Thursday, April 19, 2012

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,


  1. Oh Stefani, you are so strong. I'm so glad you finally received answers for your little fighter. He is lucky to have such a great mommy like you :)

  2. He is precious and I'm sure already knows how much he's loved. You are a wonderful writer; you manage to capture so much in such short, sweet notes. As a member of the "mom club", I can't relate to your exact scenerio, but know how many millions of feelings a mom can have about her child in a minute. Hang in there. You're doing good work.

  3. It was so good running into you last week at the mall. you look great, the kids are adorable. wow you are a strong mom and i admire you. he is precious. always in my prayers hun

  4. I love you my best friend...thinking about you constantly, and your sweet, beautiful family. I think you will find that all of these tests, pricks, pokes, etc...are going to give you one tough, caring, strong boy. Hang in there! You have lots of family and friends that are here for you whenever you need us! Right everyone?!?!! Liz

  5. I love you Stefani Jo! Thank you for the update on Jayce, I've been praying and praying for that little guy. I'm glad you have some answers and now you can start making a plan...God knows you are a planner! Jayce is so lucky to have you as his advocate, guide, and #1 fan. You are doing an amazing job, keep it up! Liz is right, all your friends and family are here for you. Don't be afraid to ask for help or call when you need someone to talk to. I miss you at SC! Looking forward to playdates this summer with your boys and my baby...2 weeks til due date!

  6. Dear Stefani - thanks so much for letting us all know how Jayce is doing. He is an amazing little man and an inspiration. I think about you all often and keeo you in my prayers. I am glad you are finally getting some answers so that you can move forward. You are doing a wonderful job making sure Jayce gets everything that he needs. Love you!

  7. Stepanie and Adam, you have a beautiful little boy, and I think God picked the right parents to give him the love and care that he needs. We love you both.:-)

  8. My dear amazing Stefani, as I read this entry in your blog in the wee hours of the morning my eyes fill with tears and my heart almost busts with pride at the wonderful Mom I have helped to raise. You are probably awake as well and have our little Jayce all wrapped up in his cozy blanket for one of his feedings. I can just see him staring up at you with those dark little eyes. I envy you! He is our precious little angel and you know I love him ohhh so much. On the day after he was born a dark cloud followed us around as we waited for any words of encouragement about his health issues. To go to bed every night scared to death for your family and this precious child and wake up(if you can sleep)with that same fear is pure torture. There is nothing worse we could face as a Mom than to know that we are not in total control of what is or will happen with our child! But you and Adam joined forces and faced each day together doing whatever it takes to function and take care of your family. I don't think everyone realizes how hard it is to juggle several appointments every week, take care of a two year old, take care of each other and watch this sweet little guy deal with what comes along with these appointments. You both have wrapped your arms around him and cuddled him while watching him endure countless blood draws, ultra sounds, feeding tubes and many other procedures that most don't see in a lifetime. He is a fighter-but he is a fighter because he has you two beside him every step of the way. I can't tell you how proud I am of you Stef, but I always knew (even in your darkest days of fear)that if anyone can see the sunshine beyond that black cloud-it would be you. Eight weeks ago we couldn't imagine Jayce ever weighing almost 9 pounds, smiling at his brother and just being a "normal" 2 month old. But, I thank God every night-he is! You will be right there for Jayce. Teaching, encouraging, and most of all just loving your 2 beautiful little boys. You are an amazing Mommy. You know I have made promises to you before and I have another. I love the 4 of you so much and will continue to do anything I can to help you through the "cloudy" days. But more importantly, I am going to be there for the millions of sunny days with those boys too! I love you Honey. Mom

  9. Stefani Jo, I just want to say that I am so proud to be your cousin. I also love how that everyone says we are so similar. If I grow up and am half of the mother you are, I'll be happy. You have a beautiful family, and you are all so strong. You're right, Jayce is going to make all of us better people. He is so inspiring!
    I can't wait to see you guys sometime soon. I have a personal day saved for a day to visit my favorite, courageous, and beautiful cousin! I think about you every single day. Give the boys and Grav a kiss from cousin Taylor Jo. Miss you. Love you.