Category Archives: Special Needs Parenting

Three

10476503_10102390539586379_4833958231860515447_n_edited_editedI thought about how to wrap this up for a week. I’ve already written about what I’ve learned and the meaning I didn’t find. Additionally, I’ve written about losses, changes, guilt, hope, awe, and grief. There are 395 posts including this one.

I think I’m comfortable ending here because I’ve said what I wanted to say. Plus, it’s not easy to write with a toddler screaming at me. (Wow, do I miss those long, frequent naps she used to take.)

This blog is the beginning of my parenting story. It is a chronicle of Charlie’s early start. I wrote it for me. I needed to connect, to vent, to make sense of the complex messy emotions, and to document whatever progress came. Thank you to my readers for coming along for the ride.

After Charlie’s birth, we fell behind and no longer fit into the “normal” world. Instead, after much grief, we made our own world. We played outside, made music, climbed, danced, laughed, and picked at food together. Maybe, one day we will catch back up to everyone else. During the course of this blog, I’ve learned to be OK with that “maybe”. I have begun to find peace.

11267762_10102403319834659_1155533460364652965_n_edited_edited_editedIt’s been a lengthy three years. From which, the theme that overwhelmingly stands out is gratitude. No, I’m not grateful for prematurity. Let’s face it, prematurity sucks.

Despite my complaints, I know how lucky I am. I’m grateful for the people who touched my life. I’m pleased to have found what I need even though I didn’t get what I wanted. Most of all, I’m thankful for the privilege to parent Charlie. While I may have nearly cracked, she has been nothing but brave, strong, determined, and full of joy through it all.

Happy third birthday, Charlie! It has been nothing short of extraordinary. I am honored to be your mommy.

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The Countdown

Today was Charlie’s last Early Intervention appointment ever. She has aged out of the program and is on to bigger kid things.

In a week, Charlie will be three. Over time, anniversary season has become easier for me. I remember the dates but I don’t obsess over them. Nor is anticipation or anxiety linked to the days. They come and go like most.

For example, I signed and dated a form. When I saw the date, I realized it was the anniversary of my admission to the high risk perinatal unit. After a few seconds pause, I went about my day and didn’t really think about it again.

While this time of year is definitely easier than years past, I haven’t escaped the emotion of anniversary season. My mood is pensive. Additionally, I find that I have little patience for non sense, people who are jerks, and life’s other irritations.

To cope with this, I’ve been avoiding crowds (even more so than usual) and focus my restlessness on yard work. I pulled weeds while Charlie played in her sand box. I trimmed bushes as she splashed in her baby pool. I assembled a wheel barrow when she napped.

It feels like twenty years since her birth and fifteen since I started this blog. It’s only a matter of days until Charlie is three and I hit publish on my final post.

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Charlie watches fish in the water.

 

 

 

 


Almost Three Years In

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Charlie, ten days old

My husband and I are almost three years into our journey of parenting a preemie. A short amount of time that feels like forever.

In anticipation of the upcoming Parents of Preemies Day, I’ve been asked to write about what prematurity means to us today. The abridged answer? It’s complicated.

You see, currently, I’m angry at prematurity. My anger flows in waves.

At first, I was angry that prematurity nearly stole my first and only child’s life. Then, I was furious because of the long term repercussions it has on her life (CP along with speech and feeding delays). That fury was followed by outrage due to the complexities and strain placed on my family life by having a preemie. Now, I’m irate because it extinguished my hope for having another baby.

But, I’m not only angry.

Despite the anger, I feel incredibly lucky. I am fortunate my baby survived her early arrival. I’m thankful that she exceeded doctors’ initial expectations. I’m grateful for the imperfect and unconventional life we have as a family.

However, I’m saddened.

I mourn the pregnancy I didn’t have (mine ended at twenty six weeks). I lament the typical newborn and toddler experience that was taken from me (we spent over 100 days of her first year in the hospital). I grieve the second baby who will never be.

On the other hand, I’m hopeful.

I’m optimistic that one day we will finally leave all the therapy, specialists, and orthotics behind. I believe that she will one day “catch up” to her peers. I look forward to possibly adopting in the future.

The preemie parent club is a club I wish I didn’t belong too. Even though there are other members, it is a lonely journey. I find it difficult to relate to other non preemie parents because in my world five pound newborns are huge and intake is measured in mL. I feel disconnected from the moms I see in my everyday life. A trip to Target usually involves picking up a prescription rather than coffee or shopping. Most parents claim that time flies. However, I’ve found it creeps by slowly while waiting for another appointment to begin or striving for that next elusive milestone.

