Monthly Archives: March 2014

The Good News: I’m Not Alone

I thought I was bitter. I thought I was resentful, begrudging, hostile, petty, and all those other things. I am not proud of and did my best to suppress some of my thoughts and feelings. But then, I discovered that I’m not a horrible person. Rather, my instincts and feelings are completely normal.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Recently, I agreed to write a monthly guest post for a non profit preemie group’s blog. In my search for inspiration and ideas, I asked my micro preemie parents group for topic ideas or suggestions. They stepped up and supplied many ideas.

That evening, I scrolled through the list of suggestions and made notes. Midway through the list I read the remark, “Please, no more preemie miracle stories.” I could not believe what I read. I paused and read it again. There it was: No more miracle stories. Even more incredible, the several comments that followed were in agreement. I believed I was alone in feeling this way.

Anyone who has ever had a preemie have been told the miracle stories. In the stories, the smallest and the sickest in the NICU eventually go home. They become one of those preemies that quickly and easily catch up by age two with no long term issues.

The stories travel by word of mouth, as articles passed around social media, or posts on blogs. Occasionally, a parent will write a message about their miracle baby in a preemies group with a “Don’t lose hope!” or “Trust in God” moral attached.

I despise these. Because, my baby, like countless others preemies is not one of those stories.

While I understand they are well intentioned, the people who perpetuate these stories do not understand the world many of us exist in (or have forgotten it). I am hopeful that Charlie will catch up eventually. But, I wouldn’t call her progress a miracle. It has been a slow, arduous, frustrating, and desperate journey.

When someone posts in a group about a miracle preemie, to me, it is like eating a five course dinner in a room full of starving people. All of us, badly want our babies to “catch up”. However, it may not be the reality for some and others have to work much harder for it. People forget the reason these stories are so amazing… they are not the norm.

Seeing or hearing the stories is a kick in the gut. I’m happy for those families. But, hearing the tales is simply pointing out another path that was not part of our journey. It doesn’t not provide the intended hope. Instead, I find myself thinking, “That’s nice but it’s another place we were supposed to go but didn’t.”

(For the record, I am unaware of a single parent that “loses hope”. Most micro preemie parents are strong, resourceful, networked, and relentless.)

I thought I was alone in my distaste for these miracle stories. I was ashamed of the annoyed grumbling I did under my breath each time I encountered one. It was a nice surprise to find out that I’m not the only one.

 

 

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Why I Am A March Of Dimes Ambassador Mom

A doll that is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

The doll in my hand is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

Today, Charlie and I kicked off another March of Dimes fundraising event at a local store. It was the first time I lost my composure as I told our story.

Why do it? Why rehash a painful story over and over again? The answer is simple really.

These are the reasons why I speak about our story and raise money for the March of Dimes:

It’s for the moms of angels. Even though I can’t possibly imagine the feelings of a loss so great, I want them to know that their baby is not forgotten. I want them to realize that they are not alone as they figure out how to carry on and find peace.

It’s for the moms of preemies. There are very few who understand the heartbreak, sadness, loneliness, and fright that come with having a preemie. I want them to have comfort, support, and hope.

It’s for the moms of babies with birth defects. I want to raise awareness, understanding, and support for those families.

Charlie and I as we finish our story.

Charlie and I as we finish our story.

It’s for NICU babies. I want them to have bright futures.

It’s for every pregnant woman: present and future. I want them to have a healthy pregnancy.

It’s for every newborn. I hope for healthy futures.

It is for myself. I need something good to come from all this (other than Charlie) so I can one day move past it.

And finally, it is my way of saying thank you for saving my baby and many others.


First Week of Speech Therapy

Charlie had her first speech therapy sessions with her new program yesterday and today. I am hopeful she will benefit and make progress.

Charlie’s new speech therapy program is located in a local university. The therapist is a graduate student who works under close observation (watched on camera) by a speech professional (her instructor). At the end of the session, the student and professional discuss their insights and therapy plans with me.

During the past two days, the therapist got to know Charlie and observed her speech through play. The real work starts next week. I am interested to see how it goes.

During next week’s sessions, Charlie will have to ask for what she wants using PECS. Also, she will begin working on speech sounds. I hope that it doesn’t take long for Charlie to catch on. But, I’m also prepared for it to be a lengthy process.

