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Monday, February 28, 2011

Birthday Pictures

Happy Baby
Happy Baby. {Watch for the transition}

"Oh crap, there's food in front of me" Not Happy Baby

Cousins and Big Brother

Birthday Girl

Day 365

One year. One year ago we welcomed Charlotte into our lives. We welcomed milestones and set backs. We welcomed days of joy and days of agony. We welcomed a whole new world into our lives.  As a review, here's her first 26 weeks:

First Transfusion: 5 days old
Heart Surgery: 14 days old
First time held by Dad: 17 days old
Finally above birth weight: 19 days old
First diaper change by Parental Units: 22 days old
First time held by Mom: 32 days old
First time meeting Big Brother, Caleb: 5 weeks old
Switched to SiPAP: 6 weeks, 3 days old
Off of TPN (full feeds of 15 mL every 3 hours): 6 weeks, 3 days old
First time wearing clothing: 7 weeks old
Doubled Birth Weight (2.5 pounds): 7 weeks, 4 days old
Parents Decided on a Name: 11 weeks, 2 days old
First "good" x-ray of lungs: 13 weeks old
First Eye Surgery: 16 weeks, 2 days old
First Transfer to CHOP: 4 months, 28 days old
First Time on Nasal Cannula: 5 months, 3 days old
First Time Feeding Charlotte with a Bottle: 5 months, 17 days old
Transferred back to Chester County: 5 months, 18 days old
First day Home: 26 weeks old (more time inside the NICU than inside me)
(Of course, she just ended up heading back to the hospital 5 days later, but oh well.)

Baby Charlotte, we celebrate all of your milestones today. 

We celebrate you, and the strength that you have. We celebrate the humility you have taught us. We celebrate the kindness that you bring out in others. We celebrate your fat thighs and your perfect smile. We celebrate the moments of despair, because they were followed by moments of hope. We celebrate the nurses, doctors, physical therapists, occupational therapists, speech-language pathologists, respiratory therapists, radiology techs, and unit secretaries who have made your life possible. We celebrate the grandparents, aunt, uncles, cousins, and friends who sat by your side during this past year.

Today, we celebrate the journey. 

Thursday, February 24, 2011

Year One


It's been a year since my water broke. A year since that dinner date with Peter at the Greek restaurant. A year since I suddenly went from being half way through my pregnancy to being done with my pregnancy. A year. A solid year since I entered Chester County Hospital and left a part of me there.

Does it get better? Harder?

Do the appointments stop? Does the worry? No? That's lame.

It's alright. Deep breath.

I gave Miss Charlotte a bath tonight and her sleepy little eyes could barely stay open. Her chunky body relaxed in my arms as I wrapped her in a towel and dried her creases (there are a.lot.of.them.) She grinned at me and her bright blue eyes and uneven pupils faded as she slipped into her nightly slumber. She was happy, healthy, content.

She reminds me yet again, tomorrow will be another day.

A year and one day since everything changed. The day after that it will be a year and two days. And then a year and three days. And then two years and then three and then five and then "wait, didn't something happen on this date?"

So in those moments that I can't catch my breath, in those moments that seem to last for an eternity, in those moments that I hate the universe for the hand it dealt us, the pain it caused and the happiness it stole, in those moments, I will think about the years to come. The years that will be filled with late night baths, with tutus, with giggles and milestones, with trains and cars, and yes, even with therapy and doctor appointments.

But mostly, those years will be filled with gratitude. A little bit of pity, many a few moments of wallowing, frustration and fear. But mostly, gratitude.

Here's to those years. Here's to the last one and all that it brought us.

Sunday, February 20, 2011


No worries, Charlotte got the Synagis shot right on time. Our doctor and nurses worked everything out. Yay for them!

In other news, Charlotte accidentally was off of oxygen for about 15 hours at one point this week. It's a long story, well, no, it's not, but yeah. We thought she was getting oxygen, but she wasn't. The good news was that her lungs held out pretty well. She didn't have any significant desats! Whoa! The other news (we don't like to call it bad news, because it's not bad, it just is) is that her heart rate was significantly elevated. Sleeping, her heart rate was in the 180's-190's. Oops.

But yay for her lungs! It's great that her lungs are in a place where she can go that long without supplemental oxygen. It means that once her heart/lung pressure is in a better place, she'll be able to be weaned off the oxygen pretty quickly. She had a holter monitor placed last week and we meet with the Pulmonary Hypertension Specialist on Friday to go over the results. Hopefully we can stay where we are-- just increasing her oxygen to manage her heart rate.

Of course, we'll let you know!

Wednesday, February 16, 2011

Mom of the Year

Remember how Charlotte's insurance pays $1,200 a month for a shot to keep her out of the hospital with RSV?

Yeah, I would be the mom who forgot to order and schedule that shot. Here's hoping that a day late isn't too late. We've only been doing this for, what, five months now?

