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Wednesday, December 29, 2010

Thank You

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

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




Dearest Amanda,

We are so touched by the thoughtful gifts and cards. We feel so blessed to have so many people thinking of us. Between the nurses and the Knickerbockers, this
Christmas will be fond memory of kindness we wouldn't have otherwise known.

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

Merry Christmas,
The Kash Family
Jenny, Brian and Bryce

Monday, December 27, 2010

Behind the Scenes

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

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

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

And then, I realized why.

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

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

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

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

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

We're just so grateful that Charlotte has hers.

So much more than grateful.

Saturday, December 25, 2010

Home Again, Home Again

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

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

We wouldn't know what to do without you.

Wednesday, December 22, 2010

Her Timing Is All Wrong

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

Monday, December 20, 2010

Voice

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

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

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

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

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

Wednesday, December 15, 2010

Developmental Clinic

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

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

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

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

Tuesday, December 14, 2010

Cha-cha-cha-changes!

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

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

Y'all are awesome.

Stay tuned for some great things!

Monday, December 13, 2010

Button

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

1. Copy the html from the text box on the right
2. Go to your blog
3. Select "Design"
4. Click "Add a Gadget"
5. Select the "Add html" gadget
6. Paste the Html
7. Click save

Done and done!

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

Sunday, December 12, 2010

When It Hits You

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

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

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

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

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

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

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

'Cause you're important. Really.

Wednesday, December 8, 2010

Still Giddy

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


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

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

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

Eh, it happens.

Uncooperative

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

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

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

Nice.

Way to work with us kid.

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

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

Monday, December 6, 2010

She's Home!

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

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

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

Sunday, December 5, 2010

Unfinished


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

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

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

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

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

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

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

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

Micropreemies and their parents-- we're all just a little unfinished.
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Saturday, December 4, 2010

She Has A Following

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

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

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

Friday, December 3, 2010

In The Clear

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

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

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

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

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

Miracles continue to happen.

Wednesday, December 1, 2010

The "End" of Prematurity Awareness

November is over.

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

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

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

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

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

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

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

Prematurity doesn't end when Prematurity Awareness does.

Which means, we're not going anywhere.

Lucky you, huh?

:)

Monday, November 29, 2010

Baby Whisperer

OK, so our Occupational Therapist might not be a baby whisperer, but she does work wonders. Last week she did her first official therapy session (previously, she came by to "get to know" Charlotte three times-- yeah, she's that awesome).

When our OT began the session, CA was crying at the very sight of her pacifier and by the end of it, Char-baby was taking it! This OT worked for an HOUR on just de-sensitizing Charlotte's mouth and cheeks. It's been pretty amazing seeing the difference. It's like these therapists know something, crazy, huh? I guess you do learn things in school after all :)

Caleb wants rice RIGHT NOW and if I stop writing this, I'll never come back to it, so I'm posting it as is. More updates are coming soon. I promise.

Sunday, November 28, 2010

Till We Meet Again

Little Gabriel Morales ended his fight against Spinal Muscular Atrophy on Thursday. That debilitating disease will never overpower his small body again.

May his family feel his presence in their lives until they can hold him in their arms again.

Funeral Services:

Tuesday 10:00 am-1:00 pm

New London Presbyterian Church
1986 Newark Rd. (rte. 896)
New London, PA

Day 273

Charlotte Amalie-

Today celebrates nine months since your birth. 273 days of life.

The numbers tell us one story. In the past 273 days, you have spent 216 in the hospital. Those 216 days included heart surgery, chest tubes, abdominal surgery, eye surgeries, blood transfusions, sepsis, and more. The 57 days you've been home have been unbelievable. In those 57 days, you've had 18 appointments with a doctor and 14 therapy appointments. That leaves 25 days of just.being.home.

Your actions tell us another story. You've learned how to smile, how to bring your hands to your mouth, how to flatly refuse anything you don't want. {Let's be honest, you knew how to refuse things you didn't want from the very beginning.} You've learned how to blow raspberries and how to stick out you tongue (a very necessary skill for a little sister, I might add).

You're determined. You don't give up. You voice your opinion rather well for a little one without a voice. I'd say that you've developed a personality, but as any of the NICU nurses will testify, you've been this way since you were born. And despite your strong personality, you go with the flow. You're happy on the floor (on your playmat, we don't just throw you on the floor...), in the swing, or in your crib. You are learning to let us hold you. Previously, you thought that this was rather pointless.

We're so grateful for the past 273 days. We're grateful for the possibility of more. We're grateful for tonight, for tomorrow, for yesterday.

We're grateful you've taught us to appreciate each moment.

We're grateful for you.

Momma

Monday, November 22, 2010

More Updates

**Please check out our CHRISTMAS IN THE NICU page to see how you can be a part of our special present for families finding themselves spending Christmas day in the NICU. As always, thanks for all you do.**

Sigh.

It was one of those days.

In the past week, Charlotte has taken a grand total of 15 mL from the bottle. Total. In a week. Today at her therapy appointment, she wouldn't even take the chupi (pacifier). I'm losing it here, people. This was her one skill! We knew she could take a bottle, but the formula was just too thick. We had it in our heads that if we could just keep her going until she could take a thinner liquid, we'd be good to go.

Alas. It is not to be. Charlotte is currently refusing anything that comes near her mouth. Except for the Z-vibe. (I probably shouldn't write that down... tomorrow she'll refuse that as well!)

She's still taking a chupi when she's very sleepy, but its the last frontier. I know she's not going to be tube fed FOREVER, but it sure seems like it occasionally.

And thus ends my rant.

On a more positive note, the pulmonary team was very pleased to see Charlotte last week. They told us to not even think about weaning Charlotte at this time, which is disappointing, but it does take some pressure off of us. On the other hand, they were super happy with where she was and have continued her on all of her meds, with only an increase to her KCl. So yay for having something that's working!

That's about all folks!

My Latest Plan

Dear Blog Family-

I've been writing out my Christmas lists, and while I'm about 95% done with Christmas presents, there is one things that I'd really, really like to do this year.

I want to make baskets for the families who are in the NICU on Christmas. Obviously, not every family spending Christmas there will be celebrating Christmas, but it is the Holiday Season, and the stress involved with having a child in the NICU is pretty intense.

I'm asking you all to send me a greeting card (or two or three or ten) that I can put in a basket for NICU families. A card that says, hey, we know the NICU can be stressful, but there are people you don't even know thinking about you. A card that lets families know that others understand, that others are supporting them. A card that tells families they are not alone. I'd love to include pictures that your children have drawn, or notes to the families, or anything. These will be generic baskets, so it doesn't need to be anything specific, but I'd love to have a bunch of cards per basket, and I'll be making 15 baskets (so I'm hoping to get 45-60 cards).

