Monthly Archives: July 2014

Hello Elmo!

preemie hugsActivity two of the week completed! Yesterday, we made the pilgrimage to Busch Gardens so that Charlie could meet Elmo. The trip turned out to be everything I hoped it would be.

I was surprised there was so much for her to do. She saw the live show twice, met all the characters, rode several rides, played in a playground like area, and splashed on a splash pad type area.

There were a couple of moments I had to fight back tears. There are a couple of reasons why:

1) We are so fortunate Charlie is here to share in a day like yesterday (or any day) with us.

2)Charlie has worked and fought harder than I can possibly imagine. Nevertheless, she is full of joy, enthusiasm, and is almost always smiling. To see her have a day like yesterday was incredible.

It’s true, she probably won’t remember any of it. But, yesterday, her world was as magical as she makes my everyday.

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Charlie’s Big Girl Bed

It happened sooner in the week than I had planned. Yesterday turned out to be the big day. We took the front rail off of Charlie’s crib and transitioned her to a “big girl” bed. In addition, we moved everything out of her drawers into organizers in the closet as a preemptive strike on any “redecorating” by Charlie.

Late in the afternoon, her crib turned into this toddler bed.

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Charlie was thrilled to find Elmo covering a bed that she could easily climb into and out of. I’ve heard other mothers say they were sad when this day came. I can’t say that I share in the sentiment.

Our baby experience has been longer than average and exhausting. I feel relieved we reached this milestone. I am caught up in the excitement of a new bed for Charlie. Mostly, I find solace in moving one more step forward. We are inching closer to leaving all this behind.

 

 


Charlie’s Big Week Ahead

Charlie doesn’t know it but next week is a big week in her world.

First, we are taking her to see her favorite Sesame Street character, Elmo, at Busch Gardens. I wanted to take her to see Elmo since the weather warmed up. Things such as schedules and finances finally worked out so we can take her this upcoming week.

I would be lying if I said I wasn’t excited.

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Next, Charlie is being freed from her crib. I want to say she is moving to a big girl bed. In reality, she’s having the front rail taken off of her crib to make a toddler day bed.

Most of my friends have posted on Facebook the day their kid first climbed out of the crib. I planned on keeping Charlie in her crib until she reached that day.

However, Charlie keeps getting stuck in the bars of her crib as she tries to get out. Nap time is frequently interrupted by Charlie’s desperate cries for help. She finds new and inventive ways to become trapped.

A couple of times, I considered breaking a bar to free her. Charlie hasn’t realized that, try as she might, she will not escape the crib through the bars.

Part of me is a little sad that we don’t get to have that moment of when she does finally climb out of the crib. The sadness is short lived because my mind is busy figuring out the logistics of this change.

I have additional concerns on top of those concerning bedding and Charlie staying in bed. Her room, although currently childproof, will have to become Charlie proof. She likes to pull the clothes and diapers out of her drawers, dump the laundry basket, and carry out whatever other mischief she can invent. Her room will be rearranged.

Next week is a big week for Charlie. I can’t wait to see how it all plays out.

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Charlie visited Sky Meadows State Park today and enjoyed the gorgeous weather.


The Follow Up

Charlie had her follow up appointment with the developmental clinic yesterday. Other than having to wake up before dawn, the day went pretty smoothly. Overall, it was uneventful. I’ll take it.

Her assessments didn’t discover any new issues. The doctor discussed his ongoing concerns. As Charlie grows older, it is becoming clearer that apraxia is at the root of her speech and feeding delay.

However, her speech delay doesn’t stop her from socializing.

Tonight, she was at the kick off of a March of Dimes March For Babies campaign. She enjoyed meeting the area’s team captains.

She also enjoyed exploring the grounds where the walk is going to be held.

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Specialty Clinic On The Horizon

On Wednesday, Charlie will make the two hour journey for her follow up appointments (she gets reassessed in several areas) with developmental pediatrics. I admit, I am a little nervous. The past couple of visits to the clinic did not go so well for us.

I realize we are lucky and Charlie is doing really well considering her extremely premature arrival. But, I can’t shake the feeling that we should be done with all this. I’m kind of like a little kid pouting and saying to myself, “We weren’t supposed to have this challenging of a journey.”

