Category Archives: March Of Dimes

Today, The Pediatrician Called

This afternoon, we had barely made it to speech therapy in time and Charlie needed her diaper changed. I was in the midst of changing Charlie’s diaper when my cell phone rang. It was Charlie’s pediatrician.

Normally, I let all calls go to voice mail when I’m busy. But, the pediatrician’s call went to voice mail yesterday. I didn’t want to waste more of her time. I answered the phone and awkwardly cradled it between my head and shoulder.

It wasn’t a surprise the pediatrician called. We usually talk after Charlie’s clinic days to discuss how the specialty appointments went. Charlie had a clinic day earlier this week.

“Charlie has been referred to the intensive feeding program” I informed her. We both knew it was only a matter of time before it happened. Charlie’s feeding progress has been a painfully slow roller coaster ride. Some days, I think she has it and am convinced feeding disorders will be a memory. On other days, she will barely consume a thing. Currently, her weight gain is less than satisfactory.

The feeding therapist that evaluated Charlie this clinic visit was the same one who evaluated her a year ago. The feeding therapist noted the progress Charlie has made. However, the therapist stated she felt bad for us because Charlie has been working on feeding for over a year and is still having trouble.  She was one of the few recommendations for the intensive feeding program Charlie received on her clinic day.

I explained my relief to the pediatrician. In February, Charlie will have been in feeding therapy for two years. I’m tired of thinking and obsessing over feeding. I’m glad someone else will take the reins.

After my disclosure, the pediatrician spoke. I could hear her flip through Charlie’s chart which more resembles a large tome. As she leafed through the chart, she marveled over how far Charlie has come.

We reminisced over our discussions when we first recognized Charlie had developmental delays and I anxiously wondered if she would walk. We laughed about the morning she found me asleep on the chair beside Charlie’s hospital bed after her readmission as an infant. We looked back at Charlie’s first full assessment by a specialist (which went terribly). Together, we learned the best places to find chewy tubes, music therapy, and AFOs.

Charlie will attend an intensive two week feeding program soon. I’m not bothered about it in the least. Quite simply, we tried our best and she needs more than we can do at home.

Today, Charlie’s pediatrician called. She reminded me that we only lost a battle. Because, my god, Charlie has won the war. She has blown us all away.

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Yesterday, Charlie met with her state representatives during our March of Dimes chapter’s Lobby Day.


The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

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Arizona

Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.

So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.

Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.

One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.

The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.

Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.

Back to ShareUnion:

In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.

Everyone gets something different out of it, this is what I get:

Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.

Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.

Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.

The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.

The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).

If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.

 


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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The Countdown Begins

Sometimes when I’m around other parents, I feel like a puzzle piece that doesn’t quite fit with the rest of the puzzle. We do have the shared experience of being parents. But, that’s where the similarities end.

I’ve lost my connection with the common parenting experience. I read things other parents sometimes write and I wonder, “Who are these people? How is it possible we live on the same planet, the same country, or even the same state?”

When I’m out running errands, I hear other mothers talk. Their concerns are nowhere close to mine. For example:

For me, vaccines didn’t feel like an option. After spending three months around very young children who were critically ill, it seemed foolish not to vaccinate.

I hate that I know about the Durable Medical Equipment part of a health insurance policy, where the closest pediatric emergency department is, and about epo injections.

I can’t help but think a newborn over five pounds is big.

I don’t want my child to learn to read before kindergarten, be fluent in Mandarin, or become a musical virtuoso. I just want my child to learn to talk. Maybe one day, she will be able to tell me she loves me back.

Toilet training is way ahead of my map. Due to circumstances, we will toilet train much later than most. For the record,  I don’t think that wipe warmers are frivolous when a baby has sensory issues.

I don’t worry about organics, GMOs, or junk food. I would be thrilled to see my child chew AND swallow a bite of anything.

These are only a few of the disconnects. Premature birth has shaken my world to its core. Since Charlie’s birth, there has been only one time and place that I felt like I fit completely into a puzzle. It was at last year’s March of Dimes ShareUnion.