IMG_2011As it turns out, I’ve found no meaning in prematurity. To me, it is a collection of emotions such as sadness, anger, grief, rage, loneliness, gratitude, hope, and, most importantly, love. Love is what keeps us from falling apart and helps us find joy in our everyday.

Being a parent of a preemie is not the life I’ve planned for or chosen but, I love it nonetheless. Though the journey is tough, I’m so grateful that she’s here. I can’t imagine our lives without her.


The Strangeness of Time

The feeding program evaluation went well. Charlie will attend the intensive feeding program this spring/summer. I should receive the dates any time now. SR Park Selfie

Charlie will be three soon.

Three. Years. Old.

It feels like it has been at least twenty years since she was born. Maybe, that is because of the seemingly endless infancy stage. For example, we finished regular late night feeds a few months ago, she continues to be formula dependent, and there is no end to diapers in sight.

Or, time could be dragging due to the monotony of a schedule packed with specialist and therapy appointments. Possibly, time crawls due to the high levels of stress and emotional exhaustion that accompanies micropreemie parenting.

Whatever it is, these last three years have felt infinite. When I look at NICU pictures or Charlie’s baby book, it feels like they are artifacts from forever ago. I barely remember my life before Charlie. My memories feel like someone else’s, not mine.  I have grown and changed so much that I hardly recognize myself. It has been a long three years. However, there is one aspect that has flown by… our Trail Quest.

The first time Charlie's thrown stone made it into the river.

The first time Charlie’s thrown stone made it into the river.

The point of the quest is to visit all thirty six Virginia State Parks. It started out as a way to survive lock down. Then, it evolved into an adventure Charlie and I shared. Sometimes, we include my husband, our dog, or both.

We have fun on our outings. We make memories. We relax. We play. We learn.

The other day, I sifted through our numerous photos from the parks. Everyone of the photos feel like they happened yesterday. I finally understand what people mean each time they say, “They grow up fast.”

Before looking through the pictures, her growing up felt anything but fast. The life depicted in the park pictures is how it was “supposed to be”. That is what I signed up for when I wanted to be a parent. The park visits are part of our “normal”.

Last Saturday, we visited our thirty third state park. We are getting close to the end and I’m surprised to find I’m a little sad. It was about the adventure and not the goal. I expected to feel nothing but celebratory when we finished.

Darn, those complicated emotions! Will the thirty sixth park be the end of our park obsession? No. One reason why is that the state park system is working to add more parks. I suppose we will never truly be finished. Plus, I’ve noticed that each park is a very different place as seasons change or as Charlie and her skill set grows.

From time to time, I mourn the loss of the pregnancy, baby, and toddler experience I didn’t have. But, I’m so grateful for the one I do have. I feel fortunate for every minute and second… even the painfully slow ones. Tyke Hike Pose Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike. 1510901_10102280045337739_8432824672223672896_n


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.

 

 


Today, The Pediatrician Called

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

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

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

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

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

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

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

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

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

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

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


The End Of Holiday Break

I’m guilty of not updating my blog. The vacation from therapy allowed Charlie and I to do other things.

For example, I’ve written this post: Ten Activities In Virginia State Parks For Kids Who Aren’t Walking Yet and this post: Why We Didn’t Have More Children. Mostly, Charlie and I had fun playing. She’s tried new things like a toddler tumbling class and regular swims.

Here is a video of tumbling class:

Next week, we hit the ground running as her therapy schedule resumes after a very long winter break. Hopefully, her orthotics will finally arrive.

Charlie continues to have issues with weight gain. She returns to the feeding clinic this month. I have no idea what will come next in the feeding realm.

Tonight, she enjoyed a Friday night swim. She is a big fan of swimming.

A little over four months until she’s three!

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Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 1380601_10102086778655719_168898052343210150_n

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.

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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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Charlie Loves Gymnastics

Charlie was invited to a gymnastics themed birthday party. “How fun!” I thought when we received the invitation. I wasn’t sure how Charlie was going to participate but I knew she would enjoy it.

The party was Saturday. Charlie was the smallest of the preschoolers that ran through the gym while the instructor set up mats. The other kids seemed bigger, possibly older, and had a more advanced skill set. To top things off, Charlie fell on her face before things even really began.