Also, if you can include a gift card (restaurant, gas card, food, or cash) for a family, that would be wonderful. Nothing makes having your child in the NICU over a holiday "better" but it does help to know others are thinking of you. I know this time of year can be financially tight, so if a gift card is not possible, please, don't hesitate just sending a greeting card. I'm really excited about this and I'm even more excited to have you all involved.

Thanks so much!

Amanda

PS
I'll probably have an axe murderer come find my family, but oh well...

You can send the cards to:
529 Main Street
Parkesburg, PA 19365

Please don't stalk us, kidnap our children, or light our house on fire. (Our kids are high maintenance anyway).

PS again-
If you have sent a card or are going to send a card, please leave a comment or send me an email so I can make sure I have everyone's. Also, I promise to send you all a picture of the baskets you help create. Thanks so much!!

Wednesday, November 17, 2010

The Face of Prematurity

The March of Dimes is an incredible organization. It has helped to provide funding and research, and has saved the lives of many, many babies. Did you know that prematurity is the number one killer of babies? The March of Dimes hopes that one day, all children will be born full term. I pray for that day as well.

However, there is one problem I have with the MoD. They lead you to believe, with their nice posters and pretty pictures, that this is the face of prematurity:


And it is, to an extent. But what you won't see, what many don't like to acknowledge, is that this, this is the real face of prematurity:


Too often we look at babies like Charlotte and believe that she is "prematurity".

She's not.

Charlotte Amalie is the result of it. Prematurity is the 8 specialists she sees every other month. Prematurity is the three therapists she meets with once a week. Prematurity is the shots she gets every 4 weeks to avoid the common cold. Prematurity is the purell dispensers on my wall. Prematurity is missing Thanksgiving dinner or Christmas Eve parties with family and friends because there are too many germs.

Prematurity is recognizing that Charlotte is the outlier. She is doing remarkably well for a baby born 16 weeks early.

For so many others, prematurity means ventilators in their homes. It means a child who cannot speak, who cannot hear, who cannot walk. Prematurity means children who will never draw their parents a picture. It means children who will never be able to even hold a crayon. Prematurity is devastating.

Charlotte is a miracle. We are grateful everyday for her ever growing list of abilities. But for some, those abilities are not reality. When you pass those March of Dimes posters, please, feel inspired to give. Please donate to their cause. Their research, without question, saved our daughter's life.

But remember that the children pictured on the posters are not the face of prematurity. They are not the reality that many live with. As you read Charlotte's blog, keep in mind that she is what many parents would give anything to have.

So please, during this month of Prematurity Awareness, give to the March of Dimes. And remember. Remember what prematurity really is.

Sunday, November 14, 2010

An Update

We Interrupt this Prematurity Awareness Month programming to bring you an update on Miss Charlotte Amalie.

Charlotte's been doing really, really well this month. She's been home for almost three weeks since her last admission, and every day she seems to be getting better and better. The diuretics have really been helping, and her O2 sats have been great! We've gotten into a good routine of Speech Therapy on Mondays, Physical Therapy on Wednesdays and Occupational Therapy on Fridays, with an appointment on either Tuesday or Thursday. Yippee.

Her latest accomplishments include sucking on her hand, but she's not quite realizing that she has a hand yet... Go figure. When they say preemies are slow to pick up on things, dang, they mean slow.

We meet with the Pulmonary Team on the 18th and we'll know more about her lung/diuretics/oxygen situation at that time.

On the 10th we met with the Feeding Team, and they pretty much encouraged us to carry on with our current plan. We're offering the bottle two times a day and it's rather hit or miss. Somedays, she'll take 40 mLs, others, she won't take anything. Such is life. We've started with an Occupational Therapist, in addition to the Speech Language Therapist who will (hopefully) be able to address Charlotte's sensory issues with the bottle. And in case you were wondering, yes, Charlotte has issues :)

And that's about it!

Wednesday, November 10, 2010

The Luck and/or Guilt

The night Charlotte hit her 24 week viability marker, a doctor from the NICU came to speak with me in the hospital.

She explained the risks. 30% of babies born at Charlotte's gestation survive. 70% do not.

The week after Charlotte was born we had a meeting with another doctor from the NICU. He explained the risks. 90% of babies born, who do survive, at Charlotte's gestation have a morbidity.

Those were the statistics, but not the reality.

By all means Charlotte has not only survived, she has thrived.

Sure, she has a g-tube, is on oxygen and has visual impairment (the level of which is unknown). Yeah, she's developmentally delayed.

But there's an equally long list of things that didn't happen. Things that SHOULD have happened. Things like death, brain bleeds, shunts, trachs, and NEC. Charlotte has a general sense of her surroundings. She can move her arms and her legs. She has made progress in every area.

We have every reason to believe that even if Charlotte develops Cerebral Palsy, she will have a mild form. We can, with caution, say that Charlotte both hears and sees well enough to lead an ordinary life. {Everything we say is with caution... there seem to be NICU gods who laugh at our successes :)}

We feel incredibly lucky. Scratch that. We feel blessed.

We also feel guilty.

We escaped things that we should not have escaped. Statistically, we should have buried our daughter. That's the reality of Charlotte. She should not have survived. But she did. And every time I hear someone's baby lost their NICU battle, I feel guilty that Charlotte did.

Not that I would trade away our success, well, for anything. But I feel guilty that we have been given so much. when others have lost so much. I wonder, why us? Why is that wonderful, loving, caring family going through so much? It's not even a comparison between babies who lived and babies who didn't. I feel intense guilt when I meet a preemie who is blind and deaf. It eats away at me when I see a child with a trach. I could go on, but I won't.

I know there is no rhyme or reason. Charlotte did not come early because of anything I did. She did not live because she's a fighter-- believe me, I've seen more "fighter" in babies who have passed away than in any child who has ever lived. Charlotte lives because she does. And that's what it comes down to. She has a purpose here and she has been given the skills she needs to complete it. Other children have different purposes. And they need different skills. We are given what we need.

And that's the reality of parenting a preemie. You are living in a land of limbo, somewhere between being incredibly angry at the hand you have been dealt, and feeling incredibly guilty for all that you have survived, all the while being so grateful you've even been given the chance to try.

And so, we remember that that is the moral of parenting in general. Whether we are parents of a preemie, a full term child, a child with disabilities or a child who has passed away, we simply try. Sometimes we are overwhelmed with guilt. Other times we feel incredibly blessed to have such a special individual as a part of our lives.

But we try. We don't always do it properly. But we try.

Tuesday, November 9, 2010

The Whole New World

The past few posts have been a bit of a downer, so here's your dose of smiles.

Being a parent of a preemie opens a world to you. A world you had no idea existed. Sure, you read about things like viability and premature labor when you (or your wife, or your friend) were pregnant, but they didn't mean anything to you.

It's like how you can never understand how much you'll love your own child until you see them there, dirty and sticky, covered in a lollipop, reaching up for you, saying, "Mommy, I wanna snuggle." Anyone but a parent would run the other direction (alright, even as a parent, I've been guilty of doing JUST that... but I digress). But as a parent, the dirt, the snot, the poop, the cries-- they don't get in the way of seeing this little human as something miraculous. And you just cannot understand until you are a parent yourself.

