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!

Button

My friend Stacia has made a "button" for our blog! Share the cuteness. To place the button on your blog do the following:

1. Copy the html from the text box on the right

2. Go to your blog

3. Select "Design"

4. Click "Add a Gadget"

5. Select the "Add html" gadget

6. Paste the Html

7. Click save

Done and done!

If I can do it, you can do it. Believe me.

When It Hits You

I made a decision a while back, maybe in May or so, that I was going to stop wallowing. That I would take Charlotte's diagnosis and roll with it. That no matter what we were told, we would be realistic and make plans to work through her challenges.

For the most part, I feel like we've done it. Of course, we have our days, but really, truly, we are comfortable with the "problems" Charlotte faces. We know that there will be lots and lots and lots of therapy in our future. We also know that no matter what, Charlotte will succeed. It might not be our definition or your definition of success, but it will be her definition of success. And that's what matters.

However, I'm not perfect. There are things that seem to get to me. And in an effort to provide support to any other preemie moms or dads out there, who may or may not read this in the future, I feel like it's our responsibility to document those "things". Because, yeah, we have pity parties some days. Because despite how well Charlotte is doing, sometimes things get to us.

And I'm here to say, that's OK. It's alright to feel defeated at times. It's OK to wonder how everything will work out. It's fine to run to your car and cry your eyes out when you see a child hit a milestone your kid should have hit months ago.

Maybe it's the pregnant mom that gets to you. Or the self-righteous mom who tells you that feeding your child formula is akin to giving them poison without knowing how hard you tried to breastfeed. And you might snap. You might spend hours beating yourself up. And it might take an hour or a day or a week or a month to pull yourself together again. But find a way to do it.

Build a swing set. Write a blog. Join a support group. Start running, or painting, or knitting or prank calling people. Actually, scratch that. Stay away from knitting. Those needles can be dangerous.

Basically, take care of yourself. You have a baby who really, really, really needs you. Sometimes that pressure is just too much. So call one of the nurses from the NICU and beg her to come over and watch your kid while you shower. Or go to the doctor and ask for some medicine or go to the grocery store or finally do some laundry. Do whatever it takes to take care of you.

'Cause you're important. Really.

Still Giddy

This picture has nothing to do with anything, but I know it will make my Bala happy.
And that has everything to do with everything :)

Just had to mention that I'm still so super excited about the news we got regarding Charlotte's eyes. I mean, seriously? So happy about it.

I'm in a "grab my hands, jump up and down, yell, 'Yayyy!!'" kinda mood.

Apparently this post has nothing to do with anything as well.

Eh, it happens.

Uncooperative

We had an upper GI/ G-tube test done yesterday. Basically they insert Barium into Charlotte's belly via the G-tube and see where the barium goes through an x-ray technique called fluoroscopy. Fluoro is a continuous x-ray (kinda like if you had x-ray vision) so you can see all the stuff moving around on the screen.

Charlotte was an angel and performed beautifully during the exam, except for the fact that we were trying to see what her insides look like when she is gagging and refluxing. So just to be ornery, she was totally fine. Once the doctor was certain she didn't have any problems with her nissen, he turned off the fluoro and we placed her back in the stroller and got ready to leave.

Pretty much the second the doctor left the radiation suite, Charlotte started gagging and choking.

Nice.

Way to work with us kid.

The upper GI did show that her nissen is intact. We still don't know why she's having such a difficult time with her feedings, even those delivered via the tube. We have a swallow study (yay for more radiation!) on Friday. The upper GI gave us an image of what happens when food is already in the stomach, the swallow study will give us image of what happens while food is going from the mouth to the stomach.

We also have an endoscopy scheduled for the 17th of December, which will give us a better idea of the actual structure of her throat and vocal cords (which has a lot to do with how well she swallows).

She's Home!

Peter was able to talk the doctor into letting us run more tests on an outpatient basis, and since she didn't have an infection, there was more of a risk of her catching something in the hospital.

The current theory is that Miss Charlotte out grew her diuretic dosage and her lungs got a little wet. It's also possible that she was refluxing and is micro-aspirating again. (darn aspiration never goes away, does it?)

Who knows. Important thing is, she's home!

Unfinished

Part of the problem with being premature is that most people see a tiny baby. What they forget is that a premature child is not just tiny, that baby is in essence, unfinished.

For example, when Charlotte was born, her ears were just flaps of skin. There wasn't anything that "formed" an ear. I've watched her eye lashes and eye brows grow in. We often comment that she was a much easier stick (for blood draws) when she was see through. Charlotte has scars from where monitor leads tore open her skin in those first few weeks. She was so sensitive, her "hands on care" was scheduled, so that all physical contact could be done at once.

What's sometimes forgotten is that it's not just her eye lashes and her ears that need to develop more. It's her lungs, her eyes, her brain, her skin, her organs, her everything. And since a premature baby, especially a micropreemie, is taken from that perfect environment for development too early, it takes a long time for them to catch up.

Most families know of the "six week" guideline for newborns, aka, keep your baby inside and away from crowds for about a month and a half. (Full disclosure, I totally ignored that with Caleb-- I know, mother-of-the-year here. Took him out in public about three days old. In December. RSV anyone? Awe.some.) With Charlotte, we are advised to keep her from large gatherings until after her second winter. At least. See? A long time to catch up means two years vs six weeks.