I can't be trusted with anything! :)

Oh Yeah

I forgot that y'all might like to know that Peter did match in Pediatrics in San Diego for his internship. We will be relocating there in June 2011.

But did we have any doubts? After this application essay, I knew he'd get it.

Didn't you?

Monday, February 14, 2011


All you need is love, love, love is all you need.
{You also needed to see her outfit...  
I mean do.you.see.her.tutu?!?!}
Happy Valentine's Day, 
from our family, to yours.

Thursday, February 10, 2011

For What It Is Worth

I've seen a bunch of posts lately on other preemie blogs and forums about "What Not to Say" to parents of preemies. While I think these posts are probably warranted, I'd rather focus on things people should say to parents of preemies. I'll throw a few DO NOT say this in there for good measure, but I'd like to keep it positive.

First, when the baby is born, ask questions. This is new, uncharted territory for both you and your friend/family. But before you ask about the baby, ask about them. Ask how they are handling things. Not "Are you OK?" because, believe me, they aren't OK. Ask how they are handling things as in "Do you want to talk about it? Do you want to sit in silence? Do you want me to do your dishes or your laundry or...? Do you want me to tell other people? Do you want to hear congratulations? Do you want balloons and flowers? Do you want me to field questions from others? Do you want me to not talk about it? Do you want to talk about it? Do you want to call me when you need me or should I call you each week? Do you want me to leave you alone?" Everyone deals with this differently. Everyone. Some people love hearing congratulations. Some people hate hearing congratulations. So ask. And know that they might not have an answer for you, be prepared for that as well. They might change their mind next week. But asking them gives them control over your interactions. And they need to be able to control something.

Second, ask how the father is doing. Father's get left out a lot. But they are grieving and struggling the same as a mother, and they need support. Don't forget about them. They will deal with things differently, but they are still dealing with things.

Third, acknowledge the situation. So often people were uncomfortable with the reality of Charlotte's birth that all they could do was talk about what a fighter she was, or how well she was coming along. Sounds good, right? It is... except for those days that the worry and the stress just get too much. On those days, all parents need is for someone to acknowledge the fact that things are rough. Too often, in an effort to uplift and keep the mood light, the fears and very real emotions of parents are pushed to the side with success stories. Really, all that parent wants is for someone to say, "It's OK to feel the way you are feeling. Really, things are hard, and this just isn't fair. You shouldn't have to go through this. I'm sorry you are meeting your child this way." Otherwise, the parent is stressed and depressed and on top of it, they are being told that they are feeling improperly, that their emotions are not valid, and that they are failing their child. Don't dwell on the situation, but recognize it. Address it.

Fourth, once the child is home, make sure you still check in. There are days that I wish we could be back in the NICU, because being home, it's hard. Really hard. OK, so I don't really want to be in the NICU, but still. It's hard. Things are not necessarily all better now that a baby is home.

Fifth, re-evaluate. Remember that conversation you had at the very beginning? When you asked how they were handling it? You should be re-evaluating that situation every-so-often. You know your friend/family member best, but make sure you aren't basing your interaction off of old information.

OK, for the Not-to-Say crowd, here are some things you might want to avoid, unless you really, really, really know this person and/or they are the ones to bring the topic up.

Don't ask about milestones. Believe me. That parent is obsessed with milestones. Celebrate with them when their child reaches milestones, but don't ask if they are meeting them. A preemie parent will let you know, I promise. They don't need to be reminded of things their child isn't doing.

Don't mention your second cousin's husband's hairdresser's dog walker who once had a preemie and their baby is now a football player. We've all heard the stories. We know. We get it. Preemies turn out to be fine all.the.time. But this is our child, with our difficulties, with our complications. And those stories, they really get old. Let the old ladies in the grocery store tell them to us. Because, honestly, we hear them everywhere.

Try to avoid saying things that you wouldn't want to hear, such as "Was it someone's fault that the baby came early?" or "Way to keep your baby alive!"
Mostly, be honest. With yourself, with your friend/family member. Say, "I'm not sure what to say," when you are at a loss for words. Most likely, that parent is at a loss for words as well. No one is really prepared for that kind of situation. When you want to ask a question, and you aren't sure if it's appropriate or not, just say so. A simple, "I'm not sure if this is the right way to say this" or "I'm not sure if I should be asking this or not" can defuse a situation, and lets the parent know that your intentions are good.

Because they are, right? Your intentions are good?

You'll be alright then :)

Edit: Are you a preemie parent? Add what you did or didn't want to hear from others in the comment section. I'll organize them all and make a "page" section that can be shared. Are you a friend or family member of a preemie? Comment on what we as preemie parents can do to help you know how to help us. Sometimes we need guidance as well. It takes a village, right?

Friday, February 4, 2011


On another note, how cute is she? And smart. And she's a hard worker. And she can become a CEO if she wants to. But honestly? She's dang cute.

Charlotte Reads the Blog

Remember how I said we were hoping that she would sit up by her first birthday (February 28th)?

Charlotte must be reading the blog while we're sleeping, because we all know she's one to rush things.