So it is in the preemie world.

You just cannot understand how much these parents devote their lives to their children. Being only a few months into this world, I feel very much like an outsider. Like a new kid at school, I'm not sure where to sit at lunchtime. But not in a "they don't like me" kinda way. More in a "I wish I could be as cool as my older sister" kinda way. I am, by all means, a novice. And I wish I could explain the power that these parents bring to the table.

Have a question regarding an IEP? I can give you the names of 5 parents, 3 lawyers and 3 school board officials who will go to bat for you.

Have an inkling that something might not be right with your kid? You'll get an answer of 15 different possibilities with 15 detailed experiences of kids with the same symptoms.

Need information on a medication? A medical device? A nursing agency? Wondering how to confront your insurance company? Not sure what to expect at an appointment with an Ophthalmologist? Or an ENT? Or what will happen during your child's surgery? No worries. I have people to help with that, too.

These people are incredible.

The most incredible part of this New World is that the civilians of Preemie World are living right under your nose. They go to your grocery story, they shop at your mall, they work with you, their kids go to school with your kids... they are everywhere.

Before Charlotte, I really, honestly thought that people went to the hospital at 40 weeks pregnant and came home three days later with a child. When I was in labor with Caleb, Peter and I walked through the parking garage on our way to the hospital. I looked at him and said, "When I walk back here, we'll be carrying a baby!"

I was totally ignorant of the world of the NICU. I hadn't thought that some people make that walk no longer pregnant, but without a child. I didn't realize that people walked back to their car and called a funeral home. I never though that we might not have need of the nursery at home. In that sense, we are incredibly lucky (yet another post, for tomorrow). Charlotte has come home. She uses her nursery. We know her. And no matter what happens to her tomorrow, or the day after that, we know her. We will always know her.

As much as this journey has pained us, I am so grateful for the world we now know exists. I am a better person because of the people I have met through all of this. And when I don't live up to the standards of this Whole New World, I know there are people surrounding me who will assist in whatever way I need.

The Comparison

It's inevitable. Every parent does it. Especially those parents who say that they don't.

As parents, we compare our children to others. We track their progress by seeing what other children are doing. We smile when our children are ahead. We worry when our children are behind. We calculate how long we have to make milestones. We don't necessarily do it to be competitive (but we all know a parent who does...) we do it to keep track, to keep on top of the next goal, the next big deal.

For preemies, the comparison game is always lose-lose. Compared to children her age, Charlotte is grossly delayed. Compared to children her adjusted age, Charlotte is generally delayed. Compared to other preemies, Charlotte is above average in some cases, below average in others. But even if she is "better" at something than another preemie, how can you be happy about it? For one thing, it doesn't necessarily mean your child is doing well, and for another, you are trying to one up a micropreemie... how pathetic is that?! (Not to mention the guilt it induces... but that's a whole 'nother post) It's easier to avoid the comparison game. But it's not always possible. A friend will have a full term baby. So will a brother or a sister or a cousin. There is always going to be a reminder of where your baby *should* be.

And it hurts. Sometimes, you are prepared for it. Sometimes you aren't. And you never really know when it will hit you. You'll see a baby breastfeeding, or a toddler walking up the stairs and you'll realize my baby will never eat normally, or my second grader still can't walk up the stairs correctly. People will make comments like, "Next year at this time, when your baby is running around everywhere," and you have to choke back the tears.

Charlotte won't be running around anywhere next year. She's eight months old, and she doesn't roll over. But that's OK. I'm fine with where Charlotte is.

It's where she isn't that hurts.

It's not a pity party. As parents of micropreemies, we are more proud of our children's accomplishments than most. We yearn for the day they finally "get it." Today, Charlotte looked at her hand and her therapist and I did a happy dance. Seriously. We danced. I told everyone. "Charlotte looked at her hand! She's starting to recognize her own body!" I'm as proud of her as I would be if she was accepted to Harvard.

But we mourn the loss of "normal." We wish these accomplishments could go unnoticed. Because we want the most for our children. So we mourn the things our children will never know. And we worry.

We worry that someday, they will compare as well.

Monday, November 8, 2010

The Laughter

I like to joke about Charlotte's prematurity. It's the way I handle things that would otherwise find kinda depressing. The thing is-- we have some pretty funny stories.

Not funny like "Knock, knock, Who's there?" kinda funny. But funny like, "Seriously?!? Can you believe how many stars had to align for that to even be possible?" kinda funny.

And when I joke about it, it's OK to laugh. Because I wouldn't be joking about it with you unless I felt comfortable with you. Because NOT laughing at it, makes the situation really, really sad. And I don't want to cry with you. I've cried enough on my own. I want to laugh with you.

What's NOT OK? Making jokes yourself. I know, it makes things unfair, but it's a simple rule. You can laugh at my jokes, you cannot make jokes yourself. My kid. My jokes. Got it?

'Cause really, when you say things like "Oh, you just didn't want stretch marks, eh? Ha ha ha," it makes me want to hit you. And I'm not a violent person. I would give anything to have a full term child-- yeah, even stretch marks. Yes, I'd love to be 60 pounds overweight if it meant my baby came at 40 weeks. So, No, I didn't deliver early to avoid weight gain. Those kinda jokes? Bad.

When I make light of something, it's because I have been through hell to get there. It's a rite of passage. And I need to be able to laugh about this journey sometimes, because otherwise, if I cannot laugh, the past 9 months have just been horrid. If I cannot find some humor in this journey, then I don't want to think about it at all.

But I'm not ready for your humor yet. Maybe in about 15 years.

Maybe.

Sunday, November 7, 2010

The Fear

Disclaimer: I know, I know. Charlotte is doing so well. This post is not about reality, but about the perception of reality. This is what preemie parents live with. Sometimes it is so strong you can barely sense the world around you. Other times, hours pass without even thinking about it. Some grow out of it. Some don't. But this is it.

I call it "The Fear."

Peter calls it "Expectations."

I live with fear. He lives without expectations.

Either way, it's how we, as parents of a micropreemie, cope. It's how we get through the day sometimes. Now that winter is officially here, it's how I make it through most days. Some may think we're crazy. Others might enable our coping mechanism. Other preemie parents give a knowing nod. "Free-range" parents probably have a stroke.

Every day I wonder if today will be the day that Charlotte gets so sick she'll go to the hospital but never come home. Every day I look at her and wonder why she made it through the night. It's a blessing, in some ways. I appreciate every.single.smile. I anticipate her, I know her moods, I know when something.is.just.not.right.

