BLESSINGS

There are so many blessings in our life on this Easter Sunday.  Charlotte's life is just one of the many which we've experienced.  At mass this morning, I was humbled when I thought of her journey and knowing that the Great Creator's Hands had been stitching up surgeries, calming scary situations, steering us through her complicated course...and it happened JUST the way HE wanted it to unfold.  Every inch, every fiber of Charlotte is perfection, and all thanks to His handiwork.

We hope that if Charlotte continues on her get well soon path, that we will break free of the hospital soon.  Perhaps late week/early next?  We're not getting ahead of ourselves, but this Mommy can almost TASTE the freedom for Charlotte.  Walks anytime we want, no monitors, no busy hospital...just busy life with Mommy, Daddy and brother and just the way we like it!  We pray for Charlotte's continued healing and COMFORT.  She's had a rougher last day or so but it seems as though she's turned the corner and is more comfortable pain-wise.  We pray for a WELL-BEHAVED Sweet Charlotte and for the peace which we have been granted throughout our journey.  As Charlotte shows that she is able to continue tolerating "eating" (milk feedings through her Gtube) and shows consistent growth over the next few days, she may just earn her ticket HOME.  All the more wiser, He knows her path and is leading us there, in His time.

Thank you for your continued love and support.  It is the greatest gift and one which we continue to cherish.  Hug your babies tighter tonight, on this very special Easter Sunday because as you've seen over the past 9 weeks, GOD IS AMAZING.

WHAT A DAY BRINGS

Change rolls through here like the Texas weather.  One day it's 80 degrees and sunny and the next it's threatening to snow.  Charlotte's renal scan proved to be a sunny spot yesterday.  After pursuing more renal testing, we are hopeful that it was the last of it.  Dr. Quan believes that the clots in Char's kidney's are caused from the central line used for IV access during the first few days of life.  However, they are not cause for concern, nor is the plan to treat anything more than nothing!  In fact, we are going down on the blood pressure medicine because it's such a non issue in terms of them affecting her blood pressure.   However, much like the weather, the focus quickly shifted to her GI tract after a fishy looking xray and a struggle for Charlotte to keep her feeds down all day.

She had an upper gastrointestinal study done this morning and it revealed that my Sweet Charlotte's anatomy of her intestines are normal!  There was concern with her intestines being twisted but fortunately NOT the case.  We also had a swallow study performed which proved to be less as encouraging.  Charlotte has severe reflux as well as having aspirated after swallowing once.  Now, she's never taken milk by mouth before so today was truly a first that she sucked on a bottle and swallowed.

Because of Char's condition, she's a candidate to get a gtube which is a feeding tube in her stomach, next to her belly button.  This is a good thing because it will allow us to go home and as Charlotte gains ever-important strength and weight, she will learn to suck-swallow-breathe.  This muscular reflex allows to drink from a bottle but until then, the gtube will be our ticket outta here!  Additionally because of her severe reflux, her esophagus will also be banded during the surgery in an effort to prevent the stomach from refluxing food.

Right now, she has a nasal feeding tube which goes into the duodenum, past the stomach, and she has resumed feeds.  The hope is that by feeding directly into the duodenum, she has a significantly less likely chance of vomiting entire feedings, rather just good 'ol fashioned occasional baby spit up.

Due to Charlotte's brain shunt surgery last Friday, she's not able to have abdominal surgery until 10 days post shunt.  We are on Day 4.  Additionally it takes about another 10 days post gastro surgery before discharge.  Since she is so incredibly tiny, she is not yet eligible for the gtube surgery.  Babies need to be at least 3 kilos and Char is about 2.45 kilos.  So for the next 10ish days, we will wait for Charlotte to grow.  We hope that after she has her surgery, she is able to prove herself to us all over again - with having had been reintubated for the surgery and then breathing on her own again.  We also pray that although with another 3 or so weeks still ahead of us, that this is the end of Charlotte's stop and go recovery.  We need our little family of four to be together...for the first time.