For some reason, it was easier for me to accept the long NICU stay than it is the long period it will take Charlie to “catch up”, if ever.

Sometimes, I think I should stop hoping for the end of specialty clinic visits, regular insurance phone calls, and numerous therapy appointments. Because I hope, each follow up with the developmental pediatrician feels how I imagine a prisoner must feel before a parole board. I see the progress Charlie has made and dare to think, “It won’t be long now until we are finished with this.”

However, my hopes are shot down when a new area of concern is discussed or limited progress is pointed out. Often, I knew of the issue beforehand. However, I had anticipated it wasn’t a big deal. Or, I assumed it could easily be addressed.

Additionally, I feel guilty and greedy for wanting more. We are fortunate Charlie is doing well. That should be enough. I feel selfish for desperately wanting her to “catch up”.

I am not sure what is going to happen on Wednesday. Maybe that is why I’m already anxious and thinking about it. I have my fingers crossed it’s going to be a good appointment.

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Charlie visited Skyline Drive this weekend.

 


Charlie Stops For Nothing

Hectic is a good word to describe the past week. Over the course of the week, I’ve completed Charlie’s medicaid waiver forms, worked towards getting the insurance claim for the formula approved, and attended to Charlie’s usual busy schedule. Things were a little more difficult because I’ve been under the weather.

Despite the stress, I feel like there was much accomplished. Additionally, I decided to make some needed changes. Basically, I need to reapportion and move stuff around on my plate.

For the most part, the people in my world won’t notice the changes.  The biggest of which is that I’m cutting back on the frequency of my personal blog posts. I don’t feel the urge to post as often as in the past. Plus, I want to pursue to new interests and work on moving forward.

Of course, none of this matters to Charlie. She has been playful and active all week. I have no idea where this toddler gets her energy from.

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My Favorite Sound

Charlie joined me today as I picked through a clearance sale at the mall. She pretended she was looking for clothes and rifled through the racks beside me. After she became bored, she played peek a boo with anyone that looked her way.

A sales lady got sucked into a game of peek a boo with Charlie. As the laughter from both sides died down, the lady asked Charlie what her name was. Charlie smiled at the lady, fidgeted with her hair, squirmed, and remained silent. The pause in the conversation became uncomfortable. I jumped in and answered for Charlie.

The lady asked, “How old are you Charlie?” Charlie answered with babble. The lady looked somewhat surprised to hear a toddler babble. I disclosed, “She doesn’t talk yet.”

I’ve been cranky and exhausted from this past week.

I was too tired to explain Charlie’s early arrival. I didn’t have the patience to hear a stranger’s awkward remarks upon receiving the information. I was not in the mood to discuss diagnoses and how we hope she will one day “catch up”.

I just wanted to find some deeply discounted clothes and get out of there.

Speech, like feeding, is one of those skills that Charlie struggles with. The good news is that she is improving. While she continues to babble, Charlie now has twenty eight words.

Among those words are “hop” for help, “Melmo” for Elmo, bye-bye, eat, and happy. Sometimes when Charlie is having fun she repeats “Happy, happy, happy, happy, happy…” with a huge grin. I’m nearly brought to tears each time she does it.

However, Charlie started using my personal favorite word a few weeks ago… mommy.

Charlie learned to say her name a few weeks ago as well.


Hard At Work

I’ve had my hands full dealing with insurance companies, medicaid waivers, and doctor’s orders. Once I get everything figured out I will post what worked for us and what didn’t.

In the meantime, my distractions have not prevented Charlie from making the most of her summer.

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I Didn’t Realize It Was Miserable

Thanks to the Parker Lee Project, Charlie received her first case of her new formula yesterday. It has only been a day since Charlie started her new formula but, I’ve already noticed a huge difference. I didn’t realize how miserable feeding had been for us until today.

Charlie has been learning to eat solids for over a year with limited success. Until yesterday, her major source of nourishment was from a partially hydrolyzed whey protein infant formula.

However, this posed two problems that we (her daddy and I) were aware of. First, the formula tasted disgusting so we had to get creative about disguising the flavor. Second, there weren’t enough calories in infant formula to satiate Charlie.  The formula had to be fortified with pretty much any food that flowed through a cross cut nipple.

