What was supposed to be a short update :)

Susannah had a cardiologist checkup this week and four weeks ago. The one four weeks ago was fine, no noticeable change on the ECHO. Her heart rate was 90's for the EKG and then 120's for her Echo. She slept through the echo which she had done so far. She has a tiny ASD and a tiny PDA which he's not concerned about right now. He said her weight gain wasn't as well as they'd like so come back in four weeks which brings us to last week.
The EKG was fine, there is some dropping in and out of the higher heart rate from the WPW syndrome, but her "escape" rhythm is usually in the 80-90's which is "good" for heart block, so he's fine with that. The Echo went all right. She cried through a lot of it this time, which was the first time for that. I knew it would come sooner or later, but was hoping for later! :) She has to be still and is a little restrained, which she doesn't like. He still said her weight gain wasn't as much as they would like, which to me is "Same song, FIFTH verse a little bit louder and a little bit worse!" Every doctor I've ever had for all the kids has been worried about their weight gain. In Susannah's case it could be due to her heart "exercising" too much and thus burning too many calories causing slow weight gain. The pediatrician has been pleased with her weight gain thus far. Their scales differ and I've only been keeping track of the pediatricians weights, so I need to get the Cardiologists weights and compare them. That's beside the point. Susannah has been struggling a little with taking her bottles where she will suck hard for a few sucks and then push it out and breathe, so we were a little concerned and mentioned it to him because he always asks about that. He asked if she was sweating while doing this and she isn't, so he didn't think it was because she was working too hard. I think based on our concern and her "poor" weight gain (I left a little confused), he wanted to start her on a diuretic. I've been carrying the weight charts of the other kids in my diaper bag in case I needed to plead my case, so I offered to show them to him, so he would believe me that they've all been in the low percentile. I'm very hesitant to start her on medication when it's not obvious in any way that her heart is struggling, and I'm not convinced the "poor" weight gain is not genetic. From what I see on the growth curve that he shows me she looks perfectly normal (for my children) and is gaining at a fairly consistent rate. He had mentioned increasing caloric intake before, so I asked him about that and he wrote me a prescription for Human  Milk fortifier and gave me a sheet on how to increase formula calories. We're supposed to go back in four weeks for a weight check. I looked into the Human milk fortifier, and it's rather expensive, so I don't think I'll be getting that since I'm not convinced she needs it. I might do the formula increase, but she only gets maybe 2-4 ounces a day of formula, so I'm not sure it'll matter all that much. Anyways, prayers would be greatly appreciated for wisdom on how much to push back with the weight thing. I don't want to do anything that would cause her heart harm, but at the same time I don't want to do something that's not necessary just because my kids have a lower weight gain than most. The rest of the visit was fine. The ASD and PDA are still there (he's hoping they'll eventually close on their own). The only new thing was that one of the valves has mild to moderate leaking. It's had a little bit of leaking before that he's mentioned, but he's never called it mild to moderate. I'm guessing it would be the valve that is with her right ventricle that is functioning as the left ventricle (because it's all mixed up) because of the higher pressure. He told us that at the very end and I was a little frustrated and confused by that point that I didn't ask questions.
Since that visit, Leigh has found that when she has a room temperature bottle (or warm) she doesn't do the breathing funny thing like she was when she eats. So now we're thinking maybe she doesn't take it as fast and easy because it's too cold! Will wait a few more days before we decide for sure! :)
She's growing fast and is a really good baby! She's such a sweetheart. She is rolling over now, smiling at all her siblings, "talking", almost giggling, sucks her thumb to sleep, sleeping through the night (which none of the others did until they were about a year old), and very interested in the world around her!

 Three months old

 

 

All the munchkins together