Charlie’s speech and feeding have been the most frustrating of her delays. Mainly, because I have no idea how to help her. With her fine and gross motor skills, I could use hand over hand to guide her through movements until she was able to perform them on her own. I don’t know how to do something similar when speech and feeding is involved. It is a discouraging and helpless feeling.

I really hope this program works. I am out of ideas of what else to do.

playground OT

Charlie’s last OT session was at a park.

 

 

 


Alone Time For Mom Before A Busy Week

A short post tonight, I’m trying to catch up with housework after a very busy weekend.

This weekend, I was lucky enough to get away for a couple of nights. Before Charlie was born, I volunteered with a non partisan voter registration organization. The past two nights, I returned to my old familiar spot of registering voters at live music shows.

I had forgotten how much fun it was.

Obviously, the break from the demands of my usual world was nice.  But, I enjoyed working with the other volunteers and the adventures each night offered as well. A mental note has been made to get out and volunteer more with the group in the future.

In other news, tomorrow is Charlie’s first day of her new speech therapy program. I am not sure what to expect but I am hopeful.

This past weekend was a nice respite before a busy week.

The weather was nice this weekend. Charlie got to play outside without a coat.

The weather was nice this weekend. Charlie got to play outside without a coat.


Charlie Likes Jazz

Last night, Charlie saw live music for the very first time. While she has always liked music (especially jazz), I think last night sealed the deal. We may have produced a music lover.

Charlie’s Dad and I were very deliberate when we picked the venue and show for Charlie’s first live music experience. We wanted it to be as little of a bar like atmosphere as possible. To be sure that Charlie didn’t disturb anyone, it needed to have a quick escape route in case she was noisy or melted down.

We arrived a few minutes before the show started and selected a spot in the back. When the music started, Charlie’s eyes grew wide. Her huge eyes looked at the stage, looked at me, looked at the stage, and looked back to me again. Then, her face broke out into a huge grin.

Charlie watched intently during the first set. She clapped to some songs and hummed to others. We danced together as she flirted with those that passed by.

During the set break, she used a new sign to tell me she was thirsty. After her water break, she got to meet the performers and say a quick hello.

Her eyes grew heavy during the second set. She displayed the tell tale signs that she was sleepy. Hence, we made a quiet exit.

I was thrilled by how well behaved she was. Admittedly, carrying a baby around at a show and keeping her engaged was a lot of work. But, it was well worth the effort. I see more music in our future.

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It was very dark and difficult to get a decent picture. This is Charlie sitting with her dad waiting for the second set.


The First Time I Held Charlie

When was the first time you held your baby? It was a question posed some where on one of my social media feeds last night. Most of the replies were happy stories of a magic moment. I was unsure how to answer the question and had been thinking about the day since I read the question.

dad'sfirstdiaperchangeCharlie was ten days old when the nurse asked if I would like to hold her for the first time. Up until then, I hadn’t bothered to ask. I assumed that because Charlie did not tolerate touch, holding her was out of the question. My nod sent the nurse off to gather a few things.

During the wait, Charlie’s dad had wandered into the NICU from work. We stood side by side as we peered in Charlie’s isolette. Our faces were expressionless and our affect flat from exhaustion, shock, and sadness. “I’m going to get to hold Charlie” I muttered to him. The nurse suddenly appeared with a hospital gown and instructed me to put it on backwards.

I started to take off my shirt. Charlie’s dad look around at the people present in the open NICU and admonished, “You’re not going to put that on here, are you?” I replied, “These people don’t care. The nurse would have told me to go elsewhere if I should.” I continued to put on the gown as told.

Dressing in the NICU was my silent act of rebellion. Over the past several days, I’ve come to resent those other people. They were the ones that walked by my baby’s isolette and stared. Despite my presence, they made insensitive comments like, “I didn’t know babies that small could live” or “That baby is going to be here forever. I’m glad I’m not its parent.” They watched my very private moments (such as the first time I met Charlie) like it was their personal entertainment. If my privacy didn’t matter then, why should it matter now?

The nurse soon joined us in the few feet of space beside Charlie’s isolette and it became crowded. Charlie’s dad left to make room as the nurse untangled tubes and wires from the isolette. After she finished, she placed Charlie on my bare chest.

My right hand covered Charlie’s entire body as she laid motionless on me. During our cuddle, she stopped breathing twice. I had to rub her back and nudge her to remind her to breathe. I was only able to hold her for ten minutes before she was returned to the isolette because she was so unstable.

