Tuesday, March 27, 2012

Happy Birthday Wil

You are two! How is this possible?!? We celebrated YOU last Sunday, March 25. We had a fishie party because you're really into fish these days. Here are the cupcakes I made you... I tried to be Super-Mom (and grandma tried to be super-Nama) by making these a few days early and freezing them. They were cute until the M&M's started to melt when I took them out of the freezer. Then the fish started looking like blobs. Colorful blobs, at least. There is NO reason for me to be confessing this to you, but darn, we tried so hard.
We decorated, of course!
Those streamers are suppose to be waves.
You said, "oh wow" when you noticed them.
All of your grandparents came. Uncle Nino and Auntie Ala came too. You got to invite one friend... you chose your BFF Bronson, of course. Thank goodness you two are such great friends because Bronson's Mommy is my best friend... funny how that works out!

You got an obnoxious amount of fabulous gifts: baseball gear, a new kite, a bubble lawn mower, a new picnic table for the deck, a beautiful hand-crafted wooden rocking chair from Grandpa Fontana (Bumpa), new clothes, books, summer beach gear, and a whole lot more!

Your Grandpa Geurts (Poppa) made you a sandbox. You helped Daddy and Poppa build it.
You loved it immediately. Hopefully this will keep you in one place this summer!
You also got a brand-new, big boy bike from your Uncle Nino.
Every boy needs a bike for his second birthday, right ?!
You even blew out your candle all by yourself this year.
Is it normal that this makes me want to cry. How did you get so big?
What a difference a year makes!
But, I will admit, I think your most favorite present this year has to be your little brother. I honestly cannot believe how much you adore him. Just a secret between you and me... I thought you'd be a wreck upon his arrival. You know, melt-down city, totally jealous. I didn't think you'd allow me or your Dad to ever hold him. But, nope. You think he's great!
You are by far, the COOLEST 2 year old I've ever known. The coolest kid I've ever known. You make me laugh out loud everyday. I could sit and stare at you all day too. You are just so amazing!!
I love you, Wilby!!!

Sunday, March 18, 2012

My Buddy

Wil has been loving having his little brother home. He wants to hold him and carry him around and kiss him all over. Needless to say, my full-time job has become locating Wil at all times, but I just can't keep them apart because Wil thinks he's oh, so great. This surprises me because Jayce is mighty boring these days! Here they are during "Tummy Time". Wil joins him daily for this activity and wonders why Jayce won't play. Soon, Wil. Soon you will be able to play with this little man. Until then, you seem quite content with just staring at him and smiling. (And playing with his toys).
Here's another great pic. Just some more snuggle time between the two of them.
Wil wants to 'hold' him constantly.
Wil you inspire me. You inspire me each and every day. It's amazing where you can find strength in times of uncertainty. I find it in my 2 year old constantly. When it comes to Jayce, Wil feels no fear, only love. He has no feelings of anguish or frustration or terror or hopelessness. Only love. Pure, undeniable love. I think of this love often, particularly if I'm feeling mad or scared or sorry for myself and it reminds me that Jayce is ours and that I will love him. That I can love him. That it is safe to love him and surprisingly natural. I have a feeling that my first born, my first love, will continue to inspire me in the coming years.

Thursday, March 8, 2012

I mean, really?

Get a load of these:

It's been a while since my last post, but things have been looking up around here. Jayce's brain scan went as well as could be expected last Monday. His Grade 3 bleed was stable. Stable! Hopefully he will have little to no long-term effects due to this set-back; we can only hope and pray. He has one more follow up scan on Monday, March 12, but the neurosurgeon is not concerned and is feeling optomistic that we're in the clear in that department. Until then, I'll barely be breathing. So, wish me well.

On a lighter note... here's Jayce in his new big boy bed!
It's amazing how good it feels to see your baby in a regular bed, not an incubator.
And no IV fluids or extra wires!!

