Tag Archives: micropreemie

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.

 

 

 

 


Baby Clothes

Out of everything, baby clothes have held a special place in my parenting world. Not only did Charlie’s birth entail numerous losses, but there were very few parenting choices that I got to make. What Charlie wore was the only thing that could still go the way I had imagined it when I first got pregnant. I clung to my idea for her wardrobe fiercely.

Anytime Charlie out grows a size, I pick out the clothing pieces that mean something and place them in a drawer. The pieces in the drawer will be incorporated into a quilt one day. The rest of the clothes get dumped into a trunk in the basement and forgotten. Each time I add to the trunk, I tell myself that I will deal with it at a later date.

You may wonder how clothes can mean something. Also, you may find yourself asking why I needlessly store (OK, hoard) baby clothes in the basement.

I will begin with the easy question. Many of Charlie’s old clothes are significant to me because they have important memories attached.

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The last day she wore her “Sweet On Mommy” onesie.

For example, there is the preemie sized onesie she wore in the NICU that said, “Sweet On Mommy”. Each time she donned it, I marveled at the fact that I was the “mommy” it was referring to.

Also in the drawer, there is a size zero to three month sleeper with pink cats. One of my husband’s coworkers gave it to us the week Charlie was born. I remember when I first saw it. I held it up and couldn’t imagine my baby ever being big enough to fit in it. The day came during the week of the presidential election. I tried it on her after a bath and sobbed because it finally fit.

In fact, I was still crying when I investigated a knock at the door. I opened it to find Obama supporters who were canvassing the neighborhood in an effort to encourage votes. I am sure they wondered what the blubbering lady carrying a baby was about.

These are the kinds of clothes that occupy the quilt drawer. In the not too distant future, I will make a quilt using these clothes. Additionally, I plan on sewing the patches I’ve collected at each state park on to the quilt.

I don’t think I ever had a plan for the clothes in the basement. I wanted to donate them. But, I needed the donation to mean something to me. I knew it was not simply a matter of dumping giant garbage bags at the local Goodwill. Those weren’t just any baby clothes. They were Charlie’s clothes. They were my solace. They deserved better. But what?

This week, Preemies Today put out a request for gently used preemie and newborn sized clothes for a NICU baby shower this Sunday. I decided this was it. I was ready. It was time to deal with the clothes.

Tonight, I sorted through the clothes and selected my donations. (Basically, anything in the requested sizes that didn’t carry a significant memory and wasn’t stained.) It felt like an archaeological excavation. Each piece of preemie and newborn clothing was like an artifact from a lifetime ago. I shuffled around my selections for the quilt drawer and washed what was to be donated.

These clothes have served us well. It’s time for them to comfort another NICU family. And, perhaps, become a memory worth saving.

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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


The Trouble With Feeding

Tonight, I jumped in a conversation on Twitter. The topic was about colic. Someone jokingly asked if there was colic in the NICU.

And, I remembered.

Charlie was fussy after she was transitioned off of donor milk to 24 cal/oz preemie formula. She didn’t cry, at first, but was incredibly gassy. The excess gas was explained by the removal of the replogle. I was reassured that it would get better.

It didn’t.

The last week Charlie was in the NICU, she finally took the majority of her feeds from a bottle. She sometimes cried after I fed her. I asked the nurses and the doctors if it was normal. I was told it was. This time, the high calorie content was cited for the digestive disturbance.

Things escalated.

About a month or so after discharge, Charlie screamed relentlessly after every feeding. I was told that it was probably colic. Then, the vomiting began.

Because she had reflux (formula had to be suctioned out of her nose if she laid flat), the vomiting was initially attributed to it. Finally, Charlie vomited while we were at the pediatrician’s office. I wiped it up with the many spit rags I carried and tucked it away. As disturbing as that sounds, that was our normal at the time.

The visit wasn’t with our usual pediatrician (she was out of town) and the doctor was ready to send us home. Before we left, she told me what to watch out for in the vomit. When she finished listing off colors and textures, I pulled the soiled spit rag out, showed it to her, and asked, “You mean like this?”

Charlie was readmitted that afternoon.