In other ways, its a curse. I'm terrified of becoming "too" attached. I can't make plans for her. She'll be one in February. But I can't think of what her birthday will be like. I can't. Because I live with the fear that she'll never see it. Peter has no expectation of celebrating her first birthday. This is not to alarm you-- Charlotte is as good as ever. She's healthy, she's making significant progress. But as you may learn, you never trust a NICU baby. A simple cold put her in the hospital for a week. What will the flu do? What would pneumonia do?

The frightening thing about "the fear" is that just as you begin to convince yourself that it's way out of control, something happens. Your child goes septic or stops breathing or has a horrible day or night or moment. And the fear is back.

And so every day, we wake up, never knowing if it will be the last one with Charlotte. Maybe it's a good thing. Maybe it will cripple us. But it's the reality we live with, every day. The majority of babies born at Charlotte's gestational age and size do not survive. Charlotte has.

But the knowledge that she's "beating the odds" nags at you; it eats away at the back of your mind, and you wonder-- how many times can she win?

Prematurity Awareness Month

For the next few days, I'm going to blog about what life with a micropreemie is like.

It might be uncomfortable. It's going to be honest. Sometimes it will be funny. Other times it will be sad. But if no one talks about what life is really like, then you'll never know, right? So here it goes.

Life with Charlotte, as we know it. Look for it on a blog near you.

Fake Out

As my blog friend Richard will tell you, feeding preemies is... well, something that shouldn't be written on a family blog.

She's back to taking nothing. In the tube it goes. On with our day go we :)

Friday, November 5, 2010

Threats Work

So just as we were threatening to start solids due to her lack of interest in the bottle, Charlotte took 30 mL last night, 40 mL today at noon, and 45 mL at 6pm. That's more in a 24 hour period than she's taken in the last week combined.

I know I'm jinxing this by putting it out on the internet, but....

WOOOOHOOO!!!

Wednesday, November 3, 2010

I know, She's Cute, Right?

11/2/2010

I can't decide if I haven't updated the blog for a week because we're so.dang.busy. or because absolutely.nothing.is.happening.

It's either one.

Charlotte's had three doctor appointments since she was discharged a week ago. Everyone agrees that she looks pretty great. I think they are correct.


Here's a run-down of her latest stats:

Weight: 6.4 kilos (14 pounds even)

Length: 58.5 cm (23 inches)

Heart: Her heart rate is finally coming down to a "normal" range (I say this, even though she's been elevated all day... hopefully I'm not jinxing this). Her heart rate while sleeping is usually somewhere around 100-120 and when awake, her heart rate is sitting at 150. We believe that being back on the diuretics has made breathing so.much.easier, which, in turn, has lowered her heart rate. That's the theory at least.

Lungs: She's still on 1/8 L, and is very, very happy there, so we're not playing with it. If it works for her, it works for us. We've learned our lesson. She has an appointment with the pulmonary department later this month, so we'll work with them on weaning.

GI: Charlotte's taking 99% of her feeds through the tube still, which is frustrating at times, but not unexpected. She is still on honey-thick liquids, so it must be so difficult for her to get anything out of the bottle when it is offered to her. Of course she isn't going to take anything! Sigh. It is disappointing though, that after two months of being offered a bottle, she hasn't made any significant progress. So we're starting to look to the future. Spoon feeding! We'll work with her Speech Therapist on rice cereal soon. Maybe that will offer her more oral feedback. Cross your fingers for us!

Eyes: Charlotte's eyes were examined when she was admitted to the hospital last week, and we have another follow up appointment next week to check her eyes again. They are just watching her a little more closely, as one of her eyes has started to get "stuck" on some objects. Nothing too much to worry about-- they are just being cautious.

Vocal Cords: Her stridor comes and goes, and doesn't seem to have any pattern, other than it's worse when she's sick or sleeping. She will be scoped again in December.

Meds: Her prilosec was just increased to a more weight appropriate dosage. She's also taking Aldactone, Diuril, KCl, Albuterol and Flovent. (Thank goodness for 18 hours of nursing, right?)

Early Intervention: She sees Speech Therapy for an hour and Physical Therapy for an hour each week.

And that's about it!!

Another Request

It's amazing how much need there is, isn't it?

When Charlotte was born, a woman in our church emailed me. She told me how happy she was for our addition, how sad she was that the circumstances were so stressful. She was one of the few people to actually "congratulate" us with genuine sincerity {but not the only person}-- she knew we faced a terrible road ahead (her sister had a micropreemie) but she was genuinely happy for our family growing to a family of four. It was refreshing. Heather helped organize much needed help. She worked quietly and privately, without any fanfare at all. She emailed me regularly, just to check in, to see what we needed and how she could be of help. She emailed me just to say, "Hey, I'm thinking of you." Her emails helped me get through the day quite often. She seemed to know just when I needed a hand, when I was just not going to get up without help. Her emails lifted me.

Now Heather needs some "emails". She has recently been diagnosed with Myelodysplastic Syndrome and as you can imagine, she and her family need some help.

A website has been set up by her fabulous neighbors. The website allows people to donate (to help with the extreme financial burden), to sign up to bring meals, to help with Jayson's growing to-do list, and my personal favorite: a prayer calendar. The prayer calendar allows Heather to know that someone in particular is praying for her that day. So those days when she just can't get up, when she needs a hand up, she'll know who is offering her one. I love it.

If you can help, in anyway, please do.

Thursday, October 28, 2010

8 Months

This little gal is 8 months old today.

Her current abilities include:
*Open mouth smile
*Finding her hands
*Kicking her legs
*Holding her head up
*Sucking on the chupi with minimal assistance

Her interests include:
*Peek-a-boo
*Her "frog" from the NICU (a rice bag)
*Mirrors
*People
*Being swaddled

She thoroughly dislikes:
*Eating from a bottle
*Falling asleep while being held

She weighs:
*6.2 kilos (13 pounds, 11 ounces)

And we love her very, very much.

Especially because she came home last night.

Monday, October 25, 2010

Should Have Known, Right?

I should know by now that Charlotte doesn't do ANYTHING on anyone's schedule. It's all about her, baby.

Her lungs are still wet and she's back up to 1/2 L oxygen. The doctors are playing with her diuretics to find the proper combination for Miss Charlotte.

Maybe she'll come home Wednesday? We're hoping, but don't tell her.

Sunday, October 24, 2010

Fingers Crossed

We're hoping that Charlotte can come home tomorrow (Monday). She's back on almost all of the meds she got rid of last trip to the hospital, but hey, we'll take a baby on drugs over a baby in the hospital.

That sounded bad.

Anyway, the plan is for Char Baby to head home tomorrow. Keep your fingers crossed that she behaves!

Saturday, October 23, 2010

Update

Charlotte's oxygen requirement increased to 3/4 L late Thursday, but they were able to wean her back down to 1/2 L last night (Friday).

She's been put back on her albuterol and diuretics, both of which were discontinued last time she was in the hospital. If they can successfully wean her to 1/4 L, they'll send her home to continue her recovery.

They've also decreased her feeds, as she's getting too fat, too quickly.

