Thursday, March 28, 2013

Some extra time to wait and see

I had a nice long talk with one of the cardiac surgeons at Rady's yesterday, about their current plans for Naya.  After more study of the cardiac catheterization results, they've decided the best plan is to wait 6 months and then re-evaluate.  It turns out the blood pressure in her lungs IS a little higher than they would like to operate.  The doctor's hope is that in  6 months or a year Naya will grow, tightening the band on her pulmonary artery, and creating a better environment in there to do the surgery they want to do.  Thanks to God her lungs do not appear to have damage.
I'm really glad to have more time to get second opinions from some other amazing hospitals, and to give Naya some more time to adjust to her new life before having to deal with open heart surgery.
I was also encouraged by the surgeons outlook on the surgery that Naya would be getting here at Rady's.  He thinks that the Fontan surgery could maintain for quite a bit longer than 10 or 15 years.  And as my cardiologist said, there are things in research now that could be ready in 15-20 years to help people that would be in her position at that point.  So that was good to hear.

So the next 6 months we should be able to mostly steer clear of the cardiology department, and then she'll have another cardiac cath to see how things are going. So pray for her to get bigger and her pulmonary blood pressure to go down.  And I'm adding on a perfectly functioning heart to my prayer list as well. :)  I'm also praying for wisdom for the doctors we get second opinions from, and for me to know the best way to proceed once I find out what those opinions are.

Monday, March 18, 2013

Cardiac Catheterization

Today is over, and we ended up not having to sleep over at the hospital, so all of us are happy about that!

The good news gathered from today's procedure is that the blood pressure in her lungs is not too high to move forward with surgeries.  If she'd had Pulmonary Hypertension, that would have presented a lot more barriers that could keep us from getting to a good place for her to be able to handle surgery.  So I'm thanking God for that answered prayer.

The doctors still don't think that it will be possible to make her left ventricle usable.  So that means they'll probably want to move forward with their initial plan of doing a Bi-directional Glen and Fontan surgery(ies).  The diagnosis they're giving to her condition for now is Double Outlet Right Ventricle with Mitral Atresia, which from what I understand could also be called Hypo Plastic Left Heart Syndrome.

Ideally I would love to find a hospital that believes she's a candidate for a bi-ventricle repair, because staying single ventricle would not make for a long lifespan for her heart.  The doctors at Rady's don't think that could be done.  But I'm hoping for the best with second opinions, which I'll be moving forward to gather asap, as the doctors at Rady's would like to operate in the next couple weeks or months.

Keep the prayers coming, today included a large victory.

Monday, March 11, 2013

Naya's Heart

photo by Stacy DeVries Bostrom

Naya and I have been home a little over a month now. It's been a heck of a month.

I'm thankful for so many things.  My mother, father and sister for giving of a LOT of their time to be with Naya and I, helping me as I learn how to be a mother.  My friends and family for their encouragement and honesty regarding how unnerving and difficult it really is to make that transition from a life about caring for ME to a life about caring for US.  My close friends that are making that effort to meet me where I'm at and even travel to be able to spend time with me/now us.  My employer for being so supportive and flexible for family and bonding time.  My puppy Lailu, for seeming to understand that I want to give her more attention but still need a little time to figure out how to balance everything.  Naya, for her love, patience, great temperament and amazing ability to adapt.  And to God for pulling me up out of each low point I've encountered. 

Last week had some hard news.  When I first had Naya's medical file from China reviewed last year, it appeared that she would need some serious heart surgeries, but that her heart was repairable and she should be pretty good to go after the issues were taken care of in surgery.
Last Monday at her cardiology appointment I learned that is not the case.  The details are still a little blurry to my scientifically-illiterate mind, but basically there is not a way to fix her heart long term.  This doctor has a plan for two surgeries that will get her heart to the place where it should be able to function well for 10-15 years. At that point he hopes there will be medical advances made that will create more options for her than a heart transplant.  Otherwise he said that people in her condition that get the surgeries he's suggesting would typically live into their 20's and 30's.

So of course that is scary and heartbreaking.  One moment you see this child and her unlimited future, the next you're wondering how many years you have left with her.  

That was a week ago today.  My heart and mind have been so encouraged by the words of friends and family that have a feeling of certainty that she is going to pull through this.  The immediate response of prayers has meant the most to me.  I do believe that they change things.  So I'm asking each of you who pray to please commit to praying for Naya's heart.

"And the prayer offered in faith will make the sick person well; the Lord will raise them up" James 5:15

I know God has a plan for Naya's future.  And I pray that includes health and long, long time here on the earth, and that her very life will be an example of God's faithfulness.  Her story this far has been a miracle to me, and I believe it will continue to be. 

We'll be overnight in the hospital next Monday for a cardiac catheterization.  That will determine whether she is in a position to move forward with the first surgery the doctor suggests.  At that point I will be looking to get second opinions from some of the top pediatric cardiologists in the country, and we will see if other options present themselves.

Here's a couple of my favorite pictures from this month, as Naya and I have grown to know and love each other more.