Hello again...

little boy! I wanted to write you another letter because things have been good here. Good, I tell ya. Now, you know me... when things feel good, I get a little scared. But, gosh I'm so excited with how well you're doing, I decided to write it down. Cheer you on a bit, ya know!!

I feel like there is a moment everyday when I look at you and feel completely amazed. Amazed with how strong you are. How happy you are. And how much you've overcome.

I never have to remind myself what we were faced with upon your birth. I remember writing in my very first post about You that the doctors told us the morning you were born that you may never walk or talk, see or hear. While you were in the hospital, the future was too far away. It didn't cross my mind much. All I wanted was to bring you home. But, when we brought you home, it was all I could think about. The fear of the unknown and the devastation those possibilities brought was all-consuming for me. I just wanted you to be 'normal'. I'm sorry if that's wrong, but that's all I wanted. All the good - family vacations, walks to the park, bedtime stories... and I wanted the not-so-good too - the tantrums, the fighting between brothers, and those awful bedtimes when you won't stay in your room!

Each day, I was trying to prepare myself. If I was ok, you would be too. So would your brother. So would your Dad. If I loved you, others would too. If I believed in you, others would too. I tried to find peace, but it was too hard. Luckily, you pulled through. You encouraged me to hold on. At first with your smiles. It was like you could feel when I needed one. You could feel me needing some kind of connection; a clue that you were 'in there'.  And so it began... the milestones. Each one more precious than the one before it. The milestones I completely overlooked with your brother. The milestones that some Moms may even miss. Each one I held on to and checked off my list. You were making sounds. Following objects; left, right, up and down. You found your hands. You tugged at your blankie. You moved your arms and legs equally. You held your head up and looked around. You rolled over (now I can say it... you ROLL OVER ~ regularly). You folded your hands and reached for toys (crossing the mid-line and all!!! Can you tell I've observed some mighty fabulous OT's in my day!?!) You sit in your Bumbo and your Jumperoo and you're even starting to sit up on your own!! I'm sorry I doubted these things. I'm sorry I doubted you for a minute! It's amazing, really.

I cannot believe how much you've accomplished already. I was so worried about the sitting. Why? I don't know. I'm just crazy like that, I guess. I don't know why I didn't think you'd sit up, but I just knew it was big. Kind of like walking. I will be a wreck until you walk. OK, not a wreck, but it will be on my mind always. It's my last goal. My last "MUST" for you. Will you do it?!? I sure hope so!


For now, things are looking up! You're right on track for a 4 month old. No developmental delays yet. The chances of you having some delays (for the rest of your life, really) are quite possible because you were a premie, you were born with an infection and you had an intraventricular brain bleed. You've got a lot to fight, but my God, you just keep fighting.







We did visit the Children's Hospital this week though, to learn more about your hearing loss. You endured a sedated ABR (auditory brain response test ~ pretty self-explanatory). You were given the same two hour test at 7 weeks old, which is what was used to confirm your hearing loss, however, you were not sedated for the procedure. They wanted to test you again now that you're older (and have been medicated) to see if your loss has improved, but more importantly to determine the settings for your hearing aids, which you'll be fitted for in the next 2 weeks. (Looong, run-on sentence. Sorry.) The test was yucky! The worst part: IV's. I've had my fair share of watching you be stuck with IV's in your short life, so I wasn't present for that procedure (it was Daddy's job). But other than that, you were a trooper! You had a hard time waking up though. Apparently you like that kind of nap! Go figure. Could I get some of that for you on a daily basis!?!

Both arms and one foot were bandaged after a numbing cream was applied to help with that yucky IV.

All hooked up. Work brain, work!

Come back, little boy! IV, blood pressure cuff, and some oxygen.

