I'm writing this update from home. This is the standard procedure under normal circumstances, but for a day that had us heading to the hospital at 6:30 am for Lyra's third cardiac catheterization, it's a little strange to be home already.
These caths are considered "routine", but that's used in a very literal sense. Because they do a lot of these things, they are routine to the doctors and nurses, however, they're also like a mini-surgery, with all the various and sundry accoutrements. So for patients, they're not routine in the same sense as getting blood drawn or having an x-ray taken.
Anyway... Lyra did very well on this cath. They saw the things they were hoping to see and got the data they wanted to get. Now we'll wait until the data is reviewed by the surgical team and they'll let us know what the next step will be. It looks like her second stage, the Glenn, is within sight. There was some concern that Lyra has too much blood flow to her lungs, making her heart work harder than it should, and because of that there is an alternative that the doctors may consider, which is the use of some form of medication that would alleviate some of the high flow to the lungs and give Lyra some more time to grow. From what we heard today, that alternative seems unlikely, but it's still out there.
In addition to Lyra's good work on the cath, she also recovered from it very nicely, which is of course the reason I'm home writing this. Yes, for the first time we went to the hospital and returned on the same day. This hasn't happened since... I'm not sure it's ever happened.
Just a quick update regarding Lyra's next procedure. She's scheduled for a catheterization this Thursday. We'll probably get a better idea about the timing for the next surgery after the cath is done. We're guessing at least a week, maybe two after the cath for the surgery, assuming they don't find any reasons to do it sooner.
Lyra is doing very well at home these days. She's not gaining a whole lot of weight though. Her doctor thinks it's mostly due to her activity level and the kind of surgery she had, which means she basically spends most or all of the calories she gets. She's now completely disregarding a bottle, which is unfortunate because that's how we could have supplemented her with additional calories. She'll actually push it away with her hands and then clamp her lips together when you get it near her. However, she's doing pretty good with some solid foods. She likes her sweet potatoes, pears and the oatmeal cereal (at times), but peas didn't go over too well. We're also trying to introduce a cup.
We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home! We're home!
Yesterday was one of our lowest days during this hospitalization. Even though the gut rest had ended and we were allowed to start feeding Lyra, she was a wreck. She was very unhappy and there were quite a few reasons for being that way. For starters she hadn't gotten much sleep at all in the previous 24 hours and was so cranky we couldn't really calm her down enough for her to try and fall asleep. Also, she has a couple of teeth coming in (this of course was an exciting development when it happened a few days ago, but was now probably contributing to her discomfort, and thus not nearly as exciting). On top of all of this was the greenlight by the docs to try and breastfeed her. Well of course that wasn't happening either. She was simply too upset and tired to do it. When we did manage to get some breastmilk into her by a cup or bottle, she invariably gagged it all back up. Maren was especially discouraged by her initial difficulty with the breastfeeding.
Today, as it turned out, was the exact opposite of yesterday, mainly because Maren somehow managed to get her breastfeeding during the night. Sometime around 2am, Lyra managed to get a little bit into her tummy and then promptly fell asleep for a couple hours, woke back up, fed again and slept again until I arrived around 8am. From that time on she was a new baby. Happy and smiling. Even though we had some procedures to get her through, she continued her suprising change of attitude.
First up was the upper GI study, which in typical hospital fashion was supposed to be "later in the morning" but was in fact at about 8:30am, something I think most people would consider "first thing in the morning". Anyhoo.. she's a little trooper because they had to tape her down to a board and spin her around while squirting barium into her. It wasn't as bad as it sounds.. no, wait, yeah it was as a bad as it sounds. Lyra takes it all in stride though, within a few minutes of being done with the study, she was back on my lap and smiling at me.
Later in the day we had to have an echocardiogram done. Lyra generally does pretty well with these until they want good pictures of her aortic arch. This requires her to have her head tilted back so they can use the probe right under her chin. She gets pretty upset when this part is going on and they had wanted to sedate her to get a better view, but with her likely getting another cardiac catheterization later next week, they decided it wasn't all that necessary. I was pretty happy with this decision because even though the sedative they use is mild, if she's tired (which she is), it tends to knock her out for a good while, something we wanted to avoid so Maren could keep working on the feeding.
Overall she was 99% back to normal today, at least that's how I felt. There's a good chance we can go home tomorrow, but Saturday was also mentioned. If Lyra continues to breastfeed tonight and tomorrow as she did today, we should be okay to go home, if not, it'll be interesting to see what reason they give for keeping us longer.