Psalm 112:7 TLB
She does not fear bad news, nor live in dread of what may
happen, for she is settled in her mind that God will take care of her.
Talk about a whirlwind 8 weeks.
Squishy baby has had a heart murmur since birth. Her pediatrician initially wasn't concerned with it, but mentioned at her 9-month appointment that if it was still present at her 1 year checkup, we would likely be referred for an echo. She told us not to worry, that Squish was healthy, thriving; just a tad on the small side.
Fast forward to the beginning of November. Asher came down with a pretty nasty upper respiratory infection. We took her to the doctor, and her pediatrician was alarmed with the progression of the murmur in the two months since her last checkup. We were scheduled for an echo two days later. Within hours of that echo, a pediatric cardiologist at LSU Health in Shreveport called us, requesting to see Ash the next day.
We went to the clinic in Shreveport on November 15. Dr. Todman, Her cardiologist advised that she has Bicuspid Aortic Valve Disease (BAVD); instead of having a tri-leaflet aortic valve, one leaflet has fused together with another, creating a bicuspid valve. That issue alone isn't extremely concerning. He also mentioned that she has an area of narrowing in her aortic artery, near the arch (Aortic Coarctation). At this point, he mentioned that she needed to be referred to a children's hospital, either in Dallas or Little Rock, for a heart cath lab, to possibly balloon the coarctation. He then scheduled her for a sedated echo, to try and get a better view of the valve and narrowing. It was determined then that she had a significant area of 50% gradient narrowing in the artery, and 20% in the valve. He mentioned again that the valve wasn't the issue, and we likely wouldn't need to do anything with it until the narrowing was at or above 30% at the valve. He said we needed to prepare for the heart cath to balloon the artery though. Not a big deal: 2-3 day stay in the children's hospital, then regular follow ups here in Shreveport for the remainder of her childhood. Great prognosis, minimally invasive, win-win.
Two weeks lapsed, and we still hadn't heard anything. I called Dr. Todman's office, and he advised that the cardiology team in Dallas had determined that she was not a candidate for the heart cath. He told us to prepare for open heart surgery to graft the coarctation of the artery, and also prepare for the possibility of a valve replacement. Our whole world shook. I was angry, terrified, and bitter. All I could do was look at this sweet tiny little girl, not even a year old, and cry, knowing that this procedure was huge!
Cliff's notes on the procedure: The surgery itself lasts anywhere from 3-5 hours, depending on what they do. The heart is stopped, and she will be hooked up to a by-pass machine (READ: 13 month old baby is clinically dead on the table for the duration of the procedure. Digest that a moment.) If they don't have to mess with her valve just yet, they may be able to go in under her arms, by removing a rib; if that's not an option, then they will have to open her at her sternum. Right now, this is scheduled at Children's Hospital in Dallas; however, our insurance is making a stink about it, because Dallas isn't "in network"; they want us now to go to Little Rock. We're still waiting on the hardship referral to be reviewed and approved. Providing Tricare approves the hardship request, she'll have open heart surgery on January 15, 2014, three days shy of her being 13 months old.
Thank God for Jeremy-he has been my rock. That man is so full of faith-he's believing for a miracle-that this is going to be healed without surgical intervention. Me-I'm not that faithful, I guess. I am believing that God's will be done; whether by a miraculous healing, or by Him guiding the hands of the surgical team to bring about healing through the procedure and recovery. It's been difficult keeping my anxiety and my fear about all of this under control. I'm still angry. I can't hear one more person tell me to have faith in a miraculous healing-I know my faith isn't there, so I'm believing in what I CAN have faith in-His Word, His Promise, that He has her.
If you're the praying type, please pray for our family. For God's strength, His will. For strength for our older kids. For us. For Squishy.
Below are some links about her diagnosis:
Caitlyn, Stephen, and Squishy (Asher Elisabeth)
"Praise You In This Storm" –Casting Crowns
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
