bless her heart

On Wednesday morning, Indiana will be having open heart surgery here in Austin, Texas...

“I don’t want the surgery Papa”, Indy said through her tears a few nights ago as we finished prayers and tucked her into bed. “I want the miracle”, she said as I held her and she cried.

Amen, honey. We do too.

We have been, and are continuing to pray for her miracle, even as we made the two hour drive down after church yesterday to check into the Airbnb we rented close by to the hospital here in Austin. Today we have pre-op appointments and tests for Indiana’s open heart surgery on Wednesday.

We’ve known for the last couple of months that this was on the horizon. This is part of why we’re here in Texas. Throughout February and March, we visited a couple of different children’s hospitals around the state and ultimately decided to do it at Dell Children’s Medical Center in Austin. It’s an incredible facility with a wonderful staff and Dr. Frasier, who will be doing the surgery, is one of the very best pediatric cardiac surgeons in the world.

It’s also fairly close to the little farmhouse and community where we're living just north of Waco. So we’ll have lots of folks here surrounding her and us, for the next 10 days or so that Indy will be here in the hospital, and it will be the best place for Indy to spend the six to eight week at- home recovery time, surrounded by dozens and dozens of her little friends who will be coming to see and be with her.

In February 2014, just a few days after Indy was born, after a very troubling appointment with a local doctor, we took Indiana to Nashville to have her heart checked out. It’s a story I shared on this blog back then, and one that I don’t think I’ve gone back and read again until earlier this week.

They say that about half of all little ones born with Down syndrome have heart issues. And some are much worse than others.

At the time of that first visit, we were told that Indiana had what is called a VSD (ventricular septal defect) - a small hole in her heart - that would most likely close up in time, and that in the years to come we would need to continue keeping an eye on.

And so as Indy grew, every couple of years I took her in and they would do another echocardiogram to see how her heart was doing.

Ultimately, the hole continued to be there. It hasn’t gotten any larger, but over time, it has begun to cause a few complications.

We’ve always known that open heart surgery was a possibility. But this last appointment in January confirmed that it was something that was going to be needed to be done, sooner than later.

To look at her, Indiana is as healthy and happy as can be. She often gets winded when she’s running and playing with other kids and doesn’t have the stamina many children her age have, but overall her health has always been pretty much perfect, with no outward physical signs of concern.

Her cardiologist here in Austin, Dr Wong explained to us that although what’s happening inside her heart isn’t life threatening right now, over time if it isn’t repaired, it could affect not just her quality of life, but the length of life as well.

And so here we are.

Getting ready for a difficult next few weeks and months for Indiana. It’s not where we’d like to be, but we’re truly thankful to be here surrounded not only by a competent surgical team and medical center, but lots of dear friends and family who love and are praying for her.

The hardest part so far has been helping Indy get emotionally ready for what’s coming. Preparing her for something that’s going to be very hard on her. Hard on all of us, especially her Papa, to see her go through so much difficulty and pain. But I also know that when it’s done, it’s going to make her life better.

On the way back to Texas from Tennessee last week we made a detour through Arkansas to spend time at one of Indy’s favorite children’s museums, and brought one of her friends with us.

We stayed an extra day there and after breakfast one morning, sat her down and told her about the upcoming surgery.

Since then it’s been a good, but often tearful time for her. But it’s also been filled with great fun.

On Saturday evening as the sun was setting over the garden, we had a big cookout at the house for Indy where lots of her friends came over to surround her with love and lots of joy!

This last couple of weeks and days has also been a time of much prayer for our family. Indy knows well that God can do miracles and so that’s what she has been praying for. We’ve all been praying. On Sunday morning in church, the whole congregation of more than a thousand prayed for her.

The surgery is schedule for this Wednesday morning at 6 am. They said that Indy should be in the operating room for 6 to 7 hours, and then in Intensive Care for about a week. And then once we’re back home in Waco, they say it will be another six to eight weeks of recovery before life gets back to normal for her.

It’s a surreal thing to be back spending time in hospitals again after all these years. Being here in this moment strangely reminds me of ten years ago when we prayed for a miracle for her mama Joey.

And so we again we pray…

“Lord, bless Indy’s sweet, precious heart…and be with her in these difficult days to come”.

PS: If you’d like to send a note or card to Indy while she’s here at the hospital, I think we should be able to get them at…

Indiana Feek c/o

Dell Children’s Hospital

4900 Mueller Blvd

Austin, TX 78723