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!


  1. Stefani and Adam,

    You guys are amazingly strong...yes Stef, STRONG!!! The Holland Field Honeys are all pulling for you guys. We all feel helpless that we cannot do more, but are all ready, willing, and able at a moment’s notice. I'm a firm believer that we get our strength from others, when we are faced with unbelievable challenges. You have so many people backing you right now and thus, the strength to make it through this. We are not given more than we can handle. Take care and see you soon Mr. Jayce.

    Nicki Beck

  2. Oh my gosh, if those aren't 3 of the cutest guys I know! Well Jayce is now 2 weeks old. He has made such incredible progress. I'm sure if he could ask I bet he would wonder what all the fuss is about. Wil looks so happy just getting to see his little brother up close. Doesn't he look excited about Jayce? Doesn't even seem to mind sharing his best buddy DaDa with him. You have had many scarey situations and overcome the majority. Continue to reach out to the people who love you and find strength in each other. You have an amazing little family. Love to the 4 of you.

  3. Oh my goodness, instant tears in my eyes when I saw those pictures of Adam, Wil and Jayce together! Amazing! I have been thinking of you guys often and praying for you; I am glad to hear about the great progress Jayce has made. :) Please know that I am here if you need anything.

    Becky LaPlante

  4. Adam definitely got my waterworks flowing this morning. I am so glad you have good news! We pray for you guys every night and hope Jayce comes home soon. xoxo

  5. AJ & Steph,
    Have been following Jayce's story and crying right along with you. However, I also believe God doesn't give you anything you can't handle. You are both amazing people and what a wonderful family you will all be! This will only make you stronger. Remember,children are incredibly adaptable and yes, Jayce probably is wondering what all the fuss is about! He's wondering because he instinctively knows that everything will be fine. I will keep you all in my prayers. Love, Crazy Aunt Sara

  6. Stef....As Rebecca has said many times God gives me the strength to get thru each and every day and each and every new trial. Remember toe lean on your family and friends and more than ever to lean on your Adam.
    God gave him to you to you as he knew that you and Adam together are so strong.
    We are praying for you all each and every night. We need to bring Dad up to see Jayce some day.
    Our Love the Fontana's