Here's what we found: you are still profoundly deaf in your right ear. Yep. Nothing. No response to anything. You could be standing next to a jet engine and not hear a thing. But, now here's the interesting part... your left ear has improved. Strange, but exciting! Was it your anti-viral medication or just brain maturation? Don't ask because there's a major debate going on in our house about that these days! Your loss is considered Moderate to Severe, which really doesn't change a lot in the grand scheme of things (you're still deaf), but the good news is, you may respond to a hearing aid in that ear! It also may explain why sometimes we think you're hearing, especailly  your Daddy's voice. You are able to hear low frequency sounds at mid-level decibals. Think a man's regular talking voice (standing right next to your ear). Now, you don't hear like me because your higher frequency sounds are not heard. If you don't have both, you don't have speech (I guess... I've got to research this a bit more). The audiologist tried to explain which letters are low frequency sounds (i.e. m, j and d) and which letters are high frequency sounds (f, s, and th). Of course the others fall somewhere in between. In first grade teacher talk... you cannot blend sounds to make words because you don't hear all of the sounds. Eek! Just thought of something... reading may be tricky, but we'll cross that bridge when we get to it. So, just because you are able to hear some sound now, it's not in the form of words, but really, what 4 month old understands words!?! We're just happy you can hear anything at all! Now, with a hearing aid, will you hear more? Probably! Some speech? Maybe... we'll just have to wait and see. You'll be fitted for hearing aids for both ears soon. Because your loss is so profound in your right ear, you won't have any benefit from it, but you will learn to have something on your ear physically, which you'll have to get used to if you will be getting a cochlear implant and THAT'S the plan!! 

After dinner smile. On the menu tonight: sweet potatoes!

Well, jeesh. I started this post thinking, "I'll just give an update about your latest hearing test", but as usual, my fingers got away from me once I got started. I've learned in the last almost 5 months (what?) that when I'm having a good day, I have to keep it. I have to store it in my back pocket, or simply right it down, so I can go back to it when a bad day comes. Bad days do come. Still. But, such is life. Let's hold on though, little man. We'll hold on together. We will live.

The Geurts' TOP 10...

Here they are folks!! The top 10 clues that your 2-year-old is ready for potty-training:

10. He goes to the bathroom (in his diaper) in private. You know, like behind the furniture or behind the door. When asked what he's doing (while red-faced and grunting) a simple "nothing" is all you get, but you know darn well he's filling his pants.

9. He is officially wearing a size 6 diaper. Yep. All 34 pounds of him. That's as big as they come... "so, then what?" you're probably wondering... Hmmm, I have no idea.

8. He can climb onto the changing table all by himself. Enough said.

7. He calls his own poop disgusting.

6. He requests that you be "gentle" while you wipe his big butt.

5. He requests butt-cream. Regularly.

4.  He pees in the bath tub EVERY night. Directly following our regular, "let's try to go potty in the toilet routine".

3.  He digs his Thomas and Cars undies. Well, he only enjoys wearing them OVER his diaper. Like, as pants for bedtime. You can blame that brilliant idea on his father who "couldn't find any pajama bottoms in his dresser" one night and thought underwear would do. {P.S. The pile of pajamas was in a basket at the end of the bed. Don't look there, dear, or (sigh) put them away!}

2.  He enjoys tugging on, playing with, and 'flicking' his you-know-what while placed in front of the toilet... or anywhere, really.

AND, the number 1 clue that your child is ready for potty training...

1. His father and I can NEVER go to the bathroom alone. If you don't have children, you may find this strange. If you do have kids, you understand. He's all like, "poopy Mommy, or pee? Me see it!?!  I flush, peez?!?" Sorry if that was too much information...

However, the ONLY reason your child is NOT potty-trained: He totally and completely could care less entirely. Ugh!

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...

Poop.

A scene from my kitchen window... My thoughts are as follows:

"Oh, no. Yes, Wil that is a pile of Gravel's poop. What is he thinking?"

"Please don't touch it. Please don't touch it."

"Oh.My.God. He's totally trying to scoop it up with his shovel."

(Insert every swear word you can think of ~ I said them out loud.)

"I'll wash his hands later, I guess. I'll wash them really, really good."

One man's trash...

is another man's treasure!

Jayce has been experimenting with some of Wil's old toys.

The Jumperoo!

The picture's blurry and my son looks a bit intoxicated,

but it's because he LOVES bouncing up and down.

He's literally laughing out loud in this picture!

Clothes! We just opened BOX 2 of 8.

It's labeled Summer 2012 (0-6 months).

I was so excited to get rid of a box of clothes.

Then I realized, I needed to put Wil's Winter clothes away...

