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Wednesday, August 10, 2011

We're Live

Ok. Phew. I'm sweating writing this. But the day has come.

We're moving.

To Wordpress.

Please come join the party over at understandingprematurity.com

You have all been our lifeline over the past year. Please, come join us. Follow us as we make this move. And be patient. I have no idea what I'm doing am trying to figure this all out.

Sunday, August 7, 2011

Letters to Charlotte: Progress

Dear Charlotte Amalie,

Last night, your nurse told me how you were trying so hard to make the "la-la-la" sound. You would go through the motions, desperately willing your body to function as your mind wished it would.

Yesterday, this was not possible.

This morning, out of the corner of my eye, I watched you effortlessly roll from your back to your front, push yourself up and practically fly into the crawling position.

Last week, this was not possible.

Right now, you are precariously perched on your feet, in a stance that cannot be comfortable. You are holding yourself up, leaning over Caleb's yellow dump truck, attempting to laugh at the laws of physics, as you recklessly lunge towards the wheels. Spinning them around and around, you throw your head back and laugh. Laugh at the world, baby girl, laugh as much as you can.

Last month, this was not possible.

Tonight, I will place you in your crib. In your own home, I will lay you down for a night of sleep and slumber. I will attach your monitors and push medicine through your feeding tubes. I will swaddle you as you smile and kick your legs. You're the only baby I know who is so ecstatic to be swaddled. I will sing you a song, and then walk into the kitchen to wash the dishes. When I finish, I will walk back to you, and find you sleeping. I will gently place your BiPAP over your face, and I will stand frozen for a moment, mesmerized by your image; hypnotized by your presence.

Last year, this was not possible.

Baby girl, if you are certain of nothing in this life, be certain of this:

Anything, anything at all, is possible. 

And no one can ever count you out.

All my love,

Wednesday, August 3, 2011

Why Dad Should Never Leave The Diaper Bag at Home

That's exactly what you think it is
Peter had the blessing of taking Charlotte to therapy today while I stayed home with Caleb. Sometimes, dads have all the luck.

Sunday, July 31, 2011

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:


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.

Tuesday, July 26, 2011

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.

Monday, July 25, 2011

Friday, July 22, 2011


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!)

Saturday, July 16, 2011

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.

Wednesday, July 13, 2011


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,

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 :)

Monday, July 11, 2011

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....

Saturday, July 9, 2011

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.

Friday, July 1, 2011

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.

Monday, June 20, 2011

We're in California!


In the past week, we've moved across the country, spent 7 nights in the PICU (just as a "let's get to know Charlotte" admission, nothing medically wrong with her), spent 3 nights off of oxygen, met 7 new specialists, changed her CPAP to a VPAP (basically, a vent, without intubation), and discussed two different surgeries.

We've also attended numerous "here, you need to be friends with the other members of your residency class" activities, tried to entertain the big brother (thank.you.San.Diego.zoo), and dropped my father off at the airport and received a reality check (What? You mean we won't be living with Grandparents? But who will watch Caleb?).

Not to mention the 764 phone calls (give or take a few) to insurance companies, medical good suppliers, and nursing agencies. 

This upcoming week, we are looking at a sedated EEG, another echo (they want to look at her heart off of oxygen, to make sure it really looks good, without the effects of oxygen), a roundtable discussion on Charlotte's plan of care, and hopeful a discharge home.

What have you been up to?

Friday, June 10, 2011

What a Difference a Year Makes

June 14, 2010

 Our little miracle has come a long way in a year, hasn't she?

June 10, 2011

Wednesday, June 8, 2011

Under the Weather

Charlotte's a bit sick today, and so I think we all need a "pick-me-up" post. 'Cause I'm oh-so-good at writing those, right?

Peter graduated from medical school this week!  Woohoo! Here's to a few more years of never seeing him :) All jokes aside, we're so proud of his accomplishment. Peter has worked so hard. He's done so much to get here. At a young age, Peter was diagnosed with Dyslexia. In some stroke of luck, Pete's teachers were amazing. They worked in a way that we would all hope teachers would work when our children have special needs. He was held back for half of 2nd grade, attending 1st grade for half the day, and 2nd grade for the rest of the day. During those early years, he would sit up at the teacher's desk while she read him his test and he would verbally take the test. He couldn't read.

In fifth grade, he was able to start reading picture books. He was in special ed classes until middle and high school when he started to mainstream back into "regular" classes. His senior year, when he was in all mainstream classes, he had an instructor who would meet with him once a week or so and go over all his classwork. This instructor would meet with his teachers throughout the week and find out what Pete needed to work on, what tests were coming up, what projects were due.

His school is does not have a large tax base. It's mostly rural, Amish countryside. They don't have large donors, or wealthy incomes to rely on. But they did the best with what they had. They never let him label himself, or allow him to slack off because he was in special ed. They (and his parents!) required him to fulfill his potential. Nothing more. Nothing less. They told him to keep going. To work hard. To find a way that he could learn, and then go with it.

As I watch Charlotte struggle to achieve milestones, or regress in areas that were once strengths, I think of her father. If this man, who hardly had a "normal" course, can walk across that stage, fulfilling his life long dream, then Charlotte can accomplish hers. No matter what holds her back, no matter what "others" may say, Charlotte will succeed.

She may not become a doctor. She may not run a marathon. But she will accomplish anything she wants to. It's not about what I want her to do. It's not about what others say she is capable of doing. If she can accomplish what she sets out to do, then she has succeeded.

And so have we.

Congratulations, Peter. We're so proud of you and all that you have accomplished as well.

Sunday, May 29, 2011

Of Course, It's Always Followed By Bad News

So much for our winning streak.

Charlotte's sleep study results were less than stellar. She continued to have pretty severe obstructive sleep apnea, accompanied by desaturations of her oxygen levels while on CPAP pressure of 5. When they tried to increase the pressure, she had less Obstructive apneas, but more central apneas. They tried switching her to BiPAP and she went to straight central sleep apneas.