I assumed I would have to help Charlie participate. I was mostly wrong. After I helped her with hand over hand direction during the warm ups, I stood beside Charlie as she waited in line behind three other kids. In turn, each child ran down a mat, jumped on a trampoline, and performed a somersault on a sloped mat (all with the instructor and her assistant on stand by to help).

Charlie watched the kids before her and was ready for her turn. I said, “Go Charlie!” and held my breath. She ran down the mat, stepped up on the trampoline, jumped in place, moved to the sloped mat, and performed a somersault. Afterwards, she clapped for herself and ran towards me.

“Do you want to do it again?” I asked. ” ‘gain!” She yelled back.

I stood beside her in line, but it was unnecessary. Charlie seemed to understand the concept of the line and waiting her turn. When she was up front, she expertly raised her hand to let the instructor know she was ready. The instructor responded with a raised hand. I whispered, “Go!”

Charlie squealed with excitement the entire sprint down the mat. The instructor helped her on to the trampoline and off again after several jumps. Charlie decided to log roll instead of somersault down the sloped mat. Next, a low balance beam was added to the course. Charlie counted her steps on the beam as she held the instructor’s hand. Like before, she proudly ran back to me and blurted out, ” ‘gain!”

Charlie enthusiastically performed the routines over and over again. Each time she laughed, clapped, and squealed with excitement. She loved this party.

I found out afterwards that Charlie could attend a half hour class for five dollars. Today, we gave the class a shot.

Charlie enjoyed today’s class as much as the party. The instructor and her assistants seemed to understand where Charlie is skill wise and provided assistance as needed.

There was one little girl in her class whose mother worked intently with her on each element. She performed each step expertly and will probably go on to compete in gymnastics. That is most likely not in the books for us.

For me, my goal is simple. I wanted Charlie to have fun. If she learns to follow directions, learns to wait her turn, and grows stronger, that’s all a happy by-product.

I have a new favorite Sunday afternoon activity. It is watching Charlie squeal with delight as she runs towards her next tumble.

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I was unable to take pictures during gymnastics class because I had my hands full. This picture is a leaf she found while we were on a walk.

 

 

 


Thanksgiving Break!

Even though Charlie is not in school, we are on a Thanksgiving break of sorts. Due to the holiday, Charlie does not have a single appointment next week. And… I’m pretty excited.

The question of what to do with our free time will certainly be no problem. I keep a running list in my head of things I’d rather be doing with Charlie than therapy or appointments. Sometimes, it’s all I can think about during therapy sessions.

The week following our break, we hit the ground running again. Charlie has an appointment to be casted for a new pair of orthotics. She walks mostly on her toes, trips over her feet, and falls quite a bit. Hopefully, the new orthotics will help with those issues.

Tonight, I look forward to the week ahead.

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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.


10 Things You May Not Know About Me And My Preemie Mom Life (Or Confessions Of A Preemie Mom)

Because it’s Prematurity Awareness Month, I feel like I should be writing more this month. However, my mind is rebelling against any attempts I make.  It’s more than writers block. I have a lot of negative feelings when I think of writing about premtaurity. Today, I thought I would just go for it and write those thoughts I have but don’t share.

1) I am not strong or brave. I am simply a mom. I do for Charlie what any mother in my position would do. We’ve been handed more challenges than some. Quite honestly, I feel like I’m barely holding it together.

2) I am so very tired. No, not the tired other parents complain about. The tired that comes from things like fighting regularly with insurance companies, cutting excessive red tape to receive services, attending daily therapy or doctor appointments, having the same conversation over and over again with different providers, and keeping up with medications, orthotics, and procedures. Add regular parenting responsibilities to everything and I end up exhausted.

3) I am jealous and envious of other moms. I know I shouldn’t compare. But, I’m human. The jealousy stems from the idea that they have what I, once, was supposed to have… a normal baby and toddler experience. I’m envious of those moms whose kids can walk well (and not fall flat on their face ending up with a bloody nose or busted lip) or whose kids can eat independently. It’s petty and small but I deal with a lot of envy and jealousy.

4) The little things mean so much. I have become accustomed to living a life of crisis response.  A good day in my world is one where we are all still standing afterwards. When someone holds the door for us or is nice to us for no reason, it makes my day. Depending on how my day is going (such as one of those days where everything goes wrong), it will sometimes make me cry.

5) Crying happens a lot. I cry for a variety of reasons. I cry for what we have lost. I cry because Charlie accomplishes something new. I cry because having a second child is not an option. I cry because I’m touched by someone’s kindness. I cry because I’m frustrated, angry, tired or stressed. It mostly happens in the car or behind closed doors but I do cry a lot.