I cried as I handed her back to the nurse. I wanted to yell that it wasn’t enough time. It wasn’t fair. I wanted to hold my baby and dote on her as most parents get to.

Charlie’s dad returned and he could tell by my tears it did not go well. He didn’t bother to ask any questions. We had become accustomed to bad news. The nurse gently told me to keep up with kangaroo care as Charlie gets older.

month oldI followed her advice and tried to hold Charlie about once a week after that first failed attempt. They went as poorly as the first attempt with frequent apneas, bradycardias, and desats.

Finally, when Charlie was about a month old, she tolerated kangaroo care. Finally, she was able to perch on my chest for hours at a time. She cried out and swiped in my direction each time the nurse grabbed her to put her back to bed.

We don’t have a magical story of our first kangaroo care session. But, that doesn’t mean it isn’t worth telling.


Happy St. Patrick’s Day: Then and Now

St. Patrick’s Day was a pretty big day for us last year. Charlie had officially been released from her six month quarantine. It was the first time we took her to a public place with other people present.  Here is a picture from last year’s celebration:

St. Patrick's Day

This year, we are snowed in with a foot of freshly fallen snow. Charlie did not let that stop her fun. She decided to celebrate by making a bold fashion choice.

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I hope everyone has a safe and fun St. Patrick’s Day.


Physicians Please Listen: Five Common Problems With A Medical Home

Despite the beautiful weather, Charlie is spending the day indoors resting and recuperating. This means I’ve had more time than usual to read the articles in my Twitter feed. For some reason, today’s reoccurring theme has been the importance of a medical home.

In short, a medical home is a primary care provider that a patient regularly sees for his or her medical needs. Ideally, the medical home system has more benefits than visiting urgent care as needed. But, as a consumer, I have experienced discouraging obstacles in the use of the medical home model. They are as follows:

1) Terrible Office Staff: There is nothing more frustrating than dealing with lousy office staff. I am annoyed when I have to ensure the office staff does as the doctor ordered. I’ve dealt with  schedulers that have lost orders (and not let anyone know), staff that fail to schedule follow ups as promised, lab and test results that make it to the office but not to the doctor, my child becoming lost in a hospital system, and all kinds of appointment scheduling snafus.

I am paying very high co pays and deductibles for a service. Please manage your own staff. There is nothing I would like to do less when I’m not feeling well or, even worse, when my child is ill. I am more likely to follow up with a doctor or practice that simplifies my life rather than complicates things.

2) Difficult Office Policies or Procedures: If my toddler gets sick, I call her pediatrician and am immediately greeted with a request to hold. After five minutes on hold (sometimes it’s longer), my request for a sick appointment is noted and I am told a triage nurse will call me back. One to three hours later, a triage nurse calls me back. A)She refers to my girl child as a “he” and B) the nurse has no idea that my toddler has special needs. These mistakes inform me the nurse hasn’t even looked at my toddler’s chart as triage is performed.

After I explain the situation and if I’m lucky, I get an appointment for later that day. I spend most of my day dealing with the office when my child gets sick.  If I were the parent of a kid without special needs, I wouldn’t go through all of this. I would just take my toddler to urgent care and get on with my day.

3) Rotating Doctors: I adore my toddler’s pediatrician. She is part of a large practice. I understand the rest of the practice is as capable of caring for my toddler. However, our usual pediatrician knows my toddler well. I don’t have to rehash her complicated medical history each time she has an appointment. The pediatrician also knows what is “normal” for my toddler and is able to distinguish if and when there is a problem. Those are the key reasons I choose to consistently use the pediatrician over urgent care.

But, the importance of continuity is dismissed. Unless I ask (sometimes insist) on the specific pediatrician when she’s available, the schedulers will randomize which doctor an appointment is scheduled with. To me, that is no different than seeing a random doctor at urgent care.  Any doctor has access to my toddlers information, the entire health system can access her electronic records at any time.

4) Insurance Coverage: There have been a few occasions when I have had to change primary care providers due to changes in which insurance is accepted or which insurance coverage we carry. Insurance changes make it nearly impossible to maintain a long term doctor-patient relationship.

5) The Practice Over Schedules or Takes On Too Many Patients: For my toddler, I have to schedule well visits at least three months in advance. If I don’t, I’m out of luck or at the mercy of the cancellation waiting list.

