This Year’s Prematurity Awareness Month and Me

Last year, I wrote a post a day for Prematurity Awareness Month. On Prematurity Awareness Day, I wrote a post titled “Why Have Prematurity Awareness Day (or Month)? This year, I’ve stared at a blank screen for nights. I tell myself that I’m waiting for a muse of fire.

If the truth be known, I’m sick and tired of prematurity. Two and a half years after Charlie’s early arrival, not a day goes by that it does not impact my life in some way. Additionally, I think about it several times a day.

No, I’m not obsessive. It’s just that my life revolves around prematurity.

For starters, I am constantly problem solving with doctors, therapists, nurses, and pharmacies. Then, there is the hassle of social services. Charlie’s medicaid waiver should have been decided months ago. Plus, the insurance company likes to waste my time with automatic denials or by providing misleading information. That’s just the obvious stuff.

Prematurity creeps into my “regular” parenting life. If I hear a cough, I cringe and make a quick escape with Charlie. No need to challenge those preemie lungs. Feeding… oh goodness… let’s not get into feeding. During play, I watch to see if her pincer grasp is improving, if a heel strike will miraculously appear while she’s walking, and if she favors her left side as usual.

Currently, I’m stressed about Charlie’s upcoming MRI because it has to be performed under sedation with all the risks it entails. Additionally, I’m trying to schedule her new AFOs (yes, she’s being prescribed orthotics AGAIN) before the end of the year since our deductible has been met. On top of it all, meal time is a juggling act of mentally calculating her caloric intake while coaxing her to eat.

Truly, I think about prematurity many times a day. My brain refuses to contemplate it further and my thoughts about it have been tapped out.

But, that’s why I need to write about it. If, for anything, so that our story is told.

So that people don’t make the mistake of thinking that preemies are just small babies. So that people don’t believe that babies come home from the NICU and are suddenly “fine”. So that people know that some preemies don’t ever catch up and some never come home.

We can do better.

For example, we can fund more research, lobby for better health care policies, and educate more people. By doing so, we can improve the lives of these babies and of parents like me.

I’m very hopeful about Charlie’s future, but I’m tired of prematurity. Everyone else should be tired of it too. Let’s do something about it.

 

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 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.

 

 

The Week of Two

Last 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.

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.

 

 

A Proud Mommy Moment

Today, 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.

Following 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

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.

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

I 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.

One of the first days Charlie and I spent together.

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 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.

This year’s Northern Shenandoah Valley March of Dimes Ambassador

2014 Resolutions

So, here it is… my list of this year’s resolutions.

1) I will try to be kinder to myself. It’s okay if we aren’t perfect with Charlie’s therapy routines or she has junk for dinner once in a while.

2) I will try to reach out to my non preemie parent friends more. We get so busy with Charlie’s appointments that I forget about socializing with my friends.

3) I will take Charlie on her first train ride. 

4) We will finish visiting all of the state parks this year. 

5) I will try to keep things in perspective if life keeps numbers 3 and 4 from happening. 

6) I want to attend this year’s ShareUnion. 

7) I want to break our team goal for March of Dime’s March For Babies.

That is what I hope to get out of 2014. However, life has a way of dealing out it’s own ideas of the year for me. I suppose that leaves one more (and probably most important) resolution.

8) I hope to roll with the punches and celebrate every little thing.

Charlie and Kaia after yesterday’s hike.

Sometimes It’s Ugly… But Not Always

Tomorrow is World Prematurity Day. Two years ago, I was not aware that it existed.

There is nothing that will erase the memories of the NICU and Charlie’s first year.

I will not forget the terror, powerlessness, heartbreak, fear, sadness, loneliness, anger, frustration, worry, and desperation that I felt (and sometimes still do).

I will not forget holding my baby down as I learned to thread an NG tube,  stroking her head during countless epo injections, and her helpless expression as she anticipated each monthly palivizumab injection.

I will not forget the long demoralizing walk from the ER to Pediatrics when Charlie was readmitted.

However, I will also remember the triumphs, victories, and great strides.

I will remember the time I spiked the bottle like a football when Charlie finished her entire 20 mL oral feed for the first time.

I will remember the look on the neonatalogist’s face when I burst into tears as he first mentioned Charlie’s NICU discharge plans.