This year’s ShareUnion is just around the corner (in 85 days). Let it be noted, my countdown has begun.

I look forward to spending time with other parents who understand and possibly live in my world. There will be no talk of the “right” way to do things or perfection. Instead, there is understanding and encouragement.

I can’t wait to be in Phoenix in September. I would even walk if I had to.

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The Week of Two

two_edited_editedLast week, Charlie turned the big 2. For the non preemie parents who may read this, two is the promised finish line. According to NICU lore, preemies “catch up” (meet age appropriate milestones) by two. The preemie’s age is no longer adjusted to account for the premature arrival. That’s it, poof, the baby is just two.

Two is a pretty big birthday in the preemie realm. However, the birthday was not the prophesied finish line for us.  The finish line moved further ahead and our marathon continues. I’ve become content with that.

Yet, last week was a very emotional week.

It started the night I wrote Charlie’s birthday post. In between my stifled tears and keyboard clicks, I opened an email. Charlie received an amazing birthday card of sorts. People we had never met wished her a happy birthday. For once, I was at a loss for words.

Later in the week, I received call from a friend who procured team T shirts for our March for Babies team. When we made plans for the walk, I mentioned how we were going to be a shirtless team. She surprised me by coming up with shirts at the last minute. She expressed concern over odd sizes and mismatched colors. I thought they were perfect.

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Charlie and I went hiking today.

On Saturday, our team lead the March For Babies walk in our area. Last year, we had four team members. This year, we had fifteen and raised over $1500.

I had no idea that this week or this march meant anything to anyone other than me.

I cried quite a bit this week. It was not because Charlie didn’t catch up or that two isn’t the promised end for us. It is because I am honored, in awe, and am grateful for the kindness and love given to us this week.

Yes, we missed out on yet another thing that “should have” happened. But, rather than focus on what didn’t happen last week, I prefer to notice all that did.


Two Down, One To Go

With March For Babies season in full swing and a couple other things going on, I’ve been busy. Today, Charlie and I walked in the Augusta County March For Babies. It was beautiful morning and fun walk. This was the second of three walks we are helping out with.

Our third and official walk is at the end of May. It will be an emotional walk because it is two days after Charlie’s second birthday.

I hope the weather is as nice as it was today.

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The Week of Hand Me Downs And An Update

The women in my moms’ groups are generous with the hand me downs. Charlie has received many of them during this past week.

Saturday

This is the stroller liner given to Charlie from Judy at Laughing, Living, Weeping. Charlie likes the neck support in that position above her head. It fits Charlie well and is excellent support for the long stroller rides. We tested it out Saturday during a hike.

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Charlie received this sand box over the weekend. Initially, she had a tough time with the feel of sand. But, she loves it now that she is able to tolerate the texture.

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Today, Charlie got her car. So far, she has only figured out how to make it go backwards.

Thank you to the women who have passed these toys and the ride on toys to Charlie. They help further her skill set and growth.

With the holiday, the warm weather, and the upcoming March for Babies, our schedule has been fuller than usual (not a lot of time for writing). For those of you interested in the ongoing details of our story:

Charlie continues to be under observation for the changes with her muscle tightness. An appointment has been scheduled with the developmental pediatrician to discuss the matter further. It is most likely due to a growth spurt.

Also, she has an appointment with the pediatrician to check the fluid in her ears this week. Tubes may be a consideration in the future.

Additionally, the area’s March For Babies is getting closer and closer. I am happy to report that Team Charlie has made goal. However, if you’d like to help blow it out of the water you can do so by donating at our team page.

Other than all of that, we keep plugging along.

 

 

 


A Proud Mommy Moment

march1Today, Charlie and I attended the first of three walks we will be helping with in our area. Our official walk with our team is on May 31st. (It is not too late to support our team!)