Frequently, I receive a recorded message that the office is closed when I call the office (during office hours). That is the default message when all the lines are in use. Once I do get through, I am placed on the usual five minute hold.

These types of things are aggravating and I can’t blame other parents for choosing the more convenient urgent care option. Although, I agree with physicians that argue the importance of a medical home, I believe it is time to rethink things. If patients are opting for urgent care as opposed to a regular care provider, remove the obstacles that make urgent care facilities an inviting alternative.


When Does It End?

Last night, I heard a cough. My ears perked up much like our dog’s do when she hears someone approach the front door. I laid perfectly silent for a moment and hoped that I really didn’t hear it as I braced for the next cough. Again, I heard a cough. I groaned as I accepted that Charlie was, indeed, coughing.

Charlie has been lucky when it comes to her lungs. Other than the inhaled glucocorticoid steroid she needed prior to her nasal cannula graduation, we haven’t had to worry very much about her lungs. We’ve directed most of our concern to her motor delays and feeding disorder. I was no longer disquieted by thoughts of her catching something.

However, we are by no means careless. We served our time in isolation and, even now, I apply sanitizer liberally to just about anything I can sanitize or disinfect. We were fortunate that Charlie has managed to avoid respiratory tract illnesses. I counted our escape from lung concerns as one of our blessings. But then, last night, I heard that cough.

To be safe, I scheduled an appointment earlier today with her pediatrician. The weekend was almost here. I certainly did not want her condition to deteriorate over the weekend. There are not a lot of good choices for urgent medical care over the weekend. We’ve been down that road before and I learned my lesson.

I didn’t think she was very sick. But, a thought danced around in the back of my mind and haunted me all morning before the appointment: Is this going to be a big deal that we never saw coming? Is this one of THOSE illnesses?

On the way to the appointment, I was transported back in time to a year and a half ago. Despite her successful completion of the car seat challenge prior to leaving the NICU, I feared she would stop breathing while out of sight in the back seat of my car.

I returned to the old comforting drills. I kept the car stereo silent as I drove so that I could hear the reassuring sound of her breathing in her rear facing car seat. Occasionally, I called out to her and waited for some sort of a response when I could not hear her breathe.

Charlie wasn’t acting sick. In fact, she was her happy self. She must have thought I was crazy. I thought I was crazy. I didn’t think she was very sick. Yet, I felt all this uneasiness.

It turns out that Charlie had a double ear infection and the resulting congestion caused her cough. Her lungs were clear.

Upon hearing the news, I released my held breath and wondered: When does this end? At what point, can I dismiss Charlie’s cough as “just a cold” and not fear returning to the hospital or worse? When will those worries stop materializing in an instant?

Proof that Charlie was not behaving in a sickly fashion.

Proof that Charlie was not behaving in a sickly fashion. This is our grocery store  trip after seeing the pediatrician.


March For Babies Kick Off

March For BabiesI know it’s spring when I see all the purple in my Facebook feed. My friends flood my Facebook and Twitter feeds with solicitations for support of their March of Dimes March for Babies teams… and I love it.

Last night was the Northern Shenandoah Valley March For Babies Kickoff. The team captains were prepped and, as this year’s ambassador family for our walk, I told our story to a room full of people.

A year ago, I was struggling to write our story. Now, it flows freely from my lips as I tell it to a room full of people. I suppose it is a sign that I am moving forward. I’m sorry to say, this may be the beginning of the end to the unflattering videos and pictures of me in tears that circulate the web via different organizations’ websites.

Although, I am happy to report that Team Charlie Allene is more than half way to our goal of $1000. If you’d like to help us reach our goal (or blow it out of the water), you can donate on our team page by clicking here. Every little bit is greatly appreciated and goes to a wonderful cause.

Charlie would not have survived if it weren’t for the work of March of Dimes. Her life was saved by research funded by March of Dimes. For example, she received pulmonary surfactant while she was in the NICU.

Not only was Charlie’s life saved, but Charlie’s dad and I received assistance as well. March of Dimes NICU Family Support Program provided support and comfort to us during Charlie’s three month NICU stay. We were given a NICU themed baby book, offered NICU themed classes, and the NICU support specialist held my hand and empowered me during Charlie’s journey.

We were helped during our time of heartbreak, desperation, and need. It’s our turn to help other babies and their families. Please help babies and support our team.

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One of the first days Charlie and I spent together.

