Praising Through the Storm

Our Journey with BAVD and Aortic Coarctation

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:

http://portal.childrens.com/wps/portal/!ut/p/a0/04_Sj9CPykssy0xPLMnMz0vMAfIji0sSK8tTc3KsAgwMzc0N9MP1o_SjSioLUvUjLQ30C3JzHQGcEgzf/

http://portal.childrens.com/wps/portal/!ut/p/a0/04_Sj9CPykssy0xPLMnMz0vMAfIji0sSK8tTc3KsAgwMzc1M9cP1o_SjSioLUvUjLQ30C3JzHQEdQVxr/

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

Life is a Highway?

Whew!  Well, getting to this post took a bit longer than expected.  I am just settling back in the swing of things after two LONG travel weekends in a row, with three kids in tow.

We went down to Biloxi to visit Jeremy on Father's Day.  My parents went with me-that was a blessing in and of itself.  People with fractured tibia's should not drive for long periods of time, so I'm told.

So the six of us loaded up in my good ol' Traverse, without an inch to spare.  Squishy and Bubba both did extremely well during the 6 hour road trip, and Cait was in her own little world back in the 3rd row.

We did the tourist-y thing, and spent Saturday morning/early afternoon on the beach.  Bubba and Cait had a blast-we couldn't keep them out of the water long enough to even reapply sunscreen.  Squishy Baby was less than impressed.  She kept pulling her feet up to her chest to prevent them from touching the water.  Yep, that's my kid! Stephen and I made a "mermaid" Jeremy in the sand-Bub didn't grasp the concept that sand does not belong any where near your face-he kept trying to completely bury Jeremy in the sand!

While Squish and I took a nap, my mom & dad took Bubba to see an old train car.  Cait was hanging out with Jeremy.  Don't let her fool you-I'd bet money that she misses her daddy just as much, if not more so, than the other two.

After coming home and adjusting back to "normal" time, we packed up and drove down to see Pops & Sweets in Iowa, LA.  They have their own island retreat in the back yard.  Jeremy drove over and met us there-with flowers and a margarita waiting for me when I arrived.

Again, we couldn't keep Bubba and Cait out of the water, and Squishy wanted nothing to do with it.  She likes her water warm and confined to a bath tub, thankyouverymuch.  So she and I spent a lot of time playing inside-I was nursing a 2nd degree sunburn, so there was no pool for me!

We discovered that Squishy is an avid fan of avocado (yuck); in fact, that and bananas are the only solid food that she'll even entertain the thought of eating.  She does not like the purees-she wants some texture.  I'm thinking of all the kids, she may just skip the beginner foods and go straight to table food.  Right now, she still prefers milk to anything, which is fine by me.

We got back in Sunday night, and to my great disappointment, my knee had swollen 2x its normal size.  Back to the immobilizing brace for me.  Yay.  I lost my big girl helper-Cait is spending time with her Pops and Sweets for the next week-Jeremy will pick her up on his way home over the 4th of July weekend, then she is heading to Milwaukee that following week.  She's too busy this summer for her own good, but it's so good to see her out of the house and spending time with family that she doesn't get to see that often.

Jeremy and Cait got in late on the night of the 3rd.  We spent the 4th cooking out at my Mom and Dad's, then we took the kids to watch fireworks.  I'm completely worn out, so I'll leave you with these last pics from the fireworks.  Until  next time, guys, Happy Birthday, 'Merica!

Introduction

Well, hello there!

Please allow me to introduce myself.  I'm Kristin.  I've been married to Jeremy since August 2005, and we have three b-e-a-utiful kids-Caitlyn, Stephen, and Asher Elisabeth. 

As my blog suggests, my life is crazy-beautiful.  I work full time, and have been working toward's my B.S. in Business Administration (I've got my Associate's in Paralegal Studies, but that just doesn't do it for me anymore)

I'm a God fearing woman, and I am doing my best to raise my children up in the word, and with the fear of God as well.  Sometimes I rock, sometimes I have major "mommy fails", but all in all, I think Jeremy and I are doing an alright job. 

Jeremy and I have a HUGE testimony of God working in our lives. We've worked through brushes with the law (minor in the grand scheme of things), and infidelity (HUGE in the grand scheme of things).  Without God, our marriage would not have survived either of them, and since the latter, we've added Miss Asher to our family, and I can honestly say that our life wasn't complete until she came along. 

Anyway, I'll keep this post short & sweet.  The kids and I, and my parents, are heading to Biloxi for the weekend, so next week should be cram-packed with pictures and travel stories from the 6+ hour car ride with an extremely busy bodied 3 year old and a 6 month old.  God, grant me some serenity. 

Until next time, here's a pic of my proudest accomplishment in this crazy world, my three kids.  

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  Psalm 139:14