Pyloric stenosis was ruled out. Her formula was changed to a fully hydrolyzed formula (24cal/oz). She improved. But, she continued and continues to have issues.

Her stomach emptied slowly. She has a feeding disorder due to a combination of oral aversion and possible apraxia. Charlie is still (fully hydrolyzed whey protein) formula dependent.

I constantly tell myself that I’m over it. It is what it is. Other kids and parents have to deal with so much more. After everything we’ve been through, this is such a little hurdle.

However, that is only partially true.

The few tweets I sent out tonight revealed to me (and probably weirded out the other people) how strangely emotional this part of the journey has been.

For starters, I feel guilty that I didn’t push harder in the beginning when my gut was telling me that it was more than colic and reflux. I remember the helplessness and desperation I felt to get it figured out.

Now, after two straight years in feeding therapy, I feel a similar sort of desperation to get Charlie to adequately consume food. I dread meal times. I loathe feeding therapy. I detest the way that feeding and caloric intake is always in the back of my mind. Weight checks are heart breaking and demoralizing.

My hope is that Charlie’s evaluation for the intensive feeding program goes well this month. I hope she is a suitable candidate for the program. If she is, she will attend the program in May.

Nevertheless, I’ve learned, by now, to have a plan B. Plan B is to discuss alternatives with the developmental pediatrician in case Charlie is not a good fit for the program. I have accepted that Charlie needs more help with feeding that I can provide. Now, my job, as her mommy, is to find the appropriate help (and, possibly, fight insurance to pay for it).

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Charlie is a very happy toddler when not presented with food.


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.

 

 


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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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.

 

 


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.

 

 


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?


7 Things On My Fall Bucket List

To do something a little different, I’ve decided to participate in the DC Ladies Blogtober (it’s not too late for you to join in). Today’s challenge is to write a fall bucket list.

So here it is. In no particular order, My Fall Bucket List:

1) Begin to wean Charlie off of her formula.

2) Play in the leaves with Kaia (our dog) and Charlie.

3) Visit Harpers Ferry before the leaves fall.

4) Introduce Charlie to caramel apples.

5) Get lost in a good book for a day on the front porch and enjoy the fall air.

6) Clean the house thoroughly before we are snowbound during the winter.

7) Have a bonfire with friends.

Charlie is unsure of what to think about the wind. And yes, she did try to taste it.

Charlie is unsure of what to think about the wind. And yes, she did try to taste it.

 

 


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.


Where Things Stand With Feeding

While I was in Arizona last weekend, Charlie’s gastroenterologist left a voice mail. The upper GI showed Charlie has significant gastroparesis (delayed gastric emptying).

To get things moving, he prescribed erythromycin (an antibiotic that has a side effect which helps with motility) to be given twenty minutes before she eats.

So far, so good.

Finally, Charlie’s reflux is no longer an issue. Plus, she doesn’t vomit at night, her breath doesn’t smell like vomit, and she eats more than two bites of food. I hope this is the missing piece to the feeding puzzle (which also includes oral aversion and motor issues). Time will tell.

Today, she played in the backyard. She loves her car but she only knows how to make it go backwards.

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Tag! You’re It!

10672263_10101929074406299_6421064225115772922_nTonight’s post is very brief because we have to be up before dawn tomorrow for Charlie’s Upper GI.

After today’s speech therapy (which went really well!), I took Charlie to a new (to us) park. Normally, when we go to the playground, I end up playing with Charlie. The other kids usually refer to her as a baby and show no interest in playing with her.

Today was different. Charlie played her very first game of tag! It was a big day in our world.

 

 

 


Plastic Toys

Today was the first day of speech therapy for the fall semester. Charlie is back to her four day a week therapy schedule. Summer was nice while it lasted.

Charlie attends speech therapy twice a week at a local university. It is much more affordable than private speech and has been more effective than EI. Since it is a teaching program, SLP students conduct the therapy session under the video supervision of an instructor.

Each semester, the student assigned to Charlie changes. Charlie met her speech therapist for the fall semester today. She did well with Charlie. I think this is a promising semester.

Afterwards, I took Charlie to Chuck E Cheese’s for dinner.