Jayce also started eating again. His 48 hour fast, which led to days and days of minimal food intake are over! Now he's up to eating nearly 2 ounces every 3 hours (quite a lot for such a little man)! They're pleased with his progress AND his weight gain. He officially weighs 4lbs 9oz, huge I tell ya! ~ Not. At. All.

He's been on his anti-viral medication for 10 days and is doing really well with it. He recently transitioned to the oral medication, which he takes via syringe like a champ. Just sucks it right down, which is good because he'll be taking that twice a day until the end of August. One of the main side-effects to the meds is a low white blood cell count, which means a weakened immune system. So far, his white blood cells have remained stable, which is great news! Hopefully we won't have to worry about that on top of the virus itself.
His platelet levels are also coming up. His last transfusion was last Friday, March 2 and the doctors hope it was his last. After 8 total transfusions, I cannot imagine being done. I keep saying, "you'll transfuse him if he needs it, right?!?" Of course they will, but I just can't believe he could actually be maintaining some of those on his own. Yesterday his platelet count was 116,00 (normal is about 350,000... but, we'll get there) and TODAY his platelet count was 117,000. He went up!!!! He'a NEVER went up! We maintained for 12 hours once, but he's never actually went up. Now, this doesn't mean he won't be down tomorrow, but it's a step in the right direction.

Generally speaking, in every other aspect things are normal. Eating. Sleeping. Pooping. Peeing. You know, regular ol' baby stuff. He's had another visit from the OT who always has something to say or things he should "work on", but we try to remember he is only 2 weeks old. Besides, Adam decided that if an OT would've been evaluating Wil every few days she would've thought he was a moron! That sounds harsh, I know (I thought the same thing), but it's TRUE. We never worked on things with Wil. The kid never actually learned how to "roll over" because I never forced him to have "Tummy Time". I'm assuming he can now, but I've still never worked on it! Hmmm, can Wil roll over? Good question! Jayce sure has a lot of pressure and I'm trying to give him a break. He should technically be in the womb, after all.

Another dig... he failed ANOTHER hearing test, but good friends tell me that their little ones did too and hear just fine, thank you. We know that Jayce's biggest challenge will be his hearing and chances are, he will have some hearing loss if not be profoundly deaf. So like any crazy, scared Mommy, I came home immediately tonight and researched Cochlear Implants. Sign him up, please. They are amazing!

And so it goes... Another week down. Still no crystal ball, darn.

Last night, I was confessing to Adam that I just don't know if I can handle this (all of this), but more specifically... this not knowing what to expect or who Jayce will be. So calmly, my kind, soft-spoken, sweet husband spoke up and said, "he'll be our kid". And that's the truth. That's all we know. It's funny. So many people have told me how strong I have been these past 2 weeks. So not true. I got a letter from a dear friend who went through a similar situation nearly 7 years ago. She wrote about how she lived during those trying times and it PERFECTLY describes me: eyes closed, putting one foot in front of the other; not strength... survival, and only because I have to. I so admire Adam's strength and hopefulness. What would I do without him?

Jayce really is doing so well. It's hard to remember that because with all the good, we usually have something not so good come up each day. We're hoping that ends soon. The doctors hope to send him home on Monday! Monday, March 12 (the day of my scheduled induction). He will be 18 days old and our family will be together, finally! We shall see. Keep up the good work, Jayce!

Friday, March 2, 2012

Happy Birthday, Jayce

Yesterday we celebrated one whole week with our little, fighter.

Has it only been one week?

Dear Jayce,

It's been a few days since my last letter, but yet it feels like time is moving so slowly. It feels like we've known you for years and that we've been facing uncertainties for just as long. Here are some updates all about you!

