In Which I Write About Something I Only Know Tangentially

I find myself in an odd position sometimes. Charlotte straddles the line between "normal" (what does that mean anyway?) and "special needs". Clearly, she has a lot of special needs. But now that she's not on oxygen anymore, her needs are much less obvious to the random person we see on the street. It takes a medical professional to realize the tube running down her leg is a feeding tube. Usually people just smile and say, "Her backpack is so cute! Where can I get one?" {Her feeding pump and formula are kept in a backpack that she wears on her back so her tube doesn't pull out. And really? You definitely don't want this kinda backpack, lady.}

More often than not, people see Charlotte, and not her vast amount of special needs. We hear all the time, "She doesn't even look like a preemie!" {which makes me roll my eyes, but I know, I KNOW, people are trying to be nice, so whatever} or "You'd never know how hard she's had it." Which is great and all, but it kinda ignores the incredible path we've had to take. Like we can just forget about the horrors we've experienced because she doesn't LOOK like she has special needs now.

On the other hand, it's true: Charlotte doesn't look like she has special needs. I cannot imagine what it is like to be the mother of a child who so clearly has special needs, especially cognitive special needs. Nor can I imagine what it is like to hear people throw around terms like , "You're so retarded" {spread the word to end the word} or, "Man, I was totally autistic!" knowing that people are comparing the syndrome your own child, the love of your life, has to an action or person that is being ridiculed.

Recently an article ran in GQ magazine, saying Boston had "a kind of Style Down Syndrome, where a little extra ends up ruining everything." There has been a very public outcry (here and here and here and here and I could go on), but only private apologies. It breaks my heart that people think that's OK. That someone thought, "Gee, look how witty I am!" instead of thinking about what a child with Down Syndrome, or an adult with Down Syndrome really is.

Thankfully, not everyone in the public media feels this way. Nordstrom and Target recently ran these ads:

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Look people, kids (and adults) with special needs are just that. People first and foremost. They are children who have grandparents, parents, brothers, sisters, teachers, therapists, caretakers, and friends who love and play with them. They are children who need more help along the way. They simply have special needs. They are not defined by those needs, they simply have them.

That girl you see in the grocery store isn't "retarded". She is a little girl who has "mental retardation" (a medical term that is often met with some controversy) or "intellectual disabilities" or "developmental delays." That boy on the playground isn't a "downs kid" he's a boy who has Down Syndrome. Those children own those titles. The titles don't own them.

And it's never appropriate to throw around terms like you own them when you clearly don't. So just don't do it. Just don't. Ever.

Oh My

Warning: Caleb may or may not be running around in his underwear in this video. That's how we roll around here.

I love this video. To me, it shows what Charlotte has become. Who she is. What she is capable of doing. It shows the love she has for everyone around her. It shows her hope; her faith. This video tells me that there will be hard days, but she will be just fine. When I watch it, I see a future of pillow fights and pranks pulled on siblings. I see a little girl who is determined to be happy, and a big brother who doesn't mind providing the entertainment along the way.

This video shows me that I have two beautiful, loving children. It shows me that no matter how rough the beginning may be, siblings can find a way to love each other.

It shows me that sometimes I worry a little too much.

It shows me just how blessed I am.

Guest Post

You can read about us over at My Life With Them today. Check it out!

Update

Charlotte has been doing really well lately. We just had a follow up yesterday and here are her stats:

Weight: 9.8 kilos (21.6 pounds)
{15%tile for actual age/ 50%tile for adjusted age}

Height: 72 cm (28 inches)
{2%tile for actual age/ not on the char for adjusted age}

Head Circumference: 42 cm
{not on chart for actual or adjusted age)

Head: Charlotte has what's called "microcephaly", meaning, her head is more than 2 standard deviations from the average head for age and sex. More specifically, Charlotte has micoencephaly, which is a small brain, thus accounting for the small head. {We know this because Charlotte suffered a pretty severe stroke in the cerebellum, leaving very little brain matter in that space} However, luckily for Charlotte, she doesn't appear to have a small head, so it's all good. Her pediatrician just wanted it to be an official diagnosis. Yay for more labels. :)

Hearing: A new one, right? Charlotte's had a bit of a "regression" in the vocal department as of late. Prior to our move, she was making vowel sounds, and the occasional consonant/vowel sound. Lately, it's only been noises, which is good, because it means she can manipulate the vocal cord, but bad because she's not making any progress verbally. We want to check her hearing to make sure this is not a factor in her speech delay. Right now, we're only going for the standard hearing test, but if she still has a vocal delay in say, four to six months, we'll have to go for a sedated hearing test.