I think I’ve mentioned Charlie LOVES Chuck E and all things Sesame Street. The excitement of both things brings forth those elusive words. Activities that involve Chuck E Cheese or Sesame Street are frequently on our schedule.

If it’s timed right (off times when it’s empty), it’s a therapy dream. With minimal effort on my part, she can work on: sensory (loud noise, bright lights, motion from the rides), feeding, OT (put coins in slots, push buttons, work the toddler games), PT (builds strength pulling leavers, climbing up on rides, dancing), and speech (she mastered the “eee” sound by saying “Chuck E”).

This evening, Charlie and I went about our usual routine at Chuck E Cheese’s: we chit chatted with the manager while we ordered food (yes, the employees know us by now), we worked on feeding (the video distraction makes for longer feeding attempts), we watched and talked about the video loop (Charlie: Doggy! Me: That’s right! What’s the doggy doing? Is the doggy singing? Do doggies sing?), we danced (with Chuck E and to the video loop), we played games (she likes the Feed The Pig game), and she rode rides (she loves the carousel).

At the end of it all, Charlie and I went to cash in her tickets. This part has been a challenge.

She asked for something the last two times we redeemed her tickets. However, I couldn’t understand her. It was the same sound both times but I couldn’t make out what she was saying.

Both times, she was satisfied with whatever toy she happened to receive. But, I felt bad. Charlie was trying. Despite her best efforts, she couldn’t get what she wanted because I failed to understand her.

Tonight, we stepped up to the counter and Charlie said, “Appy”. The same sound she said the past two times. I took a fresh look at the glass case as she said, “Appy” again. I glanced at the employee (the staff is amazing) with an expression that begged for help. I didn’t want to waste his time but I desperately wanted to figure out what she was trying to say.

The last time, it sounded like a question, “Appy?”

I scanned the case again and IT CLICKED!

I blurted out, “Airplane! Do you want the airplane?” Charlie said, “Yeah! Appy!”

I passed the little plastic airplane from the employee to her hands. She took it and pretended to fly it among the games and rides.

Once again, I had to fight back tears.

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Charlie attended a birthday party last weekend.

 

 

 

 

 

 


NICU Reunion Ahead

This weekend is Charlie’s NICU reunion. I think it’s supposed to be a happy event. However, I have mixed emotions.

Last year’s reunion was the first one Charlie and I attended. To be honest, it was tough. The walk from the parking garage to the hospital conference center was like a walk through a dream. The sights, sounds, and smells stir up so many emotions that the whole thing becomes really overwhelming.

It’s difficult to see the babies that were sicker than Charlie who are now so much further ahead. It’s hard to bring back the baby, that everyone thought would catch up by two, with noticeable delays.

Why go back? Why put myself through this? There are many reasons.

Gratitude is one reason. Our attendance at the NICU reunion is a way of saying thanks to the people who saved my baby and helped me. It’s incredible to see Charlie’s primary NICU nurse.

Another reason is the other NICU parents. I want to see the other parents who were there with me for the majority of Charlie’s three months. I want to know they are well.

The final and most important reason: It’s for me. I’m not going to let the trauma trump me. Each time I go back is an opportunity to process things further. It’s a chance to move ahead in my attempt to leave the trauma of her NICU stay behind me.

Ready or not, here we go… again.

A mommy and me selfie taken today during backyard play.

A mommy and me selfie taken today during backyard play.


Finding Coverage For The High Price Of A Feeding Disorder

I used to complain about the hefty price of $23 a can for Charlie’s specialty infant formula. We don’t qualify for WIC and I was told our insurance would not cover it. Until she was switched to another formula at nine months, I had to bite the bullet and pay out of pocket.

Just thinking about that first formula made me wince up until today. It was today that I found out the price of her latest medical food (formula is called medical food when children are no longer infants) and I thought I was going to be sick.

What is a mother to do when her child can not consume adequate nutrition through food but can not afford the doctor’s recommended alternative? There is no choice. I had to figure it out. I knew there had to be a way to get it covered. But, how?

First, I called Charlie’s primary insurance carrier. Sadly, each time I call Charlie’s insurance provider, I hope that the person answering will be friendly, helpful, and accommodating. Not this time. Not ever.

