Today was our second echocardiogram. A little shy of 8 weeks after the first..
I started the day redoing the Gestational Diabetes test, since the OB office was so busy during my appointment on Friday they forgot to draw my blood after an hour and by the time I was taken back, it was way too late. Thankfully, Mark was with me this time. The Sun-Dex was just as gnarly as I had remembered though (if anything could put someone in a foul mood, it would be that stuff). I was so relieved to have it over with, I was practically walking on air leaving the office.
Then we went the children's hospital for the follow-up fetal echocardiogram. We had two technicians - one was recently brought in and she was training with another more senior tech to learn the hospital's protocol. It was amusing listening to them talk about the different angles of the heart they were getting, "oh that's gorgeous," "that's just beautiful." Thankfully, Clementine was cooperating so they could get the needed captures, despite having tucked herself into a far corner of my insides. The senior tech was saying how she had all this space to hang out in and there she was wedged away hiding. The newer tech was like, "oh my goodness, I feel something against my hand, I think it's her shoulder!"
When we went to sit with the pediatric cardiologist, who we had met previously, she immediately said how wonderful it was to see us, and called Clementine a "miracle baby." She went on to say that we were all going to forget the first conversation we had, and start completely over. The mood was lighter. There was more laughter. It was such a different experience. She reassured us that the longer Clementine stays in the better, and that we can expect to have natural birth around her due date barring any non-cardiac complications. It felt really good to have much more optimism despite the overwhelmingness of the situation. I cannot begin to wrap my mind around my little one having open heart surgery.
We then met with the Chief of Pediatric Cardiothoracic surgeon. He was pretty straight-forward about the procedure, explained the risks (pacemaker, mortality.. sigh.. I can't even..), what we can expect pre- and post-op. It was very comprehensive in a down-to-earth way, which I appreciated since being on this side of the desk brings a sort of deer-in-the-headlights reaction to even "hello." He was very personable, and we had a nice conversation aside from the surgery. Again, he reassured us that as long as there were no other complications - Clementine could come home with us, and would most likely have surgery sometime before Thanksgiving.
The little details?
We're scheduled for another fetal echo when I'm 35 weeks - this will allow them to get a good look at her heart and arteries right before birth. (If she's born before then, she'll be premature, and will be in the NICU anyway, so they'll keep a close eye on her in that case as well).
At birth, from a cardio standpoint, she'll be taken to have another echocardiogram, just to make sure all is well and that there's no Coarctation of the Aorta (narrowing/blockage). If there is a blockage, she'll immediately have at least surgery to correct this, as it would prevent necessary blood flow. If this surgery takes place, they would then determine if they would like to do the AV Canal surgery as well. Coarctation is rare, and both doctors said that while her Aorta does look a bit narrow, it's probably unlikely that she'll have this.
Once she comes home with us, she'll be like any other baby. We'll check in with our pediatric cardiologist and a pediatrician that she feels confident working with, so we'll have those two resources to help monitor her well-being. However, in as few as 10 days to a few weeks she'll go into "heart failure" which they reassured us is not as scary as it sounds. It's the name for the condition - but it doesn't necessarily mean the heart is going to just stop. Her breathing may quicken, and since she's burning more calories through respiration, she'll get tired more easily and won't gain as much weight - fluid might start building up in her lungs, etc. Once this happens, she'll go on water pills and possibly some other medications to help with her heart pressure, fluid retention, possibly special formula to help her keep growing, etc. Then we'll schedule the surgery for a few weeks later.
The tricky part is the timing. Her birth is shortly before Respiratory Syncytial Virus (RSV) Season. Since there's that vulnerability to infection when heart conditions are present, there's a chance that she'll go into surgery before or shortly after this season begins - hence, before Thanksgiving. The cardiothoracic surgeon said that with AV Canal, babies usually have this surgery between 3-6 months regardless of how they're doing. They try to get this done before 6 months because of a build up of lung pressure due to the defect. Also, the vaccination for RSV is not 100% - it may help lower her risk of getting sick or at least lessen the severity - and she would need this once a month, and it's quite costly.
As far as the surgery goes, a pediatric anesthesiologist will put her under, then they'll get her all prepped. Right before, during, and after surgery, they'll have the echocardiogram going. They'll have her on a Cardiopulmonary bypass machine while they operate on her heart. They'll add Gortex to patch the hole between her two bottom chambers, and a graft of her tissue for the upper, and then repair the valves. Before they're done, another echocardiogram will be done just to ensure there's no lingering leakage etc. and then she'll be in PICU for about 1-2 weeks (average). We'll get to stay with her though - we'll have a room with a bed, so we can be by her side during her recovery time there.
Then we'll have a lifelong relationship with a cardiologist. I find that comforting, however, to have periodic check-ups just to make sure everything looks well.
I am just so thankful everyday for her little wiggles, and the little moments where we see her personality shine through. Thank you God for another small victory on Clementine's behalf. Thank You for keeping her strong and growing, and giving her a bright future. <3
27 weeks & 1 day | 90 days to go!