Tag Archives: mom

How Little Is Understood

Only a handful of people will ever fully understand any of the feelings involved in Charlie’s birth. That is why I became so annoyed with this article that repeatedly appeared in my social media feeds today.

Numerous moms lauded it and responded with proclamations of sisterhood. However, not one of my friends that have lost a child praised it. Nor, did I see any of my fellow micro preemie moms passing it on.

The thing is, unless you are a micro preemie mom, you can’t possibly understand what I’ve been through. Even then, our experiences may be vastly different. Similarly, I can’t pretend to understand what my friends who have lost a child have experienced.

Yes, you may be able to imagine a bit of the fear that I felt when Charlie made her early arrival weighing in at 790g. But, you can’t ever imagine what it was like for me to sit beside her isolette in silence for days, unable to touch her or hold her. I maintained the vigil simply because I did not want her to die alone.

You can’t imagine the loneliness I felt when people constructed excuses not to visit me and my baby because it was too hard or uncomfortable. You can’t imagine the powerlessness I felt as I pled for my newborn’s life.  You can’t imagine the heartbreak, the anger, the fear, the jealousy, the envy, and the profound sadness I felt during her NICU stay. Each day, I woke up and whispered to myself, “Please, don’t let anything bad happen today. Please, don’t let my baby die today.”

Eventually, she did come home but it was not over.

There was more heartbreak and sadness that came with diagnoses and countless unknowns. Every little milestone was and is celebrated like a hard won victory. Because, that’s what they are.

Most importantly, there are the bits that most likely didn’t cross your mind. My relationships with friends and family have changed. Some for the better while others were broken or abandoned. The stress rocks a marriage. I feel disconnected from a lot of the world around me. I no longer relate to most of my peers.

While I’ve come out of it stronger, more resilient, wiser, and braver, part of me is wounded. I lost my sense of safety. I fight through anxiety every single day. I am haunted by guilt. Periodically, I mourn the loss of my birth story, the loss of my child’s babyhood, and the loss of the imagined life we were supposed to have. I will never be the same.

Each time I see the article pop up in my feed, it’s a slap in the face. It minimizes my feelings and is dismissive of my trauma. Instead, the article shows me how little you do understand. I don’t care that you are a mom. You can not possibly know. You are not supposed to know.

Something horrible happened to me and some of my friends. There are some things so horrible that you can’t understand unless you experience them first hand.

For your sake, I hope you don’t… because you’re a mom.

 

 


Count Down To Christmas!

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We watched the Polar Express together.

Friday night, we bought and put up our very first Christmas tree. Charlie was an enthusiastic participant. In addition to the tree, I hope to make gingerbread houses with her between now and Christmas. This is the first Christmas that she is able to actively participate in holiday themed activities. We are enjoying the novelty of it all.

During the tree assembly, Charlie shifted her focus between helping and running around the living room. At one point she babbled, “Mommy, mommy, mommy, I love mommy.” as she ran towards me. Stunned, I asked my husband, “Did she just say ‘I love mommy’?” He confirmed that, indeed, she had said it. It was the first time she verbally said that she loved anything.

I am counting down to Christmas despite the busy December.

Last week, Charlie was measured for Supra-Malleolar-Orthosis (SMOs). They are a smaller and a more conservative version of the AFOs she wore last year. The orthotics barely rise above her shoe line.

The SMOs were prescribed to correct her pronated feet, help her walk better, and will, hopefully, discourage toe walking. If she continues to toe walk, she may end up with hinged AFOs. She will get and be fitted for her SMOs in the upcoming weeks.

Next week, Charlie has an MRI scheduled for which she will be sedated. The MRI does not bother me, but the anesthesia and accompanying intubation does. I am a nervous wreck. Logically, I know it’s not a big deal and she will be fine. However, emotionally, I am terrified. There is not much I can do but have faith in my logic and trust Charlie’s doctors and nurses.

Nevertheless, this week, I may try to squeeze in a little extra quality time.

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Premature Babies: What You Don’t See

In honor of upcoming World Prematurity Day on Monday, I sent out the following tweet:

It was favorited and retweeted among those who celebrate World Prematurity Day. A prematurity poster toddler of sorts.

You see the before and after pictures. Maybe you think that prematurity is no big deal. These babies seem to turn out fine.

But, these pictures are oversimplifications… only part of a story. What is missing from these posts is everything in between.