We'll start with the good (yes, there is some!). You're cute!! So darn cute! You could definitely use some plumping up, but you have this demeanor about you... this peacefulness (even through all the yuck) that just makes me want to scoop you up and carry you on out of there! I love it when you open your eyes and stare up at me and when you search the room looking for your Daddy. You also have this ability to arrange yourself in the sweetest positions. You just look so comfy! Here's a picture of you taken yesterday on your birthday... see what I mean?!?
More good news: you've kicked jaundice's butt! You've survived exactly 7 IV insertions (3 in your tiny arm, 2 in your foot, and 2 in your scalp... yes! in the top of your little head). I'd like to mention that I had 3 IV's when I was in labor with you and could've cried each time they were placing them. You sure are tough! Now you have a PIC line; I don't understand what that is, but apparently they don't come out as much as IV's, think IV meets cathedar, I guess. It goes in your arm and runs next to your heart.

You've also had 5 platlet transfusions already and we're anticipating many, many more. You've had 2 important eye exams that you've passed with flying colors and you met your first Occupational Therapist who scored you "within normal limits considering your level of prematurity and medical condition". OT's will soon become the 'norm' in your life. You've also started your Anti-viral medication, which will hopefully kill off all of that nasty CMV that is in your little body. That medicine is given through your IV twice a day. We'll be giving it to you orally when you come home for the next 6 months, yes, 6 months, not weeks, but bring it on! The longer you're medicated, the more of a chance we have to get rid of that virus.

In other news, you've had some trouble with your belly (ie~ intestines & stomach), so you were put on a strict "no food, only IV fluids" diet for 48 hours. Now you're up to eating 3ml of food every 3 hours (poor little man, you were eating close to 35ml every 3 hours just last weekend). Hopefully we can get this under control so you can do one of your favorite things: EAT!

Yesterday you had a basic hearing screening, which you bombed, but we anticipated as much. We were reminded that it is a rather simple test that some otherwise "healthy" babies fail, so the results are not necessarily conclusive. We'll know more about your hearing loss when we visit with an audiologist in the coming months.

Yesterday also included another head ultrasound. They were checking for calcifications on your brain, which is caused by CMV. You had none at your first ultrasound (given at 12 hours old) and the doctors told us there was a good chance we wouldn't see anything now either. The good news is, they were right! No calcifications. Instead (in good ol' Jayce "drive your parents crazy nuts and paranoid and scared" fashion) the doctors found a Grade 3 bleed on your brain.

Now, 7 days ago this news would've done me in. Send me to the looney bin, "done me in". Now, I just take it with a grain of salt. I think God is reminding us (just about every other day) that we just don't know what the future holds for you, little man. We get a lot of "I wish I had a magic ball", "I wish I could predict the future", and "We just don't know if this will have any long-term nuerological effects on Jayce" answers. We get these answers about EVERYTHING. If I think about these comments too long, they can drive me crazy, instead I TRY to focus on the positive and just wait. You probably don't know this about me yet, but I'm bossy. I'm bossy and organized and anal retentive and a planner. You really are giving me a run for my money. I just have no control over anything, which is the hardest part.

The good news about this brain bleed is that it is not on your actual brain. It is in the ventrical space, which means that any specific area of your brain has not necessarily been 'damaged'. However, this space can fill up with too much blood and cause pressure to build on your brain. The doctors are watching this closely. Apparently there are things they can do if too much pressure builds, like place a shunt (whatever that is) inside your brain. Needless to say, the pediatric nuero-surgeon is invovled in your case now and watching you closely. Hopefully this bleed will begin to heal itself. Until then, we wait... story of our lives. You have a repeat cranial ultrasound on Monday to see if it's getting worse or if more bleeding in other areas of your brain is occurring. Jeez!

We just want you to come home. We want you to come home so that we can start our lives with you. Daddy and I played with your brother Wil last night and cannot imagine playing any differently with you. Once you're home we'll be able to see you learn and grow and do normal baby stuff. Those moments will be cherished. I didn't realize when your brother was a baby how absolutely amazing it was when he cooed, smiled, giggled, sat up and walked. I guess we took them for granted. Those moments were just expected. However, those are the moments we don't know if we'll get with you, so everything you do will be a triumph. A real milestone. Until next time... love to my little warrior, Jayce.