So we're kinda taking the, "We're stuck with this, let's make the most of it" course of action right now. This sleep study has at least told us that, no, we're not crazy, her sleep apnea has in fact gotten worse over the past few months. (We kinda thought we were staring to make things up). Currently we are increasing the amount of oxygen going into her CPAP, and maintaining a CPAP pressure of 5. Her pulmonologist figures that if we can keep her oxygen levels constant, regardless of apneas, then at least she isn't sustaining brain damage while sleeping. (She was consistently maintaining sat's into the 70's, which is not the worst she's ever done, but it's not recommended.) However, her cardiologist might not like the extra work load that is put on the heart when you fail to, you know, umm, breathe. So we'll increase the oxygen until her appointment on June 6th, where the pulmonologist warned us the T word might be used.


To be sure, we are a long way off from this procedure. However, Charlotte's heart is not exactly stellar, and her sleep apnea is only pushing it closer and closer to a rather ugly cliff. Pulmonary would like to see her tonsils and adenoids removed first, and we agree. (Even though ENT has said that a T&A will not do anything, as her tonsils and adenoids are not enlarged. Whatever.) If a trach is placed, it will only be done after we've removed all other possibilities. Cardiology, I'm certain, will recommend just watching her heart and making sure that there are not substantial changes to its structure, and/or function as her sleep apnea continues. Should one of those variables change, we'll try medications to combat the stress placed on the heart by the sleep apnea.


It's just like her pulmonary doctor said, "Charlotte, well, Charlotte... She's just one complicated little girl."

That she is. That she is.

Tuesday, May 24, 2011

I Love Good News

Seriously. Today rocked. Here's the results from Charlotte's NICU follow up.

She was 11 months, 3 days corrected and 14 months, 28 days actual at the time of this testing.

Cognitive: 10 months
Expressive Language: 8 months {Biggest gain. She tested at 3 months just two months ago.}
Receptive Language: 8 months
Fine Motor Skills: 12 months {Another major gain, and our highest score-- so thrilled!}
Gross Motor Skills: 7 months

Holy crap. I cried. I cheered. I clapped my hands when she did things like banging two objects together in midline.

2 weeks old
She has a long way to go, but dangit, she's come so far.

Can you believe this is the same girl?

The same girl who could wear my wedding band up to her shoulder?

Today. Almost 15 months
The same girl who spent weeks on the ventilator, months in the NICU?

We love this girl. We love her regardless of test results, regardless of progress. But we're so proud of her. We celebrate the effort she makes each and everyday to succeed. We applaud her dedication to life, her ability to bring joy to everyone she sees. We know that there will be tests that bring disappointing news. Oh how we know that.

But today, today, we are focusing on those test results that feel so few and far between. Today we are believing that those kind of test results will be her future.

We could get used to that.

Monday, May 23, 2011

Sleepy Sleepy

Tomorrow we head back to CHOP for another sleep study. This one will tell us whether or not the hours of fighting with Charlotte to put the darn CPAP on every night are actually doing any good. Cross your fingers.

We also have an appointment with the NICU at CCH tomorrow, to track Charlotte developmentally. Crossing our fingers that she's testing as well as we think she is :)

And because she's much cuter than anything I have to say... here are some pictures:

Post nap, prior to getting her O2 back. She's so happy to have the CPAP off!

We call it her wrestling helmet. The CPAP head straps go on before she falls asleep, and then we add the mask once she's in a deep sleep.

Unless, of course, she falls asleep while you are holding her. Then you just have to keep holding her, because it might be another six months before she'll do that again.

We were told to put the CPAP on her during the day while awake so she wouldn't be frightened by it if she woke up with it on. Yeah. I don't know about that..

I could eat.her.up. Yummy.

- Posted using BlogPress from my iPhone

Friday, May 20, 2011


Once a week, we have Speech Therapy, which primarily focuses on feeding. Or tasting. Or just plain accepting the spoon.

Miss Charlotte Amalie has never "eaten" by mouth. The most our little gal has ever eaten in a sitting is about 1.5 ounces of milk from a bottle. And yet, day in, and day out, we sit down with her, three times a day, to show her just how fun it can be to eat.

We play with food (put it on her tray and let her explore), and we taste food (tiny, tiny, TINY amounts on a spoon). We try boluses of food, we try scant amounts of food. We've tried holding her feeds, we've tried changing her calories.

Charlotte's response is making me worried about her when she becomes a teenager. "Meh." She's already apathetic.

I know, I know, she won't always be on the tube. And the reality is that she's come a LONG way in the past six months. Six months ago, she would gag and retch and turn blue at the mere sight of the spoon. Or when you opened food near her. Or if she could smell it, or see it. Or if she just didn't like you. (Not really, at least, that's what I'm telling myself).

Now she will reach for the spoon and put it in her mouth. As long as there isn't any food on it.

The really irritating part is the regression. Charlotte was a sickie-head (I hand out with a three year old too much) last week, with a simple GI bug. She weathered the illness remarkably well, despite her high temp and constant retching. (At one point she puked through her nose. I'm no doctor, but I'm fairly certain that with a Jtube AND a nissen, that is just not supposed to happen). Prior to her illness, she was allowing foods in her mouth without gagging. She wasn't swallowing them, but that's an entirely different battle.

This week? Nada. Gagging and retching again with the "introduction of food into the oral cavity," as per her therapy notes. It's just a nasty cycle. She has a negative experience with eating, so she gags to protect herself. Gagging and retching cause a negative experience, so she's more likely to gag the next time food is introduced.

I'm exhausted by it. I'm frustrated that four tastes of baby food is "remarkable progress" for little Miss Charlotte Amalie. I'm frustrated that we've got years of this darn GJ-tube in our future. I'm frustrated that we've bypassed bottles and sippy cups. (I don't know why, those things are a pain to clean. But I miss them none the less).

I'm frustrated that I have to accommodate her tube. Can she wear this outfit? How do we bathe her? Can she sit on the beach? How does the hole in her abdominal wall affect her core strength? How much tummy time can she do before her stomach contents leak out? (Gross, I know. It's actually one of the least gross things that goes on in our house... disturbing.)

