We had a great holiday as a family, filled with lots of R&R (we really needed that!) and plenty of Christmas-y fun.
The hope at this checkup was that our son's problematic valve (that was too small to function properly) would have grown in the eight weeks since his last echocardiogram. We had been told that if it did grow, we could probably proceed with the transposition surgery that he needed, and this is what we had been hoping for.
Unfortunately, although the valve did grow a little, it wasn't enough to make much of a difference. Even more concerning is that there is now some muscle tissue accumulating around the base of that valve, narrowing it further. Doctors expressed concern that this valve may close itself off entirely before the pregnancy is over, and began talking about contingency plans and alternate courses of treatment in the likely event that this takes place.
This is definitely not the news we had wanted or hoped for, and it has changed everything in terms of the current treatment and surgical plan for Alaric.
At this point, the plan is as follows: once Alaric is born, he will be taken to a resuscitation room (we will only have a few minutes with him) and there he will be assessed, given any immediate interventions that are needed, and have a procedure where an umbilical IV is inserted. This IV will enable them to administer medications, take blood, etc. In particular, he will be given a medication right away that will help to keep a tube (above his heart; I don't know the scientific name of it) OPEN. This is a tube all babies have in the womb, but it closes up naturally a day or two after they are born as it is no longer needed. Alaric really needs this tube, however, so this medication will keep it from closing off. He will then be set up in the NICU and of course will continue to be monitored, and at some point he will receive another echo. This is super important, as they can't know for sure exactly what the best treatments are until they know what is going on with his heart after birth.
It is assumed that he will need a stint put in the aforementioned tube very soon after birth. If this does indeed happen, he will require a 1-2 week NICU stay after that. Once he is stabilized and all goes well, the idea is that we could possibly take him home at that time, with the support of a palliative care team. Of course he would also be closely monitored at home by a pediatric cardiologist, a pediatrician, and a home health nurse. The doctors would like for him to grow and gain strength as much as possible before we have to return to the children's hospital for the big open heart surgery. This will repair the transposed arteries and close up the hole in his heart. We do not know exactly when this will happen, and doctors wouldn't even venture to guess, because there are so many variables that affect it.
As you can see, there are a great deal of unknowns and unanswered questions that we are still dealing with. We are preparing to temporarily relocate our family twice in the very near future, and there is a more permanent move in store for us very soon as well. Again, so much depends on how things go after Alaric is born.
If you have noticed my relative absence from social media lately, I have just needed time to process, prepare, and spend time with my family. While I am keeping myself in a positive state of mind as much as possible, there are also times of great anxiety (as I'm sure anyone would feel in going through a situation like this).
Shop announcement: well, it's more of an update, but anyway! I am adding new destash items every week. With all of the moving we have coming up, I'm definitely cutting down on the amount of crafty stuff I have on-hand. It's also helping with all of the extra expenses that have been coming up as a result of this situation. I will continue to add items to the shop until I put it on vacation (which will take place in mid- to late February).
Once the shop goes on vacation at that time, I cannot say what will happen from there. Obviously the focus will be on supporting our son and caring for the rest of our family for the foreseeable future. I would like to take a moment to thank you all for supporting my Etsy shop since I opened it just over a year ago. It has been a truly fun journey, and I'm so thankful for this wonderful community! (Shop link is HERE if you would like to see what is currently available).
Thank you all so much for your support, and we truly appreciate the healing thoughts, prayers, energies, vibes, whatever works for you.... we will gladly take it! I will continue to update this site as we get closer to the end of the pregnancy. Alaric will most likely be born in early March.
We hope this finds you all well, and are wishing you a wonderful 2019!