The hours after Vivian's birth was a bit of a blur. We had decided to induce her around 39 weeks and three days due to me being dilated, and the now known genetic abnormalities that laid hauntingly in our genes.
My OB had come out of retirement to deliver her. He had been with our family since our first baby and had been the only physician I had seen, or delivered my babies, in close to a decade. He was still seeing a handful of patients before his full time resolve to administration, when Eric and I told him of our unexpected pregnancy.
We weren't trying for a baby. At the time, with all the moving peices, it was the last thing we could envision. But we knew that God was the one that granted life, not us, so there was a reason for this precious little girl.
Telling people we were pregnant was a chore. The fear you saw in everyone's eyes, was met with the aching in ours. It is hard to convince other's everything will be ok, when you are raising a weak hallelujah yourself.
We know God is good, He is love, and He is sovereign over all things.
It is just hard to fully comprehend His ways when you are in the meat of surviving the crushing of His allowing.
He is just, He is righteous, and His ways are exactly what needs to be.
But His plans aren't my plans.
And His provisions, in the season, don't feel like provisions....some days they felt a lot like punishment. Which weighed heavy to grapple with from my human....hurting...sinner's perspective.
Holding onto faith that all would be ok...all would work out for our good and His glory...it wrote prophetically on paper. I held it tight to my chest and even wrote it on my wrists to remind me when my head fell....
But it showed itself tattered from the weathering this time around.
We all knew how a second child with this disease could plummet the already strained forces at work in our home. Raising one child on terminal life support, fighting forward treatment, trying to love and honor our other three children....what was God thinking? What was He doing I so desperately yearned to know.
I had a precious woman, a dear friend, come pray over Vivian at church. She placed her hands on my tummy after an alter call one Sunday morning. Eric and I found ourselves face first sobbing at Father's feet, at the bottom of the alter, for all the heavy unknowns to come.
She placed both her hands on my tummy, poured out praise and a prophetic prayer of strength, healing, and gratitude over this new life. Thanking Father for what He was doing and for the health this child would have. After she finished, she looked me in the eyes and said with such assured vigor, "this child is going to be healthy, I just know she will be healthy".
If only I had faith like she had, I remember thinking deep down.
I felt such peace...such hope...if she was sure...it must be true. She was the most prophetic woman I knew. She had such powerful prayers. Surely they would reach the thrown of the all mighty, just encase mine were missing Him.
The days moving forward, I never let myself think of Vivian being sick. I only thought of her in full health. Doing normal baby things. Meeting normal baby milestones.
When the thought of having a second child...
Sick...
Suffering...
Dying daily...
I quickly shut the thought down before it could grow roots...before it could produce fruit...before it could have the power to hold our peace captive.
Most days I would just fight the feeling with hope filled assurance that Father knew....
He knew how far past our limit we already were.
He wouldn't possibly give us a second child with this terrible diagnosis.
"Is he -- safe?.....
'Course he isn't safe.
But he is good.
He is king..."
- The Lion, the Witch and the Wardrobe
I had labored with Vivian all morning. The team checked every hour to make sure things were progressing. My water had been broken and things were progressing, but not very well. Every attempt to have her sit into the birthing canal did not avail. She kept presenting "sunny side up" my doctor would relay. And after multiple hours and much to my doctors' dismay, a c section was deemed necessary.
All my other four births, including Drake, were traditional births. Vivian was the first c section I would experience. I really didn't know what to expect.
My doctor was an older man, scruff and tough. He never gave me an inch of sympathy when it came to my pregnancy pains or "woe is me" feelings resulting from raising a human inside my body. I am not a large woman, but I do have a longer torso enabling room for the babies to grow comfortably. The hardest part, is most of our babies resemble my husband's side, so the extra torso length is quickly abated by the extra long legs and head to rump each little presents with.
I once was telling my OB of all the exhaustion I felt. I was well into one of my pregnancies. Large, swollen, tired, and a little defeated. I talked him through all the pains. He said nothing and busied himself around the exam room. He finally looked up, and with a hollow expression asked me what kind of cheese I liked? I, at the time, was thirty something weeks pregnant, and constipation being a real thing in any stage of pregnancy, couldn't for the life of me think why he wanted to know what kind of cheese I liked. "Cheese?!", I responded. "Dr. D, I don't want any cheese. What does that have to do with anything anyway?" He looked very calmly at me and replied, "I just wanted to know what kind of cheese you wanted to go with all your whining."