I'm frustrated that I have to love it. I have to love this darn tube because it keeps her alive. Thriving. Plenty chubby, let me tell you. I frustrated by the power it has over our lives. By the unyielding influence it exerts.

I'm mostly frustrated by the fact that the less CA eats, the more Oreos I seem to consume.

Just sayin'

Tuesday, May 17, 2011

Not Again...

I need a favor again! Shannon, a mom on a micropreemie support group I belong to, is the mom of Ashton, born at 24 weeks. She's had another pregnancy that ended at 18 weeks, with a little boy, Hunter. She's pregnant again, and is 23 weeks along right now. This week she received some pretty harsh news, that despite having a cerclage, her cervix is shortening pretty significantly.

Head on over to her pregnancy blog and send your wishes of support and comfort. You can read her story here.

Thursday, May 12, 2011

Mother's Day

In my church, the "sermon" on Sunday is given by members of the congregation. A week or two (if you are lucky) prior to your "assignment" a member of the clergy asks you to speak and gives you a topic. Traditionally, you are asked to speak if you are new to the congregation, as an "introduction" talk, and you are typically asked to speak if you are leaving the congregation. Since we're heading out to California, we knew this was coming.

Peter managed to weasel his way out of giving a talk by moving sooner than the Bishopric expected, and I was left with the task of giving our farewell talk.

I was asked to speak on Mother's Day, with the topic of "The Virtue of Mothers". A few asked to have a copy of the text, so I figured I'd just put it here on the blog. And this way, my mom can read it, too.

So happy Mother's day y'all. Happy Mother's Day. 

Last year I spent Mother's Day with my daughter in the Neonatal Intensive Care Unit. She had gained not quite twice her body weight since birth, tipping the scales at a whopping 2 pounds, 1 ounce.

I was laying down that Sunday for the obligatory post-church nap, when we received the phone call. Charlotte was not doing well and was being placed back on the ventilator. As we rushed back to the NICU, we learned that she was requiring quite a lot of support. We spoke with the neonatologist and gravely agreed with their plan. We'd try one more course of heavy steroids to attempt to lower her ventilator settings. If that did not work, we would remove care. 

I learned a lesson that day, and many times since. It's a lesson I probably should have learned, from watching my mother, grandmothers, and mother-in-law, but one I never really quite grasped. I felt like the Grinch, in his moment of epiphany, only my lesson was not about Christmas, but rather, the role of mothers. 

Motherhood, I learned, is not the same idea as I had been told. It wasn't the same role that I had been taught in oh so many Young Women's or Relief Society lessons. Motherhood, I learned, was so much more.

Sure, there are parts of being a mother that involve driving kids to school, tucking them in at night, and counseling them about decisions. Sometimes motherhood does in fact involve getting pregnant and physically delivering a child.

But more often than not, motherhood has nothing to do with the physical acts we so often associate with being a mom.

The virtue of mothers is that it lies within us all. Whether we be biological mothers, step mothers, adoptive mothers, mother-to-be, mothers of full term kids, or special needs kids, or special-because-they-are-our kids. Whether as women we have children, are desperately waiting for children, or have buried our children. Whether we're not sure if we even want children or if we can't stop trying for "just one more." Whether we work outside the home, or in the home, or are employed by our own families. The virtue of mothers lies within us all.

In fact, just to be a little controversial, I'd even say it lies within our husbands, fathers, and brothers. Every Sunday while Charlotte was in the Chester County NICU, Peter and I would spend the afternoon with her. It was a special time, our time to spend together, just the three of us. Each Sunday, Peter would spend that time with Charlotte, barely the size of his hand, doing Kangaroo Care. During this time, Charlotte's vital signs always improved, and she was the most stable of any point throughout the week. Sitting there, watching my husband warm our tiny little girl on his chest, I was reminded that some of the most important moments in mothering come from those whom the world would not recognize as mothers. 

In my congregation growing up, there was a wonderful couple who did not have children of their own. Jeff was our home teacher, and became a second father to me. His wife, Bonnie, worked in the library at church. Despite never bearing a child of her own, Bonnie is one of the most poignant examples of the virtue of mothering. A young man in our ward struggled with social and academic situations. Often viewed as the troublemaker, this boy found it difficult to related to others. Yet every week, you could find him sitting in the library with Bonnie, as she spun her own wool, telling her about the snakes he saw, or the stones he collected throughout the week. Bonnie did not try to befriend him, she simply befriended him. She did not act interested, she was interested. She may not have tucked that boy in at night, but by the genuine smile on the face of a young man who was often forlorn, everyone knew- Bonnie had the virtue of a mother.

My own experience in mothering has not been the one I imagined as a child. Despite our circumstances, or maybe because of them, I've come to believe that few experiences with mothering are as we imagined. Few are the mothers who fit the idolized fantasy: marry the prince, have a baby (or four), enjoy the task of raising the perfect children, and step back to watch them continue the cycle.

For so many of us, true mothering occurs when that fantasy is shattered. We don't get married, or we can't bear children, or our children are sick, or die, or grow up only to go astray. Maybe we find ourselves divorced or widowed, with children still to raise. Maybe we find ourselves grandparents, raising another generation long after we though we would be done. Maybe our husbands lose their job, or we have chosen to be the breadwinner. Maybe in the quiet moments of honesty we admit that we're exhausted, overlooked and worn out.

And yet, in those moments, when our lives are nowhere near the picture painted in Sunday School lessons or Family blogs, we pick ourselves up. Many times, very slowly, many times after great delay. But we pick ourselves up none the less and continue the work. 

It is a work very different from the one we may have imagined. And yet, the blessings of that work are just as unimaginable as the work itself. Watching Charlotte this morning, nine times the size she was a year ago-- an incredible eighteen times the size she was at birth-- I am struck by the power and magnitude of mothering. Today, my children test me in ways I had not foreseen, and I am blessed by that same measure.

