Friday, October 18, 2013

2nd Opinion

Today Chopper and I went to see a 2nd cardiologist for another opinion on the baby and I'm pleased with the results.  This doctor was almost completely in line with what our primary cardiologist has said and so I'm confident that staying with our primary cardiologist for the duration of the pregnancy and on will be the right decision.  Neither Chopper or I feel that we need to go anywhere else for diagnoses (although we were looking forward to REAL Philly Cheesesteak sandwiches!!!).  

The bad news -- which isn't really really bad though -- is that one of the coronary sinusoids has developed further into an actual large fistula -- a way for blood to get from the damaged side of the heart to, in this case, the aorta.  The doctor we saw today has only seen this one other time and it was several years ago.  But the one that she saw before shrunk over time and became a non-issue.  It's not guaranteed to do that -- it could be a major problem -- but at this point we just don't know.

So in the roughly 17-18 weeks of pregnancy I have left (they'll induce me early for sure) we continue to monitor the growth of the baby and the growth of the heart on a regular basis.  I'll be seeing a high risk doctor of course and about 30 weeks in we'll start putting together our team -- maternal fetal medicine doctor + fetal cardiologist + cardiac surgeon + doctor who does catheterization (what do they call that?) and who knows what I'm missing.  Do you think if I had team t-shirts made they would all wear them????

At birth, Aaron will be catheterized to accurately get a picture of blood flow through all areas of the heart and to really get a good look at how the damaged right side has affected the so far healthy left side.  And then the team makes the decision: can we do surgery or do we wait for a transplant.  Today's Dr. did suggest starting transplant paperwork as soon as he is born because there is a high probability that he will either need a transplant outright or that they'll get in to do the surgery and find it's not possible after all.  We're anticipating an initial hospital stay of at least a month or 6 weeks but going up to 2-3 months.  It all depends.  Everything is kind've up in the air.

Dear dad, might as well sell the house and move here because I'm taking my mother back!!!

I'm really grateful that this is all happening here with nationally ranked doctors, surgeons, and hospitals.  I'm really grateful that my parents are able to help support us of course emotionally but that my mom especially is in a position where she can come for at least a little while.  That's a huge blessing.  But I'm also thankful for being in this area and ward long enough now that we're comfortable with asking our amazing friends (ok let's face it, mostly my amazing friends -- all those other women!) to help with things as they occur.  Just today my dear friend Jenn kept my kids for 4 hours and dealt with an Abby potty accident because our appointment was all the way downtown (as so many of them will be!).  We've had several sisters bring us meals these past few weeks as Chopper has been furloughed (and yes, he is officially back -- hooray!).  And my counselors and other sisters I work with in the Relief Society are such a tremendous help and support.  I'm grateful for my family who even though they're far away are praying and going to the temple on our behalf and sending us packages (that's kind've the fun part) and just letting us know that we're loved.

I'm grateful for fall and winter and the holiday season  that brings so much joy to myself and my kids -- my kids.  I have been really appreciating my kids more or trying to at least.  Just enjoying the things that they say and do in case I don't get that with this one.  In many ways that makes me more upset than the thought of seeing my baby in surgery and NICU -- I hate the idea of not having him right off the bat.  Every other baby has been mine as soon as they have been born -- they've stayed with me in the hospital and I've nursed them all for a year and never had anything remotely like this happen.  It's upsetting to me to think how much holding and snuggling I'm going to miss out on.  But we'll see.  Maybe it'll be better than I think it will.  I hope so.  But in the meantime, I'm enjoying his kicking and his movement now and the mandatory attachment!


Alicia said...

If you make team t-shirts, don't expect them to wear them much, although you could always aim for a group photo with their shirts. Most of them will only wear scrubs (as I'm sure you already know).

Kate F. said...

Praying for you guys. Thank you for sharing your story.