So, my BOX "Summer 2012 (0-6 months clothes)" was re-labeled ~

Winter 2013-2014 (18-24 months).

Someday I will have a MASSIVE rummage sale!

Jayce has also been spending some time in the Bumbo seat.

Remember that!?! Wil loved it!

Jayce, not so much.

He enjoys the toys I place in front of him for a few moments.

Then, the crying begins.

Today, he cried himself to sleep.

Then I felt guilty. But, it's pretty cute!

Wil's not quite sure if he's ready to give all of these things up, though.

When I put Jayce down for a nap (after he snuggled up in his Bumbo), Wil thought it was his turn to sit in it. I tried to explain he was too big. He was mighty frustrated when he couldn't get out!

Then we both laughed about it.

Jayce is even trying to steal Wil's best buds from the neighborhood!

Tyler and Bryce love to hang out with Jayce, but Wil's in luck...

they realize sooner or later that he's really not a whole barrel of fun for too long.

Keep on, Keepin' On!

This post may be a little bit obnoxious, but you're just getting so big, Jayce! You can do so much too. We have been having so much fun with you so I just had to share some great pictures.

Here you are chilling out on the counter (away from your brother a bit, who inevitably pulls up a chair to be right next to you).

We're even hearing a few giggles and LOTS of talking to yourself!

I just love that HUGE smiley face!

I can't believe that I ever thought you may never smile at me. It absolutely makes my day. I'm bursting with delight whenever I see it (get use to it... I'll be feeling this way EVERYTIME you do something new that we weren't sure you'd do!)

Your silly brother. You love him, but always want to make sure you've got one eye on him.

Ooooh, those two big dimples.

 You've been digging your Tummy Time lately too. Last Wednesday, while Grandma was visiting you decided to roll over! Yep, 9 weeks old and already rolling over. Well, not rolling over... "rolled over", as in once. I'm not sure you realized you even did it, but you've been trying to figure out how it happened ever since. I think you're trying to prove me wrong already. Like, relax Mom, I'm just fine. I can do everything a regular kid can do!

Last week, we had MANY appointments. You visited your doctor for your 2 month check-up. You weighed over 9 pounds, had two yucky shots (and a blood draw), and showed Dr. Skladzien everything you could do.

We were visited by the Birth To 3 program where you were given a brief evaluation testing your fine motor, gross motor, and communication skills. You scored perfectly! You're doing everything a 2 month old should be. No developmental delays yet! At this time, you will not be receiving any OT or PT, but your Speech Pathologist is coming to do some more tests next week. It'll be interesting to see how a Speech Therapist works with a 2 month old...

You were circumcised (finally). Yuck!

You also had your first MRI (horrible for a Mommy to watch). We met with the Neuro Surgeon who has been watching you closely to make sure that your brain bleed did not turn into hydrocephalus, which can cause pressure on the brain. The doctor walked in last Thursday, sat down and said, "he's normal, you can go home now". Just like that. What?!? I've been freaking out about this for two months and you tell me this?!? Yep. "He's fine". Of course, I had some questions (even though your Dad wanted to run ~ if a neuro surgeon tells you your child is fine, you leave... NO QUESTIONS, I guess). We'll visit him again when you're 6 months old, but he doesn't think we ever need to do another MRI. He's really not worried about you. This is GOOD! That's all I'm going to write. I'm trying to be less worried about things... we've have no crystal ball, but you continue to get great reports and continue to AMAZE us!

Knock on wood, but I think you may just be OK, Jayce. It's the first time since you've been born that I'm actually letting myself believe this. With everything they prepared us for back in February, it was hard to imagine a growing, happy baby. We just weren't sure what would be. Now that time is passing (still rather slowly, if you ask me) I'm starting to see you as "normal". I don't like to use that word, but all Moms know what I mean by "normal".  Of course, there's the hearing, which reminds us that you really were/are fighting a virus, but gosh, maybe this really will be it. OK, I'm going to stop saying that because I'm already getting nervous that I may be jinxing myself. Yep, I'm still a bit of a wreck.

In other fun news, here's your brother, rocking his Off Road Racer T-shirt.

AND... his pink toes.

How could I resist when your brother says, "oooh, nice Momma. Me please?"

Who's Who?