That's about it!

Thursday, October 21, 2010

Consider Us Admitted

Charlotte's back at CHOP. She just loves this place way too much.

Her oxygen demand increased significantly and her lungs "sound like junk" according to the doctor. Caleb and I have been dancing around a cold for about a week now and I think Miss Charlotte has gotten jealous and wants to share.

The good news is that she does not have a fever and her chest x-ray looks the same as always: crappy, but consistently crappy. No sign of pneumonia. Phew.

They are running tests for RSV, pertussis, etc. We should have some results later today.

Thanks!

EDIT:

10/21/10 @ 1845: Charlotte is now running a fever, but it is being controlled easily by Tylenol. She tested positive for rhinovirus (the common cold) and negative for the eight other viruses screened.

Tuesday, October 19, 2010

Consider Us Whipped


How can you not love this face?

Life As We Know It

Life these days seems to be surviving from one appointment till the next. Our days are marked by which doctor/therapist/specialist we are seeing that day.

To make things even more interesting, Caleb has been hacking up a lung (possibly two, but he seems to be compensating well) for the past week. Trying to keep him from "his baby" has proved to be difficult. This morning he stood at the top of the stairs and yelled, "I come down now! I'm all better now. No more more sickies." He then proceeded to cough for two minutes straight. Nice.

Charlotte is holding her own, quickly learning to ignore all of us and do her own thing. She is extremely entertained by the TV (so much for no screen time until she is two...) and loves the mirror. These activities reassure us that her eye sight is not as bad as the doctors had said was possible.

This week we've had two therapy appointments, one pediatrician appointment and a random nurse stopped by to see how we were doing. Considering we have nursing for 16 hours a day, I think the nurse visit was a bit excessive :) Despite the 16 hours/day of someone else "watching" her, I still feel like I'm always behind. For example, here's a list of her appointments for the next six weeks:

Surgery follow up from her G-tube/Nissen
ENT (Ear, Nose, Throat) follow up for a repeat scope w/ the airway clinic
Eye follow up from ROP
Feeding Clinic Evaluation
Repeat Swallow Study
Developmental Clinic @ CCH
Weekly sessions with Physical Therapists and Speech Therapists
Biweekly check ups with her pediatrician

So yeah, we're trying to find a rhythm. Charlotte will celebrate her eight month birthday next week. It's hard to believe how much has happened in such a "short" time. We love having her home, and can't believe that it was only a year ago that we were telling family that we were expecting.

Crazy, huh?

Wednesday, October 13, 2010

The Prequel

Charlotte Amalie--

I remember sitting in the doctor's office with the trash can, because I couldn't go more than ten minutes without throwing up.

"There's medication you can take to stop the vomiting," the doctor suggested.

"I've taken it. I think I may have thrown it up," I gagged.

"You've lost 30 pounds since conception. We have to do something," the doctor pressured.

"Seriously, wait one second," I paused the conversation to empty my stomach once more. "I'll do anything at this point. What else can we try?"

"You could still terminate, you are only 14 weeks along," the doctor offered.

"I'll do anything but that," I counter-offered. And then I threw up again. It was my 37th vomit of the day. I remember because the doctor wanted me to count so I could tell her an exact number at my 2:00 appointment.

I went home that day without many options. The following week I was hospitalized for severe dehydration. After several days of many different treatments, we decided on the PICC line.

Things looked good for about three weeks. Around the 18th week of my pregnancy, I started bleeding. I went on bedrest. It wasn't long until contractions started.

"We don't have to stop these contractions. We could let the labor progress," I was told in L&D.

But I needed this pregnancy. I needed you to be OK. I needed it. So I took shots to stop the labor and prayed.

At this point I was seeing the doctor every week, with routine ultrasounds. I mentioned at my 20 week appointment that I felt a lot more pressure than I had with Caleb. I was certain that it was just the difference between a first pregnancy and a second pregnancy. When I saw the doctor's face after the internal exam, I knew my certainty was incorrect.

"You need to get over to labor and delivery right now. I'm calling an ambulance." My doctor was practically out the door before I could say, "No, no, the hospital is just across the street. I can drive."

I was wheeled up to labor and delivery. Your father was working in Norfolk and was probably more scared than I was. I was just numb. But clear as day, I remember:

"There's funneling.
Your membranes are bulging.
You're starting to dilate.
You're fluid levels are low.
There's nothing we can do.
Do you understand?
There's nothing we can do.
If I were you,
I would be worried."

I should be worried. I laid in bed at the hospital that night wondering if I would still be pregnant when I left. But I was. I didn't know for how long, another 2 weeks? Another 20? I really didn't have any idea.

I remember the snow storms. They were historic. Your father had to drive home from Norfolk to take me to the hospital because we couldn't get out of our driveway. I was leaking again. I think that's when I started to admit to myself that this was not going to end "well". I can't imagine what that drive must have been like for your Dad. Would his wife still be pregnant when he got there? Would he ever know this child?

We stopped labor again, but since we were only at 22 weeks, they sent us home once more. It wouldn't be long before that hospital became our second home; it wouldn't be long before you called it home.

The following week we went for dinner. What could be the harm in that? I would sit in the car, sit in the restaurant, sit in the car again. What I hadn't planned was having a full rupture of my membranes in between. I was totally in denial about it. I called the office and asked if I could just come in for an appointment the next day instead of going into the hospital. They told me if it didn't happen again, if I didn't have any more leaking, I could see the doctor the next morning. Before we even left the parking lot, my pants and the car were soaked.

It had happened.

This time I was "close enough" to that magical 24 week threshold that they admitted me. The nurse changed my due date in the computer, since I had had one ultrasound showing me due a few days earlier, so that I could have an extra three days.

Those three days probably saved your life. I hung out at the hospital for five days. Wonderful friends and family came to visit me. Kay even drove in the snow. And she's from Atlanta. Children colored pictures for me, acquaintances prayed for me, family coached me through the unknown. Finally, the night I turned "24 weeks" the NICU came to see us. "Hopefully you won't need us at all," Dr. Kaplan said. I couldn't remember her name after she left. Now I could tell you about her children.

Saturday evening I was cramping a lot. The nurse told me it was from being in one position all the time. She said it wasn't anything, that I should stop worrying, that I was reading into things too much. Sunday morning I woke up with severe bleeding. The day nurse, Kathleen, held my hand. She called the doctor in. She held my hand again. She told me I should call your Dad. She told me that we were going to survive this. That no matter what happened, she would make sure we got through it. She never said the word 'death' but I knew that's what she meant. That's what everyone thought.

I can't really remember what happened next. I was on drugs to stop the labor, but they weren't working. The doctor came in and told us that we needed to decide. We needed to decide if we wanted to do a C-Section (you had flipped and were now breach) or just let the labor progress without interfering. I was dilated to a two and your legs were both out. We needed to decide.

