PINK SILK CURTAINS

Yesterday was a great day.  It was amazing as SWEET CHARLOTTE was placed in my arms again and a memory which I have kept reliving ever since.

I thought we'd crossed over another BIG hurdle when she came off the ventilator, but it ended up being short-lived when she was re-intubated last night.  A minor set back for Charlotte because she's just not strong enough to breathe on her own quite yet, but a major one for Mommy.  Just because my brain understands doesn't mean that my heart does.  Emotionally, it's been a harder day for that fact alone.  And then I saw the neurologist.

He came because Charlotte's weekly head ultrasound showed a different picture than last week's.  Enough so, that Dr. Neurologist paid us a visit.  Her ventricles are enlarged because they are not draining effectively into the spinal column.  If enough fluid accumulates, then pressure builds to an unsafe amount.  Obviously this doesn't make for a cohesive environment and if it doesn't resolve on its own, she will require surgery to fix - a shunt is placed in her brain to drain the fluid.  We will know more tomorrow and are looking at having another scan later this week before we know if she needs surgery or not.  We pray for SUPERNATURAL HEALING.

Also still on our PRAYER PLATE..... We pray that the leaky thoracic duct resolves with medication and her 'nothing by mouth' diet.  If not, she will require surgery to ligate the duct.  We also pray that the swelling in her chest decreases substantially and supernaturally!  If not, then a catheter will be surgically placed to drain it.  Believe it or not, it's called a pig tail catheter.  Leave it to the medical community to glamorize it. 

Sometimes I feel like although I may seem unruffled, I'm paddling like crazy underneath.  And though I may feel this way, I know that GOD is right there beside me.  And then I take a breath again.  And choke back tears.  I trust you, God.  I trust you with my whole HEART...and Charlotte's too.  

THE MENAGERIE

it's only fitting that we introduce this blog to the menagerie of doctors who are now responsible for the well-being of me and our sweet baby.  currently we are at 5 and I'm sure that it will only increase.  due to our numbers, i'm affectionately referring to them as the menagerie.  in no particular order here are our heros: our obstetrician, maternal fetal medicine specialist, pediatric cardiologist, geneticist and the ever-important pediatric cardi surgeon.  we have been handed to each marked 'fragile.  handle with care.' and each doctor has done just that.  we know that the road of finalizing our team of doctors is not a short one but can rest assured knowing that ultimately we are in the care of God.

it was only a short while ago when our world changed in an instant.  we went from a routine pregnancy to non-routine in a nanosecond.  the ultrasound that we had gone to in hopes of hearing one of our doctor's famous early gender guesses, turned out to reveal a large mass of fluid around our sweet baby's head.  often linked to a chromosomal abnormality, we underwent the test to find out which, or hopefully none at all.

once we found out that our baby had turner's syndrome, we started waiting for the mass of fluid to either resolve or grow.  fortunately in our case it resolved because had it lingered, it would have wreaked havoc.  truly a praise.  next was to wait until her organs were developed enough to check for abnormalities.  and now after finding out that she has hypoplastic left heart syndrome, we wait to see if the left side of her heart will grow a tiny bit more.  every little bit helps.

there are a lot of things that run through a parent's head when faced with this kind of news.  it's not exactly what i had expected to be living, although i know that this - the waiting - is the easy part.  who knows where it goes from here, but we know that a new kind of wait will start once she's born.  that's when the true fight at life begins for her.  it's when her heart is responsible for itself and i can no longer support her.  it's when our life will change forever as our family attempts to navigate a world of unknowns.  but while there is so much uncertainty, we know that the Lord is our firm foundation, no matter what the road ahead brings.

we have hope for the future...hope for her heart...hope for her life.  we pray that He gives her the strength to fight her fight for life and for the wisdom of the menagerie.