Created with Nokia Smart Cam

Charlie, Charlie’s Dad, and I told our story at last night’s March For Babies Kick Off.


Progress In Feeding

A quick post tonight because it has been a long day (more on that tomorrow).

Over the past month or so, Charlie has tried to imitate me during meals with a fork. The attempts to eat with a fork were cute but unsuccessful.

Yesterday, she mastered it! I caught it on video to show her OT because Charlie likes to be uncooperative for doctors and therapists. I tell them she can do things and she doesn’t do them when asked by doctors or therapists.

One more skill down! Now, if only she could learn to use a spoon.

 


Programs, Waivers, And Forms… Oh My!

Any parent of a special needs child knows that expenses add up quickly. In addition to the usual child rearing expenses, we encounter expenses from PT, OT, speech therapy, doctor appointment co pays, dieticians, special formula, orthotics, home health nursing, and therapeutic equipment. Over the past few months, I sought information on programs for which we may qualify. Today, everything was in place to apply.

If you live in Virginia, I recommend Moms In Motion  for help with the Medicaid Waiver process. The organization does a great job providing explanations of the different types of Medicaid Waivers, who qualifies, and how to apply. In addition, they offer assistance with applying for two other programs that may be helpful for children with special needs.

For those who do not live in Virginia, ask your Early Intervention services coordinator for suggestions of where to start. Charlie’s services coordinator was extremely helpful with sending us literature and directed us to Moms in Motion. Another useful place to begin is the local department of social services.

Filling out the forms was time consuming and a little confusing. Honestly, some of the questions sounded like riddles. That is why it is helpful to have an agency like Moms in Motion available to answer questions. By the end of the process, I was more than a little frustrated and could only hope that I answered everything correctly. However, it was doable.

Thankfully, the forms are finally complete and ready to be submitted. My fingers are crossed that Charlie qualifies for one or more of the programs.

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More Questions To Answer

Melanie at MommyDo recognized me with a Liebster Award. She writes:

I think Cheering on Charlie received this award from someone else, but I’m giving it up anyway.

As I’ve stated previously, I am always grateful and flattered when a fellow blogger recognizes me. So without further delay, here are the answers to Melanie’s questions:

1. What made you want to start blogging?

Initially, it was a way for me to document Charlie’s journey in an appropriate venue. My posts became too long for Facebook or Tumblr. But, I like to learn and it became a learning project for me. It was also a way to retain relevant employment skills for when I return to the work force.
2. Who inspires you?

No one person, in particular, inspires me. Instead, I find inspiration in quotes, writings, and song lyrics that I come across. For example, I once read someone tweet something like “There are plenty of intelligent and talented people, distinguish yourself by being kind.” Additionally, there are several Bruce Hornsby lyrics that I often recite to myself such as “It probably won’t happen but I think I’ll try”.
3. What is one piece of advice you wish you could give your younger self?

You become what surrounds you… and you have the power to decide who surrounds you. I would have much sooner cut out the people who do nothing but discourage, criticize, or think they have it all figured out. I embrace those that encourage, are supportive, and challenge me to be better. If I knew this earlier, I don’t think I would have wasted as much of my youth being angry as I did.

4. What is your favorite item in your closet right now?

Whatever fits and doesn’t have stains. 🙂
5. What is currently your favorite album, artist, or song?

Holy wow, this is a tough one. Right now, Charlie and I have tickets to see Charlie Hunter. He is a guitarist and one of those performers that is consistently excellent every time I see him.

The upcoming show has special meaning to me. As it worked out, Charlie Hunter was the last show I saw while pregnant with Charlie. We saw him the night my  preeclampsia was discovered. His music was among the selections I played for Charlie in the NICU. Each time I hear the song, You Look Good In Orange, I think of Charlie. For the record, he is not one of the Charlie’s she was named after. Although, it was a happy coincidence. He is the guitarist (his part starts at 2:40) on this track:


6. What made you choose the title for your blog?

It came to me while I was writing my first post. When I wrote about cheering her on in the NICU, it clicked.
7. Must have beauty product(s)?

Other than lip gloss, I have not worn make up a day in my life. So I suppose, it’s lip gloss.
8. When are you happiest?

When I’m outside or at a show.
9. First celebrity crush?

OK, so I have to share my secret. I am face blind. So, I got crushes on TV characters rather than celebrities. My first crush was the main character of Quantum Leap. My lab partner, Kat, would be impressed at how nerdy that is.
10.Where is your dream destination?

