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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:
*Her "frog" from the NICU (a rice bag)
*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


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.



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,


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


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


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)

Receptive: 3 months 10 days
Expressive: 20 days


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

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