I got a smoke screen. The representative on the phone explained that our drug plan should cover it.

Next, I called Charlie’s prescription drug plan carrier. While I was invited to order the formula through the mail order pharmacy, I was told because it does not technically require a prescription to be dispensed it was not covered.

Afterwards, I called Charlie’s secondary insurance. This time, I was told Charlie’s doctor would have to call before they would even discuss coverage. The person was curt and would not provide any helpful details.

For a moment, I was frustrated and wanted to cry. However, I continued to hunt for a solution. During my search, I discovered many of the medical nutrition companies have pages on their websites that address insurance concerns such as the pages found here, here, here, and here. Apparently, I’m not the only parent who has faced or will face this problem.

I called one of the helplines offered off of a nutrition company’s website. The woman who answered was incredibly helpful in dealing with my insurance company. After an afternoon on the phone with Charlie’s insurance providers and waging a small battle, I found out it is possible to get medical food covered under the Durable Medical Equipment portion of the policies.

Charlie’s prescribing doctor needs to write a letter of medical necessity, supply the needed codes, and speak with the insurance providers. Things are now in his hands. There is a good chance the medical food will be covered.

For some time now, I’ve held on to the thought that the business side of our country’s health care system is shameful. I thought I had seen the worst of it ranging from the uncooperative and seemingly deceptive insurance companies to exorbitant pharmaceutical and equipment prices.

Today, my respect for our country’s health care system has reached a new low. I find it despicable that I’m excited by the slightest possibility I will be able to feed my child the nutrition she requires.

 

 


National Nurses Week: A Patient Says Thank You

It seems like every profession and cause has a day, week, or month dedicated to it. One could go crazy trying to observe all of them. Today is the beginning of National Nurses Week… a week I will make note of for the rest of my life.

If you don’t know why nurses deserved to be honored, consider yourself fortunate. There are many ways I can describe how incredible nurses are.

I could tell you about Sarah. The nurse who welcomed a frightened and saddened me to the High Risk Perinatal unit. Her demeanor made it seem like I was meeting up with an old friend rather than being admitted to the hospital. She let me know that my dog could visit as she detailed the unit rules. Her friendliness and compassion was something I desperately needed at the beginning of this long journey.

I could tell you about Ingrine. After several days in the hospital, different doctors were relaying varying information. My husband and I were confused. Was I going home or was the baby coming soon? One night, Ingrine came in my room to introduce herself at the beginning of her shift. She asked if I needed anything. I said, “I need to understand what is happening to me and my baby.”

She sat down on the edge of my bed and spent half an hour providing an explanation. She displayed diagrams as she described how my placenta was failing and my preeclampsia was increasing in severity. She told me what she had seen happen in similar cases. I asked if I was going home. She took my hand and said, “Not until you have your baby.” I needed the honesty and clarity more than I needed hope. I had to prepare for what was to come.01 Charlie's Birth

I could tell you about the OR nurse. When it was decided, at the very last moment, general anesthesia was to be used for my emergency C-section, an OR nurse asked my husband for his cell phone. Because of her quick thinking, we have mementos of Charlie’s birth. A birth my husband and I, both, missed.

nurses3_editedI could tell you about Jackie and Eileen. They were the NICU nurses who helped me survive Charlie’s first two months in the NICU. They taught me how to care for her and encouraged me to hold her. They made me laugh when I only felt like crying. They took the few pictures I have of Charlie and I together in the NICU. Their care saved my baby.

I could tell you about Marie. She was the nurse that mostly cared for Charlie during her last month in the NICU. We chatted every day like good friends. We trouble shot feeding issues. If I had a question for the doctor, she made sure it got answered… even if I wasn’t there. Marie discharged Charlie and sent us out the door.

I could tell you about, Michelle, Charlie’s home health nurse for the first year. She guided me when I knew there was an issue with Charlie’s delays. She answered my questions and directed me to the right specialist with specific concerns. She rooted for us and introduced me to special needs parenting.

In my daily life, I meet many people. Most come and go with out a name. However, it is almost two years later and I remember their names like it was yesterday.

To all nurses, thank you for everything you do. This life and others would not have been possible without you.

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