Any country in Sub Saharan Africa.


Last Week’s Speech Assessment

Last week, Charlie had her speech and language assessment at the university (my alma mater) where she will receive her speech therapy. Other than it feeling incredibly strange to wheel a baby through the same building where I attended classes, the day went really well.

The first part of the evaluation addressed her hearing. Charlie was not exactly cooperative for this portion. She fussed and pulled the instrumentation out of her ears. However, the audiologists concluded that Charlie’s hearing is about average.

Next, her speech and language was evaluated. This part required Charlie to play with the examiner. She laughed and excitedly clapped as she played with the doting students who examined her.

Finally, the speech pathologist discussed the results of the exam with me. She thought Charlie may have dysarthria instead of apraxia. Dysarthria, she explained, is sometimes seen in kids like Charlie that have cerebral palsy and/or PVL.

Ultimately, the speech pathologist agreed with the developmental pediatrician’s recommendations of speech therapy twice a week. Additionally, she discussed the option of teaching Charlie to use PECS.

When the use of PECS was mentioned, I realized this was a long term issue that would not clear up with a few months of intensive speech therapy. My heart sank a little and I sighed out a bit of the hope I had been holding on to.

Despite that it was a long term issue, I felt the day went well. Everyone agreed that Charlie’s expressive speech was significantly delayed and there was a consensus on treatment.

Afterwards, I took Charlie to the children’s museum to burn off her last bit of energy.

There were some noisy kids at the children's museum that Charlie did not approve of.

There were some noisy kids at the children’s museum that Charlie did not approve of.


Preemie Babies 101 Guest Post #2

Today’s post can be found on Preemie Babies 101 written as a guest post. The post is titled What I Value In My Preemie’s Pediatrician. Here is how it begins:

Before my baby could be discharged from the  NICU, I had an impressive list of tasks I needed to accomplish. Finding a pediatrician sat on the top of the list. The project seemed simple but, honestly, I didn’t know what I was doing… Read More

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Another Reason To Walk

When Charlie made her early arrival, I was angry that it happened to her… and me.

In my grief, I asked questions such as “Why me?” and “Why do I have to be in that minute percentage?” Sometimes, when I’m having a rough day, I continue to ask those questions. The only satisfying line of reasoning that I could provide myself was: I took one for the team.

If someone, out of all the people I know, had to fall in the dreaded miniscule percentage, it’s OK that it was me. We made it through the NICU. Despite my complaining, we are tough enough to handle the therapy and challenges. If it had to be someone among the people I love, it’s OK that it was me. Our lives will go on.

But then…  my beloved next door neighbor had to go on bed rest and one of my friends went into preterm labor tonight.

NO! That is not part of the deal! That is not how it is supposed to work!

Tonight, I lost the only answer I had to the “why me” question.

It’s not fair that it happened to me or any other woman. It has to stop.

Tonight, I have found another reason to walk.

I’m tired of seeing my friends suffer.

Charlie at last year's March for Babies.

Charlie attended her first March of Dimes March For Babies last year. Team Charlie Allene is half way to their goal. You can help end premature birth with your support of Team Charlie Allene by clicking here.


National Cerebral Palsy Awareness Month

Wow, March is busy! March is also National Cerebral Palsy Awareness Month. Just as with all the other month long celebrations, I am sharing Charlie’s story.

I knew there was something “not quite right” about the way Charlie moved when she had been home from the NICU for a few months. Her hands didn’t open when they should have, she missed all of her motor milestones at her adjusted age, and she was incredibly rigid when she slept. I begged the pediatrician for answers and she started Early Intervention.

Charlie was supposed to be one of those super preemies that left the NICU and never looked back. Because her NICU head scans appeared fine, we were not warned that cerebral palsy was a possibility. It was never discussed with us.

therapy I was blindsided by the delays and did my own research. My best guess concluded we were most likely dealing with cerebral palsy. I learned from my research we could help her. I just needed someone to tell me how.

Shortly after she missed her milestones, Charlie saw a developmental pediatrician. Although he did not diagnose her initially, he prescribed PT, OT, and feeding therapy. Charlie received her diagnosis of spastic diplegia at about eighteen months. Prior to that, I connected with another mom of a girl with cerebral palsy that has been an incredible support and resource (Thanks, Nicky).