How could I choose something like that? Yes, please, take my baby 16 weeks too early. No, thank you, let my baby die in labor. Were those really my choices?

"Do the C-Section." The doctor left to get consent forms. Kathleen held my hand again. She squeezed it tightly and said, "Are you alright? You don't have to be alright. It's OK to be scared."

I've never been so scared.

Your father and I said a prayer. A prayer that no matter the outcome, we could have the strength to overcome. That no matter what your journey was, a long life or a quick return to Heaven, that we could be at peace. That we would know you had fulfilled your purpose.

The anesthesiologist interrupted the prayer. We had said all we needed to say to God and there were forms to sign. Dad looked ridiculous. Having just come from church, he was in a dress shirt and the blue paper scrubs they give to fathers in the OR. His collar and long sleeves hung out. He was annoyed that being a medical student didn't get him real scrubs. He was just trying to focus on anything but the gravity of the situation.

The C-Section was traumatic and I had to be knocked out. I remember waking up, and wondering how I should word it. How do you ask this kind of question?

"Is she alive?"

Yes, baby girl, you are alive.

More so each and every day. Thank you for showing me what living is really about.

Yours always,
Momma

Gulps

Charlotte had her second swallow study on Tuesday.

She aspirated with the nectar consistency (why do I feel like I need to capitalize Nectar?) in both side line position and cradle position. Bummer.

However, she was able to take the honey (Honey?) consistency in cradle position. (Which is how most babies feed). The speech therapist also thinks that when she is developmentally ready (ie can hold her head up) that she will be able to swallow pureed foods safely. Awesome, huh?

She's still disorganized during her suck-swallow-breathe pattern. Hers looks more like:
suck, suck, suck, chomp, chomp, suck, suck, uhhhh is there something in my mouth? suck, suck, ohhh swallow, swallow, swallow... dang, why can't I breathe?, GAG, gag, gag, turn purple, BREATHE, breathe, breathe.

I guess baby steps are appropriate for, uhh, a baby.

Go figure.

Friday, October 8, 2010

Definition


Recently, I was asked to write a brief summary of Charlotte. This summary is to be posted to several websites this month, as October 15th is "Pregnancy and Infant Loss Day." Of course, "brief" is slightly difficult when it comes to summarizing Charlotte, but I did my best. Here it is:

Charlotte Amalie was born at 23 weeks, 6 days, weighing 1.2 pounds and measuring 11 inches long. After more than 200 days in the NICU, PICU and ICS floors of the hospital, she is a little over 7 months old, and lives at home. Miss Charlotte weighs in these days at 13 pounds 4 ounces. She's had a PDA ligation, Retinal Detachment in her right eye (2 surgeries), ROP Stage III in her left eye (1 surgery), Heart Failure, Chronic Lung Disease, Anemia of prematurity, was vented for 8 weeks, has a Nissen to control her reflux, is G-tube fed, and was recently diagnosed with a paralyzed left vocal cord. She's had over 27 blood transfusions, numerous rounds of Sepsis, and came home with oxygen, apnea monitors and continuous feeds.

That's how many see Charlotte. And to an extent, they would be correct. But to a much larger extent, they couldn't be further from the truth.

Charlotte is our baby. She's Caleb's little sister and Patti's granddaughter. She is Aunt Shayla's niece, Emily's cousin, and Louise's great-granddaughter. She is so much to so many people. She is the reason my heart breaks when I see a "normal" baby; she is the reason my heart rejoices when I think about what could have been.

Charlotte will not be able to outlive her prematurity. For the rest of her life, it will be the one thing that defines her. But it will never be the only thing that defines her. Some may never be able to move past her medical conditions, while others may barely notice them. Either way, who she is, is going to be up to her. It is our job, it is our responsibility, to create a world in which she has the ability to write her own definition.

Because that's who Charlotte is-- whomever she wants to be. And that's exactly how we'll take her.


And there you have it. Charlotte in 400 words or less. The comment section won't let you write that much-- so tell me, what's your one word definition for Charlotte? How would you define our girl?

Thursday, October 7, 2010

Stats

Today at Charlotte's appointment her stats were:

Age: 7 months, 9 days actual {from her actual birthday}; 3 months, 16 days adjusted {from her due date}

Weight: 6.01 kilos (13 pounds 4 ounces!)
Length: 57.2 cm (22.5 inches)
Head Circumference: 37.5 cm (14.75 inches)

She's a chunky, chubby ball of baby and we're so proud of her rolls.

So is her pediatrician. She curbs her enthusiasm by telling us to remember that someday, Charlotte will actually have to spend energy to eat and her growth will slow down dramatically. But for now, Charlotte "chugs" her rocket fuel (her formula is still fortified) and is gaining weight beautifully. Actually, if we were just going on her weight, they could probably put her on regular formula, but she needs the rocket fuel to keep her head (and brain) growing. Details, details.

Doctors can be so picky sometimes :)

Tuesday, October 5, 2010

Developmental Clinic Results

We got the official results back from the Developmental Clinic and they read like this:

(She was 7 months actual, 3 months 10 days adjusted at the time of the Clinic)


Verbal:
Receptive: 3 months 10 days
Expressive: 20 days

Motor:

Gross: 2 months 0 days
Fine: 2 months 0 days

Cognitive:
3 months 0 days

We had her Early Intervention Initial Assessment yesterday and after nearly 4 hours of evaluation they determined that she will qualify for one hour of Physical Therapy and one hour of either Speech Therapy or Occupational Therapy with a feeding specialist. So a total of two hours of therapy every week, with the nurses (and parents... we do stuff to, I promise!) doing her exercises the other days of the week.

Early Intervention will send me their official report, but they were pretty much the same as the Developmental Clinic results. Charlotte is acting like a 2 or 3 month old baby. Which is about where we hope she would be.

They will focus on helping her to move better (she has high tone throughout her body), helping her to eat more "efficiently" and helping her to adjust "socially" (ie, helping her to bond and make attachments to family-- spending seven months in the hospital doesn't lend itself to much "bonding" time).

And next up, her stats from her pediatrician's appointment. See you then!

Saturday, October 2, 2010

Best Friends

Charlotte's BFF from the NICU, Bobby, is coming home next week. (Super, huge YAY!!!) His mom is a super social media guru (she's a fashion blogger by trade), so she's live tweeting throughout her 24 hour "look, we can take care of our baby" day at the NICU.

Wanna see what life in the NICU is like for a micropreemie? Follow her twitter-ings at http://twitter.com/mymicropreemie

Thursday, September 30, 2010

PS

I know I just posted about another family who needs some help, but sadly, there is a lot of suffering in the world.

If you get a chance to check out this family's blog, you'll read the story of a mother. You'll read that two weeks after delivering three healthy babies, she suffered a major brain hemorrhage. She's been in the hospital for ten days. She was extubated today and she's working hard to make it back home to her babies, but she has a bit of a fight herself.