What you don’t see is the three months she spent in the NICU perilously clinging to life while enduring countless painful tests and procedures.

What you don’t see is the long demoralizing walk from the ER to pediatrics upon her readmission to the hospital for complications due to her early arrival.

What you don’t see are endless therapy sessions and appointments with specialists in which we hope for and ask from her things that are arduous.

What you don’t see is how hard she worked for every little bit of progress.

What you don’t see is how, over two years later, prematurity continues to affect her life every single day.

What you don’t see are the babies who didn’t survive.

With all of the before and after pictures that are and will circulate in honor of World Prematurity Day, please keep in mind the things that you don’t see. Surviving premature birth is no small feat.


Time For Class

On Friday, Charlie and I spoke to a public policy class at the social work program from which I graduated. It was my first time speaking to a class about public policy. Some things went well and there are some improvements I can make in the future. I hope the students went away with something useful from our talk.

I left so hopeful and inspired. These students were bright, compassionate, creative, and full of energy. They asked great questions and had many good ideas.

As usual, Charlie was the star of the presentation.

Today, we attended a birthday party for a good friend’s two year old. During the party, I watched the other kids eat. I realized we have so far to go with feeding. The seven month old at the party managed biting, chewing, and swallowing better than Charlie does.

I see how far Charlie has come and dare to think we are on our way to being finished with preemie life. But then, I see her with peers and realize how far behind she continues to be. It’s a reality check of sorts.

Although, this time it wasn’t upsetting or terribly discouraging. It was a moment of, “Oh, we still have a ways to go.”

Maybe, I’m making progress too.

Charlie high fived her dad after he bowled a strike.

Charlie high fived her dad after he bowled a strike.

 

 


Fall Festival And Time To Fatten Up

We started today off at a Fall Festival at Sky Meadow’s State Park. There was a chill to the air, low lying fog, and the ground was wet. That is precisely why we chose today to go. We knew the crowd would be sparse.

Our visit to the festival was a fun and relaxing time. Charlie was afraid of the baby cows in the petting portion, loved the blacksmith exhibit (as usual), liked picking her own pumpkin, played in the kids area, and enjoyed the food vendor. But her favorite part was a display set up about Chesapeake Bay water shed.

10639600_10101976504940129_9113146869104312045_nThe display consisted of a table with a model garden set up on top. The garden was complete with vegetables, plants, and plastic back yard wild life. Hanging off the side of the table was a sheet that displayed what is under top soil. Under the table (behind the sheet), was a crawl way in which there were plant roots from the above garden.

Charlie loved the crawl way.

The stress of the cows mooing (it was an ongoing sensory thing we had to contend with) and the excitement of all the activities tired her out quickly. We ended up leaving earlier than intended. I had planned on letting her play outside all afternoon.

Our early departure turned out to be a good thing because the home health nurse arrived at our house an hour before her scheduled time. She performed her usual rituals and listened to Charlie’s lungs to ensure aspiration pneumonia does not become an issue, checked her vitals, and weighed Charlie.

Charlie has been eating very well recently. So well, that I had expected a leap in weight gain. Unfortunately, Charlie lost weight according to the weigh in. Not a huge amount of weight, but none the less, weight loss (half a pound).

I have racked my brain in an attempt to figure out where the weight went. I made sure there weren’t any variables between weight checks. We used the same scale, naked weight, and so forth. The only reason I can imagine for her weight loss is that she is incredibly active. Energizer bunny active.

So it’s back on the phone with the feeding clinic for me on Monday. Once again, I have no idea what to do about Charlie’s feeding situation. Who ever knew something like feeding could be this complicated?


Family Photo

Today, we took our traditional family photo. The whole thing became an accidental tradition.

When Charlie was in the NICU, the nurses would occasionally mention that we should take our first family photo. I refused. Back when I had no control over anything and felt completely powerless, that was something I could decide. Our family would not be documented, for the first time, in that way or at that time.

Looking back, I realize it was silly. But, I still had fantasies of leaving the NICU and forgetting all about preemie life.

284071_10100763182517989_2042550072_nAfter Charlie had been home for a few weeks, we decided to go to an apple orchard about an hour away. We lived in the Fairfax area at the time which made the trip sort of magical. There were open fields, fresh air, apples one could pick off trees, and fewer people. Things we did not have where we lived.