6) My volunteer work is a form of self care. My volunteer work is my way of dealing with all the anger, hurt, and powerlessness I feel. I channel those things into the drive and energy I use for  my volunteer activities. It is rewarding to make something good happen.

7) Sometimes, I need to go outside. When I find myself losing it, feeling defeated, or at my wits end, I either go for a hike or sit outside with Charlie. Being outside relaxes and recharges me.

8) I can not stand platitudes. I want everyone to know that it’s perfectly acceptable to say, “I don’t know what to say.” or “Yeah, that sucks.” Platitudes rarely, if ever, provide the comfort they are meant to provide. Mostly, they tell me how disconnected I am from you and everyone else.

9) I neglect my own health care. My neglect ranges from small things to big things. This month, I had to go without an inhaler with an $85 co-pay. The past few months, I have been putting off going to the dentist to have a temporary bridge replaced and teeth pulled. For a couple of years (since I found out I was pregnant with Charlie), I’ve needed to have another spinal fusion.

The neglect is not because I’m lazy, cheap, or irresponsible. Mostly, it is because I don’t have the money for these things. I’m priced out. Additionally, while there really is not a good time for back surgery, it’s an impossibility when you have a small child with special needs.

10) Despite all of the things listed above, I’m grateful, optimistic, and hopeful… just not every moment or everyday. I’m grateful for everything we have such as a home, food, and Charlie. I try to see the things we have or could do rather than what we don’t or can’t. I’m hopeful that either I will adjust to this life, Charlie will overcome her challenges, or both.

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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.

 

 


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.

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I Confess, I Hate Feeding

I have to say it. I hate feeding. Or rather, I hate feeding disorders. For two and a half years, we’ve been desperate to avoid the g-tube and have managed to do so, so far.

As far as feeding goes, it is a see saw ride between hope and discouragement. I find that Charlie’s feeding disorder affects my relationship with food.

Before all this, I relished mealtime. Now, eating feels more like a mundane chore. I’m no longer excited or enticed by dishes or deserts.

I’ve lost the ability to derive pleasure from eating. It has become a routine like brushing one’s teeth…  something we do to stay healthy and alive.

I blame the change on our struggle with Charlie’s feeding disorder.

Our most recent set back happened at her last weight check. The use of erythromycin has helped significantly with Charlie’s gastroparesis (delayed gastric emptying). Charlie indicated that she was ready to attempt a slow transition to solids.

Not only did she tolerate solids (soft solids), she ate well. We continued to offer her the usual formula but we introduced more solids. At first, it was mostly for practice. But she enthusiastically gobbled the offerings and also wanted to try the food on our plates. We happily indulged her desires.

It seemed like between the formula, what she ate off our plates, and the food we offered her that she was always eating.

When it was time for her weight check, I was excited. I couldn’t wait to see how much she gained. I dared to hope that it was the beginning of the end of her feeding issues.

The nurse placed her on the scale and announced her weight. I gasped. How could she have possibly lost weight?

I tried to figure out the inconsistencies. Was it the same scale? Was it a naked weight? Was the scale zeroed properly?

I couldn’t figure out the missing weight. That day, I called the feeding clinic and let them know that there may be a problem. I wanted to be proactive before it turned into a bigger problem.

The feeding clinic’s dietitian requested that I keep a food log for Charlie. I diligently and meticulously (I have chemistry experience) documented every morsel of food that Charlie ate.

However, I discovered a problem. Charlie eats very slowly and pauses frequently because she is tired. This is why she eats all day.

The dietitian wanted me to break it up into breakfast, lunch, and dinner. But, Charlie ate continuously through out the day and there were no defined meals. I documented everything by day. The dietitian could figure out breakfast, lunch, and dinner.

The results? Charlie consumes 130% of her caloric needs. She also consumes more protein, vitamins, and nutrients than required. As of right now, we are unsure why she lost/is losing weight.

But, there are a few theories.

First, Charlie is extraordinarily active for a two year old. Maybe she is burning more calories than she is taking in.

Second, maybe there is an issue with poor digestion or malabsorption. When she was 100% formula fed, she didn’t have weight loss issues as long as she ate the amount of formula recommended. But, the formula is fully hydrolyzed (broken down) which makes it easier to digest.

It could be none of these things.