Prior to the walk, I prepped Charlie’s stroller for the six mile course I planned on walking. It will be a little bit before the adaptive stroller insert arrives in the mail. In the meantime, I cut up a pool noodle and created a booster seat with body support. It is somewhat of a hassle but will work until the insert arrives.

The early morning weather before the walk was chilly. Because of this, I left Charlie bundled up in her stroller and pushed her around.

After the walk started, I put Charlie’s blanket and coat in the stroller basket. Charlie “talked” to me the entire way. It turned out to be a lovely sunny morning.

I am proud to say we completed the walk in a respectable amount of time. Although, my body could tell that I was no longer pushing a little six pound baby up those hills.

march for babiesFollowing the walk, I helped Charlie out of her stroller. She wandered aimlessly and tumbled through the grounds as she munched on pizza. I trailed behind her while she said hi and flirted with the people she encountered.

We passed one lady who said to me, “That is not the one pound baby is it?” I replied with a smile, “This is Charlie.” She explained that she thought one pound babies wouldn’t ever be able to walk.

That was my proud mommy moment. Charlie proved her wrong. I beamed.

It hasn’t been an easy road for us. Sometimes, I wonder why it hasn’t been as easy as it was predicted to be when she left the NICU. Why didn’t she fulfill the super preemie prophecy?

Today, instead of having to explain why Charlie can’t do some things yet, Charlie showed someone what she can do. And that moment, made every bit of the struggle and all the work worthwhile.

 


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.


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.


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.


Finding The Something Good

I do not believe that everything happens for a reason. However, I do believe that something good can come from the circumstances of Charlie’s early birth (other than Charlie, obviously). It wasn’t until recently that I figured out what it was.

I managed to hold it together while I was hospitalized at twenty four weeks with severe preeclampsia. But, Charlie’s birth at 26 weeks shattered me into a million pieces. Afterwards, I laid motionless in recovery devastated by sadness, raging with anger, and envious of all the women around me with crying newborns. For the first few weeks, I could hardly breathe and sobbed uncontrollably.

March of Dimes NICU Family Support helped me begin to piece myself back together again. I became empowered, stronger, braver, and began healing.

The journey is not over for us. However, I am far enough along in my journey that I can begin to give back. I say “I’m listening and I care.”  to other mothers affected by premature birth, birth defects, or loss. I support and cheer for fellow NICU mothers. I speak at events when asked to give a face to prematurity. I share our story.

While I’m honored to do all of these things, I am further privileged for my family to be this year’s March of Dimes Ambassador Family for the Northern Shenandoah Valley. Our walk is on May 31 (two days after Charlie’s second birthday). The button link to our fundraising page will be in the tool bar on the right until the walk.

I would like to reach our goal but I’m just as happy with people giving to any team. The important part is to give (every little bit matters) to March of Dimes and support all babies.  In case you missed it, I have written a post about the many ways MOD has helped us specifically.

In my healing process, I have the need to turn something so devastating in to something good. If reaching out to others, sharing our experience, and helping where I can is that something good, then so be it. I have been given so much love and kindness to pass on.

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This year’s Northern Shenandoah Valley March of Dimes Ambassador


Why Have World Prematurity Day (or Awareness Month)?

Today is World Prematurity Day. Those not affected by prematurity may wonder why we should observe a prematurity awareness day. I will do my best to answer why:

1) I did not think it could happen to me. Before Charlie was born, I was convinced that our pregnancy would be perfect as long as we did everything “right”. Even when her early delivery became a possibility, I was confident that I would carry her to term. I did everything I was supposed to do. In my mind, things like premature birth, birth defects, or still births happen to other people. The people who didn’t follow the rules. I was wrong.

Premature birth is closer than most realize. Despite not having a high risk pregnancy or any risk factors, it happened to me. It can happen to anyone. Even if, everything is done “right”.

2) Preemies are not just small babies. Many people believe that preemies are merely small babies.  Most premature babies require intensive care in a NICU for survival. Despite medical intervention, not all of those babies survive. Many of those that do graduate from the NICU have long term health concerns related to their early births.