Suddenly, I decided that this was the place I wanted to take our first family picture. I remember silly things about the moment. Such as how the guy who took our picture commented, “How old is that baby? Three hours?” I remember how we were staring into the sun and how I stepped on a rotten apple. My eyes are barely open in it. But, there you have it. Our first family picture.

A few months later, we decided the Fairfax area was no longer right for us. We left DC Metro suburbia for the mountains. The following apple season we discovered that we now lived about twenty minutes on the other side of the apple orchard. We returned, picked apples, and took this picture.

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I don’t remember too many details about the trip.

Now, here we are. Another year has passed and we are over that orchard. There are dozens where we live and the novelty has worn off. However, today, we made the pilgrimage simply to take the traditional picture.

It’s interesting how things have changed in two years. What was then fewer people is what we now consider crowded. The walk up that big hill (which was a challenge the first time) was a piece of cake because we spend a lot of our free time hiking. The biggest change of all, Charlie walked up the hill (with assistance) with us.

So here it is… this year’s picture.

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A side note: Kaia (our dog) is not in the picture with us this year. She is alive and well (and the best hiking partner ever). But, we went to other non dog friendly places after this picture was taken.


My Favorite Sound

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

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

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

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

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

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

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

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

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

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


Ten Ways Life Changes After Having A Preemie

10 ways

1) You have acquired basic nursing skills. During my baby’s NICU stay I learned to give epo injections, insert an NG tube, read monitors, perform infant CPR, and various other skills. Many were required in order to take my baby home.

2) The smell of hospital food makes your stomach turn. With my stay on the high risk perinatal unit included, we have spent over one hundred days of Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again. I don’t know why they serve it every year at the NICU reunion.

3) Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At the age of two, she wears sizes twelve to eighteen months.

4) Simple questions become complicated. The questions that people generally ask new parents can’t easily be answered. It starts in the NICU with “When is he/she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5) You learn loads of medical terminology. You know what a physiatrist is. You understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL, and ROP mean.

6) Baby showers are complex situations. Baby showers are emotionally loaded. If you are brave enough to attend one, you wonder how to socially appropriately join conversations about birth stories and pregnancy. All the while, you are trying to get over that feeling of being the elephant in the room (being the physical proof of one of the many ways a pregnancy can go wrong).

7) People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full term pregnancy.

8) Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. Everything else in comparison is small potatoes.

9) You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage, and much more. You learn not to accept the first “No” as the answer. You fight and you fight like hell.

10) No accomplishment is ever small. I remember the date that Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones and nobody was sure that she would reach them. Every little thing, from tolerating food in her mouth to learning to wave, is a cause for celebration.

happy preemie

 


But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.


Today’s Feeding Consultation

Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.

Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.

1517637_10101695765129959_3631522303372407994_n_editedAt the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies.  At the end, we discussed what may be the issues and a plan.

From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines.  She also has a milk protein allergy which is common among preemies.

From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.

All of these things, hamper her feeding progress.

The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber.  It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.

The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.

Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.

Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.

 


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.


Charlie’s Birthday Weekend

We celebrated Charlie’s birthday this weekend and spent the long weekend at Breaks Interstate Park (number twenty four if you are counting). The park is located on the border of Virginia and Kentucky along a break in the mountains. The weather and scenery were a spectacular setting for the big second birthday.

Charlie enjoyed the weekend spent mostly outside. We participated in many activities and adventures which kept us entertained and laughing. Over the course of the weekend, I let go of the sadness that was tainting an otherwise joyous occasion.

It’s true, two is not the end of the preemie journey for us as promised. So what? I’ll chalk it up as another thing that didn’t play out for us and move on. It doesn’t matter anymore.

On the car ride back from the park, I kept thinking about Memorial Day two years ago.

I remember how the OB/GYN pulled a chair up to my bedside.

I noticed during my ten day stay on the high risk perinatal unit his body language told me everything before he spoke. If there was no news, he fluttered around my hospital room, fidgeted with the lid on his coffee, and glanced occasionally out the window. If it was bad news, he slid a chair up to my bedside to deliver it.

After he was seated in the chair on Memorial Day, he gently explained he was no longer comfortable continuing my pregnancy.

A couple hours later, the perinatologist entered my room and told me that I would not deliver that day.

Charlie was born via emergency c-section at 10:29 AM the next morning. A twenty six weeker by ten hours.

A few of the pictures from our weekend. 

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We Did It!

A quick post tonight because I’m tired. I’m happy to report Charlie and I attended my friend’s baby shower. It was a very nice party. Overall, things went well. However, there were a few strange moments for me.