I will remember the high five the pediatrician gave me when Charlie resumed gaining weight after a long and perplexing feeding strike.

I will remember the sound of the cheers Charlie’s dad and I let out when she learned to roll over on her own.

I will remember the proud grin on Charlie’s face the first time she stood independently.

I will remember the love, support, kindness, and selflessness of all the people who have worked to support us from the weeks prior to Charlie’s birth through the present.

Sometimes, preemie parenting life can be brutal and feel merciless.

But, it also possesses beauty and awesomeness beyond words.

Ultimately, I’m grateful for every second of it.

Mostly, because I know how close we came to never having any of it.

This morning, Charlie and I participated in a local 5K run/walk organized to raise money for the March of Dimes. Charlie was very enthusiastic.

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 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.

Answering A Question About Loss

In reference to my post on Saturday, my friend Sally asked me:

“Would love to hear more (another post?) about what you mean here: ‘In addition, Charlie’s birth somewhat stole my sense of safety and confidence. This weekend was a step in reclaiming it.’ How did the event do that for you?”

Ever since she posed the question, I had been thinking about how I was going to answer something so complex. I have decided to note the losses and conclude with how March of Dimes Share Union this past weekend has helped.

Right now (I’m sure there will be more later), I can name four losses that this weekend helped tremendously with.

1. Charlie’s birth had taken away my sense of safety. Up until her actual birth, I was sure that matters of tragedy only happened to other people and was shocked when it happened to us. In addition, on most mornings of the 89 days Charlie was in the NICU (and the twelve days prior to her birth), I would wake up and say, “Please don’t let any thing bad happen today.” I had become accustomed to holding my breath and flinching in anticipation of bad news.
2. My confidence has been in pieces since Charlie’s birth. Her birth proved me wrong about so many things that I thought I knew or believed. Additionally, tragedy is an incredibly isolating experience. Both of which have eaten away at my confidence.
3. I had lost my connection with other people after Charlie’s birth. I am surrounded by some pretty great people. Admittedly, I sometimes feel disconnected from them. My worries, stresses, and complaints are so different than theirs.  Try as I might, I still feel like I live in a different realm even though they are incredibly understanding, kind, and considerate. I have a difficult time establishing a sense of belonging.
4. Charlie’s birth had disrupted my place in this world. My identity and roles have greatly changed since Charlie was born. I have had a difficult time figuring out my new place.

To address Sally’s question on how this weekend has helped with all of this:

It helped that I was surrounded by others with a shared common experience. It was healing to openly discuss my experience and hear different thoughts and perspectives from others with similar experiences.

My new role and identity were clarified by being with, seeing, and hearing from the other parents. I was in the presence of people that I felt connected with completely. For the first time since Charlie’s birth, I had an outright sense of belonging.

I was inspired by the strength and resilience of many of the attendees. While their situations may be similar, many were much more painful or challenging than mine. I am strengthened by their example.

I am encouraged to have seen and heard from those on a similar journey who were further ahead.

I was challenged several times this weekend to do things that were uncomfortable for me ( for example, meet many strangers and discuss deeply personal subject matter over the course of a couple days) or intimidating for me (one example, venturing into DC for one of the first times since Charlie’s birth and seeing visual reminders of the life that we were supposed to have).

These things were stressful and I had to actively confront my anxiety, sadness, and fears. My confidence was boosted by my successful (defined as not dying or being maimed) navigation through the many challenges. I’ve found, for me, with confidence comes safety. One step towards lessening my hypervigilance.

I am not sure that I will ever be able to verbalize in a comprehensive manner how this weekend has helped me.  In short, being around 78 courageous, brave, resourceful, funny, and wonderful people for a weekend can be beneficial for anyone.

I have many photos from this weekend. However, I want to respect everyone’s privacy. So here is another photo of Charlie. Photo Credit: Monica DeMariano

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.

Meanwhile, On Capitol Hill…

It is easy for me to get wrapped up in the chaos of our daily lives. I am so busy trying to survive the ups and downs that I sometimes forget about happenings that occur outside of our bubble.

Thankfully, I was informed last week that there are two pieces of legislation currently in front of Congress that concern premature birth and newborns.

One piece is the PREEMIE Reauthorization Act (S. 252/H.R. 541). According to the March of Dimes website:

“If enacted, the bill will authorize enhanced research, education and intervention activities aimed at improving pregnancy outcomes.”

