Friday, June 22, 2012

Mr. Jayce.

aka... "Naycer" (according to your brother).

It's been a long time since my last letter/update. We've been busy and to be perfectly honest, I never feel confident enough to write to you because every other day I give myself something new to worry about. I'm sorry about that. I'm working on it!

You're pretty darn cute, if I do say so myself. Still small, though. You were just shy of 12 pounds at your appointment last week. Monday, June 25th we have your 4 month check-up (yes! 4 month check-up!) so we'll see how much more you've grown.

Since my last note, we've visited an opthamologist... twice. I think I was over-confident for our initial appointment because we were surprised to hear that you had a small scar behind your left eye that "could cause vision problems". CMV causes cataracts and inflammation around the eye, which can lead to blindness in sympotmatic, congenital CMV patients (like yourself). Of course "blindness" was not even mentioned, the doctor just simply told us to return in 4 weeks and that she would continue to "monitor" you. She was happy to hear that you were taking medication, hopefully it would help and the fact that you've been medicated since your 4th day of life and will continue to be until August was a plus. However, I assumed the worse, as most (crazy) mommies would and went home to research. By our next appointment, I had a list of questions a mile long so that I could prepare myself for any scenario. I researched retinitis, macular scarring, and CMV-related blindness. I learned that the blindness could occur over many years, starting with night vision loss, then peripheral vision loss and then total blindness. The only ray of hope I had was that this process could take years.

We went in to the appointment (I brought your father this time because I learned that I'm waaaaaay to vulnerable to attend these on my own). She answered a few of my questions, but really just wanted to take a look at you. Let me tell you, I felt so incredibly guilty for worrying while I watched this exam (for a second time) ~ the eye exams have been way worse than any blood draw, worse than all of the hearing tests, worse than people pulling on you and poking at you, and even worse than seeing you put in that MRI machine. OK. Maybe not as bad as that first cranial ultrasound, but still bad. The assistant swaddles you really, really snug (normally you'd enjoy this, but not now). She literally lays on top of you and holds your head still. The doctor (who I really like, by the way) then prys your little eyes open with her fingers and then with a metal device because you refuse to open them for her. You cry and cry. It takes about 20 minutes. As I'm writing this, it reminds me how bad it really was. I still cannot believe what you've went through in your short life.

Long story short, well, not so short really. All of my worrying, all of my questions, all of my fear for your future... gone. The scar behind your eye was gone. Gone. Ok then. Great! That's all I'm going to write because if I get too excited, I get scared that someone's going to take it away from you. From us. We go back again at the end of August for a full-on eye exam to check for "other things", but the doctor was very pleased and really not worried about you.

I tell ya! You scare us with the worse-case scenarios and then seem to overcome them. All of them! You're one tough cookie!!

The hearing loss is still all we're dealing with at this time. You have another 3 hour hearing test on July 17. This time you'll be sedated for the procedure. Yes. It's going to be awful to watch you be "put under", but they tell me we'll get a super accurate display of your hearing loss issues.

So, July should be easy! I cannot believe how many appoitments you had to attend only weeks ago. At least two a week since we brought you home. I cannot believe that in July we only have one!! Yippeeeee!

August, well, August won't be as fun. We see everyone again in August because you'll be approaching your 6 month birthday! We see the Neuro-Surgeon. The Opthamologist. Birth~3 returns for another OT/PT observation. AND you will be fit for your first pair of hearing aids, and begin your Speech Therapy sessions. Hopefully we'll get all of these out of the way and NEVER have to go back, well with the exception of your hearing loss issues/Speech.

In other news... you've been working hard on your tummy time and sitting up. You're still a little wobbly, in my opinion and I'm worried about your core strength. My latest obsession is sitting and of course, walking. I sure hope you can do these things... in the meantime, you humor me and never really get too mad. I'm sure you're thinking, "this again, Mom? Oh, great!" I've already contacted Birth~3 and they're sending me some handouts with activities to help strengthen your muscles and hopefully help to continue to improve your gross motor skills. You. Will. Walk.

In better news... you smile. Oh, you're so cute when you smile. You smile A LOT! More than I've ever seen a baby smile. Grandma says you smile so hard it's like you could just burst. From the top of your head to the tips of your toes. Your eyes completely light up! You giggle too. Usually when I'm making a funny face at you or if I'm tickling your shoulders. You love your brother. He scares you a bit, because you're never quite sure what he's going to do (me neither, he scares me too!), but you love him and he loves you. Period. I never thought this bond between the two of you would happen so quickly. Wil talks to you all day long... when you sneeze, "God bless, Naycer", when you wake up from a nap, "morning, Naycer!" and if you're playing on your tummy babbling to yourself Wil comes running, "Nayce talk-a-me, Momma!" He's kissing you in the picture to the right, not like you can't tell! :)

You love your swing. You love your bouncy seat. You love to be swaddled. You love your new jungle gym your little, neighbor Jeffrey let you borrow. You love to be cuddled and talked to and carried around. You love your Momma (it's true, you're a Momma's boy). YES!!! You don't enjoy your Bumbo seat, or your carseat, or too much sun in your eyes or breeze on your cheeks. You don't enjoy sleeping during the day either, which is why your bedtime is 6:00pm. I suppose it's because you never want to miss anything and I'm understanding that when you close your eyes, your world shuts off; makes sense, I guess. You had the dreaded "colic" for 10 weeks straight. You screamed every night from 4:00-7:00. It sucked! But, we changed your formula (you're expensive) and established a more consistent bedtime routine and that has helped! I'm not going to jinx it. Please, don't prove me wrong. You've also slept through the night pretty consistently for about 2 weeks. Please, don't prove me wrong on that, too. Aaah, I just shouldn't have said anything.

You have so quickly become our family's greatest challenge and most AMAZING triumph. You inspire us each and every day... to just live. I realized after that eye exam and a crappy visit to your Infectious Disease doctor that I'm not living. Just waiting. I'm waiting for the next shoe to drop, so to speak. Waiting for someone to tell me something ~ anything. You are blind. You are not blind. You will walk. You will not walk. And so on, and so on. In the meantime, I'm missing everything. I'm missing you. How sad is that?!? It's awful, really. My vow to you is to live. To live and to love and to have faith and hope (and maybe a little pixy dust borrowed from your sweet girl, Nadia).

Until next time little boy...


  1. Aaand once again your blog makes me cry! :)

  2. me too. great advice to all of us! keep fighting the fight jayce and momma!
    btw, what formula....maybe i can help you out. facebook me.

  3. you are a pretty amazing person a amazing mom. hang in there hun your doing a awesome job

  4. ...knowing what it feels like to be waiting for the other shoe to drop, and doing some 'living' in between :)

  5. It might not feel like it, but you are healing and living every day. Keep facing things when you can and know that we are all here to help hold you up when you feel like you can't stand any more. The smiles you get from Jayce shows how much you are really there for him. He loves his momma and he is very lucky to have a loving group of family and friends to watch him grow and develop in his own way. Thanks for being so honest with us. Your honesty helps educate us about Jayce,his challenges and triumphs. Along with your fears, challenges and triumphs, as well. I love hearing about Wil and his love for his brother. They will sure be fun to watch as their bond grows stronger! HUGS! Lana