First, I had to get over the feeling of being the elephant in the room. Like it or not, I am a shining example of one of the many ways things can go wrong. I don’t think people notice or cared as much as I was self conscious of it.

Second, because of the noise, excitement, and another kid pushed her down twice, Charlie became disorganized. When this happens, her feeding is terrible. I carry formula in the car for such occurrences.

It’s obvious that Charlie is too old for a bottle, I hate feeding her a bottle in front of other people. I ease my nerves by reminding myself at least it’s not an NG tube and chuckle to myself.

Third, it was strange hearing the other women reminisce about their pregnancies. I have no pregnancy stories or memories to share. Or rather, none that anyone would want to hear.

We did end up leaving early. But, it was due to Charlie starting to melt down and her desperate need for a nap.

Later in the evening, I drove back from the store and thought about the significance of the day. Two years since everything suddenly changed. I wasn’t paying attention to my speed until I saw the flashing lights in my rear view mirror.

At first, I was annoyed at myself for being so careless. As I watched the officer write up my ticket, I thought, “If this is the worst thing that happens today, I am lucky and it is a pretty good day.”


The Myth Of The Common Parenting Experience

After a brief recuperation period from my gall bladder surgery, it is back to business as usual. Charlie and I have resumed our regular activity and appointment schedule. However, something is different despite the familiar routine. Lately, I’ve been having the reoccurring thought:

There is no such thing as a common experience.

One of the things that I felt I lost when I became a micro preemie mom is the common parenting experience. Because of this, I struggle with envy and jealousy from time to time. It does not take long for a random parenting article such as “How Your Child Can Become Fluent In A Second Language” to pop up in my news feed and that pang of envy follows. Second language? We are desperate for a few words of a first.

I frequently battled the anger, frustration, and hurt that surfaced whenever I heard someone complain about a parenting problem I wish I had. Worried about having to pay future college costs? I’m busy scrambling to cover my child’s astronomical medical bills now.

Even though I’m surrounded by amazing people, I felt lonely and isolated. I secretly desired to rejoin the “regular” parenting experience. But then, something happened.

One night while seeking new blogs to follow, I surfed through countless sites. As I read through blog posts, I noticed that there were single parents, loss parents, gay parents, special needs parents, working parents, religious parents, holistic parents, adoptive parents, hospice parents, and a multitude of other parenting identities.

It clicked. The common parenting experience that I longed to be a part of doesn’t really exist. My observations over the next few days further supported the realization. I saw other types of parents at the store and at the playground. Not one of them was the same as the last.

I suppose the “common experience” is that everyone has their own unique experience and challenges. The grass only seems greener on the other side. Knowing this takes away from the bitterness brought on by envy and jealousy. I am starting to see beyond my own hurt. If anything, I feel less alone.

Charlie examines the slide before going down it.

Charlie examines the slide before going down it.


I Don’t Care That I’m Frumpy

I am frumpy. I probably was before having Charlie and I certainly am now. I know that I’m frumpy. The thing is… I don’t care.

Currently, I consider my aesthetically good days to be the days where I dodge a glob of oatmeal meant for my hair, have a near miss with being thrown up on, and no part of me is mysteriously sticky. Forget wearing matching clothes, keeping up with a regular haircut schedule, or even having a clue as to what is in style. These things are luxuries that do not currently fit into my life.

My clothes have to be easy to wash, stain treat, be replaced without a second thought, and require no ironing (who wants to spend time on that?). During incredibly busy weeks, I like to be able to pull things from the dryer and throw them on. I keep a set of back up clothes tucked away in the car for unavoidable mishaps.

Additionally, clothes have to stay in place and provide coverage despite the constant bending, being pulled on, and odd maneuvers. I prefer to refrain from bearing it all to the world while being tugged on by Charlie or bent over in a mad sprint to catch her. (It’s amazing how fast she can crawl.)

Also, I have to keep in mind textures. I want to be comfortable. More importantly, the material needs to be tolerated by my sensory sensitive baby. I don’t want to add to her stress when she needs to be soothed.

My hair is another issue. I had long hair before Charlie’s birth. While she was in the NICU, I had it chopped off. She constantly grabbed it and it always seemed to be in the way. It was easiest to cut it off during a time when germ control and ease of care were of highest priority.

Now, I’m growing it back out. I will not have to get it cut as often and I can easily pull it back. Unfortunately, it is in that in between stage… frumpy.