I knew they looked alike, but WOW!
The more Jayce grows, the more I see it.
Do you?
I promise... the following pairs of photos are two different kids!

Jayce is more rolly, whereas Wil is more round.

Wil's ears are much bigger too!

Everything else is pretty much the same.

But, Jayce totally wins in the dimple department!

Sweet Baby Jayce...

It's been a while since my last letter, mostly because we've been busy being a family of four.

It's great to have you home!

You enjoy resting in your bouncy seat, which is strategically placed on our kitchen counter because of your brother's constant desire to be next to you. You are "over-exercised" by your crazy mother who insists on plenty of tummy time and 'floor' time each day (not to mention the times I'm moving your arms and legs in aerobic motion). You eat like a little champ, between 4~5 ounces every 3ish hours (sometimes you give me four hours at night, thank GOD!), which has resulted in amazing weight gain over the last 5 1/2 weeks. You weigh 8lbs 9oz. A regular ol' beefcake to us!

You've kept us busy since we've brought you home. You've had weekly appointments with your 'regular' doctor to check your weight gain, head circumfrence, and blood count. Your medication has done a number on your red blood cells and you've been battling anemia for weeks, not to mention a weakend immune system. Here's a picture of you after one of those blood draws. Gosh, you're tough!

Unfortunately, you will continue to have weekly lab visits... my poor, baby boy.

You've also visited the neoro-surgeon, urology, audiology, and your new infectious desease doctor. Next week, you'll be visited by your first Occupational Therapist at home, have your first MRI to check that darn brain bleed, have another hearing test, and have your 2 month check-up, which means immunizations.  Yep. We'll just chalk next week up as the yuckiest one yet. You'll finally have a week off and then to optometry we go... that one should be a piece of cake though, we know you can see!!! You're THE most alert baby I've ever witnessed.

Have I told you lately how amazingly strong you are? You are itty-bitty and oh, so strong. You've experienced more in your precious, short life than anyone should ever have to face.

We have learned a little from all of these appointments. Not much because no one can really predict what this virus is doing to your body and brain, but we've learned some. Your infectious desease doctor considers your case "mild". I hold on so tightly to this comment. He says you've got "excellent" muscle tone and that you're doing everything you should be right now.

The other piece of information we received just this past Tuesday, April 17 is that you are severely to profoundly deaf. You endured a three hour test that confirmed your Daddy and Mommy's predictions that you cannot hear. This news was not all that surprising to us, but it's still hard, Jayce. I know you know no different, but I sure do wish you could hear me talking to you and singing to you and especially hear your brother saying "Hi Nayce" every time he lays his eyes on you.

The only good news about your hearing loss is that it's news. Something to grasp in this horrible, horrible time of uncertainty. Now we know. We don't have to go every few months for the next 5 years and think, "is this the day they will tell us you're deaf?" Now that we know, we can have a plan. You have one more test next week to determine what interventions we will begin. You will probably be fitted for your first hearing aids in a few months (if not before) and they've already talked to us about cochlear implants around 12 months of age, if all goes well.

With all of the 'possibilities' looming and with everything we've learned about this virus, the fact that you cannot hear is nothing. Nothing in the grand scheme of things. Totally do-able. Completely fine. All we can do now is hope and pray that this is it. You will run and play and get dirty and fight with your brother and most of all know true happiness and love. That is my wish for you my sweet, little fighter baby.

As the months go on, we'll continue to track your progress, still wondering and worrying each day that all is well. Please, please keep fighting, Jayce. You're stronger than me. You're braver than me, but I know that you are and will continue to make me a better person. You will make everyone you meet better. More compassionate. More caring. More patient. More loving.

Until next time...

Lots of love,

Mommy

Hard Day at the Track

Last weekend, Wil got to go with his Daddy to build the outdoor RC race track. He was thrilled; as was I (it's amazing how easy it is to take care of only one child at a time)! Apparently, Wil was a trooper. He helped haul the dirt to make the jumps and brought his own dump truck to try the course out after its completion. Needless to say... he had no nap that afternoon and fell asleep on the way home (not before a quick stop at McDonald's).

Notice the LARGE fry, which he enjoyed after his double cheeseburger.

Here's a close-up. Bath night for sure.

 Yep. Dirt IN his nose. Gross!