This is not to say that mothering is all difficulties or quick adaptations. Part of the virtue of mothering is the ability to savor the moments. Like when Caleb points to a man with a pony-tail and very clearly asks, "Why are you a lady?" Or in the more uplifting moments, when we sit down to dinner and he quietly exclaims, "Mommy, I love spending time with you."

The virtue of mothering comes as we learn to embrace what we have, the situations we have come to live in and we simply make the most of it. That virtue fills our lives as we learn to stop comparing our inside to everyone else's outside.

May you all have the most Happy of Mother's Days.

Wednesday, May 11, 2011

Vacation Pictures

All the Farr cousins. Believe me. This is the best shot we could manage.

Charlotte at the beach!

Siblings. Charlotte 14 months actual, Caleb 3.5 years

Charlotte and her cousin, Sophie. Sophie was SO good with Charlotte.

Have chupi, will travel. Not to pacify, mind you, rather, just to chew on.
The last week of April my siblings, parents, and paternal grandparents rented a house in the Outer Banks. It has been almost 5 years since all of my siblings have been able to attend a vacation together, so it was great. Even better, this is the first time all the cousins have been together. Last summer almost all of them were present for my sister's wedding, but Charlotte was still in the NICU, so she was absent.

Not to get all emotional or anything (that's a hint that I'm about to get all emotional), but seeing Charlotte together with all the other cousins was pretty amazing. Last year at this time, Charlotte was a pretty sick little girl. She was on the oscillator vent and we weren't really quite sure if she could get off of it. To see her sitting around, spending time with her cousins was a gift I just wasn't expecting. It was pretty amazing. At one point, Maeli remarked, "I think Charlotte really likes me! I love spending time with her." I may or may not have run to the bathroom and cried my eyes out. Cried out some big old tears of pure joy.


But I wouldn't tell you if I did.

Tuesday, May 10, 2011

Our Days

 Charlotte didn't have a nurse today, so it was just me and her.

Or me versus her.

But that's not important. Here's a video of how our feeding session went today. All in all, she did awesome! Six months ago, she would gag and retch at the sight of a spoon, or as soon as you would place her in the chair. We're so proud of how far she has come. Who knows what she will be doing in the next six months?

(I took this on my phone, so excuse the quality. And the ridiculousness of my voice while talking to Charlotte. And yes, we use bubbles to distract her.)

Wednesday, May 4, 2011


Dear Charlotte,

Today is just one of those days. Maybe its because Mother's Day is around the corner, maybe it's because Daddy is out of town, or because we've had to experience the loss of a grandparent. Or maybe it's just because its raining today. Who knows. These days come and go without a mention of return, without a warning of arrival.

We're so proud of you little girl. We're so amazed by how well you are doing. We're so blessed to have the smiling, interactive baby that we have. Because we know how bad it could have been. We know too many who have faced headstones and caskets, too many who have never had their children look into their eyes. We'll never, ever understand how bad it could have been-- no one can; no one who has not actually laid their child to rest can ever understand. But we know of it. We've lived around it and in it and we've walked through it.

Despite our knowledge, on days like today, I feel marginalized. As though the whole of society continues about their days, supporting causes like "Breastfeeding in Public" and "Home Births for All" and I want to scream. I want to scream, not because I am angry at their causes. Not because I do not believe in their vision.

Rather, I want to scream because I just want your situation be noticed. I want someone to understand. I want the world to know that not everyone gets a "choice" in their birthing plan, nor do they care. Those people are more worried about the ventilator settings and the results of blood tests. They are more concerned about MRI results and ultrasound findings. Those people just want their baby to live, forget how they entered the world.

I want your journey to be recognized by those who have not had to take this path. I want to be understood by people who have not spent months upon months in the NICU. I want to feel as though others are concerned, others are devoted to your cause, not because they too have been touched by this plight, but because it is something that has been normalized, something that has been accepted, confronted and recognized. I want to not have to educate so many on the effects of prematurity. I want to be able to explain that my daughter was born 16 weeks early and have someone understand just a little about what that means. Just as a cancer patient does not have to explain how difficult chemo is, I want a basis of understanding.

I know that understanding only comes through education. I know that I have a job to do. I know that as a parent of a premature child, the only way prematurity will ever be understood is if I help to educate those I interact with on a daily basis. But on days like today, I just want to curl up in bed and cry. I didn't ask for this job, and I really don't want it.

And then I look at you, and my feelings of pity and frustration feel trite and ridiculous.

I wanted you. I want you.

And I have you.

If I have to take this job to get you, I'll do it a million times over.

Consider my position full time.

Your Faithful Employee-

Monday, May 2, 2011

Wrapping Things Up

These days we are working hard to start wrapping up Charlotte's medical care here in Philadelphia and preparing to descend on the poor, unsuspecting doctors in San Diego. I don't think they have any idea what they are about to deal with, and I'm not referring to Charlotte's medical needs. More like Charlotte's needy mother.

This week we see pulmonary and surgery. Next week is nutrition and GI. After that we have NICU follow up and a final appointment with her pediatrician for her 15 month check up and vaccines. We've already checked in with cardiology, ENT, and ophthalmology. We've set up a sleep study in San Diego and we've been assigned specialists and a primary care doctor.

Phew. I'm exhausted. Here's a picture of how darn cute she is to remind us that she's worth it all.

Yupp. Definitely worth it. That, and so much more.

- Posted using BlogPress from my iPhone

Thursday, April 28, 2011

Smiles, Crazy Hair, and Siblings

One of Charlotte's therapists thinks that she should become the poster child for CHOP. Think there is an agency for medically needy pediatric models?

Do you see that hair?

I love these two. That's all.

We're on vacation this week in North Carolina with my paternal grandparents, my parents, my siblings and their children. It took our family two vehicles, a nurse, 8 oxygen tanks and lists upon lists upon lists to get everyone prepared to be here, but we're having a great time. Charlotte is spending her days watching her cousins run laps around everyone (we have three 3 year olds here!) but so far, so good.

