Tag Archives: nicu

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.

 

 


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.

 

 


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.

 

 


The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

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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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10 Things I Am Thankful For

Today’s Blogtober assignment is to compile a list of ten things I am thankful for. Despite all of my rants and complaints, I do have many things for which I am grateful. I think I will start my list with the most obvious but the rest is in no particular order.

I am thankful for: 

1) … Charlie and that she survived.

2) … growing older. It’s a privilege denied to many.

3) …the people in life who carry out random acts of kindness. The ones who take a moment from their lives to go out of their way for other people. Like the gentleman who offered his seat to me on the Metro, the people who hold doors open, the neighbors who make meals for practical strangers, and the countless others who contribute their time, talent, or money. Whether the act is big or small, every act is significant.

4) … for the outdoors. It has been a substantial part of my healing process. No matter how overwhelmed, sick, defeated, or hurt I may feel, being outdoors is a panacea.

5) … my friends and husband. I am blessed with extraordinary friends. I am fortunate to receive their love, understanding, kindness, support, encouragement, and time.

6) …writers, authors, bloggers, and anyone brave enough to write down their thoughts and ideas for others to read. Almost every night, I wind down before bed with a book. I can’t imagine the world without the written word.

7) …my Share Your Story people. I would be walking this post NICU journey alone without them.

8) …music. Through singing, playing, listening, and dancing, it has the power to commiserate, inspire, celebrate, immortalize a moment, transform, and heal.

9) …my animals. I am not sure who rescued whom.

10) …the world. There is never a shortage of places to visit, languages to learn, music to hear, new ideas to discover, people to meet, new foods to eat, and experiences to enjoy. I am incredibly lucky to be an infinitesimal and minute quark in the midst of it all.

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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?


Blogtober Challenge Day 5: Favorite Fall Recipe

Today’s Blogtober Challenge almost stumped me. I suppose I could discuss the fine art of making green bean casserole. But, French’s Onion stole my thunder by printing the recipe on the back of their cans.

OK, I confess. I am not much of a cook. It’s not that I hate cooking or am particularly bad at it. It’s just that other than passing phases, I haven’t had much interest in learning to cook.

More often than not, we are a sandwich, salad, fruit, and veggie kind of family. We mix things up with nuts, seeds, and grains. We also grill out quite a bit.

Now that you are aware of my cooking ability (or rather, lack of), you will understand the ease of the upcoming recipe.

Lately, I have been all about soft foods as an attempt to get Charlie to eat solids. Some of her favorites are bananas, macaroni, rice, beans, hummus, avocados, mashed potatoes, tomatoes, grapes, kiwi, and toast.

Every once in a while I will cook up a quiche which she loves.

Before you are wowed, you should know that I use a recipe that is quick and easy. I can manage it with my limited cooking skills, small selection of available cooking utensils, and with Charlie clinging to one leg.

With out further delay, here is my response to the DC Ladies Day 5 Blogtober Challenge:

Quick and Easy Quiche

Ingredients:

  • Frozen 9 inch pie shell
  • 3/4 Cup of Milk
  • 5 Large Eggs
  • Add about two cups (total) of anything you want to cook up in the quiche such as chopped vegetables, precooked bacon, deli meats, cheese, precooked meats, and herbs.

Directions:

  1. Preheat oven to 350 degrees Fahrenheit.
  2. In a bowl: beat eggs, beat in milk, and then mix in other selected ingredients.
  3. Pour contents of bowl into the frozen pie crust.
  4. Bake quiche on a cookie sheet on the middle oven rack for 45-50 minutes. The top should be brown and a knife inserted into the middle should come out clean.
  5. Once the eggs are cooked through out, remove from oven, cool to a safe temperature to consume, and enjoy.
Charlie eats her formula like a good eater.

Charlie eats her formula like a good eater.

 


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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Arizona

Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.

So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.

Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.

One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.

The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.

Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.

Back to ShareUnion:

In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.

Everyone gets something different out of it, this is what I get:

Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.

Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.

Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.

The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.

The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).

If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.

 


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.

 

 

 

 

 

 


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