A downhill turn

A continuation of that ridiculously long post... starting now from when things have taken a change for the worse.

Not the greatest
Posted Aug 19, 2008 4:40pm
Lily had her appt today at the cardiologist. There was good, and there was not so good. She's gained another pound this month, she's about 14lbs 10oz or so, so we're knocking on 15 lbs door. There is no fluid buildup around her heart or in her lungs, so we get to discontinue the Lasix and go back to the regular concentration of formula - no more extra strength! Both of these things should really help her constipation issues and hopefully soon we have a baby drinking normal formula (well, Gentlease) and pooping normally! Hurray for that!
Her surgical repair looks good. There is a tiny, almost immeasurable residual VSD from where her septal wall hasn't quite grown over the patch completely - this is normal and should close with time. The amount of backflow caused by it is insignificant.
Her left atrium is still enlarged more than Dr. Simon was hoping for. This is causing stress on her mitral valve because it can't quite close like it should due to being stretched and there is a small amount of leakage resulting from that. Her left atrium functioning number has gone up a bit more, though, so that is good! It's shrinking slower than we had hoped but it still seems to be improving.

The biggest concern for now is her right ventricle. The wall was thickened up due to all that shunting of blood back into it from the VSD and I guess it's only gotten worse. The muscles have spread up into the ventricle, causing hypertrophy and increased strain. I did some research and this is very similar to one of the other symptoms of Tetralogy of Fallot. Lillian is missing the pulmonary stenosis (at least for now!) and the misplaced aorta that would complete that diagnosis. Dr. Simon said that a normal pressure gradient in the RV is about 5 and Lily's is elevated to 16. This has the potential to develop into a blockage type problem, essentially dividing the right ventricle into two chambers, and those numbers get really serious when they reach around 40 or so. There is no medication we could have given or can give to actually shrink the muscles back down - either it's going to happen or it's not. Dr. Simon was dissapointed, but seemed hopeful that this will correct itself. But that's what the VSD was supposed to do, too. If it does develop into something serious, the only fix is another surgery. Luck is apparently not on our side.

I left pretty bummed. I don't know if I can handle the prospect of another surgery. I feel like this is a test... of my faith, or strength, or whatever. I'm trying really hard not to be pessimistic, but I had a bad feeling about today going into it. I couldn't sleep at all - I got about 4 hours of sleep last night. I feel like we're playing with fire here, like my time is limited and the days are flying by so quickly, marching toward a ticking bomb. What if this just wasn't meant to be? All I want is my daughter to be healthy. I never thought it would be this difficult.

Doctor run - Sep 7, 2008 6:33pm
I ended up running Lillian to the clinic here on Saturday morning, because she hadn't pooped in a week! She was miserable... and of course pretty much all they told me was "well, yeah, she's constipated." Well, duh. This has been such an ongoing problem. It's hard to say what to do, she did fine on the Nutramigen while we were concentrating her formula and she was still on the Lasix. Everyone kind of expected her to do well back on the Gentlease once we stopped concentrating it and took her off the Lasix, but that hasn't been the case. All we could see was a nurse practitioner who we've never met, so I had to explain the whole story and why we switched formulas in the first place. Everyone pretty much agrees that Nutramigen is designed for babies who have a true allergy to the milk and soy proteins, and Lillian doesn't... she doesn't have hives or GI bleeds or anything, it was just much easier to digest and much worth the expense to ease the amount of strain on her before her repair. And since it is so expensive and she doesn't have an allergy, per say, insurance most likely won't cover it. I explained that caro syrup, prunes, apple juice, fruit... nothing is working. Yeah, I could give her caro syrup in every single bottle and prunes three times a day, but that's not good for her.

So before we go back to the Nutramigen, we're going to try 1/2 tsp, a very low dose, of Miralax. We can give it to her in the evening, mixed in 4 ounces of apple juice or something she'll drink. If that doesn't work, we can try upping it to a tsp, and if that doesn't work, I'm fine with going back to the Nutramigen - I've spent a gazillion dollars on this baby already, what's another $200 a month ya know? We'll see I suppose.

She did get weighed, but it was quickly and with clothes on, so I'm trying not to read too much into it. She was 15 pounds 12 ounces, up from 15 pounds 6 ounces on the 22nd of August, but that was with clothes on too. She was 14 pounds 12 ounces naked on August 19th. At first glance, it appears her weight gain has slowed down somewhat, but like I said, it wasn't accurate so I'm trying not to panic. She should be gaining an ounce a day or close to it, and it's been 18 days since the 19th, so she should be about 15 pounds 14 ounces naked, and obviously she's not. She's probably about 15 pounds, 6 to 8 ounces naked. Something like that. But you know us "heart moms," we worry about our "heart babies" over everything... and we have stopped concentrating her formula so that could be leading to the slow down in weight gain, as well.

I really want to clear her system out of whatever is backed up in it. She's been straining so hard to poop that she's been spitting up and getting to where it seems very difficult to breathe. She's been taking huge breaths and they are loud and it's just too much strain for her - it's not right. I get so worried when she gets like that, and I've been noticing it to a lesser degree when she gets really mad or really overly excited as well. Of course I freak out, but she doesn't turn blue and before I totally panic I want to see what this Miralax does and hopefully it eases everything up for her. She's not breaking out in cold sweats or turning blue at all, not that I can see... hopefully it's not related to her heart.

It's hard to sit around knowing that there's something not quite right still, and that it could be getting worse. The waiting game sucks. She's such a personality - she's generally very happy and loves her big brother, when he talks to her or sings to her she lights up. She's not a laugher, but she's definitely learned to squeal and uses this skill almost all day, to where my ears hurt. She loves her swing and bouncy seat, but she's not a fan of the floor and really hasn't made any progress in the learning to sit or crawling departments. Still no teeth, either! I can't believe she is nearing 8 months old.

We are supposed to go back to our regular doctor for a follow up on this Miralax stuff in a week or two, I will update again, then.