We'll have plenty of stories and pictures to share when we return!

Monday, April 18, 2011

The Farr Side

(My maiden name is Farr)

Charlotte had a busy, busy week last week.

For reference, Charlotte had her GJ tube placed initially on March 1. By April, she had to have it replaced three times. We went in on Tuesday for her fourth replacement. At this point Peter and I were pretty sick of this contraption called a GJ tube. Her nurses hated it. We would have gone back to the G tube button if not for the fact that Charlotte's doing a lot better with the feedings going into her jejunum. Darn kid and her medical needs.

So yeah, Tuesday I made a plea to please, please, please place a button. They smiled and nodded and politely said, "Umm, no." IR said GI wouldn't let them place it and GI said IR wouldn't do it. So I walked on down to GI and said, "IR will place the button if you will sign off on it." They weren't too happy about it, (CHOP wants all babies with a GJ button to be at least 10 kilos, Charlotte is 9) and they went into all the horrid things that could happen. The problem is, Charlotte is getting a nice ol' dose of radiation about every two weeks at this point. I'm willing to take my chances. Plus, I know a few 9 or 10 pound babies (pounds... not kilos) who have the GJ button. I'll try anything at this point.

On Wednesday, IR called and said the next time Charlotte needed her tube replaced, they would try the button. Charlotte apparently heard this because Wednesday night she yanked that thing right out. Yupp, twice in three days. Awe.some.

We had the button placed on Friday and so far, so good. We're really, really, really hoping this works better than the PEG/NG tube combination.

Charlotte also had her eye exam on Friday. Last time we were there, the eye doctor was shocked at how good Charlotte's vision appeared to be. After a child experiences retinal detachment, the assumption is that they will have significantly impaired vision. At her last appointment, Charlotte was not even showing signs of being near sighted (the typical problem for children with ROP). At this appointment, Charlotte tested being a little far sighted. The eye doctor felt that this is probably the "normal" far sightedness that most children experience. However, once she starts moving (crawling, rolling, or walking, whatever comes first) her vision might make things a little more complicated. So he's keeping a close eye on her (haha) and referred us to a good ophthalmologist in San Diego.

Oh yeah, Charlotte stopped breathing last night. It was awesome. Yay for Ambu-bags. {She's fine, she just had a severe apnea event. Reminds us that the CPAP really is important for her}.

And that was our week!

Wednesday, April 13, 2011

On a Lighter Note

I like to follow those sappy posts with something a bit more light hearted. 
For your viewing pleasure, I present: Charlotte's First Swing Experience.

The Future

I'll be honest.

I worry about Charlotte.

I worry that her next appointment will be the one with the horrible news. I worry that they missed something at the last appointment. I worry that the doctors are watching for things but not telling me. I worry that I am missing something. I worry that she'll never talk, never walk, never participate in life the way that a mother wishes for her daughter.

These worries are not all encompassing. It's not what I see every.single.time I look at her. Rather, they are the fleeting thoughts that rush through my mind when someone says, "Next year, at this time..." or when someone mentions a milestone to meet or a hurdle to jump over.

Next year at this time, what? Will she eat? Will she crawl? What will be her next diagnosis? Will she walk? Will she still be sitting there smiling at us with all her tubes and wires? Will she be off of the dang oxygen? Will she be able to talk? Sign? Pick up things with her fingers? Bang two objects together? Shoot, will the girl roll over?

How about in five years? Will she be able to go to sleep overs? Will she go to school? Will she still have a tube, oxygen, medications or CPAP? Will she be done with therapy? Will she have braces or a wheelchair? And in ten years, or fifteen, or twenty? What then?

Now in reality, I know that most of these questions are silly and not applicable. And I know that if she doesn't do any of these things, we'll be just fine. We'll make it. And so will she.

I also know that Charlotte is doing so much better than we really have the right to hope for. She's alive, and anything she does over and above simply staying alive each day is a miracle. Seriously. She had an 11% chance of survival with a moderate to severe disability. She beats the odds every single day.

And yet, I struggle, as I fall asleep each night, thinking of the things that could go wrong. The things she might miss out on. The moments she won't have.

Maybe we all stay up at night worrying about that. Because, isn't that the struggle of all parents? We want everything for our children. Full term, autistic, healthy, disabled, or angles in heaven, we all just want our children to have it all. Sometimes we don't get it, sometimes our children, just don't get it all. It's coming to terms with that, and figuring out how to adjust to reality that makes us parents I suppose. 

But in the middle of the night, with a nurse downstairs, a feeding pump alarming and a CPAP machine whirring, those worries seem so much larger, so much more intense. So much more personal, isolating, and terrifying.

I guess I'm just trying to say "thank you." Thank you to this community of Charlotte supporters for getting me through the night. For giving me the knowledge that when it all comes crashing down (as life inevitably does), Charlotte will have more than me to hold her up.

Because you might not be her parents, but you are her future. That knowledge sure does help me sleep.

Monday, April 11, 2011


For reals.

Charlotte just pulled out her J-tube. Again. Looks like we're headed to CHOP tomorrow.

How soon can we get a button?

Thursday, April 7, 2011

Back In Action

 OK, so Peter's not very good at keeping the blog up to date :) He's pretty good at other things though, so we'll keep him around.

I spent the last week driving across the country with my mother and our three year old son, Caleb. I wasn't sure we were going to make it out there alive, but to my surprise, my mother was rather well behaved. Just kidding! My mother was our life saver and Caleb was a perfect child. I was very, very, very lucky.

When I left, Charlotte was still in the hospital. Since we knew that they didn't want to do the surgery to remove the tonsils, and she wasn't technically "sick" I figured I should go ahead and keep going with my plans to drive our car out to LA. (Peter is going to be a pediatrician after all-- he can probably handle it. And I may or may not have made him go to San Diego for a month long rotation on the same day Charlotte was admitted to the PICU in September. It would have been *slightly* hypocritical of me to stick around.)