More can be found about the PREEMIE Reauthorization Act here.

The other piece is Newborn Screening Saves Lives Reauthorization Act (S.1417/H.1281). Once again, the March of Dimes Website provides a concise description of the bill:

“The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.”

More about the Newborn Screening Save Lives Reauthorization Act is located here.

What can you do?

Advocating for these bills from the comfort of your home is simple. The March of Dimes Advocacy Action Center has made it easy to write your representative in support of this legislation.

Let’s get behind helping all babies.

Photo Credit: Monica DeMariano

Why I Blog

Why do I keep a blog? It is important to ask myself this question from time to time (especially when others are asking me). By answering it, I remind myself of where things started and assess where I want it to go.

The origins of my blog can be traced back to Charlie’s first NICU. A few days passed before I stopped crying in front of Charlie’s isolette. After which, I wandered into a NICU scrap booking class offered by March of Dimes NICU Family Support. Despite that I am the last person in the world that anyone would expect to see in a scrap booking class (and incredibly socially awkward), there I was.

I suppose that I needed a break from my reading at Charlie’s bed side (it was a teaching hospital with an amazing library). Or maybe, I was desperate to understand and become involved in the new world into which I was tossed. I am unsure of the reason, but I got more than a scrap book out of it.

I was so heart broken, bewildered, saddened, and despondent that I barely said a word the first class. I mostly listened. Hearing the other NICU moms’ discussions somehow made things seem a little bit normal. With each scrap I pasted, things seemed to get better for me.

I learned about what to expect, the way the NICU works, the language, and I started to understand. I began to process what was happening. I would hear other moms talk about how they felt. In my head I would respond, “That is precisely what I feel.” or “I don’t agree. This is how I feel…” It enabled me to comprehend my own feelings. By the end of Charlie’s stay at that NICU (she transfered to a second NICU), I had become one of those chatty moms and had made a very good NICU mom friend.

After Charlie was transferred to a NICU with private rooms, I scrap booked at her bedside in between hands on care times. Once Charlie came home, I completed the scrap book and abandoned scrap booking all together. By then, I was able to combine a few words with the pictures and logged our journey on Facebook.

After we moved, I had graduated to Tumblr. It did not take long until I had a WordPress blog.

I realized that I had no idea what I was doing (the last thing I had written was a tedious technical paper on Dendrimers as Nanocontainers) and started an informal blogging/writing education. In some of my free time, I read about my new blogging and writing hobby through websites and books. My blog is still in that stage where I imitate the sites that I admire or learn from. Eventually, this will evolve it’s own unique identity.

Will I have paid advertising? No (with the exception of advertising that WordPress itself may include because I have a free site), I’ve decided to keep this experiment a hobby. When will I stop blogging? I’ve decided to give Charlie her privacy in a couple years and discontinue this blog.

I blog because, in some way, I still need that scrap booking class experience. I need to see how far we’ve come and to process what is occurring in our daily lives. I want to hear those other moms’ discussions. I wish to express the fact that this (post NICU life) is really challenging and not be pressured to be optimistic all the time. I desire to contribute honest dialogue so that other parents do not feel alone. It is my hopes that all of this will at least help someone other than just myself.

In a nutshell, this is why I blog.

Charlie at the park earlier today.

Silent Night or Why Charlie’s Second NICU Rocked

Tonight, is an extremely quiet night. My husband went camping with Kaia (our dog), Charlie has fallen asleep, and the cat is curled up downstairs. The silence infused with Charlie’s rhythmic snoring reminds me of late nights in the NICU a year ago. I spent many nights with Charlie at the second NICU. It was an amazing place.

After two months of begging each morning, “Please don’t let anything bad happen today”, Charlie was deemed a “feeder-grower”. I was reminded to “Never trust a preemie” but told it was no longer necessary for her to remain at the very large level IV NICU.

For her third month, we had her transfered to another hospital which was closer to our home and my husband’s work. The NICU at that hospital was incredible with many great features.