After a couple months of therapy, Charlie’s hands opened and she could hold a toy. She learned to roll over a few months later. Things continued to progress with plenty of hard work and lots of therapy. She is now mastering walking. However, the multitude of therapies continue.

Cerebral palsy is a disorder that is a spectrum and affects each person differently. If there is one thing I want other parents of children newly diagnosed with CP to know, it is don’t give up hope. A diagnosis is helpful in order to receive services and understand the nature of the delays. It does not necessarily predict the future.

I’ve been amazed at how far Charlie has come and how much she can do.

walking toddler


Happy National Social Work Month

I mentioned yesterday that March is a busy month. In addition to Child Life Month, it is also National Social Work Month.

One of the many learning experiences that came with Charlie’s birth was when I found myself in the role of the client. Here is my account taken from an earlier post:

I was well aware of the role of a social worker before I had my micro-preemie. A few years prior to Charlie’s birth, I had earned my BSW. The graduate program decision was in process when my husband proposed the idea of having a baby.

premie under the bili lightsCharlie’s early birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born at twenty six weeks.

It was more than likely difficult for her to visit me during the midst of my nightmare. Anger was one of the many emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. After all, I was one.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room in the back of the NICU and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom.

First, she helped me understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and I attended NICU parent groups she provided. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me she was there if I needed anything.

2012-07-21 001 008After a little over two months, Charlie was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled for unknown reasons.

No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck, frustrated, and had no where else to turn. That night, I pounded out an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly offer ideas of what to do next.

Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I was thrilled to have an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A fight wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to the social worker’s intervention, Charlie would be transferred the following morning at 10 AM.

The social worker was there when I thought I was on my own and powerless. She was a compassionate voice of reason when I was overcome with emotion and overwhelmed by the situation. I can’t imagine how the three months in the NICU would have been without her.

Charlie resting peacefully after her transfer.

Charlie resting peacefully after her transfer.


March Is Child Life Month

NICU Preemie Card_editedMarch is a busy month with several month long observances. Today, I am writing about Child Life. What is a Child Life specialist? There is a very good chance, if you are reading this blog, you may already know.

For those who don’t know, according to Child Life Mommy, a Child Life specialist is:

Child life specialists typically work in a health care setting providing support to children and families during their admission… Specialists prepare patients for medical procedures through play, teaching dolls, visuals and using developmentally appropriate language. They also offer procedural support and teach coping strategies to help empower children and families through their experience.

Child Life Specialists understand what it is like to be the parent of a child in the hospital or a hospitalized child. They are exceptional people that deserve to be acknowledged and thanked. I will do so by sharing our first encounter with Child Life Specialists.

Our first encounter happened unexpectedly. Charlie had only been home from the NICU for a month and a half when she started projectile vomiting. Although she had issues with digestion from the start, it was never like this. Every time she ate, it came right back up with force.

During her second doctor’s appointment to address the issue, Charlie threw up some questionable colored vomit. Her doctor wondered if it could be pyloric stenosis or a malrotation. We were sent to the local pediatric emergency department for some imaging.

We went directly to the hospital. It was the same hospital she spent her first two months in the NICU before her transfer to a second hospital’s NICU.  Because Charlie was only there for imaging, it wasn’t emotionally difficult at first. The doctor examined Charlie and ordered the scans. I expected it to be a short visit that lasted a few hours.

Fortunately, the scans showed Charlie did not have pyloric stenosis or a malrotation. However, we were no closer to finding out why she was projectile vomiting. The doctor admitted her to the pediatric floor.

rehospitlizationThe ED Child Life Specialist came in to meet us while we waited for a bed in pediatrics to be found. She introduced herself and asked if I needed anything. I didn’t know what to say because I had so many needs. I needed to not have that happening. I needed to not be back at that hospital. The Child Life Specialist jumped in to help me with the things she could.

She noticed Charlie only had a sheet covering her and offered her a baby blanket which I gratefully accepted. (Thank you to whoever made and donated that blanket.) Next, she asked if I had eaten and offered a boxed meal. Seven hours had passed since the beginning of the initial doctor’s appointment, I was hungry but didn’t want to leave Charlie’s side. I devoured the boxed meal. Finally, she asked if she could contact someone for us. I declined and wondered, “Who do you contact during a time like this?” and “What do you say?”