Peter spent the rest of the week in the hospital with Charlotte; an experience which will certainly help him to be more sympathetic to parents in the hospital when he is a pediatrician. Charlotte kept him there a little longer than we had planned for several reasons.

First, they were able to slip her in to the pulmonary floor to be fitted for CPAP. Luckily after about two nights, she seemed to get used to it and has been doing well with it. Since there isn't an obvious reason for Charlotte's OSA (obstructive sleep apnea) the doctors wanted to check to make sure it wasn't a malformation of Charlotte's brain stem. Or something like that. Apparently there can be a problem with the brain stem which causes OSA. To check for this, they had to get an MRI. Since Charlotte is little and doesn't respond to commands well, she needed to be sedated. Since she has an oxygen requirement, the sedation needed to be general anesthesia. Yupp, back on the ventilator for an MRI.

Luckily Charlotte did really well with the MRI and the anesthesia. While she didn't have the malformation they were looking for, the MRI showed that Charlotte had an infarction in her posterior inferior cerebellar artery. Basically, she had a stroke.

Let me tell you, it was a long wait for the neurology consult. I was driving across the Kansas/Colorado border and the general desolation (sorry for all y'all who live there...) wasn't helping the wait. Finally neuro came to see Peter and Charlotte and explained that since there was cerebral spinal fluid in the space this was an old injury. Apparently, it takes time for the blood to dissolve the brain tissue and for spinal fluid to fill up the space. Since we don't know when this injury occurred, we don't know much about how much it will affect Charlotte. The neurologist assumes it happened very early in life. The thinking is that Charlotte's brain was still extremely plastic-- meaning it was malleable enough that it could re-wire and no lasting damage in terms of function has occurred. As we age, we lose this plasticity, and damage to our brains causes more and more long-lasting impairment. Luckily, Charlotte's not too old just yet :)

If this stroke was to cause impairment, it would affect her mobility, swallowing ability, and her speech. Since these things are typical micro-preemie problems, it will be very difficult to tell what is due to her prematurity and what is due to her stroke. Flip a coin.

The other thing holding them up in the hospital was Charlotte's oxygen requirement. We were hoping that with the assistance of CPAP at night, maybe Charlotte could come off of oxygen during the day. They trialed her for one day off of oxygen and she did really well. However, the pulmonary doctors consulted with Charlotte's pulmonary hypertension doctors who gave this plan the axe.

Apparently, Charlotte's heart is still working a little too hard to keep her body full of oxygen. The oxygen in her case isn't to keep her blood oxygenated, rather, it works to decrease the pressure in her lungs (oxygen is a vaso-dilator) and allowing her heart to pump a little less. Without the vaso-dilating, Charlotte's heart can actually re-build itself in a damaging way. This damage can become permanent and can cause death (this is pulmonary hypertension). Charlotte is many, many, many steps away from this level of severity, but we're keeping her on the oxygen to keep her from getting any closer.

So that's that! Charlotte came home, CPAP and all, on Saturday. She's rocking an awesome faux hawk from the CPAP at night. I'll post a picture later. It's seriously the best example of hat hair ever.

Thursday, March 31, 2011

Dad's turn at the hospital

Charlotte was admitted to the hospital on Sunday afternoon and has been hanging out here at CHOP ever since. She is the healthiest kid to ever spend nearly a week in the hospital. Since she has been here, there been no fevers, vital sign changes, or even an IV.

She had her Jtube replaced on Tuesday morning and was moved to the pulmonary floor Tues night to be started on CPAP. She has tolerated the CPAP pretty well. It took ~6 tries on tuesday night to get her to sleep with the mask on, but wednesday night it went right on without any fight. I don't see a huge difference in her when she wakes up, but it is keeping her heart rate lower during the day.

She is currently on a room air trial (where we turn off the oxygen and see what she does) and is doing very well. It is nice to see her without a cannula in her nose. I imagine at some point she is going to need more oxygen, but it is nice to know that her lungs are healing and improving.

Tomorrow morning she is going to have an MRI done to evaluate her brain. There is a concern that the Sleep Apnea might be caused by an abnormality in her brain stem. It is a zebra, but it is worth ruling out. Due to her shotty lungs, she will need to be under general anesthesia for the scan and stay in the hospital for 24 hrs after the MRI for observation.

SO it is looking like it will be Saturday morning before we get out of here. I am trying to fight the hospital psychosis as best I can, but I feel it creeping in. I look forward to meal times as a chance to leave the room and interact with the world around me. I took a walk today through Penn's campus just to reorient myself with the world. I am constantly amazed how different the hospital world is for the doctor and for the patient. Hopefully this will help me relate to patients I have in the future.

Tuesday, March 29, 2011

Latest and Greatest

We've spent the past few days at CHOP, our second home. I mean it's been almost 2 month since our last admission, it was about time we got ourselves back here for a visit, right?

Charlotte's doing well. This admission is more of a "complex care" admit than a sick admit, so its been less stressful than others in the past. What's complex about Charlotte? you might ask.

It's easier if I just give the week in review:

Sunday: Started having some nasal congestion. This is our first real cold (ie, runny nose, needed to be suctioned, etc) since October and the combined 2 week admit. Way to go us!

Monday: Sleep Study

Wednesday: Cold peaks. We're going to stay home through a cold! Woohoo!

Thursday: Cold gone, for the most part. We can still hear congestion, but we can't see it, and it hasn't "dropped" in to her lungs

Thursday night: GJ tube malfunction. {SIDENOTE: This GJ tube is such a shamble, it's almost an insult to the word shamble. It's a standard PEG tube with an NG tube threaded through it, and then TAPED together. Seriously, in this day and age of uber expensive medical technology, we're TAPING GJ tubes together? For reals?} We have to pull the GJ and since this whole J tube feeding thing was a trial and we don't feel like running down to the ER (GJ's must be placed in Interventional Radiology), we replace it with the good ol' Mic*Key button G-tube. This means food is going into Charlotte's belly for the first time in 3 weeks.

