Friday, February 22, 2013

One year, Jayce Man, One year...

I realized this morning as I was waking up that it was one year ago today that your journey began. Obviously you weren't born on February 22 (as much as I willed you to come out), but it was one year ago today that it all began...

I remember it like it was yesterday... after weeks of worry and knowing in my heart that something was wrong with my baby... after weeks of doctor appointments trying to convince her that something just didn't feel right... after weeks of no weight gain (I gained 17 pounds while pregnant with you, compared to my (eek!) 39 pounds with Wil)... after nearly 10 full weeks of what I considered decreased fetal movement (I barely felt you move, sometimes for days)... after two ultrasounds to check fetal development and fluid levels... after being hooked up to a Doppler (twice) to monitor heart rate...

After all of those tests kept coming back "normal"...

We were sent to St. Mary's hospital where we were given a more precise ultrasound. The doctor told us you were small. Too small. You needed to come out. Now.

So, you did. The delivery wasn't perfect. You weren't ready. But, after a rather short induction totaling about 7 hours... you were here.

I've already shared your birth story, but now looking back, I know what was wrong...

You were basically swimming in a pool of infection. In a pool of Cytomegalovirus. That sounds terrible, but in reality, it was true. You were just fighting to stay alive. You weren't growing. You weren't moving. It was all you could do to keep your organs working. I'm sorry. I didn't know.

Sometimes I wonder what would've happened if someone would've thought to test me for this virus when I was 22 weeks pregnant to see if I was a carrier of CMV (this is NOT common ~ there is currently no pre-natal testing done for this virus, which is a whole other story for another day).

But, if we had found out that CMV was active in my body and had crossed your placenta... What would've been done?

It scares me to think this because on a bad day, I wonder if they would've suggested termination. You see, many kids born with congenital CMV (cCMV) don't make it and if they do live through delivery and their many days in the NICU, they have many life-long disabilities ~ hearing loss, blindness, mental retardation, motor development delay, and the list goes on and on.  We were literally told 3 hours after your birth that your "worse-case scenario" would be that you may never walk or talk, see of hear. On a bad day, I go back there and wonder what our lives would be like if you were literally plugged into the wall to breathe, were not able to eat, and were laid back in a wheelchair for the rest of your life. This is terrifying because this could have been your life. It is true for some kids born with this infection and by the grace of God, these families are able to carry on and live. Could we?

So, this day has brought me back to a very dark place, a very real place. One that I'm not afraid to reflect on because it makes me appreciate all that you've overcome. The dark inevitably turns to light because of you. My little fighter. There will always be light. This has been your biggest lesson for me. In the depths of despair, in all that seems intolerable, there is hope. There is good and it can be found. You teach me everyday, little mister. More on that in a bit...

But first!

Tomorrow is your birthday. Your brother and I are going to decorate the whole house while you sleep this morning. We bought you presents, invited our entire family and I made you a super ugly cake, but it's ok because it has an elephant on it with its trunk pointing up (for good luck) and it's got royal blue frosting and sprinkles (pixi dust in honor of Miss Nadia) because royal blue is your signature color. It is ugly though! Eek! :) I'll do better next year!

You still keep us hoppin'... just like you did those 18 days you were in the NICU. The next few months will be busy! Your Cochlear Implant is scheduled for next week~ Thursday, February 28. I'm excited and terrified and inspired and sad and thrilled and worried and, and, and! We got your official diagnosis of profound hearing loss on April 17, 2012 and since that day I have been waiting for this surgery. It's going to be amazing!! Your right ear will officially be "turned on" Tuesday, March 26th at 2:00 in the afternoon. It's a three hour process and we will continue to "turn you on" every two weeks until May 9th. Bring on the audiology appointments! 2 hours every two weeks!

You have been fit for your first pair of orthotics and you'll be bringing them home Tuesday. This will help with balance and coordination and proper foot and ankle placement, which will hopefully result in walking! My goal is September... you will be 18 months old! Can you do it?!?

You will also be undergoing Botox treatments in mid-March. Yep. Botox. A doctor will be injecting Botox into your hamstrings (3 pokes in each leg) to relieve some of the spasticity in those muscles. You are so, so tight in your legs, which makes things quite difficult for you. Our hopes are that the Botox will relieve some of the tightness and allow you to move more freely. I could use some of your leftovers because this past year has made my face look like death! :) I worry about this procedure because it's only a quick fix and must be repeated about every 3 months... for how long? Like, forever? We don't know, but they tell us you're a great candidate and that it will help a lot. One day at a time, one procedure at a time, I guess.

And then there's always the normal stuff...  your Physical Therapy and Speech Therapy and "Motor" Therapy (Birth to 3). Right now, you generally have one "type" of therapy a week, but we'll be increasing that to twice a week as summer nears. Did God know this was going to happen back in 2011 when I decided to quit teaching? I think so. Clearly.

Your dreaded Waisman Center appointment is at the end of April, which will more than likely result in a diagnosis of Cerebral Palsy (well, I prefer to use the word Spastic Dyplegia), but we'll cross that bridge when we get to it.

And you have another MRI scheduled for May to check for any late-onset Hydrocephalus due to that brain hemorrhage that occurred while you stayed in the NICU, but hopefully we won't have to visit Dr. Bennie (AFCH neurosurgeon) ever again after that.

So... That's that. Busy, but oh so worth it because it works because you work it! You are one determined little fellow, which brings me back to what you've taught me. There's been so much, buddy. More than I could probably write. You've taught me that it's ok to be sad or mad or disappointed and that it's ok to feel like I'm failing. You've also taught me that I'm not ~ failing, that is. (In other words, you've taught me to be proud, although it's a lot harder to be proud when it's so much easier to sulk ~ I'm working on it). You've taught me strength and determination and to appreciate the little things. You've taught me that it's ok to fail and try again.  But, most importantly, you've taught me to love, even if you're scared or if it seems impossible. I'll only tell you this once, but there was a time back in the beginning when I wasn't sure if I would love you... could love you. It makes me choke up as my fingers hit the keys on this computer because I couldn't fathom it now, but it was true. How things have changed... I love all that is you! And even though I would change it if I could (all of the appointments and procedures and the struggles you've faced and will continue to face) I would never change you and the fact is ~ that IS you.

 As we were leaving the Children's Hospital yesterday and I was standing at the reception desk booking yet another MRI (feeling sorry for myself and for you that "it" still wasn't over), I realized something. Yes. You're deaf and you struggle with movement and you have therapies up the wazoo and appointments and procedures and special plans written just for you and your development, but that's not you at all. YOU are the baby who literally has an entire room full of receptionists and nurses passing you around while you smile and flirt and giggle and gently grab their necklaces for a closer look. YOU are the baby who shrieks with delight when your big brother enters the room. YOU are the baby who waves at everyone, man, woman, and child at the store with a HUGE smile on your face. That is you... NOT CMV or CP or CI's!

I remember telling your Dad that a year ago, if someone would've told me our son would be profoundly deaf and have Cerebral Palsy, I would've been devastated. But, now it's not as hard to take because we know you. At the end of the day, you're still just Jayce. And I'm so glad for that! Thank you for being you.

Coming soon ~ happy birthday pics!

1 comment:

  1. You have had a crazy journey but you have overcome it all. You are always in my thoughts and prayers wishing you the best. I too stay home if i can help you at all in anyway please let me know. your a great mother i totally look up to you. Happy Birthday big boy