I haven't updated in awhile and I'm sure you're all just dying to know what's been going on over here. We're just so fascinating, I know.
We all survived a variety of colds over the holidays that of course caused My Little Guy to wind up with an ear infection. Helena caught them too, but since she is a fierce warrior baby she handled them fine. She likes to do this thing where I'm looking at her and for whatever reason (lighting, my own paranoia, whatever) I feel like her coloring is off so I rush over and hook her up to her oxygen monitor and it spits out... 91. Ok, sure, yeah, Mommy is crazy. Good then. This exact scenario has happened at least 4 times now.
We were supposed to get the cardiac cath back in December, but Helena was in the thick of a cold and at that point and the nurses and doctors didn't want to risk anything by doing it while she wasn't 100% well. Her pediatrician and I felt that asking for 100% health during cold and flu season was a stretch (he cleared her for the cath saying her lungs were clear and her congestion was all in her head and that even as a cardiac baby she looked better than some of his normal patients with colds), but agreed that unnecessary risk was a bad idea.
The cath was rescheduled and we all hoped that she would be healthy for it this time around.
The issue was that in addition to having her NG tube in, she's also teething so she's pretty much in a constant state of congestion. It's hard to tell if it's from a cold, or the NG, or the teething or what percentage of those three things is causing it. Even though our cardiac nurse told us the cath wasn't urgent, we still wanted to get it over with. And it was going to give them the information they needed to help figure out the timing of her corrective surgery. As a planner, I needed that information.
As it worked out, My Little Guy's ear infection wasn't better after his 10 days of drugs, so the day before Helena's cath I took him into the pediatrician and brought her in for a quick once over. My Little Guy got another round of drugs (and it's sadly looking like he might need a third - poor guy), and Helena got the all clear for the cath. It did seem to make a difference when the cath nurses called that I was able to say that she just saw her pediatrician who said it's more teething and the NG than a cold and they said the cath is on.
So we woke up at 4:45 that morning, after not much sleep and brought her in. It's a horrible experience to say the least, but it's nothing compared to what we'll go through for her corrective surgery. Having to hand someone your baby and watch them walk away, knowing they're going to do things to her that no baby should ever have to have done is heartbreaking. You're literally putting the life of your child in someone else's hands. It's a feeling I wish no one ever had to feel.
Luckily the catheter procedure was only about 2 hours, so the waiting wasn't too bad at all. The doctor came out and said everything went well, she did great, and they got good pictures and video and information. We waited a bit longer while they woke her up and extubated her and brought her back to the recovery room.
When we finally got to see her she was PISSED. She was starving (no food since late the night before per surgery instructions) and uncomfortable and scared. Some snuggles and food and loves and she was out cold. Helena spent most of her time in recovery sleeping, but did great. She did so great in fact that they told us we could go home that evening. When we had scheduled the cath they told us that with the little ones they usually keep them overnight for observation just to be safe, but they felt she was fine and sent us home. I was very happy to not have to spend the night on that horrible hospital couch-bed thing with a constant parade of nurses coming in. I did end up sleeping on our couch since Helena fell asleep in her downstairs bed and I didn't dare move her, but as I told my husband - our couch was significantly more comfortable than the hospital one.
The next day Helena was more back to her usual self. She was still a little fussy, and a little needy but she was more smiley and slept less. By the second day after the procedure she was totally herself again.
Unfortunately she's caught another cold, but she's handling it fine so far. She has a six month checkup this week any way, so she'll see her pediatrician and make sure her lungs are clear and everything but I suspect they are.
We met with her surgeon who once again went over the two surgery options for Helena. Because she not only has TGA, a VSD, and a pulmonary stenosis, but one of her coronary arteries is in a weird place, he feels that one procedure might be safer but won't know for sure until he gets in there and sees everything. That's sort of what he had said before, so that wasn't a surprise. What was interesting is that he told us that even if she has to have the surgery requiring artificial parts (and therefore more surgeries down the line to replace them as she grows), they're hoping that in the next 10 years or so they'll be able to create the parts she needs using stem cells (in all the chaos of her diagnosis we forgot to bank her cord blood, but we did bank My Little Guy's so they might even be able to use that) and then since they'd be biological they wouldn't need to be replaced as they'd grow with her. That sounded super cool.
He also said that because her oxygen levels are doing so well and she is growing, there's no need to rush into surgery. He said let's wait at least another 2-3 months and keep seeing our cardiologist and when her levels start dipping a bit, that's when we'll start thinking about scheduling her corrective surgery. It was a relief knowing that she's doing well, and there's no need to rush anything. The bigger she is the easier the surgery will be, and the easier her recovery will be. He told us that even after this big corrective surgery she should only spend like 2 weeks in the hospital which is amazing considering what they'll have to do to her. Babies heal fast.
So for now we're just doing what we're doing since it seems to be working. She's teething like crazy and putting everything in her mouth which is huge progress in getting her off the NG tube. She's still not taking a bottle, but I did find one that she tolerates in her mouth more than anything else so we've been working on that. I find it amusing that the whole deal with this new bottle is that it's supposed to be for breastfed babies who refuse any other bottles, but Helena has literally never been breastfed and yet this is the bottle she has decided to like.
We've also started playing around with solids, or "goo food" as My Boys call it. She ate half a container of carrots over two meals the other day, so that's huge progress.
I think that's it. The rest of the family is doing well. We appreciate all the care and concern and thoughts and prayers from everyone. We are very lucky to have you all in our lives.