Matter of Heart

My Debut Away

Thursday, October 30, 2008

I was only gone an hour.

Since we brought Evie home after her open-heart surgery, I can count on one hand the number of times she has been more than 100 feet away from me. Last night was girls-night-out for a girlfriends birthday. I gave Evie her meds, fed her and put her to sleep before leaving. (Oh, and checked the monitor twice to make sure C could hear her all the way downstairs.) Since its been 9 months since I’ve gone anywhere without a diaper bag, I couldn’t even find my purse to put my keys and cell phone in.

I got that sick feeling two miles down the road. I couldn’t reach behind my seat to feel her little chest rise and fall. The silence was deafening.

Resolved to have a good time, I continued.

I did finish a delectable piece of cake before my phone rang…I saw it was C calling.
“What’s wrong?” I answered. (C is “Mr. calm, cool and collected”, is very capable with the kids and I knew would only be calling if there were a reason!) He explained that Evie had woken up three times, her oxygen was way down and she seemed to be having some trouble breathing.

I got in my car and headed back grateful that most of the drive is back-roads and that it was unlikely that cops would be monitoring speed at this hour. I prayed. I tried to wish away the miles between her and I. I vowed not to leave her side for another six months.

I’ll admit it. When you watch your baby go through everything Evie has gone through, its easy to let your mind wander to the worst case scenario. The drive back seemed endless!

C had her peacefully sleeping after a breathing treatment when I got home. We had her on some oxygen for a while and her sats came back up. I checked fingers and toes for blueness. Listened to breathing. Evaluated heart-rate.
She was fine.

I wasnt!

Such is life with these little heart-babies.
It means falling asleep watching the digital line dancing up and down on her monitor indicating her heart is beating
It means second guessing every gurgle, hic-up and coo from the back-seat.
It means worrying that every bug or infection could turn into something life-threatening
It means constant acknowledgement that every breath is a gift from the Lord
It means having home, beeper and cell phone numbers for 5 doctors that you are on a first-name-basis with
It means choosing not to go to church, the mall, a party because of exposure to germs
It means thanking God for the privilege of each dirty diaper I get to change
It means standing over her crib praying for another day to love her
It means thanking the Lord each morning when she wakes and smiles that He has given her another day

Evie’s new foot-less pajamas…thanks Auntie Rebecca!
And her pink toothbrush that she LOVES! Now we just need some teeth!

Rough Few Days

Tuesday, October 21, 2008
Wishing there was better news.
Its been a very frustrating weekend with conflicting doctors reports. Cardiologists in Columbia and Charleston along with Pulmonologist and her Pediatrician are all collaborating about the best way to proceed. The nutshell version of the story is this:

-She has fluid building up on her lungs again and is being treated with lasix, steroids, nite-time oxygen, nebulizer breathing treatments, inhaler treatments, and antibiotics along with her other “normal” drugs.

-It is likely that in the next week, we will have to take her back to MUSC for
1)a sedated echocardiogram and
2)possible heart catheterization

Possible causes for her chronic pulmonary struggle that doctors have suggested are:
1)Pulmonary Hypertension (treatable but progressive and not cure-able)
2)Narrowing of Pulmonary Artery (a common side-effect of her surgery. The artery is compressing when she sleeps causing desaturations…would probably require another open heart surgery)

Needless to say, the possibilities are overwhelming and scary! Its been nine months, dozens of doctors appointments, enough drugs to stock a new CVS, several hospitalizations and we still don’t know what’s causing her edema and hypoxia.

Please pray specifically:
-That Evie would heal and get strong enough that we can safely proceed with further testing and evaluations
-Wisdom and unity among her doctors about how to treat her and what the plan of attack should be
-The kids and I. C is out of town a bit this week. The new meds regime takes about 30 minutes 3 times a day. I feel like Im doing a poor job keeping them on track with school and giving them the attention they need.

But His grace is sufficient! Thank you praying friends for again seeking the Lords direction with us for our precious girl!

On a lighter note, she learned Patty-Cake this weekend and is so proud of her new mastered skill! Too cute!!

Life Lessons

Friday, September 12, 2008

My own insecurities have left me fearful at times about the effect all of this “trauma and drama” with Evie could leave on my other children.  

Mommy & Daddy “deserted” them for a month when Evie was hospitalized
They have been passed around
Evie’s special needs have required much of mommy
One of my dearest friends baby-girl who was in ICU with Evie, passed away shortly after coming home.
Tristan has asked if our baby will die.
Our abrupt move from the only home they’d ever known in Ukraine
These are weighty issues for wee ones!  I have prayed that God might use these things – these hard things to grow them.
Each of the kids has a “heart baby” now that we follow and pray for every night.  A few days ago we posted about baby Gracie whom it appeared might be too tired to keep fighting.  Abi’s precious prayer brought tears to my eyes.  

“God, thank you for baby Gracie
Thank you that you can make her heart better
Thank you that its your choice if you want her she can go in heaven and you will take care of her.
Thank you that if she goes to heaven she can play with Annabelle (our friend from ICU) and Matthew (the baby we miscarried 4 years ago) and Great Grandma can hold her.
Thank you that her mommy and daddy love you God.”
I was so humbled.  All I could do was plead with God to spare this life…to allow Gracie to linger.  From a six-year-old, I got a glimpse of that childlike faith.  Gods perspective.  The joy He take in each of these little ones coming home.  
These are lessons learned the hard way.  But nothing is wasted.  Where the Lord has led, He will go before.  May He work in these little lives to bring Him glory and teach them (and me) a deeper trust in Him!
…by the way, miracle Gracie is healing!!