It's easier for everyone involved if she's bigger and stronger.
We also saw Helena's pediatrician. That appointment basically revolved around her reflux. We felt it had gotten a lot worse, and I wanted to know why and what we can do to fix it. Turns out that in all babies, not just cardiac ones on NG tubes, reflux peaks around 4 months. Which is how old Helena is. They start moving around more, which stirs up the reflux crap in their tummies and it comes up more. Her pediatrician said because she is gaining weight so well (she went from the 5th percentile at her 2 month visit to the 25th at her 4 month - that's 4 lbs she's gained in 2 months!) it's clearly not bothering her THAT much so he's not changing anything. Her job right now is to grow as much as possible, and she's doing that well so we're not rocking the boat. What we're doing is working, so we're just going to keep at it. She also measured in at 25 inches long, which is the 69th percentile for height. This once again allows me to make my "she's tall and skinny, like her mommy" joke. *snorting* Poor baby girl also got her vaccines (cause we ain't crazy) and she qualified for the RSV antibodies shot since she's a cardiac baby. All in all it was four shots, which was rough for everyone. I hate having to restrain her and watch her poor little face when the needles go in her legs, but she needs the shots. Especially the RSV antibodies one. RSV lands perfectly healthy kids in the hospital, it could be even more dangerous for Helena.
We're also still seeing a speech therapist and a physical therapist and are in the process of switching from private therapists at the hospital to Early Intervention therapists. All Helena's doctors said they don't want her going out in the world any more than she absolutely has to during cold and flu season, and the Early Intervention (EI) people will come to the house to see her. It also makes my life a lot easier because I don't have to arrange childcare for her brothers while I take her to therapy twice a week. I can just banish them to the playroom and they'll stay out of our way.
As far as therapy goes, Helena is also doing well. Her speech therapist loves seeing us because Helena is progressing so well so quickly. Her therapist said she's done more in the 6 weeks that we've been going than some kids will do in 6 months. We've gone from complete oral aversion (screaming, coughing, gagging anything we would attempt to put anything in her mouth) to oral defensiveness (allowing us to put a bottle in her mouth, but still being a bit scared and wary of the situation). She's still not taking her feeds by mouth, but she will let me put the bottle in her mouth and she'll play with it and swallow what comes out. She's lost her instinctual sucking, so we're working on ways to get her to eat that either encourage her to figure it out again, or don't involve sucking (I've ordered sippy cups and we might transition to those super early since without the valve in you don't really have to suck on them to get milk out). She's taking 20 mls orally a couple times a day, which sounds like nothing but considering a few weeks ago she wouldn't even open her mouth for the bottle and would scream if I tried to put it in her mouth it's huge progress.
In physical therapy we're working on general strengthening and stretching. After spending a month in the hospital Helena's arms and legs were a bit weaker than they should be. And because of the surgery we couldn't do tummy time for weeks after she came home, so she was behind on that as well.
"What the crap is this nonsense Mommy?"
She tolerates it now, rather than screaming her head off whenever we tried it, which was the case before. We're also working on reaching and grabbing at toys and generally getting her whole body to be more midline. From the reflux, she wants to keep her head turned up and to the right (apparently it's A Thing for all reflux kids), so we're working on fixing that, as well as getting her arms and hands more in the middle. She's just started really reaching for her toys, so we're really encouraging that too. A lot of "normal" development stuff is stuff we need to work on, but everyone who sees her says that she's doing really really well considering everything she's been through.
She's both holding and looking at the toy. This is big in our world.
All in all things here are good. We're going to keep doing what we're doing and hope it stays that way for awhile!