Lungs: Doing well! We're weaning her from some of her diuretics, and so far, so good {knock on wood}. She's been consistently off of oxygen for over a month now, and we're thrilled to see how stable she has been.

GI: Still the same. J-tube feedings 18 hours/day. We're hoping that soon (in the next few months) we can start working towards G-tube feedings, and then possibly condensing those feedings so that they are at specific times (called bolus feedings) rather than the continuous feeding. The hope is that we can eventually get her to "eat" during regular meal times, and then start weaning those tube feedings so she can be hungry enough to eat by mouth. Basically, we've got a lot of therapy in our future. And I'm not just talking OT :)

Developmental: We've started with our new therapists here in California. We're seeing Occupational Therapy twice a week, Physical Therapy twice a week and Speech Therapy once a week (maybe adding another one on? who knows). Charlotte has started to crawl since we've moved her, and we're thrilled with her progress. She still has a problem with rolling over from her back to her front, so if she ends up on her back, she just pushes herself backward around on the floor. The back of her head will never have hair on it :) She is, however, transitioning from crawling to sitting, and from sitting to crawling. It's not elegant, but it gets the job done, and you can tell how excited she is about all of it.

ENT: The ENT team here has pretty much taken over the role of managing Charlotte's Sleep Apnea. Right now, that's probably her biggest struggle. Last night, she had 10 desats, a few into the 70's. She hasn't needed to be resuscitated in almost two months, but she does need repositioning and stim to bring her out of some of the more significant desats. She's starting to tolerate her BiPAP mask less and less, and honestly, I just don't know what to do for the poor girl. We have an appointment the beginning of August with the Airway clinic (pulmonology and ENT together) so hopefully they will have some better ideas about how to help her sleep. We still don't have a real reason why she's having the central apneas, and for that matter, we don't have a real reason as to why she's obstructing. We're mostly hoping at this point that she'll grow out of it. But that can take years (if it ever happens at all) and kids kinda need to sleep :)

Overall, Charlotte is happy. She's playing a lot more now that she's mobile, and its awesome to see her and Caleb play together so well. Basically, I just love this gal. She's a keeper (in case you were wondering!)

New Things

Hey Readers,
First, you know you guys rock, right? Good, glad we got that outta the way.

Second, I'm working on re-designing a few things around here, so if the blog looks crazy, just stick with it, I'll have my computer programmer brother make it better fix it ASAP.

Third, just as a FYI, did you know Miss Charlotte has a facebook page? I post there when there is a new blog post, and sometimes things end up there (ie when it is easier to pop a photo on facebook vs writing a whole post about it). Check her out.

Fourth, you can now subscribe via email. If I did it properly, it should email you when there is a new post. Of course, there's a real possibility that I did not do it properly. Let me know if it works.

Fifth, I have a new email set up for this blog. Have a question or a comment, but don't want to leave it on the blog? Go ahead and email it to me. cak.micropreemi at gmail dot com

Sixth, down here at the bottom of the posts there is now a place to share blog posts. Want to share something on Facebook? On Twitter? On Google Plus? Just click the image down there. Then the internet does something magical and viola, it appears somewhere else.

Seventh, you guys rock. Did I mention that? I did? Well, I mean it, really, I mean it.

Eighth, Charlotte's diaper really needs to be changed. Any takers? Is Caleb too young to do it?

Ninth, I've been invited to attend BlogHer '11 here in good ol San Diego. Also, I've been invited to join their advertising network. Let me know if it gets in the way or you hate it or you love it or you love me. Mostly, just let me know if you love me :)

Tenth, I have nothing. I've been writing nonsense for the last 4 items. You knew this already. And yet, you are still reading.

