Today was a big day.
I dreaded today. Both literally and symbolically.
Today and its back to back specialists appointments burdened my mommy heart.
8:30 a.m. Henry’s Cardiologist Appointment:
Everything looks great. No narrowing of the valve. Shouldn’t ever need any further intervention. Have a nice life. See you in one year just to check up.
Woop Woop!
9:30 a.m. Jill’s Neurologist Appointment:
I’m not quite sure where to start, but I have to say that I *adore* this woman. She was sweet, kind, genuine, and you could tell she knew her business.
And that was BEFORE she told me some possibly AH-mazing news.
So, we chatted, she asked lots of questions about the birth, the pregnancy, Jill’s first days…
she nodded her head listening, all the while cooing and playing with Jill…making her giggle and smile.
“Oh…she is just TOO cute! I can’t stand it!”
(this helped me like her. not gonna lie.)
But as I explained that it was LUCY who had a team of doctors swarming around her…that it was LUCY who’s heart beat was decelerating during the labor…that it was concern for LUCY that ultimately sent me to the operating room…
…all the while, Jill’s heart rate was strong and steady…Jill’s AGPAR scores were almost perfect…Jill took to nursing like a pro…Jill was big, chubby, pink…
per.fect.
And it wasn’t until about 36 hours after her birth that she quit nursing…and the shivering started…
THIS is where the doctor stopped playing with Jill…furrowed her brow…
Long story short, she doesn’t believe that there is ANYTHING wrong with Jill’s brain.
She doesn’t think she has CP.
Basically, if there was brain damage…we would have seen the effects IMMEDIATELY.
She would have been lethargic, droopy, “depressed”…whatever.
But she wouldn’t have been perfectly fine…and THEN all of a sudden go wacky.
Damage is damage. We would have seen *something*.
Her theory: that Jill actually has a metabolic disorder.
Basically, she thinks that there is something in Jill’s system where she doesn’t metabolize her food properly and therefore doesn’t get the nutrients she needs.
We didn’t notice anything for the first 36 hours because before then she had been getting her nutrients from the placenta in the womb.
And it wasn’t until after she was out and EATING that things started going wonky.
This theory would account for the shivering and twitching…the developmental delays…the high liver enzyme numbers….the high blood acid levels…her lack of weight gain…Jill’s teeny tiny-ness…EVERYTHING.
“Think about when you haven’t eaten all day. You get weak and shaky and you don’t feel right. That’s what was happening to Jill, but on a much larger scale. I bet that if they had checked her acid and enzyme levels immediately after birth, they would have been normal…and didn’t skyrocket until after food was introduced…”
She ordered some labs that we will go get done in the morning, and we are waiting on authorization from insurance to get an MRI…”I want to do an MRI to rule out brain damage…but I’m pretty confident that I’m not going to see anything…“
So, what does this all mean?
Well, if she’s right…it could very well be as simple as giving Jill highly concentrated supplements…basically super vitamins that help replace and account for the nutrients she isn’t able to metabolize properly with regular eating.
“I have a feeling that you are going to be just fine little one! We just need to get you the right stuff and you’ll be back to normal!”
It took all of my will power to not scoop this complete stranger into the biggest hug known to mankind.
How was all of this missed? Why did we start going down the Cerebral Palsy road?
She explained that doctors are only as good as the information that they are given. She knows the neurologist that saw Jill in the NICU and said that she is an excellent doctor…but that she likely had no idea that there was a 36 hour window where Jill did not exhibit ANY issues. “I would have said the same exact thing…and that’s where I was thinking in my head as you were talking…until you started talking about those first days where nothing was wrong…that doesn’t happen…that doesn’t fit…you don’t have brain damage, come out perfectly, and then it suddenly shows up two days later…that just doesn’t happen…”
So, somewhere along the line, information was either left out entirely or not conveyed properly. I can totally see how this happened, considering Jill was in a NICU at a completely different hospital than the one where she was born. “…it’s like a really bad game of telephone…if someone along the line gets the message wrong, the whole rest of the team starts going down a road and continues down that path because that’s the information everyone is working off of…without that 36 hour window, Cerebral Palsy IS likely the diagnosis…”
So when do we pop the champagne???
I really, really, really debated posting about this.
