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.


  1. Stefani
    Thank you for sharing this with us. He sure sounds like you...he isn't gonna take this sitting down. I'm glad he takes after you! You are so strong and amazing and so is Jayce. You are so lucky to have Adam and Wil to be on your side, too. We can't wait to have a playdate with you again! Again...let us know what us Norskis can do for you! I'm just a few streets and a heartbeat away! Hug and prayers. Lana

  2. Hi Honey,
    As we read your blog we cry with you, we laugh with you, we feel your hurt and your strength. Jayce has an amazing Mommy and Daddy and an awesome big brother, Wil. He has a family who will luv him sooo much. Grandparents, Great-Grandparents, Aunts, Uncles, and soooooo many cousins. Stay strong! Soon your two little boys will be getting into all kinds of mischief and be driving you crazy and you will pause for just a moment and smile. Lean on your family and friends right now and draw strength, courage, and hope from us. "Always Believe in Angels, Dreams, and Miracles!" We luv u! Sheila and Family

  3. Stef and Adam, and boys... I have been reading this to grandpa and Tim we are praying for Jayce every night, God will give you the strength you need to get thru each and every day... All our Love!
    The Fontana's

  4. Stefani, Adam, Wil, and little Jayce,

    Please know you are in our thoughts and prayers. Levi asks every day how Wil's baby brother is? We cannot wait to see Jayce come home. Please know we are here to help in any way. Even if it is helping with Gravel. All our love and happy thoughts. The Becks

  5. Aww Stef...I wish I could just show up at your bedroom window and fix this...just like I did back in the day with the hubcap ;) Hang in there....I WILL BE THERE ON SUNDAY. Your sweet little guy is such a fighter already...he will continue to amaze you as he grows.
    Love you! Liz

  6. Stefani Jo,
    Thanks for the update. You are so strong! I'm so proud of you and Adam - you are truly a team as you get through this! Jayce is such a cutie-pa-tootie, I wish I could come snuggle him :) Hang in there and please let me know when you want dinner (and maybe a captain and diet) brought over! I LOVE YOU!

  7. Still thinking of you all! Yes, Clara failed her hearing test 3 times before she passed!! Keeping my fingers crossed that everything turns out! Hugs and prayers. Meg, ben, and Clara Sohns