Honestly, we had no idea what we were doing. But, as long as she continued to grow and gain weight everyone seemed happy with the approach. We (her doctors, her daddy, and I) hoped the spit up, reflux, and vomiting was something she would outgrow.

Feeding had become a complex process of guesswork and mixing of formula with food substances that Charlie was coaxed to eat. She was good about it. Better than I would have been.

But, there was a lot of spit up and occasionally she would vomit for what seemed like no reason at all. We constantly reminded anyone who played with Charlie, “Careful, don’t make her throw up!” Her crib sheets needed to be changed, at least, every two days due to spit up stains. This was our normal.

After her evaluation at the feeding clinic, we learned that Charlie has difficulty with chewing, trouble coordinating the movement of food with swallowing, a sensitive gag reflex, slow gastric emptying, poor motility, and a casein allergy. The gastroenterologist prescribed a specialty formula (a fully hydrolyzed whey protein pediatric medical food with fiber).

There has been a noticeable difference only a day after the switch to the new (and more appropriate) formula.

While it smells gross, Charlie readily eats the new vanilla flavored formula. There is no mixing or convincing her to eat. Plus, she hasn’t spit up or vomited since the introduction of the new formula yesterday morning. Her reflux has improved significantly.

I had no idea how stressful and awful Charlie’s feeding and GI issues were until they improved. It wasn’t until I felt an overwhelming sense of relief when feeding Charlie this morning that I realized how bad things were. I feel somewhat guilty for not making the realization and insisting that the issue be addressed sooner.

As a side note, I would like to inform my readers about The Parker Lee Project. Through the amazing work of the organization, parents in need of medical supplies can apply for the supplies (if available) free of charge. I’m grateful The Parker Lee Project supplied us with thirty days of formula (almost $1000 worth) while we wait for the paperwork to be processed with insurance and the durable medical equipment provider.

Additionally, those who have extra medical supplies that a child has out grown or no longer requires can donate them to this organization. Financial contributions are also appreciated.

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Charlie golfed a little on the Fourth.

 

 


Happy Fourth of July!!!!

Happy Fourth of July! This is Charlie’s third Fourth of July celebration.

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The Power Of Photos

I’m one of those moms. I take a few minutes in the midst of the action to snap photos. Some people may find it annoying. Others, comment that I’m not really enjoying the moment if I’m busy taking pictures. To the former, I apologize and to the later, I beg to differ.

Photos are my way of capturing memories. You’ve probably noticed from my photos, I don’t worry about lining up the perfect shot or finding decent light. I pull out my cell phone in the moment and snap several pictures for a minute or two.

At least, one of those pictures will turn out. The memory of the day will live on with my memento.

bearcreeklakeFor example, when I see the picture on the left, I’m reminded of the first cool, crisp autumn day of last year. I remember how Charlie laughed at the sound the lake animals made as they splashed through the surface. The picture is a reminder of the ranger who paused with a surprised expression when he noticed our unusual approach to hiking. It was one of her last hikes in the infant seat attachment.

Similarly, I have countless photos that take me back to another time and place. Photos have the power to jog our memories of things that may otherwise be forgotten.

In the NICU, I wondered if it was “right” to take pictures. Did I want to remember my baby like this? Was it right to photograph a sick baby?

Day of BirthAt first, I took pictures because I wanted people to see my baby. We didn’t have many visitors and the pictures were a way to proudly announce her arrival.

Later, I started to take pictures for my scrap book (our NICU offered a scrap booking class). I’m so glad I took those pictures, for two reasons. Now, I can see how far she has come. And, if we had lost Charlie in the NICU, we would have had some pictures to remember her by.

What’s not in pictures can also be a reminder.

Unfortunately, there are only a couple of pictures of Charlie and I together in the NICU. There was no one to take them. It reminds me of what an incredibly lonely time it was.

I regret the pictures not taken.

So yes, I am one of those moms who snaps what may be too many pictures. However, the reason for the photos is not to “one up” my friends on Instagram or have the picture perfect life on Facebook. It’s because this is the only baby experience I will ever have and I want to remember every possible bit of it.

I took a lot of pictures at the fountain yesterday.

I took a lot of pictures at the fountain yesterday.

 

 


Wordless Wednesday

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