3) Families affected by prematurity need support. The three months Charlie spent in the NICU was a lonely time for my husband and I. Very few people understood what we were going through. Our family and friends did not know how to support us. Acquaintances were strangely intrusive as I was confronted with questions like “Why aren’t you pregnant anymore?” from the grocery store check out clerk.

The general population knows so little about prematurity that many are unsure of how to respond. I hope open discussion about the issue and concerns families of preemies face can improve the way friends and family provide support.

4) Awareness can aid in prevention and improve outcomes. If women are educated about the signs and conditions that cause preterm labor, they can act if they become aware of it happening. Prompt medical attention allows for the possibility of interventions such as halting labor. Even if such interventions are not possible, other measures such as steroid injections can increase the baby’s chances of survival.

5) Research is important. It was not long ago that micropreemies had a slim chance, if any, for survival. Advances in medical technology such as NICU care, pulmonary surfactant, and prenatal betamethasone injections have increased preemie survival. However, there is much about maternal fetal medicine and neonatal medicine that is unknown. Hopefully, prematurity awareness will increase research funding and pique the interest of talented scientists and researchers.

6) To honor the preemies who did not make it home and to celebrate those who did. My thoughts are with all preemie families today.

Charlie's journey from birth at 26 weeks weighing 790 grams.

Charlie’s journey from birth at 26 weeks weighing 790 grams.


How March Of Dimes Helped When I Had A Preemie In The NICU

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.

When I was a kid, a couple of the ladies in the neighborhood went door to door and collected for the March of Dimes. Other than having to do something with babies, I did not know what the March of Dimes did.

I had not thought about the March of Dimes again until after Charlie was born.

After meeting Charlie, I noticed there was a cart in the NICU hallway loaded with books. I looked over the cart and selected a thick book about preemies which became my new parenting guide. The book went everywhere with me during the following week as I made my way through its pages. I remember a label on the book because I picked nervously at the label while I sat in the NICU waiting room. The label read, “March of Dimes NICU Family Support Bedside Reading”.

About a week after Charlie was born, I wandered into my first NICU scrap booking class. I was a mess. I had cried until I no longer could, every breath felt like it took enormous effort, and I was functioning on autopilot in a haze. Scrap booking was the last thing I wanted to do. Despite everything, the NICU secretary insisted that I should go.

One of the pictures a NICU nurse had taken for my scrap book.

One of the pictures of Charlie a NICU nurse had taken for my scrapbook.

Once I arrived at the scrapbooking session, I was warmly greeted by the hospital’s March of Dimes NICU Family Support Specialist. She helped me choose a scrapbook and presented a few examples. There were several other parents who were already busy working on their scrapbooks. Although I could hardly speak, I went to work mindlessly pasting as I listened to the other parents talk.

It was the first of many sessions.

The weekly scrapbooking sessions made what was happening feel normal. It presented the opportunity to meet some of the other NICU parents. Additionally, the sessions not only made taking NICU pictures of our baby acceptable (something I wondered about) but encouraged it.  The scrapbooking class was how I learned about milestones that are unique to the NICU. It was a way for me to process what was happening at a time when words failed me.

There is a steep learning curve in the NICU. Medical terminology, equipment, and conditions are suddenly tossed at parents. To understand my baby’s needs and care, I attended classes offered to NICU parents by health professionals. The topics varied such as respiratory care, nutrition, and development. The classes were also part of the March of Dimes NICU Family Support program.

I wanted to expand on the information covered and found a neonatalogy text book in the hospital’s health sciences library. I had plenty of time to read and slowly worked my way through it. I read about the pulmonary surfactant my baby received. The book explained that the March of Dimes had played a role in its research and development.