Maybe the weight loss was just a random fluctuation or there was an error during the weight check. And, her next weight check will be better.

Her next weight check is in a week. I hope it goes well. I have my fingers crossed that this is just another scare. If not, her follow up with the feeding clinic is the following week.

A sneak peek of Charlie's Halloween costume which she wore this week to Chuck E Cheese.

A sneak peek of Charlie’s Halloween costume which she wore this week to Chuck E Cheese.

 

 


We’re Not Supposed To Be Here

“We’re not supposed to be here” has been my pouty mantra since around the end of the summer. A therapist or a doctor will tell me how well Charlie is doing. I respond along the lines of, “She is… but this isn’t how it was supposed to be.” I remind them of the empty promises from the neonatalogists and the unfulfilled prophecies.

Charlie wasn’t supposed to need all the specialists or therapists. She was supposed to “catch up” quickly and easily. This wasn’t supposed to be our life.

I know, it’s small, it’s petty, and, even childlike. But, I have been sulking. It’s not one loss I’m learning to cope with but countless other losses that unexpectedly hit with a crushing blow. The proverbial roller coaster ride never really ended for us.

The past two and a half years have been very long and feel like a completely different life. So much so, that when I visit places I lived prior to Charlie’s birth it feels like I’m visiting a dream. I know the place well but I feel like it was someone else’s life that I remember occurring there. Not mine.

After dinner, I took Charlie to get her non dairy frozen ice cream substitute. She loves it and will devour it with a smile on her face.

I sat there and watched her gorge while totally focused on the treat in front of her. During the moment of silence, I thought about how much we laughed today, the new word (“funny”) she said, and all of the fun we had together. Then, it hit me.

We’re not supposed to be here.

At least, she’s not.

They thought she wouldn’t survive her delivery. Yet, she was gobbling ice cream in front of me.

I don’t know where we are supposed to be. I suppose I will have to make it up and chart the course as we go.

However, today, the phrase “We’re not supposed to be here” transitioned from a phrase roared in frustration, anger, desperation, and exhaustion to one whispered in breathless awe.

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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?


I Scream, You Scream, Charlie Speaks For Ice Cream

I had a feeling it was going to be a great semester for Charlie’s speech. I knew in the second week that Charlie’s student therapist understood Charlie. As sweet and cute as Charlie is, she is highly energetic and difficult to focus (more so than most two year olds).  She can be a handful.

By the second week, the student therapist had learned to work with Charlie amazingly well. I was impressed.

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This is what part of the screen looks like when I watch from the observation room.

For most sessions, I sit in the observation room with the other parents and watch the session over the cameras on a computer screen. I did this initially in case Charlie became unruly or melted down. I wanted to be able to rescue the student therapist if needed. Now, I just sit there, read, and occasionally glance up at the screen.

What goes on during speech therapy? A variety of play activities. Each semester, I’m always impressed by the students.

If Charlie starts to run circles in the room, the student therapist patiently says, “Oh, you need to run? OK, lets go to the sensory room and bounce on the trampoline.” While Charlie bounces, the student therapist sings a song about bouncing with her.

In another activity, Charlie pretends to shop and has to ask for each item she wants to put in the cart. In Charlie’s favorite activity, she plays basketball where she has to ask for the ball and to be lifted up to the hoop with “Want up!”.

Last session, she played a considerable amount of time with a fake ice cream cone. I noticed it when I looked up at the screen. I thought it was odd because Charlie has never really had ice cream. She gets the non dairy stuff when we go get ice cream. Not the type of ice cream she was playing with while learning to say “ice cream”.

Later that evening, Charlie, Charlie’s dad, and I grabbed a quick bite to eat. After we were finished, we passed the yogurt store where Charlie gets her non dairy treat. She pointed and exclaimed, “W-want ice cream! Ice cream!”

I was stunned.

We actually understood what she was saying! How did she make the connection that her non dairy treat in a cup was the same as that creamy looking cone she played with earlier?

We were obligated to follow our rule. If Charlie uses her words to ask for something, she gets it. She got her non dairy version of ice cream that evening.

Overall, I’ve noticed significant improvement with her speech. Charlie experiments more with two word phrases such as “Bye daddy!” and we can understand more of what she says.

Feeding is finally moving forward as well. With the introduction of erythromycin, she eats more than two bites, doesn’t vomit, and her reflux is gone. She still has difficulty tolerating some textures and with chewing food. However, I’m relieved that she is no longer stuck.

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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.


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