Adjustments

Dear Charlotte Amalie,

We're all making adjustments around here. That father of yours is adjusting to being a *real* doctor (crazy, I know!). Your brother is adjusting to a new home, and new people. You are adjusting to new doctors, new nurses, and no oxygen (woohoo!)

I'm adjusting to it all, as well.

I think the thing I'm adjusting to the most is seeing you as a little girl. You're not my baby anymore. Someone once told me I was lucky, in a sense, because you would be a baby for so much longer. (Umm, thanks? Did you think that one through before you said it? No? Oh, OK...). But even though you aren't doing "toddler" things, I'm watching you slowly shift out of being a baby and into toddler land.  Your face is getting thinner, your legs are getting longer. Your belly, while still impressively large, mind you, is becoming less of a belly and more of a torso.

You are also changing in non-physical ways. You are letting me rock you to sleep, something you haven't done since the early days in the NICU. You are laughing and playing with your brother. (You're also annoying him to death. #couldyoustopthat? #willyouknowhatthismeans?) You are exploring the world in new ways; trying to crawl, picking up toys, figuring out cause and effect. I watch you and wonder.

Do you know what a miracle you are? Do you know how much you have accomplished? Do you know that I live in awe of your strength, your resolve? Do you understand how I long for the future and fear it at the same time? How am I to teach you anything? How I am to guide you, when you have already guided so many; when you have been a source of faith and hope for those around you? For me?

I wonder if you are frustrated. If you know your potential and understand that you are delayed in reaching it. I wonder if you know that your body just doesn't work the way it should all the time. I wonder if you wish things were different.

I wonder if I wish things were different.

I wonder how it is even possible that things have changed so much. So much change. You've gone to a grocery store, to church, to the pool, to Target, to Sports class with Caleb. The strangers in the isles and on the street don't wonder about you. They don't know. It's a miracle they don't know. I'm adjusting to the idea that others don't know our story. Don't understand the fight we've had and the battle scars we carry.

But you, my little girl, you're adjusting to a world with carpeted floors and swimming pools. You are focused on getting.to.the.other.side.of.the.room.

And like all past adjustments, your adjustment is so much faster than mine. Your acceptance is whole. Peaceful. Complete.

I watch you and I realize that once again, I'm learning from you; I'm growing because of your strength. It's an adjustment, as a mother, I didn't expect to make.

But I'm adjusting. Thank you for making it happen.

Always Yours,
Momma

PS. Caleb would like to nickname you Charlie, but pronounced "Shar-ley". I'm gonna go with no on that, right?

Home Again, Home Again

After 3 failed IV attempts. Don't worry, we had 12 more.

We're home! Ohmygoodness, that was crazy. Let's just say, Charlotte will never be a Red Cross Blood Donor.

We were admitted around 9:00 PM PST last night. 10 hours, A NICU nurse, 3 PICU nurses, a PICU attending, 2 attending anesthesiologists, and some sedation later, Charlotte finally had an IV placed. It took an hour after sedation to get a line in. When they finally were successful, two doctors placed IV's at the same time, so they left both of them in. By the time they wheeled Charlotte from the sedation room down the hall to her room in the PICU, one had already blown. This girl does not like IV's.

Once we got the line in, we waited for another 4 or 5 hours before IR could fit us into their schedule. At this hospital, IR uses sedation when placing J-tubes. At CHOP, they just told the kids to suck it up. (I'm sure they did it as nicely as possible). Having gone through both experiences, I'm not certain that the trauma from placing an IV was worth the lack of trauma during the J-tube placement. At least that only lasts about 15 minutes. The IV ordeal was drawn out over several hours, and Miss Charlotte was convinced we were trying to kill her every time I put her on the bed.

However, it's all over now. Except for when it has to be replaced in three months. I think I might schedule a vacation conveniently at that time. {Peter doesn't read the blog, he'll never know :)}

Thanks for all the texts and messages of support. We know you are all probably burned out on this journey and our neediness.

