Thursday, September 30, 2010

Most recent update...

Well, I sit here very confused and, for the first time during this whole process, scared.  We received completely different news at our cardiologist appointment today. At this time we're not sure if it's good news or bad news.  It's all so confusing at this point, and I'm even in the medical field.  I'll give it a go anyways... try to follow along if you can.

Remember on August 4th we were told that Preston had a problem with the right side of his heart, and that it appeared the right side wasn't developing well if any at all.  Well, today the pediatric cardiologist told us that the right side of his heart and all the valves on the right side look good and that the problem seems to be on the left side of the heart specifically the aortic valve, which is considered the most important part/valve of the heart.  Still following?

So the new diagnosis we are currently trying to swallow is Aortic Insufficiency... moderate to severe aortic insufficiency.

image via etsy
The left ventricle is the one that's hypertrophied (large)--- which made the right side look smaller than normal initially--- and the aortic valve is insufficient meaning that Preston's heart is not effectively pumping out blood to the rest of his body.

Unfortunately the cardiologist doesn't have the same optimistic outlook on this new diagnosis.  Why? Because they don't see this often, and they aren't sure what to expect.  You see they diagnose right hypoplastic heart syndrome about 3 times a month and left hypoplastic heart syndrome about 4 times a month at Texas Children's Hospital.  She can't recall the last time she's seen a case of AI (aortic insufficiency) in utero.  Therefore, there is not much experience with treating this condition, and unlike the first diagnosis given she can't give us a firm "we'll do three surgeries to repair it and the prognosis is good."  It's more of a "we'll have to wait and see how your baby does when he's born" kind of prognosis.  They just simply don't know and can't give us the firm answers we were seeking.  Since the left ventricle is the powerhouse of the heart and responsible for pumping blood out to the rest of the body patients with AI can often experience congestive heart failure.  It could be that they'll just need to give Preston medication indefinitely to keep his heart function stable or it could be that they will need to perform a valve replacement (which is commonly done in adults but more rarely done in babies).  Again it's a "we'll wait and see how he does after birth" kind of thing.

Confused yet?  We sure are.
image via etsy

One thing is for sure though... I will keep praying daily for healing of Preston's heart.  The right side of Preston's heart is developing well, and I will give Him all the glory for that!  I will pray that Preston will be stable after birth, and that he will have a happy and healthy childhood with a good quality of life.  Preston looks good otherwise, and he doesn't appear to have any problems with growth as he remains normal size.  I believe her exact words were "you have a good-sized baby" when she commented on how he measures a few days bigger than he should.

For the first time during this whole process I actually feel afraid and scared, but I can not and will not let my faith fail.  Thanks for the prayers, good thoughts, texts, e-mails, and phone calls today.  Please keep those prayers coming.





Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Matthew 6:34

7 comments:

Kristin said...

keep your faith, t! love you very much!

The Johnson Family said...

Preston is contantly in our thoughts and prayers. I hate that you are going through this but have faith that your sweet baby boy will be healed. Continue to stay strong in your faith. xo

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Anonymous said...

TIFF AND TONI

WOW THIS IS A TOUGH ONE
JUST KEEP BELIEVING
HE STILL PERFORMS MIRACLES!!!!

JUST HAVE TO GIVE HIM TIME
REMEMBER PRAYER DID IT FOR ELLA
HOPE IS THERE FOR YOUR SWEET P

LOVE ALWAYS,
NANA

Andi said...

Oh no, this must be so tough to deal with, so many unknowns.
You will be in my thoughts.

Dale Family said...

I am praying for you, Tony and Preston. God works in miraculous ways!! He knows what his plan is for Preston and you have to have faith!! This does not make you feel better, and I know that, but....

Thinking about you!!!

michelle said...

Preston is so special to so many sweet Tiffanie and we all LOVE him so much already- I pray for peace as you walk out your faith in HIM, and HIM alone. I ask for more to come along side you and walk this journey with you, for HIM to carry you when you feel weak, for us to stand in the gap when you need us to and for Preston to receive all that we are praying for and all that HE is calling your precious son into.
Love you soooooo much! xoxoxo
m

abby @ tales and trials said...

I am praying for little Preston. He is in God's hands and he can perform miracles we can't even fathom. Praying for you too that you can endure this trial and have peace that God is in control.