I have decided that I am going to own being frumpy in the same way that I’ve decided to own crying at random. They have become my things. For the time being, it is how my life works.

Some may be horrified and others may question my sanity after reading that last statement. Rest assured, while preemie parenting is the hardest thing I’ve ever done, it is not bad. Just challenging.

Right now, it feels like trail running to me. There are times that are similar to a grueling uphill run and moments as smooth as a down hill coast. Eventually, things are supposed to level out and I will be able to catch my breath.

I have accepted the fact that I am not one of those women that can be an amazing mom and look good doing it. I’ve seen those women and they blow my mind. I do not know how they do it. Instead, I am proud to say that I am a great mom, albeit far from glamorous.

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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.

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Charlie at the park earlier today.


10 Things Having A Preemie Has Taught Me About Life

From the moment I was hospitalized with pre-eclampsia at twenty four weeks, I found that I had much to learn rather quickly. It started when I had to learn what pre-eclampsia was and continued through out preemie life. Even now, I am still learning. Here are ten things that I learned about life from having a preemie born at twenty six weeks.

1) Frequently, things just happen. I used to think that less than ideal outcomes had a cause. After my time spent on the High Risk Perinatal floor and in the NICU, I realize that many times there is no rhyme or reason to how things play out. Now, I understand the meaning of “C’est la vie!”

2) Heroes don’t always wear capes. Sometimes they wear scrubs (as is the case of NICU nurses) and other times they are disguised in street clothes (like Charlie’s therapists or other people who show unexpected kindness).

3) Perfect does not always mean flawless… especially when used in the context of people. Quality of life is independent of ability.

4) Fight and fight like hell. Do not give up. Whether I’m advocating for Charlie or struggling with limitations forced upon us, most battles can be won in some way. If I lose, at least, I tried.

5) Be selective in choosing disputes and people. Caring for Charlie, managing her appointment schedule, running the household, and recreation time exhausts me. Many days, I feel like I’m barely keeping up. I have to be selective in where and with whom I invest my time and energy. I prefer to be with people and do things that rejuvenate me rather than those that further drain me.

6) My definition of “important” has changed significantly. Most of what was important to me before having a preemie is now trivial. 2013-06-09T21-07-37_6

7) Other than matters of life and death, most things can be managed or fixed. Some things just take more time than others.

8) Remember to breathe. There is nothing wrong or shameful in saying, “I need alone time.”

9) Laugh often… particularly at myself.

10) People can (and will) surprise and amaze me… that includes myself.


Invisible Challenges

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While Charlie and I are out on our adventures, Charlie will inevitably meet someone for the first time.  More often than not, the conversation exchange plays out in the same way.

The stranger will ask “How old is your baby?” while Charlie is shamelessly flirting. I have reached the point in which I am fine with using her actual age. I am also okay when I  hear the “She is so small!” reaction. In which case, I explain, “She was born at 26 weeks.”

The new person continues to dote over Charlie. Charlie reciprocates with laughter and a smile. Afterwards, the stranger makes a comment about how Charlie seems “normal” despite her early arrival. I smile politely and we go our separate ways.

The meeting is pleasant until the word “normal” is spoken. There are several reasons why the “normal” comment irritates me.

First, it bothers me that “normal” is the only acceptable outcome. If she continues to have special needs, is she less deserving of affection and approval? It does not bother me when someone points out that she is doing well. But, why must the word “normal” be used?

Second, Charlie struggles with feeding (she is still formula dependent), developmental delays (which her small size disguises), vision concerns, and sensory issues. There is nothing “normal” about any of these things. The perpetuating myth that premature birth does not have any long term consequences irks me. It perturbs me that the gravity of having a preemie is readily dismissed by those outside the preemie realm.

Finally, I find it worrisome. Charlie may need leg braces or some other sort of visible medical device. Will she be as accepted and doted over as much as she is now? If her challenges become more obvious, will people start viewing her as broken?

Charlie is not one of those anecdotal preemies that will catch up to her peers quickly and easily. Like many things in life, our baby experience did not turn out as we planned. However, Charlie is not anything short of perfect. Even if, it turns out she is not “normal”.


Pride

With a micro-preemie, I am used to bringing up the rear of the pack (even in the preemie realm). Charlie does not register on the growth charts, she is behind in her developmental milestones, and transitions slowly through out the day. I have become so accustomed to our slow pace that I saw a turtle crossing the road and remarked how quickly it moved.