That evening, Charlie’s room was ready. The long walk from the ED up to pediatrics is burned into my memory. As demoralizing as the day was, I did a fairly good job of holding it together. Charlie cried as her stretcher rolled through the corridors. With my head hung low, I pushed her empty stroller and trailed behind. It was the saddest parade ever. We passed people in the hallways who said things like “Awww, look how little she is!” and I ignored them without even a glance.

We neared the elevator bank and the smell of the hospital cafeteria wafted past my nose. That is when I knew we were back and it wasn’t some horrible nightmare. There was a flood of emotion that burst through my best efforts to contain them. NO! I DON’T WANT TO BE BACK HERE! We were done with this place! I was done eating that food. I wanted to crawl up on the stretcher with Charlie and sob together. I felt like I failed. I felt like we lost.

baby in hospitalOnce we reached the pediatric floor, another Child Life Specialist introduced herself. I asked a question which revealed my rookie status. The specialist asked, “She hasn’t been up on peds before?” I shook my head and said, “Only in the NICU.” The specialist proceeded to provide a floor orientation of sorts. She explained how to order meals, how the floor operates, where the snack kitchen was located, and how to fold out the chair into a bed (I slept in a recliner in the second NICU.). She offered toys for Charlie but she was too young (or too sick) to be interested.

After a few days, the stay concluded with the determination that Charlie had problems digesting her formula. Her formula was switched to an outrageously pricey formula. She got better and resumed gaining weight.

The readmission was tough. I would have been lost without the Child Life Specialists. When a child is admitted to the hospital, it is often a frightening and chaotic experience. I’m thankful Child Life Specialists are there to help.


Happy 21 Months Charlie!

Charlie is twenty one months old. Since February has only twenty eight days, I suppose she was officially twenty one months yesterday. However, we celebrated today by visiting Twin Lakes State Park (our twenty first for those of you counting). As I crossed today’s park off the list, I saw all the other parks we have checked off. I reminisced about each adventure.

That is the kind of thing I hope I remember about Charlie being a baby.

These are some of the memories:

One of Charlie's first hikes at Mason Neck State Park.

One of Charlie’s first hikes at Mason Neck State Park. I can remember how crisp the fall air was that day.

Cooking out in the middle of November at Staunton River State Park. The people who drove by just stared. Especially after we set up the ladder ball game.

Cooking out in the middle of November at Staunton River State Park. People drove by and stared. We ignored them and set up the ladder ball game.

This is when Charlie and I hiked our hundreth mile together.

Charlie and I hiked our hundredth mile together.

The gorgeous winter day at Kiptopeke State Park on the eastern shore.

The gorgeous winter day at Kiptopeke State Park on the eastern shore.

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Not wanting to go home after Kiptopeke, I added First Landing State Park to the itinerary.

The very first time Charlie put her feet in a natural body of water at Shenandoah River State Park.

The very first time Charlie put her feet in a natural body of water at Shenandoah River State Park.

The first time Charlie played in the rain at James River State Park.

The first time Charlie played in the rain at James River State Park.

Charlie swings at Chippokes Plantation State Park. Whenever I see those pictures, I remember two things: How incredibly humid that day was and I can't wait to go back to that amazing park for a longer visit.

Charlie swings at Chippokes Plantation State Park. Whenever I see those pictures, I remember two things: How incredibly humid that day was and I can’t wait to go back to that amazing park for a longer visit (it has been one of my favorites so far).

The time at Douthat State Park when Charlie decided that she wasn't close enough to the lake and crawled in.

The time at Douthat State Park when Charlie decided that she wasn’t close enough to the lake and crawled in.

At her second visit to Lake Anna State Park, she walked in the sand for the first time and love it.

At her second visit to Lake Anna State Park, she walked in the sand for the first time and squealed with excitement.

She kept waving and saying, "Hi" to everyone we passed at High Bridge Trail State Park.

She waved and said, “Hi” to everyone we passed at High Bridge Trail State Park.

Today at Twin Lakes State Park, Charlie showed off her playground skills. She clapped quite a bit. I am not sure if she was expressing her excitement, if she was proud of her self, or both.

Today at Twin Lakes State Park, Charlie showed off her playground skills. She clapped quite a bit. I am not sure if she was expressing her excitement, if she was proud of herself, or both.

I don’t want to remember all the injections, feeding problems, diagnoses, fights with insurance, and seemingly endless therapy. When I think about Charlie’s beginning, I want to smile. Now, I see there is a very good chance of that happening.

Happy twenty one months Charlie Bear!

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