So, here’s the recap/rundown of where we are now, at the 2 month mark:
1). Cardiologist says Jade will have to have surgery to correct both defects in the heart – most likely this fall.
2). Jade still has thrush, which, despite Diflucan, GSE and my own dietary restrictions, is back all over her tongue, but at least no where else in the mouth or nasal passages. Unfortunately this isn’t likely to change until after she has her surgery and her heart is working more efficiently.
3). She’s now on Zantac, which has greatly improved her eating. She still has issues from the thrush, specifically pain in the mouth and/or throat causing fussing during eating, but at least there’s no more arching back and actually screaming during feeding and during the night, which is an awesome change.
4). She’s up to 9 lbs, 15.5 oz, which is just 1/2 an oz shy of 10 lbs. This is a gain of almost 6 oz in almost 2 weeks, which is not the greatest, but MUCH improved over how she has been gaining. Gotta attribute that to Zantac, since that’s the only thing that has changed in that time.
We have a cardiologist visit Tuesday, to weigh her and test her pulse-ox reading, and hopefully I can ask some questions about what lies ahead.
Specifically, whether or not she’s a candidate to have BOTH defects fixed via a catheter. I know the PS (Pulmonary Stenosis) is usually repaired via catheter, very much like a balloon angioplasty. The big question is the VSD (Ventricular Septum Defect) and how it will be repaired.
Usually, children who have surgery for VSD, usually have larger holes, and those are repaired via open heart surgery. However Jade’s is smaller, so I’m hoping they can use a catheterization procedure I’ve read about that basically uses a catheter, inserted into a vein in her groin, to insert a little plug called an “occluder” into the chamber of her heart, which then plugs the hole. Eventually tissue grows over the occluder, creating a permanent repair. I’m prepared, however, for the possibility of open heart surgery and have even had some mom’s of “heart babies” I know share their experiences and send me some photos of the post-op recovery, just so it’s not a shock to me if it has to happen that way.
At this point it seems likely she’ll have her surgery done at UVA’s Children’s Hospital, since they’re the closest and they have a Heart Center just for children.
From what I understand the stay is over a week for Open Heart and a few days for a Catheterization procedure. Hopefully I can verify most of this with Dr. Albrecht when we see him Tuesday.
Of course no surgical procedure is without inherent risks, but no matter how scary this all may sound, I remind myself that these defects are actually fairly common and these procedures are done all the time with a very, very high rate of success – especially in relatively minor cases like hers. Like Dr. Albrecht told us, she’s very unlikely to suddenly develop life-threatning issues, and will most likely be 100% fine after the surgery with no lasting health issues or implications related to the repair. So that’s definitely a good thing to keep in mind, despite my occassional Mommy freak-out moments.
Another thing that is good to remember is that it’s actually a good thing she’ll be having the surgery sooner, rather than later. If she’s going to require surgery, better now when it’s less likely to be traumatic for her or even remembered. It also saves months or even years of checkups and wondering, watching and waiting for problems to arise. She should be fully and completely recovered, and 100% healthy by her 1st birthday.
I think the biggest lesson I’ve been learning through all this is that our children are not really “ours” they’re God’s. They belong to him and we are only entrusted them. While Jade is most likely going to be absolutely fine, I have to remember that none of us is promised to live to 90, or even to make it to tomorrow, and that to sit and worry and stew and fret over things out of our control, not only doesn’t accomplish anything, but wastes the time we have been given to love and care and enjoy one another her on earth – whether that be a few months, or many, many years. I know that sounds a little morbid, but actually it’s a fairly life-affirming thing, for me at least.
For those that want to know what to pray for Jade, our biggest requests are that:
1) She’ll continue to gain weight so she’s an acceptable surgical candidate, and won’t need surgery any sooner than this fall.
2)That they’ll be able to use catheterization procedures for both repairs, which would reduce her risk, her stay in the hospital and be minimally invasive, resulting a shorter recovery time.
3) That we’ll begin to really be able to make some headway with the thrush. It’s not likely, but it would go SO far in making all of this bearable, and helping her to gain weight even better.
and, more than anything…
4) That we’d just trust God, and know that, whatever happens, she’s in His hands, and to just make the most of every moment and just take it a day at a time instead of getting consumed with all the “what ifs” of the future.