Most importantly, it had private rooms. I was able to sit with Charlie and did not feel like I was in the way. Nor was I crammed into a corner and sandwiched between Charlie’s and another baby’s isolette. Her room had its own (reclining) chair. Therefore, it was not necessary to scavenge for one each visit like in the open NICU. We were allowed to participate in kangaroo care as desired without interruption. Whatever else was going on in the NICU did not impact our visit like at the other NICU. At night, I had the option to sleep in the recliner beside her isolette. It was comforting to know that I did not have to leave her if I did not want to.

Charlie’s new room gave us our privacy back and we started to feel human again. We were no longer subjected to the prying eyes over other babies’ visitors nor hear painful thoughtless comments from the same people. I did not have to endure the horrible experience of a NICU waiting room with unattended children and inconsiderate individuals. It was much quieter in the second NICU.

We were encouraged and allowed to provide most of Charlie’s care. Because I was able to stay with her comfortably, I was present to perform most of the hands on care and feedings. My husband was able to give her a bath for his first time and he often read her stories.

At this NICU, she began to feel like OUR baby. We started to make memories. I felt involved in Charlie’s care.

There was more continuity of care at the second NICU. Charlie regularly saw the same neonatalogists. They knew which doctor was scheduled to see her next and they communicated adequately with one another. That was a big difference from the larger hospital where Charlie’s case was handed off frequently and they usually did not know to whom.

The physical and occupational therapists were phenomenal with Charlie. They saw her often, made suggestions, and took time to teach me skills. They provided a one on one infant massage class for me, showed me how to position her, provided a book on preemie development, and answered questions.

We got to know the small nursing staff well. They helped us prepare to take Charlie home. They taught us about using a car seat with a small baby, administering medications, infant CPR, feeding, and small baby care. They were amazing people. I still think about them quite a bit.

There were things that I did miss about the first NICU. I missed a few of the nurses and the March of Dimes NICU Family Support. However, I was pleased with our decision to have Charlie transferred. The second NICU was where we, as a family, began to heal.

Overall, Charlie’s admission to her second NICU was instrumental in empowering us to care for her. The experience there helped me to feel competent and become confident in my new role as Charlie’s mommy.

My husband bathed Charlie for his first time.

This was taken a few weeks after the bath picture on the day Charlie turned five pounds.

Another NICU Milestone

Today was overwhelming. Earlier today, Charlie and I attended her first NICU reunion. It is hard to imagine that a year ago she was in an isolette a couple floors up from where we were gathering and fighting for her life. It is hard to believe that a year ago the hospital had the very same feel. Maybe that is why today was so difficult.

Charlie and I picked up my friend (and emotional support), Evie, on our way to the reunion. Evie asked, “Are you excited about seeing everyone?” I told her that I was nervous. I was not really sure why.

After we parked in the hospital parking garage, we started the long walk to the reunion. “That is where I sat with another NICU mom when her baby was having heart surgery”, I said and pointed as we passed a waiting area. I continued on to say, “This is the hall way that we sat in while we waited to hear if Charlie had NEC.” I do not think that I was saying it for Evie’s benefit. I was piecing together the story for myself.

Just about every hall way and waiting area in the hospital had some memory that went with it. It was an attempt to make sense of those two and a half months (Charlie spent another month in a different NICU) that I spent almost every waking second in that hospital.

We passed the cafeteria right before reaching the conference center where the reunion was held. Every day for two and a half months, I had eaten at least one meal in that cafeteria. Once I smelled the cafeteria, I felt like I was going to be sick. It was the same kind of feeling that I felt the day we got to take Charlie home. The emotions were overwhelming so my body translated it into feeling sick.

However, I did not get sick. I may have cried a little but I did not get sick. Once inside the reunion, I saw some wonderful people. There was the woman from March of Dimes who led the scrap booking sessions, who listened to me when Charlie was sick, and helped me to begin to understand things. Charlie and I got to see the incredible nurse who officially took care of her (and unofficially me) during a large portion of our time at this NICU. I think we may end up on some hospital PR piece together. I saw another NICU mom from when our babies “did time” together.  It was nice to see that her family is well.

As hard as it was to go back, I’m really glad that I did. I am not sure how I should thank people for helping me through one of the most difficult times in my life. I do not think they will ever realize their significance to me. Visiting to say thank you, catch up, and show them that we are well was a small thing for me to do.

It turns out, that the experience was also healing for me. Hopefully, attending the reunion will seem easier for me next year.

Evie holding Charlie at the NICU reunion.