It is taking every ounce of my being to not jump for joy, hoop and holler, and otherwise make a complete blubbering fool of myself. Because the reality is…that this is all just her best guess. We haven’t gotten lab work back, we haven’t done the MRI. I am 99% excited to think that my sweet girl may be “fine” after all…but there is that deep, dark 1%…and I want to be realistic. I almost didn’t post this info because we *don’t* really know anything for sure yet…but I realized…you know what?…I am going to post this…because this blog is our journey…the good, the bad, the ugly…the ups and the downs…the roller coaster ride that is our life. So, sharing this potentially INCREDIBLE news and then possibly finding out that…oops…bad theory…so sorry…and the absolute let down that that would be…
…well, that’s part of the journey too.
I’ll keep you updated. We should know more in just a few days when lab results come back.
Either way…I’ll take Jilly any way I can get her.
And either way, God is still good.
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This is AMAZING news!! I’m praying for you guys!
My heart is rejoicing with you tonight! You couldn’t have said it better…Either way, God is still good!
What?? WHAT?? Oh. my. WORD. Keep us posted!! (Like you wouldn’t!)
Oh, so hoping you’re right. So glad to keep up with you. Am finally sending something to you soon. Sorry we didn’t get a chance to stop by our times up to SLO. hugs
I love this person you met with today. Is it wrong to say I am riveted? Because you and your precious family are so much more than a great book I can’t put down. But I seriously am riveted. And praying. Thanks for sharing.
My first instinct was to want to jump up and down excited for you. I can also completely understand why you want to be cautious and not get too worked about the amazing possibility… I’ve got my fingers and toes crossed for you.
Oh Jeannett – this is ABSOLUTELY just thrilling news! I can’t hardly believe it. Praying that this is God’s will… He is so good.
oh, PRAISE GOD!! so so so excited about the possibility! i will be praying for the lab work and mri…oh He is So good.
WOW!!! I love your doctor and am so thankful you found her! Praise God. My husband was making fun of me for crying, but when I explained why he totally got it! Praying for you little ones and you and Andy.
AMAZING! My heart skipped a beat and I still have goosebumps! I too will be praying that the good news continues! What a blessing Jill’s new doctor is!! (..and how perfect that this news falls thisclose to Easter!)
OHEMGEE INDEED!! Praise God!! Oh, I am so praying for you guys!! But for now, I am rejoicing with you as you rejoice!!!
where is the “Like” button? I SO hope that this doctor is on the right track :)
Smiling…hoping… praying! =) yay!
What wonderful news! I hate to think that you’ve been going through so much unnecessary stress and heartache, BUT it would be so great if it were all unnecessary. Happy thoughts to you all. I’m looking forward to your update.
Wonderful news. I’m crying tears of joy for you and Jill and your entire family.
My brother has CP. My brother and sister are twins – born at 31 weeks, in 1969, after 5 days of labor (doctors kept trying to stop it). Tommy was born with hydrocephalus (fluid/water on the brain). If he had been born a week or 2 later, he would have been stillborn. My parents were 20 and 22 years old, married for only 15 months at the time. They were told that IF he survived (I believe they were told his chance of survival was 20%), he would never walk, talk or feed himself.
At 6 weeks old, he had a surgery to place a shunt tube (which would be permanent and would help the fluid drain). 5 days later, mom and dad were told that the surgery failed and that he would die. With God’s help, the shunt suddenly started working. By the time he was 13 months, he had 9 surgeries. By age 2, he was WALKING, TALKING AND FEEDING HIMSELF (take that doctors!). He attended school and excelled – in fact, he was in the gifted program. Life hasnt been easy for him (or for any of us for that matter) BUT his strength is AMAZING and INSPIRING.
Despite all he has faced, he has the biggest heart of anyone I know. As his sister, I attribute a lot of who I am to him. I’m empathetic, compassionate, caring and grateful – because of him. I’ve often wonder why God chose our family, why God chose him…I have to remind myself that many of God’s plans are never understood…this is the essence of FAITH.
Anyway, I just wanted to share because there are some silver linings, even when the news isnt as good. Keeping Jill in our prayers…
What a great God we have! SO rejoicing with you!
This is fantastic news! I am so happy for you and your family but mostly for little Jill…woohoo.
wow! this is insanely exciting. dying for an update. praying praying. xoxoxo
Oh My what great news! I so hope this is the case for dear Jilly!!! YAY!!!
What a mighty God we serve! Looking forward to the results, and either way she is perfect and absolutely adorable.