Friday, August 3, 2012

These days.

Here's what's been happening with our little family over the past few days.  First, Bonnie has been working on learning to drink from a bottle.  This is always a hurdle for CDH babies, and especially those that have been on ECMO and intubated for prolonged periods of time, because of their oral aversion.  The way one of Bonnie's occupational therapists put it, "they have to learn to trust again."  As in, they have to learn to trust that not all mouth experiences are terrible.  Both her occupational therapist and speech therapist spend a *lot* of time trying to provide positive oral stimulation.  Anyway, Bonnie has a pretty strong gag reflex, and her oral/facial muscles are weaker than they should be.  She's made good progress over the past few days with learning to suck on (and enjoy) he pacifier, and a couple days ago she took some milk from a bottle.  She has continued to take a small amount from a bottle once a day since then, and we are sooo so proud of her.  Once she has her swallow study done (hopefully next week), they'll be able to work more aggressively on getting her to take all her feeds by mouth.

Bonnie working with her speech therapist Heather.

Meanwhile, back at the ranch, Henry decided he wanted to "go fishin'!".  Jonathan was outside practicing his casting, and Henry wanted to join in.

We took Henry (along with some friends!) to the Charleston Aquarium yesterday.  He had a good time running around from exhibit to exhibit.  

This is a little tube thing in the middle of the lemur exhibit (why are there lemurs in a South Carolina aquarium? Not sure.)
And here's Henry in a Jeep thing in the Madagascar exhibit.  There were a couple fish  involved in this expedition, I promise.

And here are some pictures of Bonnie from today.  She had a big day with all her various therapies (speech, occupational, physical).  Physical therapy was the last one of the day.  When her therapist put her on her belly for some tummy time, Bonnie promptly fell asleep.  Right there in the middle of the floor.  She'd had almost no sleep last night, so we just left her there.  She slept for three (THREE!) hours.  I took a million pictures of this event because it was so funny, and she looked so cute.

I am a tiny baby in the middle of the floor!

One awake picture from today.  This was taken prior to the amazing nap.  See how well she's holding her head up?  Thank you PT and OT!

A few people have asked me if we're planning on transferring Bonnie to the hospital in Greenville (where we live--about 3 hours from where she currently is, in Charleston) while she learns to eat, weans off her drugs, etc.  After much discussion with many of her doctors, we (and they) have opted not to transfer.  Her surgeon's concern is that she may end up needing a G tube (surgically implanted gadget that goes directly into her stomach from her abdomen).  This would only be necessary if she doesn't catch on with the oral feeding, but if she does need it, her surgeon here at MUSC wants to be the one to do the surgery.  If she had been transferred to Greenville, she'd have to be transferred back to Charleston for that--too many transfers, huge pain, big mess.  We're praying and hoping and believing (and would love it if you would too!) that she catches on quickly to PO (oral) feeding so we won't have to even worry about a G tube.  So far she's making good progress.  Thanks for praying for our beautiful little girl, y'all.


  1. She is just precious...thanks for sharing with has been so inspirational...your faith and your courage and watching Bonnie progress!!

  2. So sweet, so happy she is doing well. Praying for Bonnie and family thru this season of life.

    God Bless,

  3. Leslie, I continue to pray for Bonnie and for you all... I know these days of weaning and feeding seem endless, but she looks great to me. Praying for NO g-tube. The pictures of her asleep on the floor are priceless! Love, thoughts, and prayers from Winston-Salem...
    Clara's grandmother "Sweet Mama"