Friday: Charlotte starts coughing again, having more cold-like symptoms, but no runny nose. We find out she has severe obstructive sleep apnea and we might need surgery and/or CPAP. And we don't have a night nurse.

Friday night: Charlotte has a very hard time sleeping. Coughing and gagging, constant desaturations, she was not a happy baby.

Saturday: Very sleepy baby. Still with the cough, but no runny nose.

Sunday: Charlotte starts wheezing. Albuterol! Wheezes some more. Charlotte's running a fever (low grade, 100.7 F) With the combination of a change to Gastric Feedings, the cold, the sleep apnea, etc, our pediatrician and the Integrated Care Service Floor at CHOP both thought it would be best to come in and have a little tune up.

Since then: Charlotte's been on albuterol every 4 hours to control her cold/ cough. It doesn't appear as though she had a major aspiration, but she was definitely microaspirating with the G-feedings. Yay! ENT came by to see her and determined that they would rather NOT do the surgery, a conclusion with which we whole heartedly agree. We're sticking around this place until Charlotte can be fitted with a CPAP machine and mask. That should take a day or two, and then we'll be home with our little snoring baby.

The sleep study showed some irregularities in her EEG, but we spoke to neuro today and they said they wouldn't worry about it until she starts having seizures. Haha, sure why not? All joking aside, they did say that some irregularities are to be expected with a micropreemie and we shouldn't be concerned unless there were clinical signs. One more point for "preemie brain".

That's that.

Friday, March 25, 2011

Obstructive Sleep Apnea

We'll add that to the diagnosis list that Charlotte has running. Charlotte went in for a sleep study on Monday night and we were fully expecting that we'd get the go ahead to start weaning Charlotte off of her oxygen during the day. With any luck, we thought, maybe Charlotte would be off oxygen by the time we moved to California!


Charlotte's pulmonolgist called today saying that Charlotte has severe obstructive sleep apnea. She is referring us to ENT to see if they want to remove her tonsils and her adenoids. We're thinking the surgery should be scheduled in the next few weeks, if they decide to move on that. About 6-8 weeks after surgery, we'd do another sleep study, and if OSA is still observed, they would place her on CPAP during periods of sleep.

If ENT doesn't want to do the surgery, then we'll get started on the CPAP right away.

Any ideas on how you keep CPAP on a 13 month old? Should be awe.some.

Thursday, March 24, 2011

MOD Response

An open letter to Ther-RX from the March of Dimes. If they stick to this, I will revise my opinion of their response to this entire debacle! 

March 23, 2011

Greg Divis, President
Ther-Rx Corporation
One Corporate Woods
Bridgeton, MO 63044

Dear Mr. Divis:
Thank you for your letter of March 17th. I am pleased to learn that you are ‘listening carefully to stakeholder concerns about list price, patient access, and cost to payers’. Thank you for considering additional steps to ensure that Makena is available to all eligible women, and for convening stakeholders from the March of Dimes, the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Society for Maternal Fetal Medicine next week.

In advance of that meeting, I want to go on the record that March of Dimes expects Ther-Rx to come to the table with substantive commitments including:

1.A significant reduction in the list price of Makena.
2.Adjustments to the patient assistance program to ensure adequate coverage of all patients, insured, uninsured and underinsured.
3.A method for reporting on a regular basis to stakeholders on the patient assistance program to ensure that it is meeting needs in a timely and adequate way.
4.A justification or rationale for your pricing based on your investment in the product, savings to the health care system, or other appropriate methodology, which you are prepared to make public.
Without these elements, I do not believe that Makena can succeed in the current marketplace environment, and as a result, at -risk women will be denied access to a safe and effective treatment to reduce preterm delivery. Therefore if you are unable to make a clear commit-ment to significantly address the above issues at the meeting, the March of Dimes will need to pursue alternative strategies for ensuring that this proven intervention to prevent preterm birth is made available to all medically eligible pregnant women, and we will step away from our longstanding and productive corporate relationship with Ther-RX. Thank you for your consideration of this critical matter.


Jennifer L. Howse, PhD

Sunday, March 20, 2011

Baby Blue

Oh, those eyes. Those baby blue eyes. We love those eyes. And that smile, and your cute little nose. And your waxy ears and pretty much everything about you.

'Cept your dirty diapers. Those are gross.

Friday, March 18, 2011

OK, I'll Talk About It

I've been avoiding this post because I've been sincerely hoping that the March of Dimes and/or Ther-RX would put on their big kid pants and do something about this whole situation. But alas, I don't think that's the case.

What situation? you ask. Lucky you! For many preemie parents, the past few weeks have been a huge roller coaster ride.

Last month a drug was approved by the FDA which significantly lessens the chance of premature birth for women who have previously had pre-term labor. This drug, known as 17P has been on the market for a few years, but it is made by compounding pharmacies, meaning any pharmacy can mix it up and there isn't really a great regulation system in place for the drug. A pharmaceutical company presented 17P to the FDA and with the support and backing from the March of Dimes, the FDA approved 17P to be marketed as brand name Makena. This means drug production will be universal, ensuring quality and making it easily available to all women. This is a HUGE deal.

But then came the whiplash. The drug is going to jump from $10 a shot to $1500 a shot. Women would need this injection once a week, making a full term pregnancy come close to $30,000 just for this one medication.

To make matters worse, Ther-RX has made large (we're talking $1.5 million) donations to the March of Dimes in the past year, making it look as though the pharmaceutical company bought the endorsement of the MOD. The MOD denies this, but their statements aren't changing the minds of many preemie parents. Ther-RX has promised that all women, regardless of ability to pay, will be able to receive this medication. They've promised that there will be financial aid available to those who need it. They've promised.

The reality is, the preemie community is still working day in and day out to get insurance companies to cover a immunity boosting shot for all preemies during RSV season. This shot (Synagis) delivers antibodies to protect preemies from RSV, a common cold in adults but the source of massive lung damage for children. Charlotte, born at just over a pound and 16 weeks early was DENIED for this shot the first time we applied. RSV would ravage her already fragile lungs, and easily place her in the PICU, most likely back on the ventilator. Thankfully, she has received all of her shots this season, and has not contracted RSV. For reference, Synagis costs about $1,200 a month.