Isn't it a miracle how many times this whole getting pregnant/being a mom/having children/growing old thing works? There are so many things that can go wrong, so many people who struggle to do the very things that others find so easy. It really is a miracle that it works as many times as it does.

So say a prayer tonight for those times it doesn't work, for those people who struggle.

Thanks for making our stumbling block into a stepping stone.

Home Updates

Charlotte has had a busy week just laying there getting bigger and bigger. At her Developmental Clinic appointment, Charlotte weighed in at 5.75 Kilos (12.5 pounds), measured 21.5 inches and had a head circumference of 37.5 cm.

That's not on the chart for a 7 month old, but for a 3 month old (her corrected age) she's in the 40th percentile for weight, and sigh, not on the chart for length or head circumference. But 40th for weight! That's super exciting.

Also at her developmental clinic she was determined to be right on target for a 3 month old. Which is HUGE. The only section she scored below average (as in, what should a normal 3 month old be doing) on was verbal communication, but umm, she has a paralyzed vocal cord... we were not expecting her verbal reasoning to test very high at all.

I'll post the actual scores when I get them in the mail, but she was on target exactly to.the.day of her due date. It was pretty exciting.

Other than that, we've had to head back to CHOP once this week, to have her gtube replaced, but it was quick and (for me at least) painless. (NOTE: changing a gtube is yucky. REALLY yucky).

And that's what we're doing these days. She's using oxygen in the car, at night and during her feeds, but she does pretty well otherwise.

That's our story. What's yours?

Monday, September 27, 2010

Help Help Help

There are times in everyone's fight when you come to realize that things are really not that bad. Sometimes, that realization comes because of progress made... other times, that realization comes when you see the fight others are waging.

A little boy, Gabriel, is fighting the hard fight. Born with Spinal Muscular Atrophy type 1, Gabriel is only four months old. His life expectancy is less than 1-2 years.

His family is also fighting the hard fight-- learning the intricate world of his medical condition. His mom, his dad, his two brothers... they are all working hard to make life easier for Baby Gabriel. His grandparents, his aunts, his uncles, his cousins-- they all love him, too.

So let's make this journey a little easier for them. Let's carry their burden as they carry Gabriel's.

You can click here to make a donation to the family.

You all gave us a miracle. You gave us the love and support we so desperately needed to get through Charlotte's long journey. Gabriel's journey is going to be much longer, and much harder.

Give what you can financially. Then give what you wish you could afford to give in the currency of love, hope, and strength.

Thursday, September 23, 2010

Discharge Stats

Charlotte was discharged today and is residing happily at home (as long as someone is holding her constantly... otherwise, not so happy).

Here's her latest run down:

Weight: 5.4 kilos (11 pounds 14.5 ounces)

GI: Currently taking 22 calorie Good Start (don't even get me started on having to use Nestle formula...) 75 mL 4 times a day, and 50 mL/hr for ten hours at night, for a total of 27 ounces/ day.

Lungs: On room air, except for car rides. (She flunked her car seat test miserably... oh well)

Meds: One. Can you flippin believe it? One. Prilosec. Awesome.

Follow-ups: Pediatrician, NICU follow-up clinic, Airway Team (ENT), Speech, and Eye.

Other: Enjoy family.

Caleb got in the car with her today and said, "Oh, Mommy, you found Baby Charlotte! I thought she was lost! I missin' her all the time!" (Does everything a two year old say end in an exclamation point?)

That's all folks, I have to go take care of my baby.

Love.it.

Wednesday, September 22, 2010

Look, Mom, No Tubes!



There's peaceful, sleeping Charlotte:


And then, there's Grumpy, Why-the-heck-are-you-looking-at-me Charlotte:



I just love that you can see her.

I love that people who meet her will see her face, and not some oxygen tubing.

I love that she can finally sneeze without something blowing back in her nose.

I love her.

With or without oxygen/G-tubes/NG-tubes/apnea monitors/pulse-ox's.

I love her.

And she's coming home.

Tomorrow.

(Let's hope this time, it's for keeps)

Monday, September 20, 2010

Baby Switch

OK, I'm fairly certain that someone switched my baby on the transport from the PICU to the ICS floor. Despite the fact that I walked the entire way with her, and that she has the same medical record number, it MUST be a different baby.

Charlotte Amalie is an interactive, smiley, happy, non-wretching baby these days. She's also breathing room air. For the past 30 hours, nothing but room air. It must feel fantastic to have those tubes and tape and everything off your face.

So yeah, I know I dragged my feet on the Nissen... I know, I threw a fit about her needing a g-tube... but I'm here to tell you, uhh, I was wrong. {Don't tell anyone}. It's only been a few days, so my opinion might change in the future, but I am documenting it now: this procedure has made a HUGE difference for Charlotte.

Charlotte's scheduled to come home sometime between Wednesday and Friday. The past two weeks in particular have been pretty difficult. We've gotten some rough news, we've weathered some crazy storms, but days like today, make it all OK.

Well, days like today, and long, long naps.

Saturday, September 18, 2010

Movin On Up, to the West Side

CA is heading to the West Side today. Four West, Seashore House, to be specific. Her brady episodes have gotten fewer and farther between, so we feel confident that it was just the sedation lingering longer than normal. Now we know :)

We're happy to report that Charlotte is back to 1/8 L oxygen, and is being moved up to full feeds today. Hopefully by Monday or Tuesday, we can be talking about discharge.

Yay for good news!

Friday, September 17, 2010

PICU Day 3

Miss Charlotte is doing well here in the PICU. So well, in fact, she has decided to never, ever leave. (OK, that's an exaggeration).

For the past 36 hours Charlotte has been dropping her heart rate, an event called bradycardia, which is frowned upon in the medical field. Charlotte's resting heart rate, as you may remember, has always been pretty high-- a side effect, most likely, from the PDA damage. Most six month olds would typically have a heart rate around 90-100 beats per minute. Charlotte is usually around 150. Not alarming, as every kid is different.

However, for the past day and a half, Charlotte has been dropping her heart rate to well below 100-- mostly to the 70's and 80's but a few times down into the 50's and 60's. All the major "problems" that doctors worry about have been ruled out: She's not septic, she's doesn't have a blood clot, she doesn't have a brain bleed, she's keeping her oxygen sat's up, etc. There doesn't seem to be any symptom to go along with these drops in heart rate.

Last night a CT scan of her head was done, to rule out an acute brain bleed, and it came back "normal for a micropreemie." Meaning, nothing happening right now, but there was "significant loss of brain mass" and "increased cerebral spinal fluid to compensate for brain loss due to a prior incidence." Prior incidence being born way to early. The beautiful part of being a preemie is that nothing is definite. Brain loss like this could mean severe impairment, or it could mean nothing. The CT only shows structure, it cannot comment on function.

