Yesterday we had a busy day which included a check up with Tera's cardiologist and then her six month Early Intervention review. For those of you not familiar with the heart complications that go along with DS, here's an example: when we meet new families with a child with DS, one of the very first questions to go between parents is, "How is their heart?" and we're not referring to their level of compassion. Some type of heart defect is almost inevitable with DS.
On the evening of the day Tera was born, many hours after her diagnosis had been delivered and a subsequent EKG had been done, the nurse asked us if we wanted them to take her to the nursery for a few hours so that we could get some sleep after what had been quite a difficult and emotional day. We decided that it would be probably be good if we could get a little sleep and so they wheeled her off. We had no idea at that time it would be the last time we would have her in my room and without tubes and wires for the next seven days. They got the results of her EKG while she was in the nursery and the neonatologist came to my room to inform us that Tera had been transferred to the NICU as they had discovered she had some heart defects (along with some signs of possibly having contracted strep from me during delivery). Having received her diagnosis was one thing, but then they were telling us that one the most delicate and crucial organs in her tiny little body, was not healthy. I believe they also gave us the details of what was wrong, but that may have been the next morning, I'm don't completely remember anymore. Either way, we were told that she had three holes in her heart, one that was fairly large and could require surgery. Just the thought of my less than one day old tiny baby girl having to have heart surgery made my own heart stop. The next day we were told that she had been given a cardiologist through Children's Memorial (and who she still sees and we really like) that was going to be monitoring her remotely while she was in the NICU. Fortunately, somehow, the biggest and most risky of the holes closed rather quickly and on its own.
So upon discharge we had to make a follow up appointment with the cardiologist and he would let us know what the next steps were. At our first visit he told us she had an ASD and VSD, but that neither required immediate surgery; we could wait and see if they would close on their own. But in order for this happen, she had to grow. He wanted at least a pound a month to help ensure the closure of the holes. For an infant that was able to eat well that might not have been such a challenge. But due to her low tone and all the other things associated with DS, she was a slow eater that would often fall asleep before finishing; so we were constantly checking her weight and worried about her food intake. Most months she was right around a pound and around one year, he saw no more evidence of the ASD. Since then she's been going in for check ups about every six months and while the VSD hasn't closed, it's been progressing the way he wanted. For as worried as we were at the beginning, since then we've pretty much just been able to tell people that yes she had two holes, but that one closed and the other was just being monitored; no medication or surgery. He told us that it would be a slow process and really unless it hadn't closed by the time she was an adult, he would just monitor it.
When Tom took her in for her last appointment he didn't do the ultrasound, just the EKG. This time he did the ultrasound, during which he apparently saw some muscle developing around the hole that he doesn't want to form. He said that it's a risk with letting the hole close on its own and it doesn't mean anything yet, but that he has to watch it more closely. He'll see her again in six months and told me there's nothing he or I can do in the meantime. So then I asked the question of what will happen if the muscle continues to grow; at which point I had to face reality again, because the answer is that he would have go in and close the hole and remove the muscle. I won't say I panicked or cried or worried even. I just let it slowly sink in that the idea of heart surgery had kind of slowly slid from my mind with every good check up she had prior, and now we have to deal with the fact that the possibility of heart surgery is still out there.
I've experienced some stress in the past week or so in trying to get a handle on all of Tera's appointments and then trying to schedule two more procedures. There are many times when it's incredibly overwhelming and I get mad and worried and upset and then I have to suck it up, take care of it and and move on. I still always am cognizant of the fact that her issues could be so much worse. And yet at the same time, it seems like every month or every couple months we're adding a new specialist to the list because yet another problem has surfaced. Yesterday I finally was able to schedule the procedure to see if she has kidney reflux and the procedure to see if she has acid reflux. And of course they couldn't get her in for both on the same day. Then I have to wait until after her next ENT appointment to see how her ears are doing so he can decide if he's going to put another set of tubes in at the same time that the gastrointerologist is going in to do an upper endoscopy to once again test for acid reflux. And for those procedures she'll have to be put under and we'll have to get clearance from her pulmonologist and cardiologist and she'll have to go in for a pre-op exam with her pediatrician. And that's assuming she can stay healthy for that to happen, which given the past 48 hours, is questionable even now.
Plus side? No surgeries yet. Down side? Something is inevitable and I just somehow have to make it all happen.
Tomorrow I'll give the update on what happened during her six month review which is much more positive :)