After her therapy appointment on Wednesday, Charlotte sat up for about 4 minutes all on her own! She's been doing it consistently since then, so I think it is safe to say, our little miracle is sitting up! (Don't rain on my parade. 4 minutes totally counts as full on sitting up).

I'll post the pictures later today!

Thursday, February 3, 2011


In December Charlotte had an appointment with the Pulmonary Hypertension Clinic at CHOP. I'm not linking to anything that describes Pulmonary Hypertension, because I have been severely warned and threatened that if I google the condition I will be scared and scarred for life. So you'll have to deal with my rather novice explanations today.

Basically, Pulmonary Hypertension is a condition that some preemies (or babies who have been on the ventilator for an extended period of time) develop where the pressure in the lungs is too high. This causes the heart to be a little too stressed and BAM! Bad things happen. Bad things such as dizziness, shortness of breath, inability to exert oneself, etc.

Excellent explanation, no?

Moving on. Charlotte does not technically have Pulmonary Hypertension (collective sigh of relief) but she does have the clinical manifestations of it (as CA's neonatologist would say, "Never trust a preemie"). At the appointment we asked how high CA's heart rate should be running, and he casually dismissed it as though there wasn't a limit for her heart rate.

All right. Works for me.

But not for Charlotte's Physical Therapist. So I called the office again today to get some sort of parameters so the therapist can work with CA and the Nurse Practitioner has a mini heart attack of her own when I tell her that when CA does her exercises, her heart rate can easily hit the 200's. I could hear her eyes popping out of her head when I told her that resting, Charlotte's heart rate sits at about 180.

What does all this mean? Miss Charlotte Amalie has won herself an increase in oxygen to 1/4 LPM all the time, with increases to 1 LPM when exercising, and next week we get to place a halter monitor which will check out her heart all day long.

Now, this isn't a huge deal to worry about-- we've had a million and two EKG's done as well as a few Echos and the structure of CA's heart is excellent. Yay for that. We just need to see if her high heart rate can (and should) be controlled by medicine.

If not, eh, we'll roll with it same as we are right now.

If yes, dose that baby up!

And those are the latest and greatest changes in our lives right now.


I am completely and acutely aware how incredibly lucky we are to have Miss Charlotte around. I am reminded of our luck each and every day.

I see it each time I look into her eyes and see her pupils dilate differently. I'm reminded each time I change her clothes and touch the scars that cover her body. I'm reminded by the fact that CHOP has a special ringer on my cell phone so that I can make sure I don't ignore a doctor's phone call. I'm reminded by the massive oxygen tanks that are delivered weekly. I'm reminded by the therapists and nurses who spend time in our home each and every day. I'm reminded by the friends Caleb can't have over. I'm reminded by the Purell dispensers on the wall.

I'm reminded by the size of the diapers she first wore. I carry one in my purse to remind me. To remind me of how far she has come, how much she has beaten. So on those days that I wonder how we will get through one more phone call, one more appointment, one more set back, I reach into my purse and pull it out and think about the days when we had to cut them in half because they were too large. I think about the day we took a picture of one next to a Bic pen. I remember how I was trying to find something--anything--to distract me. The doctors had just told us that Charlotte was experiencing heart failure and there weren't many options for us. I sat there that day wondering if she would live long enough to wear the next size diaper. {She did. And the next larger size. And the next larger size. And the next three larger sizes after that.}

So yes, I live with reminders. Reminders of how close we came. I've watched friends bury their children and while I will never, ever, ever claim to understand or even imagine their loss, I am acutely and vividly aware that we have escaped it.

And despite that awareness, despite all the reminders of how blessed we truly are, this month has been hard.

Last year at this time, I was struggling to maintain a pregnancy. We had no idea what was about to happen. I had a PICC line placed shortly after Christmas 2009 and was taking many, many doses of anti-nausea medications each day, as well as two liters of fluids, vitamins and nutrients while I slept.

I feel like the past year has been an effort to stay afloat, to just make it one more day. Most days, we do really well. We pull ourselves together and we accomplish what we need to accomplish. And we do it without all that much effort. {Yet another way we've been blessed.} But other days, I feel like I'm right back there in the first few days of Charlotte's life when we had to decide how far we would push this. At what point do we stop trying to save her life, and instead make her comfortable? At what point do we stop intervening?

As Charlotte Amalie's birthday approaches, I wonder that about myself sometimes, too. How long do I keep trying to work out the pain and anguish and guilt and yadda yadda yadda surrounding it all? When do I say, "Heck.with.it. Make me comfortable."

Because, believe you me, I have those "make me comfortable" days. I wallow. I just want to be comfortable. I wonder how we'll ever get past the medicine and finally see the daughter. 

And then, on those nights that I need it the most, she falls asleep in my arms. Suddenly, instead of tending to a patient, I place my baby in her crib, and I kiss my girl goodnight.

In yet another way, perhaps in the best possible way, I am reminded.

Reminded of her.