My question is, if we can't even get insurance companies to cover Syangis for children who are already here, who are already at risk for serious medical complications, how in the world are you going to get insurances to cover a medicine that gives a theoretical protection (not all babies are born term, even when the mother gets this shot) when it costs $5,000 a month?

And... if we are to get insurances to cover the crazy cost of this drug, who do you think will really pay for it? Yeah, we all will.

Those who are truly financially incapable of paying for it will get it and will receive financial assistance. For that I am grateful. But there are those who might appear to be financially capable (have insurance, make over $60,000 a year) who will not qualify for this assistance. What about those women? Those children? Those families? One person recently stated that her insurance company, a nationwide insurance carrier, informed her that her cost per shot would be $3,000 out of pocket.

So what to do? Many parents are demanding the MOD return the funds donated to them by Ther-RX in an effort to show how outraged they are by the price-hike. The MOD says that those funds are already earmarked for programs and they would have to cancel programs that support women and children in the community.

Many more parents are refusing to raise money for the MOD. If they really didn't see this price-hike coming, as they claim, how aware are they of everything else they are supporting? Why should we as parents give them our hard earned money if they cannot be responsible for what they are supporting?

I don't really know the answer to this. I'm devastated over this. I fully support drug companies re-cooping the cost of the research and development of their drugs, but Ther-RX didn't even develop this drug! It was already in existence! Ugh.

All I know is that this situation is ridiculous. The MOD has worked hard to make lives better and has spent a lot of money on research to increase the prognosis for preemies. For preemie parents and the MOD to be at odds is not a good thing and I hope both sides focus on what matters most: protecting women and babies.

Here are other reviews of this situation you might want to check out:

In an effort to be completely fair, here are the responses from the MOD:


Hello Everyone.
Just wanted to chime in and give info other than the articles from media that have been posted. This is information directly from the March of Dimes, and I hope this will help dispel any concerns and frustrations you might be feeling about Makena/17P and the involvement of the March of Dimes.

The March of Dimes agrees that the price of Makena is too high. They have shared their concerns about the price with Ther-Rx in the past and have done so again today. The needs of moms and babies are their only priority and they are making sure Ther-Rx hears their voice – and your voice, too. Ther-Rx has promised that every eligible woman will get care regardless of her ability to pay and the March of Dimes will hold them to that promise. The March of Dimes will also work with insurance companies and Medicaid to be sure that there is coverage for every woman. Women are able to apply for financial assistance through the Makena Cares Connection, an assistance program. Here’s that information.

Makena Care Connection™ at 1-800-847-3418, Monday−Friday, 8 AM−9 PM (ET)

If you have issues with getting treatment, please don’t hesitate to contact the March of Dimes directly via their website at www.marchofdimes.com. The March of Dimes staff reads each posting and they will respond to you. The March of Dimes says they are hopeful that between insurance and financial assistance, the system will work for people. But if it doesn’t, the March of Dimes will be fighting on the side of pregnant women, not the drug company.

I really hope this helps.



Dear Mr. Divis:
I write to share the serious concern of the March of Dimes about access of clinically eligible women to the newly approved drug for prevention of preterm birth recurrence, MakenaTM. As you are aware, the March of Dimes co-sponsored a scientific symposium in 2004 to review the details of the National Institutes of Health (NIH) prevention trials with the drug, and was among the health care leaders who reviewed the compelling scientific evidence of the effectiveness of 17 α- hydroxyprogesterone caproate (17P) to prevent preterm birth. We supported the clinical guidelines of the American College of Obstetricians and Gynecologists that recommended the use of 17P for selected patients at risk for recurrence of preterm birth. We were supportive of expedited review of 17P by the FDA because of our understanding of the efficacy of the drug and the known benefits to access, quality, and consistency of having the good manufacturing practices of a regulated pharmaceutical company responsible for drug production and distribution.
As FDA approval seemed imminent, March of Dimes leaders met with your staff and were assured that every effort was being made to standardize distribution methods, work with physicians and patients to streamline insurance and managed care issues, and most importantly, to ensure that every eligible patient who is offered the drug by her physician has access to the drug regardless of ability to pay. Your staff described the “care connection” program that has been created to assure all of these aspects of drug supply and availability, including a substantial financial assistance program for uninsured and under-insured women both in the private and public sectors. They also described efforts to work with public payers to assure access to 17P at reasonable costs for Medicaid, and other public health insurance plans.
However, since its approval on February 4, 2011, there have been numerous reports that the price of a course of treatment with MakenaTM could reach $30,000, thus raising questions about whether health plans and public insurance programs like Medicaid and CHIP will cover it. So we remain deeply concerned that the cost of this lifesaving treatment could be put out of reach to thousands of women at risk for preterm delivery.
Therefore, we respectfully request that you reconsider the market price of MakenaTM and commit your company to the promise that every eligible woman who is offered the drug will receive it without regard to ability to pay. The March of Dimes is prepared to work with Ther-Rx to help prevent preterm birth and we hope that you will be responsive to our concerns.

Jennifer L. Howse, PhD Alan R. Fleischman, M.D.
President Senior Vice President and Medical Director


We’ve certainly talked about whether we should give Ther-Rx back their money. It might be helpful as a public relations tactic. But we’re more concerned that a give-back would reduce funds available for our mission. We need both public and sponsor funding to sustain programs like research, health education, and advocacy. We’ve already committed the Ther-Rx sponsorship money for this year. Without it, we’d have to cut some of our programs for mothers and babies. We don’t think that you or the families of preemies would want us to do that. Especially not now when the federal government, states, and other private sources are cutting back their spending on programs for babies and children. So you can see the dilemma. In addition, by holding on to the money, we still have the option to make a public give-back in the future if Ther-Rx does not honor its promise that every woman who needs 17P will get it, regardless of her ability to pay.