vascular anomalies and living in the uncomfortable unknown
/Here are some words for you to think about today:
cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation
Lots of words, y’all...
Words that are being tossed around trying to figure out why my seven month old daughter’s left leg turns purple and is quite a bit smaller than her right leg.
Words that I had NEVER heard until her cuteness came into my life.
Words that throw me into more confusion than I can deal with some days, but just enough confusion to remind me that I am not in control here.
Words that I’m repeating over and over as headings in this post so that somebody else who is hearing these words and searching Google won’t feel so alone, like I felt when experts and doctors looked at us and said, “I’ve never seen this before.”
Speaking of that… here they are again!
cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation
My daughter’s left leg was purple when she was born. The discoloring stretches up her back a bit and around the left side of her torso, down her leg and covers her foot. Her left leg is both skinnier and shorter than her right leg. In the NICU we were told it looks like a port wine stain. The pediatric dermatologist quickly ruled that out when he noticed it blanches when pressed against. Port wine stains are associated with Klippel Trenauney Syndrome, which is now being talked about with both our dermatologist and our orthopedist. For several months she was diagnosed with CMTC, until our second visit with the vascular anomalies clinic at Children’s Hospital in New Orleans, where she had a CT scan with contrast and an ultrasound of each leg. Her diagnosis was then changed to hypoplasia of the femoral vein in both legs, much more severe in her left leg. What I understand this to mean is the main vein running up her leg is underdeveloped and much too narrow about a third of the way down her leg, this means the blood has to reroute through superficial veins back up the leg, causing the leg to turn purple. Makes sense, right? Where it gets tricky is this diagnosis should cause her left leg to be bigger... but it’s smaller.
So there’s that……..
Again for the google searchers:
cutis marmorata telangiectatica congenita (CMTC) - hemangioma - klippel trenauney weber syndrome (KTS/KTWS) - limb discrepancy - atrophic/hypertrophic - hypoplasia - femoral vein - capillary staining - venous congestion - vascular anomaly and vascular malformation
We have a pediatric dermatologist, orthopedist, and vascular surgeon who we are following up with regularly... they are experts - the best of the best in the state and we love and appreciate them all.
But the thing is... those words up there confuse me… a lot. They get all mangled in my head, and I get lost in them. And then Google just creeps right up on me and I just can’t deal with Google sometimes... because Google is not a doctor, but I like to think that it is and IT DESTROYS ME.
I’ve got to stop googling.
It’s not helpful.
The actual real life doctors all agree - we’re watching and waiting and following up at our scheduled appointments and if anything changes we’re making phone calls…. and thankfully she doesn’t seems to be in pain, she’s meeting all of her milestones, and nobody is terribly concerned about her growth and development in general.
And even more importantly, I’ve got to open my eyes and look at this little bundle I’ve got in front of me: Edith Joy.
Her name means “Victorious in the battle for JOY.”
And it couldn’t be more fit for her - she is so filled with joy... and her joy fills me with joy! Her joy reminds me that Jesus formed her, named her, and filled her with smiles… and that long before she was being built inside of me, these vascular anomalies were known - they serve a purpose - they are part of her story - part of her uniqueness - they set her apart - they make her, her!
So while I’m confused by all these big words, and while sometimes sitting in that confusion feels very uncomfortable, scary, and even angering, I know that I’m confident in the purpose of her story and her journey being a good one... because the Author of her story is good. So good. Always good.
And comfortable or not, I know that I can rest in that promise.
When Moses was leading the Israelites out of Egypt and the people noticed the Egyptians pursuing them, they became scared, confused, uncomfortable, angry. They didn’t believe in God’s goodness to carry them through what was happening. They started whining and crying out at Moses and God.
And sometimes that’s where I find myself living in this uncomfortable unknown… scared, confused, angry.
Friend, whatever your personal trial, if you find yourself in that place as well, will you memorize these next verses with me? Write them on your heart and repeat them daily. Let this promise be your confidence as you walk through your own uncomfortable unknowns.
“Moses answered the people, “Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again. The Lord will fight for you; you need only to be still.”
Exodus 14:13-14
And one more time for fun… also, can somebody tell me if this is even how this works? 😂 #keywords #googlesearch #iliterallydontknowwhatimdoing