The main thing is that she is not critically ill, and we're just not sure how serious these bradys actually are. Typically they are something that indicate something else is going wrong, but we're now entering the "less likely" field of explanations (ie Seizures). So it could very well be that Charlotte has just "re-set" to a new normal, and these bradys are just her new resting heart rate. Or that she just really, really, really loved that sedation and its taking a long time to leave her system.

Someday, though, we're gonna break outta this place. Maybe next week?

Wednesday, September 15, 2010

Day 199

Miss Charlotte Amalie ~

199 days of life baby girl. 193 spent in the hospital. 6 spent at home.

199 days of worry, of progress, of steps in the right direction one day, and steps in the wrong direction the next. 199 days of growing stronger. 199 days of growing.

Approximately 170 days of knowing what we were going to name you, around 185 days with a titanium clip in your heart, and more than 15,000 miles driven between the hospital and home.

Almost 60 of those days, Daddy has had to be away, and around 10 of those nights we've spent at the hospital, sitting by your bed, waiting for improvements, for updates, for any information at all.

You've had over 15 blood transfusions, numerous courses of antibiotics, and a total of five surgeries: One on your heart, three on your eyes, and one on your belly.

But more than that, more than any number can express, the past 199 days have brought us tiny smiles, a fuzzy head of hair, incredibly dry lips, and bright, bright blue eyes. They've given us huge successes, major improvements and undeniable miracles. We've watched you grow physically, and we've watched those around us offer strength.

We've learned that the smallest things can bring a huge high: seeing you track something with your eyes, watching you move your wrist, hearing that "suck, suck, suck" of the chupi in your mouth; the list is endless.

Charlotte, the past 199 days have brought us you.

Someday, Baby Girl, you'll read all of this. You'll read the weariness written between the lines. You'll recognize the worry, you'll see right through the updates and notice the concern. But I hope you can see past all of that, too. I hope you can see how proud we are of you. I hope you can read the relief we feel, I hope you can sense the faith we have in you.

I hope you grasp the incredible purpose that you have. The past 199 days have taught me so many, many things, not the least of which is to never, ever count you out. You have spunk, baby girl.

199 days of spunk.

~ Momma

Recovery

Miss Charlotte is sleeping comfortably in the PICU at CHOP. Her surgery went well-- they were able to perform the nissen and place the g-tube without any problems. There was some concern that she had aspirated during the procedure, but her x-ray looks fine and clinically, she's doing really well. The PICU was able to extubate {remove the breathing tube} about three hours after the surgery ended. They kept the breathing tube in longer than usual, just as a precaution, since there was a possible aspiration, and because of what the ENT doctors saw.

ENT (Ear, Nose, and Throat) performed a bronchoscopy before the surgery began, to get an idea of how Charlotte's vocal chords and airway looked. We knew she was inflamed and that the reflux had been irritating her throat, but the ENT doctor confirmed that her left vocal cord is not functioning. This explains her severe tendency towards aspiration, as well as her hoarse voice. We don't have a clear understanding of what this will mean long term, but we at least have a starting point.

We hope that recovery will take about 3-5 days and then, barring any complications, she should be coming home.

Tuesday, September 14, 2010

Surgery Number, uhh I forget

{Just kidding about the forgetting how many surgeries she's had-- It's four. Five tomorrow. Charlotte has been extremely lucky for a preemie of her size/gestation in that she's only had the heart and eye surgeries. The really scary surgeries happen when a baby has a bowel perf from NEC or something of the like.}

Bright and early tomorrow morning the OR team will start their day with Miss Charlotte. In another round of "You've been to CHOP too many times", Charlotte's surgeon is the same one who did Caleb's surgery a mere 13 months ago. I think we either win a prize for that, or get referred to DHS...

The surgeon is performing a nissen fundoplication and placing a g-tube. In a 3 for 1 deal, he's also going to repair her umbilical hernia on the way out. That's how we roll.

The IV team has been in, worked their magic, and our little miracle has begun her surgical preparations. Which means I should start trying to sleep.

Night!

Friday, September 10, 2010

Sepsis Shempsis

Charlotte's lab work showed gram positive cocci bacteria in her blood today. This bacteria confirms the diagnosis of sepsis {Charlotte's high fevers, high heart rate, and practically none existent blood pressure all pointed towards sepsis long before they had an actual bacterial growth in the blood culture}. Luckily for Charlotte, her doctors had been treating her for sepsis for about 36 hours prior to this, even though two prior cultures had shown no growth. Thank goodness for doctors paying attention to symptoms and not just test results.

We're still not certain the exact strain of cocci but we do have the type of bacteria that we need to fight off. They started her on vancomycin, cefepime, and unasyn (all antibiotics) and she's doing much better.

She's been moved back to the Integrated Care Service floor and is waiting to be bacteria free before they will schedule her surgery.

Take that sepsis. Take that.

PS-- Echo and cardiac labs were all normal, indicating that the infection had not reached the heart. Woohoo!!

PICU Update

On Tuesday, Charlotte was discharged from the NICU and sent to a floor for children with chronic medical needs. This way, if she is ever admitted to the hospital again, it will be the same team of doctors and nurses caring for her. Tuesday night was rough for her-- her fever spiked again, up to 39.7 C, and she went way up on her oxygen requirements. They stopped her feeds, placed her on IV nutrition, and took her for a chest xray. By Tuesday afternoon, we were mostly convinced that she had aspiration pneumonia, so antibiotics were changed and everything looked pretty good. Charlotte was still sick, but at least we had something to go on. Around 1:00 AM Thursday morning, Charlotte's condition set off an automatic call to the PICU. Her high heart rate, her temperature, her vital signs were enough to signal to the nurses and doctors that she needed some more help.

Charlotte was admitted to the PICU at CHOP. She was using a lot of energy to breathe, her heart rate was all over the place (she would brady one minute {drop her heart rate below 80} and then the next she would be well over 225), and she just generally did not look good. Her coloring was off, she wasn't waking up, and her fevers were still pretty high, even with Motrin and Tylenol.

By Thursday afternoon, Charlotte was looking better, but still not fantastic. The PICU doctors were concerned about some irregularities on her EKG, along with a viral infection that was in her blood. The fear was that this infection might have affected Charlotte's heart. An echo was done and we are still waiting for the results of that.

Otherwise, Charlotte seems to be doing better-- the antibiotics for the pneumonia are kicking in, and her fevers are down. Her blood work remains negative for any massive infection or obvious problem, so we're relieved by that. Just being in the PICU seems to be enough for Charlotte to get herself in gear. We don't have any results yet from the echo, but we should have those today. As long as everything on the echo is normal, we should be able to return to her "normal" floor of the hospital.

I wish I had more definitive news for everyone, but I will say this: On Tuesday/Wednesday, Charlotte looked pretty dang sick. But last night when I left the hospital, she looked good. She had much better coloring, her heart rate was much more even, her breathing was not nearly as labored, and even her fever seemed to subside for a bit.

We're still not sure who the shooter is, but it appears, for the moment, that we have dodged this bullet.