One morning, around a month into Charlie’s NICU stay, I found it particularly difficult to drag myself into the hospital for yet another day. I couldn’t eat one more bite from the hospital cafeteria, spend one more minute in a very confined space, or withstand one more alarm in the clamor of the NICU. My morale was at a low point. When I finally trudged up to the NICU that morning, a basket with boxes of cookies (provided by the NICU Family Support Program) greeted me in the NICU waiting room. It sounds silly, but the small gesture rejuvenated me. I wolfed down a few cookies, scrubbed up, and resumed my daily bedside ritual.

Charlie came home after three very long months. But, contrary to popular belief, coming home doesn’t mean “it’s over”. It was merely the beginning of another chapter. Fortunately, I am able to connect with other NICU parents for support via the March of Dimes Share Your Story website. Recently, I was able to attend the annual gathering of the website’s users. It was wonderful to meet the other users face to face. I am in awe and inspired by the remarkable people I met.

The story does not end here. I continue to be in contact with the NICU Family Support Specialist (as well as one of the moms I befriended in class). The NICU support specialist was crucial during my NICU parenting journey. Among many things, she was a guide through my NICU experience, my first connection to the preemie community, and introduced me to preemie parenting life. Most importantly, she helped me rediscover my voice and empowered me during a time I felt I had been broken.

I am proud to say that we are a March of Dimes Ambassador Family. I want others to know what the March of Dimes does without having to experience the NICU. Being an ambassador is my way of saying thank you for what we have been given. If anything, I hope to make things better for the NICU families behind us by sharing our journey.

If you’d like to support our 2014 March For Babies team, you can do so at our team page located here.

Charlie at last year's March For Babies.

Charlie at last year’s March For Babies.


Share Union Day Two: Best. Convention. Ever.

Today, day two of Share Union, was a long and exhausting day. Things will wrap up tomorrow. This is the first convention that I’ve attended where every single minute was utilized well.

A few days (possibly weeks) will pass before I process the events of this weekend.

Some of the immediate highlights were: Meeting other parents of 26 weekers (one mother had her baby a matter of days from Charlie’s birth), having the privilege to hear other amazing parents speak, the food, and becoming acquainted with members of the site.

I have frequently commented about being exhausted and worn out by the post NICU experience. The understanding, compassion, and companionship of this weekend has recharged me somewhat. I have tangible proof that I am not alone on my post NICU journey.

In addition, Charlie’s birth somewhat stole my sense of safety and confidence. This weekend was a step in reclaiming it.


ShareUnion Day One: First Day of School

Tonight, March of Dimes ShareUnion kicked off in Washington D.C.

I have to admit that I was a little nervous about the first day of ShareUnion. Since it was my first time attending, I did not really know anyone other than what I knew from the Share Your Story website. The veteran attendees all knew one another. Registration was noisy as they greeted each other with gleeful shrieks and jubilant hugs.

Soon enough, the awkwardness of being a newcomer resolved itself at the reception. We socialized a dozen stories above the backdrop of Capitol Hill at night.  I was quickly at ease after a few minutes of circulating through the room. Even though I was among practical strangers, I completely belonged. I can’t remember the last time that I felt that way.

Brief post tonight. Day 2 starts very early.


Saying It Out Loud

When Charlie was first born, it was impossible for me to talk about her birth. It was one of the toughest things that ever happened to me. It did not end with the birth.

Her three month NICU stay was just as arduous, scary, and confusing. Through a portion of it, I was in shock. I found it difficult if not impossible to make sense of it. I really hated having to talk about it and explain things to people needlessly.

When I was discharged from the hospital, we had to stop at the pharmacy on the way home to pick up my meds and supplies. I prayed that the pharmacist would not assemble the clues to figure out that we had a baby. Especially, when my baby was perilously clinging to life.

I resented all those who assumed acquaintanceship privileged them to ring side seats to my tragedy. I avoided these people as much as possible. Normally, I would have had the strength to tell them to butt out or it is none of their business. However, at that time I lacked backbone. I took the easiest escape and feigned the cheerful optimism that was expected. Although, my heart was breaking and I felt like I was dying inside. What little strength I had was reserved for my baby.

