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.

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

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!!

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.

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!

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.

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.

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.

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 :)

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!!!

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.