Tuesday, June 2, 2009

A.O.A. (Seriously)

I started a post last week to cover mother's day and my birthday...including pictures...and I just have not gotten back around to finish it. So, that one will be posted after this one, which does not follow chronological order but...whatever.

A.O.A. = Alot of Acronyms.

I am not kidding.

Here is the little girl's diagnosis...doctor style...


I will give a gold star to anyone who can correctly tell me what each of them means ;) If you have to look them up I may only give you half a star...

We visited St. Pete again yesterday. Did the echo and met with Dr. H, the fetal cardiologist. We also got to meet the pediatric cardiac surgeon. Between just these two offices we were in a doctor's office for 5.5 hours. Seriously. I am beginning to wonder if I can absorb knowledge just be being in these offices...ya' know, kinda like osmosis.

Here is the good news. Both Dr. H and Dr. C think we may be able to forgo the first surgery, the placement of the shunt (fingers, toes and everything else crossed). This all depends on how well this little girls heart can get just the right amount of blood to her lungs. Kevin tells me not to count on this happening but I cannot help but hope. The way her heart is set-up and functioning right now, one of her defects (and I am not saying which one because I really want you to guess the acronyms...I'm just weird that way) may actually help her after delivery. Who would of thought that? Anyway, this one defect may in fact be protecting her lungs and getting just the right amount of blood there to keep her oxygen levels good (around 75%). Should this be the case then we can wait for surgery until the 4 to 6 month mark. And then the super scary worry and concern come. The next two surgeries are big and nasty and complex and terrifying.

Other than that, everything else remains the same. Same diagnosis, same management and same game plan for delivery and after delivery. Just as Dr. H was on our first visit (and continues to be at each of our visits), Dr. C is just as positive. While we know for a fact that we are entering into an unfamiliar realm with a new reality being forced on us we have a legitimate, fighting chance for a life for this little girl. And in all reality...who can honestly ask for more.

Please keep the prayers coming. I know they are working and I know with all of my heart God is hearing them. He may not answer these prayers they way I want them to be answered but I have to trust that whatever happens, God has been with us the whole time.

As Kevin had mentioned in his last post, I know there are some people who do not understand or appreciate the very seriousness of what we are facing. In all actuality, if this was happening to someone I knew and I had never experienced this I would be the exact same way. I would think, well, the doctors know what the problem is and they can do surgery and voila...all is well.

And really this is not the case.

Even if this little girl happens to fall into the 0.1% of the super stars who live with a single ventricle (and by super star I mean she has no other problems that regularly occur with this stage of defect and the surgeries associated with it...ie, strokes, effusion, brain damage, etc.) there is still no way of knowing when the heart will fail. Her heart will work on a single ventricle for as long as it can but noone knows if this is 10 years, 20 years, 30 years or maybe more. She (and us, by virtue of us being her parents) will have years of heart monitoring, doctors appointments, possible follow-up surgeries and who knows what else to deal with associated issues that could develop. If all fails her only option will be a heart transplant. There is no medicine or surgery that can cure her heart. She will live with this defect her entire life.


Keysgal@QuietWater said...

I will not even begin to try to guess the acronyms (not even sure if I spelled that right...)All is know is that I am sooooo glad you are with ACH and the docs you have working with you. Yes, it's scary. Yes, there are a lot of unknowns but I know this for a fact.....God is watching, listening and most of all he is with all of us while we travel this road. We can hope that the first surgery can be skipped but if it has to be then you have the best of the best on your team. Thank you for the update and yes, prayers are still being lifted from me and all I know. Much love to all of you.

Kevin said...

Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Transposition of Great Arteries, Pulminary Stenosis, Ventricular Septal Defect, Mitral Atresia
Do I get a Gold Star?! To be honest, even after just visiting the Dr., I had to think really hard to remember them exactly.
The TGA adn MA are actually GOOD things in our case, in what otherwise are bad defects. These two defects to me are God's way of making a shitty thing better (excuse my language but that's what it is). Without these, we basically would have been looking at just HLHS and a really nasty surgery that is worse than what we already have to have. The Transposition salvaged the Aortic Valve and the Mitral Stenosis MAY just restrict blood flow enough that we don't get too much blood flow to the lungs (normal babies need 100% flow but this heart condidtion needs 75%-85%, so if no restriction or if too restricted, then for sure baby would need surgery couple days after birth).

Keysgal@QuietWater said...

No fair Kevin....you cheated, uh well not exactly cheated. I never would have guessed them anyway :)

Buster's Momma said...

That would be so awesome if your daughter was able to skip the first surgery! We are just starting to be given more detailed information about what our little guy is facing, thanks to the docs in Columbus. Now we're hearing things like "endocardial fibroelastosis" and "aortic stenosis". Not sure exactly what all this means for the baby & his future, but we're gonna find out next week during our next echo.

I'm waiting for permission to link this blog on mine, but in the meantime I want to share it with you here:
This little dude was born last August, underwent Step 1 of the hybrid Norwood, and ended up having to have a transplant a few months later. It's quite the story!

We are keeping you all in our prayers.