On some days, things crawl and I wonder if we will ever make it to the next goal. However, Charlie will frequently do something unexpected that makes me smile, beam with pride, and erases all doubt.

Charlie was in utero the first time it happened. While I was hospitalized, her heart beat was checked each time my vitals were recorded. The nurses pointed out that Charlie kicked back every time they placed the Doppler on her. One nurse said, “Usually, the babies swim away when we do this. It is funny that she kicks back.”

When Charlie was born, she screamed the entire way to the NICU. The doctors warned us that she would be too sick to cry.

Those surprises were only the beginning. There have been many moments when she has unexpectedly squared up to a challenge, beat out her sensory issues with her curiosity, or reached milestones in her own way (her first word was “Yay!”). All of these things make me grin, chuckle, and appreciative of the little human that is growing before me.

One of such events occurred today. A warm downpour had started while we were finishing an afternoon at the park. Instinctively, my husband quickly pulled the rain proof cover over Charlie’s stroller. I said, “Let her feel the rain… it will be a good sensory experience.” He cautiously pulled back the cover. We both watched Charlie and waited for her reaction.

Charlie extended her arms and turned her palms up. Next, she opened her mouth and stuck out her tongue. Finally, she clapped her hands and started laughing.

As a micro-preemie parent, I find that I take pleasure in the strangest things. While I appreciate (and am grateful for) each milestone she attains, I find more delight in the Charlie specific things… such as learning to dance before she can stand, trying to sing before she can talk, or just laughing in the rain. For it is when she does those things, I no longer wonder about milestones. I know that all this baby needs is time.

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A picture from Charlie in the rain today. It is blurry because I had water on the lens.


Meeting Charlie

I met Charlie two days following her birth. The two days prior to our reunion are a blur in my memory. I remember being confused and disoriented. The vein my PCA pump ran into blew, I had an allergic reaction to the tape on my IV sites, the magnesium sulfate felt like a punishment for Charlie’s early arrival, and my back ached from the numerous failed epidural attempts. After everything settled down, I was deemed well enough to see my baby.

My wheel chair ride down to the NICU is a hazy memory. My husband expertly rolled my chair through a maze of hallways and elevators. Once we reached the NICU, I had to fill out a questionnaire and scrub up for the first of thousands of times. Even now, the smell of the hospital soap reminds me of that first hand washing. Finally, I was permitted to pass through the heavy doors into the NICU.

My husband pushed my chair past one isolette after another. With the constant sound of alarms, rhythmic hum of the respirators, and rows of glowing isolettes, the NICU did not look or feel like a nursery. Instead, it appeared as something out of a sci-fi story. My wheel chair ride ended beside a glowing isolette. Within it, Charlie slumbered.

I rose from my wheel chair, gingerly lifted the blanket draped over her isolette, and anxiously peered in. Through all the tubes and wires, I could see she was beautiful and perfect. Gently, I placed both of my hands on her isolette. It was the closest I could come to holding her. We were not allowed to touch her yet. Afterwards, I slumped into my wheel chair, placed my head in my hands, and sobbed.

I was overcome and inconsolable. That was not how things were supposed to be. I was heartbroken at the loss of our expected birth experience. I was grief stricken that my baby now had to fight for survival. I ached to hold her or touch her. I was frightened for my baby. I was angry at the numerous strangers in the room for being present for a very private moment. I felt robbed of the pure excitement and joy that I expected to feel when meeting my baby. I was devastated.

A nurse walked over and explained how Charlie was doing. My thoughts were distant. I did not really hear or understand anything she said. However, the moment was important. It was my introduction to the nurse that was among a handful of people that were key to my NICU survival.

Charlie’s first few weeks are foggy. During that time, I did a great deal of crying and functioned on auto pilot. Several days later, I was discharged from the hospital. I decided that I was going to do the only thing I could do for Charlie… be with her. I wanted her to know that she did not have to battle on her own. Nor, did I want her to die alone.

Every day, I held my breath and watched as Charlie grew. Luckily, I had an unexpected cast of characters (such as the nurse) that provided much needed emotional support.

I find it remarkable that I had lived my life without knowing what it meant to be overwhelmed with emotion until the day I first met Charlie. The sights, sounds, and smells from the NICU often act as a reminder.

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I took this picture the first time I saw Charlie. She weighed 708 grams.


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