Since these babies come into the world in a rather incomplete state, their immune systems are practically non-existent. Charlotte's doctor has absolutely forbidden us to have anyone in our house that doesn't have a flu shot. Her reason? It could very easily kill Charlotte. Not make her sick for a week or two, not put her in the hospital, but kill her. It wouldn't just make her "oh my baby is sick and I haven't slept for a week" kinda sick, but "on the ventilator and in the PICU fighting for her life" kinda sick. Think I'm being dramatic? Read this family's story. And Charlotte has had her own flu shot. In fact, her insurance spends about $1,000 every four weeks giving her a shot that will help protect against RSV.

Premature children also have a difficult time keeping up physically as well. Since they were taken from the amniotic fluid so early, which is where the majority of bone development and nervous system development occurs in children, they tends to be delayed. It is not uncommon for a micropreemie to learn to crawl at two years old, and learn to walk by their third birthday. It's a fairly real possibility that preemies will need medical devices to help them learn to sit up, walk, eat, roll over, stand, etc. It's also not uncommon for preemies to meet developmental milestones out of order. For example, a preemie might be able to walk before he can stand up on his own. The core strength that it takes to stand still might be too much for him, even though he can stay upright while moving.

Among many other unfinished parts of preemies is their parents. We're kinda crazy. It happens. When you've watched your child develop right before your eyes, it changes you, in a way I can't fully explain. Keeping your child safe is more than a parenting aspect, it becomes a full time job. And sometimes, we see it that way. We forget that others haven't spent hours upon hours researching conditions, treatments and outcomes. We forget that our children are also cousins, siblings, grandchildren, nieces and nephews. We forget that we're allowed to simply be a mom or dad. We spend so much time being nurses, therapists, doctors and researchers, that we forget what it can be like to just rock your child to sleep.

Because just like Charlotte's skin at birth, there's a part of us that is still raw. Still fragile to the touch, still too delicate. Eventually, that part of us will heal, just as Charlotte is now. But our development is delayed, our progress can be stunted.

Micropreemies and their parents-- we're all just a little unfinished.

She Has A Following

We had to take Miss Charlotte Amalie into the hospital late Friday night/early Saturday morning. Her oxygen demands were increasing and since our oxygen regulator only goes up to .5L we had to take her in. She's doing well-- we're not sure what's wrong, but she's definitely not as sick as the past hospital admissions. Who knows, maybe it's yet to come, but so far, she looks pretty good. She's requiring more oxygen and isn't tolerating her feedings as well. She's also retaining water a bit. So it could be a few different things, infection, wet lungs, more aspiration, etc. She's also got a lot of air in her belly, which is causing discomfort.

When being seen in the ER, she had several of the nurses come in to see her. She's only been in the ER twice, but they remembered her and were all excited to see how big she had gotten. Three of the residents she has seen so far had cared for her previously. She's starting to get a following at CHOP. The ER attending said she felt left out since she hadn't met Charlotte before.

They've scheduled some tests for her on Monday, so unless she shows impressive improvement tomorrow, she'll likely be at CHOP until we get the results back, likely Tuesday. If she does show improvement, we're hoping we can convince the doctors to let us run the tests outpatient. They've already shot us down twice, but hey, it doesn't hurt to keep asking, right?

In The Clear

Charlotte has had three eye surgeries. Two to stop blood vessels from growing out of control in her eyes and one to reattach the retina in her right eye. For a few days this summer, we worried whether or not she would even be able to keep her retina (It's a rather important part of the vision process). Over 50% of children who have Charlotte's condition lose eye sight completely in at least one eye.

In July, at the time of the surgeries, we were all hoping, praying, that Charlotte would be able to see light and dark. That she might be able to view outlines of objects. We thought at best, she would have severe nearsightedness and minimal peripheral vision. These were our best case scenarios.

As she spent more time at home, we noticed her tracking items, voices, and people. She is fascinated with the TV. We were pretty sure that our best case scenario was true. We were thrilled. Charlotte could see. We knew she would need glasses and that she'd need therapy to help strengthen her vision, but she.could.see. It was more than we could ever imagine.

Today, the eye doctor informed us that not only can Charlotte see, but she is not near sighted at all, and she doesn't have any range of vision problems. He's going to keep watching her, at little more closely than he watches other preemies (because, you know, these kids are never, ever to be trusted) but he is thrilled with her.

We're not even starting vision therapy. She doesn't need glasses.

Miracles continue to happen.

The "End" of Prematurity Awareness

November is over.

Which means all the trite little facts and posters regarding Prematurity Awareness Month will go away.

The problem is, those facts don't stop being facts just because an awareness month has ended.

1 in 8 children are born premature, yes, even in December.

In the USA, about 7.5 babies are born each minute, from January to January.

That means, almost every minute a baby is born premature, every hour of every day of every week of every month of every year.

Prematurity is the number one killer of babies-- every day of every year.

It's nice to have a month to focus on prematurity. I appreciate every opportunity to increase awareness, to help others understand this crazy world. I think it is important to have a time of year that everyone is focused on a topic. However, just because November has come and gone does not mean that we get to stop taking Charlotte to doctor appointments. It doesn't mean that parents get to stop burying their children. It doesn't mean that therapists stop working with severely handicapped children. It doesn't mean that parents stop worrying or that neonatologists can stop working. It doesn't mean that NICU's are empty.

Prematurity doesn't end when Prematurity Awareness does.

Which means, we're not going anywhere.

Lucky you, huh?

:)