Imagine This…

Welcome to the world Apollo Jones Edgar.

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“Congratulations! You have a brand new baby boy!”

“Now, his head is a little small so we’ll keep an eye on that.”

“What this probably means is that some of his sutures have prematurely fused together. Mention this to your pediatrician and just watch the growth to ensure his head continues to grow.”

Off to Google I go…

Craniosynostosis. I have (incorrectly) diagnosed my son thanks to the help of Dr. Google. What this basically means is that if the head doesn’t grow that the sutures may actually be fused. You can have an x-ray to confirm this and may need surgery.

Simple and fairly common. Thank you Dr. Google. Mind at ease.

Weeks go by and he’s the perfect little angel baby.

Two weeks. Perfect.

Three weeks. Perfect. Cries a little.

Four weeks. Crying. A lot. Swaddle, bounce, shhhhh, change the bottle, change the formula. Try everything. Still crying. “Maybe it’s colic.” “Maybe he has a headache.” “Maybe his head can’t grow.”

Five weeks. Crying. Harder and longer.

Six weeks. Screaming. Body stiffening as if in pain. SHRIEKING. Inconsolable.

Ok, that’s it. Time to call the doctor.

This is the moment. Although we had no idea. This is the moment that our lives took a turn in a direction we never would have imagined.

Our pediatrician, after seeing Apollo, hearing his shrieks, seeing his stiffening body and realizing his head had not grown since birth, sends us to get x-rays. We wait patiently for the results and soon get the call that we definitely were not expecting. Our pediatrician calls to tell us she’s spoken with a pediatric neurologist and wants us to leave as soon as we can and head to the emergency room at Children’s Hospital in Birmingham where we will meet with the neurologist and have some more tests done.

In our minds we’re still thinking Craniosynostosis. Maybe it’s just crucial he have surgery right away to prevent damage to the brain as it tries to grow.

Little did we know…

Little did we know that we would be rushing to the emergency room at Children’s Hospital where we would be waiting and waiting and moved to one room and waiting and moved to another room and waiting some more.

Little did we know that after taking my tiny helpless crying six week old baby and strapping him down to a narrow table and sliding him into a giant spinning machine, the doctors would come back in and tell us they had found several areas of calcification on his brain.

“Do you have any questions?”

Do I have any questions?? I have a million and one, but I can’t speak. My mind is racing. Calcification? That’s not good, right? That’s bad. This is bad. What does this mean? Are they sad? They look sad. This must be really bad.

It’s after midnight and while my brain is still racing trying to process this information they tell us a few more things and let us know we’ll be moving to an overnight room where we’ll be able to get some rest and then we’ll begin more tests in the morning and meet with several different doctors.

It’s 3 am and we finally can fall asleep. In shock. Exhausted. Confused. So many unanswered questions.

We’re able to get about three and a half hours of heavily interrupted sleep before we finally are just too awake and anxious for what’s to come to even begin to fall back asleep.

The first doctor to come see us that morning was the neurologist with the CT scan results. And this is when our world turned upside down. She showed us our little babies brain and all of the areas that had been compromised while he was in the womb. She explained that what likely had happened is that he contracted a virus which caused an infection and that he got it from me while I was pregnant. She let us know that our baby would likely be developmentally challenged and could even possibly end up with Cerebral Palsy.

Mind. Blown.

From this point on we saw doctor after doctor. I was asked a million questions. Were you sick while you were pregnant? Do you have a cat? Do you have a litter box? Did you travel out of the country where you might have contracted Zika? Do you remember being bitten by a mosquito? And on and on and on.

We saw so many doctors and heard so many medical terms we’d never heard before. We were going on no sleep, hearing things no parent wants to hear about their new baby. Doctors explaining things to us that, honestly, couldn’t even fully sink in.

It was the longest 24 hours of our lives. But our little man was a trooper through it all. Being poked, prodded and strapped down. He was a trooper.

So in a nutshell, our sweet, precious, brand new baby boy has a rare birth defect called Microcephaly. Right now the doctors are working to try and figure out what exactly caused this to happen. Running tests to figure out what, if any virus might have caused this and possibly looking to genetics as the cause.

We were sent home after 24 hours. And we still have so many questions. We’ve already got four more appointments set up in Birmingham in the next couple of months to find out test results and possible causes. But none of that really matters.

What matters is that we’ve got a beautiful baby boy that we love with all our hearts and we will love him no matter what. Only time will tell what areas of his life will be affected and what sort of delays he may have in development, but for now we just love him for the sweet skooshy kissable baby he is.

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20 Comments

  1. My prayers, thoughts and heart are truly with you!!!!
    You have an abnormally large, string support base and I wish to be included.
    Blessings and prayers go with you, your family and especially Apollo. πŸ™β€οΈ

    Liked by 1 person

  2. Praying for this blessed baby everyday & all his loved ones ..None of us know what each day will bring , one day @ a time & God’s sweet grace will supply all of our needs .

    Liked by 1 person

  3. Just love that little gift from God all you can and turn his condition over to The Great I Am.
    Praying for strength for the entire family to go forth with courage and faith.
    Big hugs, tears, and love to you and the magnificent Apollo.

