Category Archives: Organizations

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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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.


Woodland Creature

Yesterday was the first day of a photo contest in which I entered a picture of Charlie. While I campaigned for votes, I talked to friends that I hadn’t spoken to in a while. There isn’t a good reason as to why I had fallen out of contact. I suppose it is a part of life (more specifically, special needs life) that it happens. With each conversation, I was reminded of how fortunate I truly am.

Contained within my smorgasbord of friends there are:

The friend that revealed her experience with a late walking daughter to help me feel less alone.

My show going guy friends (more like brothers) from my twenties that are now scattered across the globe but don’t hesitate when they are needed.

The friend that came to see Charlie at her sickest (without being asked) when I had stopped asking people to visit because no one would.

Our old neighbor who visited several times during Charlie’s NICU stay and has always been a friend.

The couple that visited me in the hospital before Charlie was born, while Charlie was in the NICU, and continue to socialize with us regardless of our baby in tow.

There are the friends from my past that good-naturedly voted without a second thought.

The couple that included a stop to visit pregnant me in the hospital in their itinerary while in town and have been there for us ever since.

One of my newest friends, a CP mom, that assists in problem solving and listens patiently because she knows exactly how it feels.

My friend that will let me vent for as long as needed, is not afraid to say “That stinks”, and will laugh with me about life afterwards.

The friend who told me I was the sister she wished she had.

My preemie mom friends that are quick with understanding and encouragement whenever needed.

The amazing women in my moms groups who have their individual strengths and are a force to be reckoned with collectively.

And there are many more that cheer for us and Charlie.

At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things. However, I’m glad I did. Not merely because I want to win (which I really do and we are so close to first). Rather, I was reminded how lucky I am to have so many incredible people in my life. Unfortunately, sometimes I make the mistake of forgetting this as we go about our daily lives.

1238743_10101493155581119_1602306659_n This is the picture of Charlie titled Woodland Creature that I entered into the contest. It can be voted on by clicking vote here.


World Prematurity Day Wrap Up

A short post tonight because I am exhausted after this past weekend and today’s packed schedule.

I spent all day yesterday at the Navigating the Journey Through Childhood: A Parent/Provider Conference which was organized by Preemies Today to celebrate their tenth anniversary and World Prematurity Day. I’ve mentioned previously what a wonderful organization Preemies Today is. The conference was excellent and exceeded my expectations. The information and topics presented addressed current and relevant aspects of preemie parenting life. The sessions were so interesting, I had a hard time choosing between them.

On a personal note, the conference was held on the hospital campus with Charlie’s second NICU. It was in a separate building but it was still strange to be there. A couple of the session rooms had the same wall paper as Charlie’s NICU room and it brought back some memories. Being there was nowhere near as tough as going to her first NICU reunion. It merely felt odd to be on that hospital’s campus and not go through my established routine.

After the conference, Charlie and I had a girls night eating chips and beans. She did well. Because so much work went into her feeding, I am thrilled each time she tries to eat.

She did get some of the beans in her mouth.

She did get some of the beans in her mouth.


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.


Reintegration

After everything we have been through, I am unsure how one proceeds to ease back into ordinary life. A change of location has been helpful in our transition. And, so have the amazing people that I have met in our new locale.

I have been slowly getting my feet wet reentering society as time progresses. I thought I was doing quite well. Today, I realized that I’m no where near considering myself reintegrated.

This morning, I attended a great community program for moms. In short, the program consists of others watching our babies for a couple hours while the moms get together.

Because it was the first time Charlie had been away from her parents, I was a bit uneasy dropping her off. The odd thing was that I was not worried about Charlie. After seeing her critically ill, I don’t sweat the small every day things. I was more concerned with the comfort of the care taker. Would she be comfortable with the variety of Charlie issues?

I decided to give it a try since I would be close by if needed.

I snuck out while Charlie was distracted and joined the other mothers. As a group, we had breakfast and made a craft. I was pleased that my assistance with Charlie was not requested.

It is becoming less difficult to be around pregnant women and listen to other moms talk about being pregnant or their birth stories. However, it still stings a little.

The gathering was concluded with a group prayer. It is a rare occasion that I am surrounded by praying people. When I looked up, a memory was sparked. Suddenly, I remembered the last time I was surrounded by people deep in prayer… it was in the NICU.

It was during Charlie’s first month of life. I had retreated to the waiting room during shift change. Exhausted, I sank into a chair and was joined by other parents as they trickled out of the NICU.

A new family had arrived and, like many, unexpectedly found themselves a NICU family. I tried not to watch as they comforted one another and circulated the details between themselves. The crying fell silent as they prayed together.

I remember this moment very vividly. Because at the same time, there was a young child screaming loudly while climbing on furniture near them. I was enraged by the inconsideration of the oblivious parent that sat close by texting. Could she not corral her child and respectfully give these people a moment of silence?

As I was reminded of that moment this morning, I could feel the tears welling up in my eyes. The emotions that flooded back were strangely powerful. I fought off the tears (thankfully, this was not a moment of random crying) and realized not all of my anger was directed towards that thoughtless woman.

Yes, she was very inconsiderate and a nuisance. However, I was angry that my baby was in the NICU. I was furious that anybody else had to be there as well. I was frustrated that some people, like that woman, will never understand. Mostly, it stemmed from sadness and grief.

When this morning’s prayer concluded and the session wrapped up, I went to retrieve Charlie. I was not sure what I would find. To my surprise, she and the teacher did exceedingly well. I, on the other hand, have a ways to go.

Photo Credit: Monica DeMariano

Photo Credit: Monica DeMariano


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.


Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

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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.


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