Don't worry, so are we :)

Back Again, Back Again

Charlotte pulled out her J-tube. (Actually, I pulled it out. But that's not important, right?) Here in California, that means an admission, not a simple visit to Interventional Radiology.

This is not awesome. But I'm pretending it is :) Woohoo....

Catch Up Time

Charlotte's Flight Crew

Saying "See you later!" to Grandpa Knickerbocker

Charlotte's transportation

She was *slightly* less stressed about the move than I was.

Arranging for Charlotte to get to California was nothing short of an Olympic Event. The social worker at the NICU at NMCSD worked tirelessly for months to arrange everything. We're so grateful that we had someone to help us with the details. Without her, I'd still be in PA.

An ambulance came to pick us up from our house around 7:45 AM EST. We threw all the remaining items in the ambulance, strapped Charlotte down and headed to Philadelphia International Airport. From there, we boarded a jet, staffed with two pilots, a NICU nurse and an ER physician. We stopped once in Kansas for about 20 minutes to refuel. We finally landed in San Diego, at the Marine Corps Air Station. From there, we got on another ambulance and drove to the Naval Medical Center San Diego (NMCSD, the hospital at which Peter works).

Charlotte did really well on the flight. She was pretty entertained the entire time, falling asleep for the last leg of the trip. The staff on the plane was amazing and they went well out of their way to make sure we were both comfortable. The plane was loud, and the temperature varied wildly, but they catered a meal for me and made sure I had plenty to eat and drink.

We then spent a little over two weeks in the PICU, arranging Charlotte's home care needs and supplies. Caleb was a good sport, but he was definitely ready to say goodbye to the hospital room by the time she was discharged. Then he came home and realized we don't have the Disney Channel like the hospital does. Oh well.

We're getting adjusted to life here in San Diego. It mostly consists of cleaning up after the children, buying stock in sunscreen and "lounging" at the pool. I'm trying to convince Charlotte that getting in the water will not, in fact, kill her, but she is rather convinced of this and I think she just might be more stubborn than I am.

Which is a problem. But considering the problems we've faced over the past year and a half, I think we'll keep it.

We're Home!

Phew. The past two weeks have really kicked my trash. CA, on the other hand, has handled things just fine.

So fine, in fact, that she is now 100% oxygen free. Who knew that all she needed was a nice sea breeze and high taxes?

Charlotte's echo looked great, and the cardiologist is confident that her heart will remain fine without the oxygen. We've also gotten the go-ahead to only monitor her sat's while sleeping. This means that during her "down" time from her tube feeding, she is completely tube and wire free. For three whole hours a day. It's rather strange. I carried her around the house for the first time today. She's 16 months old. I carried my baby. It's rather surreal.

In other news, Charlotte is attempting to crawl as well. So far, I've seen her take about 3.5 crawls toward an item. That wore her out, though, and she has refused to perform since then. We'll get her going though.

We meet with the San Diego Regional Center and a Special Education Teacher today to map out a therapy plan for the little one. We have a follow up appointment with her primary care doctor on Friday, and hopefully then we can know who we still need to see and who we can say "chao" to without looking back.

Of course, all good news has it's counterpoint and Charlotte's stay was full of that. It appears that her central apnea is pretty significant. To make things difficult, we can't quiet figure out why she has central apnea. She's too "old" for apnea of prematurity to still be a problem, and her MRI revealed that she does not have a malformation of the brain stem, which often causes central apnea. Which leaves CA as a bit of a mystery. Neurology also noted that she has hypotonic CP, although, at this point at least, the diagnosis is more to qualify her for services than it is an actual forecast of her abilities. And finally, her eye doctor told us today that while her eye sight looks great, her field of vision is reduced by about 50%. It's the question I have avoided asking, but there it is. She has about 80 degrees of vision, and beyond that, her peripheral vision is non-existent. But hey! That's 80 degrees she in all sense should not have. We'll take it!

Currently, my two little munchkins are laying on the floor, watching some Go, Diego, Go! It's been amazing to watch them interact like two "normal" siblings. You know, like Caleb shouting, "Momma, she's bothering me!"

Sigh. I love it.