Thank You

Right before Charlotte was discharged from the NICU, in August, a family entered this scary world of micropreemies. They have one angel baby, and one surviving twin, Bryce, who is still in the NICU at Chester County.

Here's some pictures his mom sent me, along with her email after receiving the Christmas baskets you all helped us put together. (Which were, by the way, fabulous. We had over $300 in gift cards, 15 bibs, 15 bows, and about 100 cards to split among the 15 baskets. My favorite though, had to be the picture sent by a little boy, signed, his name, age 7 5/6. These baskets were awesome. Thank you for all you did to make them possible.)




Dearest Amanda,

We are so touched by the thoughtful gifts and cards. We feel so blessed to have so many people thinking of us. Between the nurses and the Knickerbockers, this

Christmas will be fond memory of kindness we wouldn't have otherwise known.

Please share our gratitude and pictures taken of our Bryce tonight. Your have made our Christmas very special and for that we are forever thankful.

Merry Christmas,
The Kash Family
Jenny, Brian and Bryce

Behind the Scenes

This year for Christmas, we gave our grandparents (Caleb and Charlotte's great-grandparents) a book of pictures from throughout the year. After publishing the book, we realized, to our horror, that we hadn't included a picture of Grandpa Knickerbocker (Peter's father).

I sat for days, going through pictures on the computer, trying to find a picture of him and Charlotte. And I couldn't. I felt horrible. This man, this wonderful, loving father, had visited Charlotte at least once a week when she was in the hospital. It didn't matter if he could only stay for five minutes, he made sure he got a visit in. The nurses and staff often commented on how dedicated he was to Charlotte. He kept family members up to date. He called, he coordinated, he babysat Caleb so we could visit (well, Grandma Knickerbocker babysat, but he helped!). He did so much to get us through such a scary time in our lives and we didn't even have a picture! Racked with guilt, I wondered why.

Why didn't I take the time to snap a picture of my daughter and her grandfather? Charlotte was in the hospital for almost 30 weeks. That's at least 30 opportunities for a photo. And yet, still, I didn't have one.

And then, I realized why.

Grandpa Knickerbocker was the person who was there for Charlotte when no one else could be. When Peter and I were doing things for Caleb, or for ourselves, Grandpa was there. When we were sick, or tired, or beaten down, he was there. When no one else could arrange to sit with our baby, he did. He fielded questions, he kept up to date, he offered support we didn't know we needed. He did so quietly. He did so behind the scenes. He did so without having a picture taken or a mention in a book. He loved (and loves) when we were simply too stretched to offer anything.

Given the choice, I'd love to have a picture of him with Charlotte in the NICU.

But I wouldn't trade it for the love and support he offered us when we couldn't be there.

And I think, that's why Charlotte has made it. We can talk about what a fighter she is, and how far she has come, but really, what it comes down to is this: Charlotte has people who love her. Charlotte has a Grandpa, an Aunt, a Cousin, a Friend, etc who fills in when her parents couldn't. She has people who pick up the slack when someone is burned out. She has such an incredible support system, made up of people who don't even have a picture with her.

I have to think, if we all had "Grandpa Knickerbockers", we'd be in a much, much better place.

We're just so grateful that Charlotte has hers.

So much more than grateful.

Home Again, Home Again

Charlotte came home Christmas Eve, just in time to spend her first Christmas with us. We're so beyond grateful for the Christmas season this year, and for the joy it brings. We also understand how hard of a time this can be for those who do not have their children at home, and we think of them, and pray for comfort, strength, and peace.

Thank you all for being our Christmas Miracle all year round.

We wouldn't know what to do without you.

Her Timing Is All Wrong

Charlotte's back at CHOP today, and we're hoping that they can do something to help with her feeding intolerance. Monday and Tuesday morning of this week, she was gagging and retching so much she turned blue. So we'll see. Knowing Charlotte, she'll behave perfectly and then start things up again, just as soon as she gets home. That's how she rolls :)

Voice

Charlotte had an appointment on Friday with the Ear, Nose and Throat doctor. He stuck a small camera up Charlotte's nose and down into her throat to take a look at her vocal cords and her airway structure.

And here's where we play the Good News/Bad News game.

Good News:
Her reflux appears to be better managed, and her airway is healing. She still has a stridor, but it doesn't appear to be a long term problem. We're hoping that within the next year, her airway will be completely healed from the damage done by reflux, intubation, and all the other crap done to her.

Bad News:
Her paralyzed vocal cord appears to be a permanent condition. The ENT encouraged us to start Sign Language, as it could very likely be her main form of communication. There's also a very real possibility that she will eventually learn to compensate for having vocal cord paralysis and will be able to speak with only one vocal cord. In that case, her voice will most likely be rather soft, and a bit "breath-y".

And that's all we know at this point. We're just rolling with it!

Developmental Clinic

For Charlotte's six month (she'll be six months adjusted next week) visit to the NICU follow up clinic, we got the following results:

For reference, we are hoping that she will eventually score according to her adjusted age. So for this clinic visit, our target was a score of 6 months.

Cognitive: 6 months
Expressive Language: 2.5 months (darn vocal cord paralysis)
Receptive Language: 4 months
Fine Motor Skills: 4 months

We also learned that Charlotte's not fat, she's just short. She weighed in at 7.16 kilos (15.75 pounds) which places her in the 31st percentile for preemies. Her head circumference is in the 5th percentile and her height is not on the chart. So see, those chunky thighs are just storing up energy to get longer. That's what we're telling her at least.

Cha-cha-cha-changes!

Just as an FYI, in the coming days (alright, let's be honest-- weeks) there will be some changes around this ol' blog. I'm setting up a page for common NICU procedures and events for other preemie parents to check out. I'm also going to start having an interview once a week with a fellow preemie activist, aka, preemie parent, preemie support group leader, preemie caregiver, etc.

As we continue to love and learn about this new Preemie world, we realize just how vast it can be. We hope to not only offer a place of comfort and support for other micropreemie and preemie parents, but also, help all of you supporters understand a little bit more about this world. Because even if you don't have a preemie, you are a huge part of our lives. The support you have offered has literally carried us through the past 10 months. If we can give any tiny bit of insight back to you, then we will have succeeded.

Y'all are awesome.

Stay tuned for some great things!