Eric's eye got as big as saucers as he was sitting just arms reach from me in the exam room. He said later that day he actually feared for Dr. D's head as I was very possible to squish it off his sholders as pregnant as I was. I laugh now when I recall that man. He reminded me of my father I think. Mean as a snake and good as gold all at the same time. Probably why I put up with him all those years, especially in such a vulnerable time of bringing a baby into the world.
This hour though, Dr. D was not making jokes like his normal charismatic self. All he could keep repeating was, "Tarah, I am sorry....I am so sorry. So sorry.... We will get her here safely. I am going to get ready. Someone will come get Eric so he can go with you."
I kep thinking, what was he being so sensitive about? I already have an epideral, Vivian is not in any distress. What is the big deal? Women have these all the time. Right?
Minutes after the call had been made, a team came to prep me for the surgery as another arm came to take Eric to get him ready. An anesthesiologist and his assistant came with a host of syringes attached to a board mounted on a rolling cart. It was a wild contraption. He resembled a musician playing his piano with different keys being stroked to mirror the ice cold concoctions I could feel running down my spine every time he would stroke a key.
At this stage, there was no mention of things to come. If Vivian would be sick? If she was healthy. All plans after birth had been discussed between Eric, myself, Dr. D as well as our team of neurology and genetics that was in the neighboring area. We had chosen to delivery in Spartanburg as to allow for our long standing OB to deliver her. But if she showed any sickness, we would immediately transfer her to our doctors in Greenville. They were the only physicians in the state that had any experience with this disease. Due to its rarity, that experience came predominately, if not completely, from our son, Drake.
Now was whirling of doors and monitors beeping as my bed was wheeled through the halls. The cold feel of the exam room, and me being transfered from bed to operating table. The cold salve being rubbed on my stomach, the big blue smothering veil draped so close to my face I could feel it laying on my chin. My arms laid out to each side and strapped in with what felt like a belt.
I wanted so desperately to scream for Eric. Why was he not here yet? Would he be here in time? The farthest thing from my mind was the days to come. All the medical decisions coming. The critical, around the clock, care that Vivian may require.
Our next big hurdle was getting this little girl safely out of me.
I was rubbing my feet together at the bottom of the opperating table. Trying to grasp how I was going to not feel the cutting of my stomach, just a few short feet from the toes I could absolutely still feel, and move freely.
I could feel my pulse ringing in my ears.
I wanted to stand up.
I wanted to catch my breath.
Then, Eric entered covered in his scrubs...
Thank God he found us.
Thank God he was here....
Everything is going to be ok....
We can do this....
We can do this...
My doctor asked if I could feel the tugging he was doing on my skin. It was such an odd feeling. Someone pulling and pushing on your body, but not feeling the pain of the blade as it cut through layers upon layers of flesh.
Most babies come into this world, vibrant and thriving from the careful cultivation of a mother's womb. Cutting of the cord, the baby's first breath of oxygen, the cascade of effects that launch the baby into its place in the world.
Meticulously put together by Father, like a masterpiece crafted to mirror His inconceivable glory.
Vivian shared this too. She was perfect in everyway. Ten little fingers, ten little toes. A precious, petite face. Mommy's dark hair. Daddy's blue eyes. Her urgency to nurse. Her responsiveness to touch...
But her future was not telling itself yet.
Cutting her cord could mean cutting her from the very life source that was sustaining her body and modulating her little brain.
The hours from this moment could be acting as a pivital part of her story of redemption, or a mounting bulldozer of cause and effects that would soon render her unable to breathe.
All apart of His plan for her....
All apart of His plan for our family.
All apart of His plan for our good and His glory.
Most children with NKH have only hours to days after birth before they are in a coma. The severe mutations render the enzyme complex almost completely void producing no active protein.
Now, we knew what to look for. With Drake we had no idea. I still cringe, years later, when I look back at his baby pictures.
Hours old and blue fingernails.
I had no medical training, we had no way to know, we had no warning.
Now we did....
but still,
we had no treatment.
To be continued....
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