It is difficult to put into words what our preemie birth experience was like. Soon, I’m going to have to find the words to tell our story. We have been asked to be a March of Dimes ambassador family for next year.

Through telling our story, I hope to educate and help others. Ultimately, I hope to find some closure for myself.


It Matters

Ever since I can remember, I have done A LOT of volunteer work. In high school, I have won awards for the number of hours I’ve accumulated. The habit carried over into my adult life. When there is a call for volunteers, I’m usually one of the first to step up. People generally tell me what a good person I am and so forth. Here is a secret… *I* benefit from volunteering. I learn about things that I’m interested in, I meet some really amazing people, I get a stress free opportunity to try out new skills (nobody fires a volunteer that messes up), and I get the satisfaction of doing some sort of good. Through out it all, I have always wondered “Does it really make a difference?”

It was not until I was on the receiving end of others’ volunteer work that I discovered the answer.

During the three months that Charlie was in the NICU, I was pretty much alone. My husband had to work (we had to pay bills somehow) and my friends had to work and manage their lives. It’s bad enough to grieve. However, when I grieved alone, I found the silence is deafening, the emptiness consuming, and the isolation is unbearable. There were days that I woke up and begged for the strength to make it through another day. On one of those such days, I arrived in the NICU early one morning to find a case of Girl Scout cookies. There was a note on the case stating “Help yourself to a box”. It was the morale boost (and probably the sugar rush) that I needed. Somebody had donated those cookies.

Next, there are the companies and individuals who donate scrap-booking supplies to the NICU family support. I do not think they realize the importance of it. I am not sure why I initially wandered in to the scrap booking class. In hind sight, I’m glad I did. I got so many things out of the simple act of putting together a NICU scrap book. Most importantly, I was able to process what was happening as I pieced together the scrap book. It was my first step towards empowerment. Someone gave that to me.

Finally, there was the blanket we were given from Child LIfe. Somebody, somewhere had knitted and donated the baby blanket. We received it on a day that we did not know Charlie was going to be hospitalized. Due to this, I was poorly prepared for her stay. Despite the hospital being a children’s hospital, there were not any baby blankets. My baby would not have had a blanket without that donation and I would have worried about one more thing. The gesture was incredibly comforting to me during a stressful and demoralizing time.

These are only a few examples of many instances. Many times, we do not get to see the results of the work we do. Some times, it seems too small of a gesture to address a much bigger issue. I’ve found out first hand that kindness and volunteer work really do matter.


Bigger Than Me (or Why I Am Marching For Babies)

When we decided to start team Charlie, we thought it would be a nice way to thank March of Dimes for their graciousness during our NICU experience. It would also be a way to raise awareness. Ultimately, it is Charlie’s victory lap. While all of these are good reasons to March, admittedly they are kind of egocentric. On Wednesday evening, it became more. I had discovered new reasons.

We had a March for Babies team captain meeting last Wednesday. I was looking forward to it as a way to meet other moms. It did not disappoint. I met a mom (I can already tell that we are going to be friends) and we compared stories of moving from the DC suburbs to here. We both spent time in the same High Risk Perinatal unit. We had quite a bit in common. There was one big difference. Her micropreemies did not survive. When she told me, that old saying “there but for the grace of God goes I” went through my head. I never really fully understood that adage until that moment. March of Dimes is working to prevent more moms from understanding.

I know of a couple moms who are in the NICU now. I think of them regularly. I see their posts, answer their questions, and dote over their pictures. I cheer them on. People did and still do it for me. The NICU is a terribly frightening, horribly lonely, and painfully sad place. I do not think anybody should have to face it alone. March of Dimes makes sure people do not have to.

After that evening, I have thought of greater reasons for walking. It has nothing to do with me. It is for Charlie and to celebrate her struggle. It is for the moms who did not get to bring their babies home. It is for the moms who are currently in the NICU watching their babies fight for their lives. It is for babies who have yet to be born that they may be healthy. There are so very many reasons. All of them are excellent and much bigger than me.


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