    Liked by 1 person

  4. Prayers for comfort and wisdom as you and your family raise this precious gift. Allow God to give you direction, answers and mercy as you travel on this journey.
    Phil 4: 4-8 meditate on this😊

    Liked by 1 person

  5. Apollo is beautiful and strong. You and Poe have a beautiful, strong bond. Many, many prayers are going up for all of y’all. Apollo is a blessing and we will all love him everyday of his precious life. I like that you’re writing about this. I think it will be cathartic for you. Love you Jen and Poe.

    Liked by 1 person

  6. CONGRATULATIONS ON BEING CHOSEN BY GOD AS APOLLO’S MOTHER …. LOVE AND TRUST IN THE ALMIGHTY POWERS OF OUR HEAVENLY FATHER AND THE GREATEST PHYSICIAN OF ALL. MAY YOU AND POE AND YOUR FAMILY TRAVEL THIS ROAD WITH WISDOM , MERCY, FAITH, PERSEVERANCE AND LOVE … MAY YOU CONTINUE TO HAVE THE STRENGTH OF GOLIATH AND PLENTY OF ENDURANCE TO CLIMB THE MOUNTAINS AND STROLL THE VALLEY’S HAND IN HAND. THANK YOU FOR SHARING THIS WALK DOWN THIS LONELY ROAD OF QUESTIONS AND PARENTAL NIGHTMARES WITH US. GOD BLESS YOU AND YOUR BEAUTIFUL FAMILY .

    Liked by 1 person

  7. God choose you and Poe to be the parents of Apollo. He doesn’t make mistakes. Take this as a blessing to your family. Please know you have a great community of caring people that truly care about you and will support your family. Prayers for you, Poe and your three ‘gifts from God’. May you find Peace through the storm. Love, Mrs. Kim (Howell)

    Liked by 1 person

  8. I have seen amazing things happen in a child’s life after the doctor told the parents, shortly after he was born, that he would never be able to function because half of his brain was damaged at birth. To everyone’s amazement, the other undamaged half took over and that child is now in college. Don’t ever give up or doubt what God can do. Please know I’m praying for you, your family and your precious baby boy.

    Liked by 1 person

  9. Jennifer, God gave you and Poe such a special gift in little Apollo. You both are special people who can love beyond limits. Please remember that God is able to do beyond exceedingly great things beyond our imagination. Know that you all are loved and have a community ready to walk with you on this journey. Prayers daily for all.

    Liked by 1 person

  10. My heart is literally feeling everything you just described. The fears, the unknown diagnosis at the time , the Dr Google that the Dr’s warned you about but as soon as you got out of their sight, off to Dr Google you found yourself diagnosing your child . Working yourself up a billion times more than you already were. Have I been there, yes I have and you just took me back to a very very familiar place, you even took me as far back to the colic days with my 1st child that I swore I WOULD NEVER FORGET, but you know what 14 years later I did. I also know for a FACT my kid had to have broken the world record for having it the longest .
    We just automatically assume we’re gonna have perfect healthy babes right, until we’re sitting in shock as we’re told our child has a condition that involves there brain πŸ˜”. Your just in shock . And it’s like you said a million questions but you can’t get just one of them to even come out . I want you to have faith during this time and have it like you’ve never had it before !! I’m telling ya if we need to do a bible study at your house and rock babies then so be it . In all seriousness take some ME time find you a good devotion and spend some you and god time everyday just a few minutes . Because I know if I had not had my church family supporting me and encouraging me I would’ve crumbled and broke into a thousand pieces because fear and anxiety would’ve gotten the best of me.
    I always remember wanting to close my eyes and wish what life would look like for us in 8 years how was our life gonna change, how was I gonna survive (and yes that’s thoughts you don’t wanna admit you have but you just do) . Let me tell you DO NOT GIVE UP (YOU HEAR ME,even though you may not know me, lol) . Dr’s don’t always have the answer as cliche as that sounds it’s true . I have a 10 year old little girl that has a very abnormal MRI & we also have a diagnosis as well but SHE does not match her MRI, okay. She did not sit up until she was well well over a year 1/2, okay she was developmentally delayed, we had AFO, SMO leg braces, apnea monitor was lugged around until she was 14 months old in case she quit breathing we could stimulate her and we did have to do that several times . She had a feeding tube and a fondo surgery where her little tummy is now wrapped around her esophagus and she had to have a feeding tube . The Dr’s advised us once is was placed but would never come out well it did and she’s as normal as normal can be .
    We’ve done the genetics testing and she has such a rare finding we may never truly know the cause or the why’s.
    What matters most is for some reason God chose us (antsy anxieters) to be there mothers and that we will be . I’m sorry for the lengthy comment. I want to give you hope to cling onto . I would’ve given anything to have heard of a REAL STORY where sometimes , there is no real doctoral understanding of the how’s or the why’s in a miracle, just knowing that that’s just how BIG OUR GOD really is spoke so much and changed me through the birth of that little girl of mine.
    I’ve got so much more to share with you, I hope you’ll reach out to me, I would love to help and support you in anyway I can .. I get it !!!
    I also wanted to suggest the neurologist we see. She’s known world wide for specializing in this type of diagnosis as well and she’s at Childrens . She’s amazing !!

    Like

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