Three

I 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.

It’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.

Almost Three Years In

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.

As 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.

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 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. Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike.

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).

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

Count Down To Christmas!

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.

 

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.

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.

 

 

 

Premature Babies: What You Don’t See

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

This is Charlie. She was born 10 hours into her 26th week of gestation at 1 lbs 11 oz (790g). #WorldPrematurityDay pic.twitter.com/2r0GE5tiQR

— Rebecca Wood (@woodra) November 14, 2014

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.

 

 

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.

 

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.

 

 

Blogtober Day Ten: Best Advice

Today’s Blogtober Challenge is to share the best advice I have received. I woke up this morning and planned to revisit the story of the three legged dog. During my morning routine, I thought about how I would write it up.

However, my back bothered me at breakfast. It was a warning. I needed to walk before things got worse. But, my back hurt enough that my usual hike was out of the question.

If it won’t be a challenge, then why bother walking? Maybe, I could not walk today, catch up on things at home, and walk tomorrow.

I had almost talked myself out of walking.

But, I learned my lesson in the past. If I don’t walk, things will get worse. It certainly won’t be any easier to walk tomorrow or the day after it.

I decided I could do an easier walk. It didn’t need to be strenuous or impressive. I simply needed to move. I could start where I was.

That, right there, was the best piece of advice that I have ever received. When taking something on, start where you are. Unfortunately, I don’t remember who shared it with me.

Basically, it means that everyone starts something somewhere. When a task, an idea, or a project seems to be overwhelming, pick a small starting point and do it. The next day, build on that and do a tiny bit more. Even though it seems like baby steps, progress moves quickly. It doesn’t take long for where one is and where one desires to be to become congruent.

My walking buddy on today’s walk.

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.

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.

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.

The 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.

 

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.

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.

 

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.

After 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.

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.

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.

Flight

Charlie has her Medicaid Waiver screening tomorrow. I’ve worried about it for about a month. If Charlie is found not eligible for a Medicaid Wavier, then we lose Medicaid as Charlie’s secondary insurance.  With all of her needs (PT, OT, ST, formula, medication, etc), I don’t know how we’ll manage without it.

Without Medicaid, the services available to her will become limited and she will have to discontinue some of her therapy. We will go even deeper into medical debt because the bills will pile up much faster.

For the last month, I’ve gathered documentation and researched the waiver process. I’ve had nightmares the past two nights about losing Medicaid as her secondary insurance.

This morning, I woke up and looked over her paper work. Then, I realized that I am as prepared as I will ever be. I took a deep breath and decided to try and stop worrying about it. Tomorrow, I have a fight. Today, rather than stress over it, I chose flight.

Charlie and I went to Leesylvania State Park. She played in the water (her sensory issues are improving remarkably), climbed on the playground, and walked on a riverside trail (her legs are getting so strong). It was relaxing and I could forget about the medicaid waiver issue for the afternoon.

Wish us luck tomorrow. We need all the positive thoughts we can get.

 

 

The Great Escape

Back in January, through something short of a miracle, we won a contest. The prize was a week long cabin stay at any Virginia State Park of our choice. We ended up choosing Natural Tunnel State Park and celebrated the anniversary of Charlie’s NICU discharge there last week. It was the vacation I hoped for and desired. So much so, that I’m bitter about being back.

My husband and I decided to disconnect from our lives. Other than using the visitor center’s wifi to upload pics and respond to a few tweets, we were out of contact. It was a marvelous escape.

I countered phone calls, emails, and text messages from doctor’s offices, therapists, and the like (whom can be surprisingly persistent over trivial matters) with the simple message “On vacation, will return on Saturday.” I did not have to answer questions from people such as, “Is she eating yet?” or “Isn’t she really small for two?” Nor, did I have to politely listen to unsolicited advice.

It was exceptionally quiet. I love quiet.

The area was extraordinarily beautiful and rich in history. The first few days we explored every inch of the park. Charlie went swimming, my husband went fishing, and I went hiking with our dog. We played on the playgrounds, rode the ski lift to the Natural Tunnel, and climbed up to Lover’s Leap. Charlie found a trail marker with a “2” on it and she stood over it saying, “Two, two, two, two, two…” We had to pull her away to finish the hike.

Later, we ventured over to nearby Wilderness Road State Park. We poked around the historic area with the fort and talked to the period actors. Charlie liked the blacksmith. She exclaimed “Whoa!” when the bellows blew sparks and said, “Ding!” each time he hammered. Wilderness Road had a really nice playground but Charlie preferred playing in the natural play area.

Towards the end of the week, we visited Southwest Virginia Museum State Park which was also near by. (For those who are counting, that makes 28 out of 36.) The museum was filled with artifacts from the area. Charlie liked the interactive exhibits. She repeatedly played the same track about spiritual music. Fortunately, we were the only ones touring the mansion at the time.

After the museum, we went to Bark Camp Lake. The lake was lovely. However, we did not get to stay long because Charlie had an issue. She would not let go of my leg and screamed, “Mommy, mommy, mommy!” We assumed she was just tired and headed back to the cabin for a nap. But, we realized later that her stomach was bothering her.

We wrapped up our week by riding the ski lift and revisiting the Natural Tunnel. We retraced our favorite sights and activities.

There were moments that don’t fit into this narrative such as rocking on the back porch while watching a quick down pour. Or, cooking out with friends (during the couple of nights they joined us) until late in the evening. And, gazing at the most stars I had ever seen each clear night.

After a week like that, I am fighting back tears now that we are home. It’s not so much being home that is upsetting because we live in another beautiful area of the state.

Instead, it’s the thought of returning to our normal. Back to arguing with insurance, back to navigating a confusing and overwhelmed medicaid waiver system, back to answering people’s questions about Charlie, back to patiently nodding at unsolicited advice, back to therapists making unrealistic home therapy suggestions, and back to sitting in countless doctors’ offices.

I live a strange polarity. I detest many of the things in my daily life. However, I wake up each morning so grateful for the life I have.

When Words Fail Her

I can only understand about 25% of what Charlie says. That is, if she says anything at all.

A lot of the time she grunts or “talks” with her mouth closed. Other times, it’s garbled gibberish. With context clues and effort, I can understand about 25% of what she says.

Tonight, my husband realized that all of those sounds have meaning and we can’t understand most of them.

Charlie was climbing on him and playing with a Little People’s tricycle. She rolled it up his arm, put it on his head, and exclaimed some garbled words. He dismissed them and continued flipping through the channels.

She repeated her gibberish over and over. He realized she was trying to tell him something. After asking her to repeat it a few more times, he deciphered she was actually saying, “It’s a hat!”

He was so impressed with her. But, at the same time, so saddened. He realized her thoughts and receptive language is fine. Her body (more so her mouth) will not do what she wants it to.

Although, I already knew this. It makes me sad as well when I think about it. I can’t imagine the level of frustration, isolation, and whatever else she may feel. I wish her fine motor skills were decent enough for sign language.

However, I try to remain positive and remind myself that she seems happy. The whole ordeal doesn’t really appear to bother her. She is one of the most joyful and enthusiastic people I know of.

Before she went to bed tonight, she said, “nigh” (good night) for the first time. Then, when I told her I loved her, she leaned in and kissed me.

I guess maybe she does communicate in her own way.

We’ve been visiting Chuck E Cheese’s a lot lately. It’s an easy and fun way to work on most of her therapy goals.