My Favorite Moments of 2013

To wrap up the year, I thought I would list my favorite moments from this year.

10) Charlie’s first swing.

9) Charlie’s first time in the rain.

8) The first time she played with Kaia.

7) The Day Charlie Discovered She Loves Rivers. Now, it is almost impossible to keep her out of bodies of water.

6) Meeting the moms in my moms group.

5) Attending ShareUnion and meeting the Share Your Story parents.

4) The first time Charlie tried to eat on her own volition. 

3) Seeing Charlie’s NICU Nurse at the NICU Reunion.

2) Charlie’s First Birthday… the actual day.

1) This week, when Charlie decided her favorite thing about the bowling alley was the air vent.

Happy New Year everyone!

Nineteen Months

Happy Nineteen Months Charlie!

As challenging and outright difficult as many of these months have been, I’ve loved all of them. I’m grateful for every day… even the imperfect ones.

I continue to hope for a time when your history of being a former micro preemie is merely a memory occasionally revisited.

Play Date With Daddy

Today, we played all afternoon. I think Charlie tried to tire us out. We are becoming adept at navigating obstacles and adapting things. These are my favorite pictures from today.

      

A Little Girl In Our Midst

Charlie doesn’t talk or walk yet. She eats a large portion of her nutritional intake from a bottle and is very small in stature. Because of these things, it is easy to make the mistake of treating her like a baby. I’ve recently realized she has moved past infancy and is now a little girl.

…and I have no idea what I am doing.

I’ve written many times about the difficulty of Charlie no longer being a baby but lacking toddler motor skills. She is interested in the same things as other kids her (actual) age. She wants to play with other kids her age. But, she doesn’t have the motor skills to keep up or communicate with them.

I am lost as to what’s the answer.

I suppose for now, I will try not to think about it too much. We will continue to do what we do best… have fun. I will let Charlie be the guide. Most importantly, I will try not to regress to treating her like an infant. She is now a toddler… and I couldn’t be any prouder.

Then And Now

I do not remember exactly when it began. Sometime around Christmas time last year, I noticed some peculiarities in Charlie’s physical development. She held her hands fisted past the point she should have, she rarely moved on her own, she was unable to hold up her head, she was not strong enough to hold a toy such as a small rattle, and she was rigid even when sleeping.

I remember the sinking feeling I had. It was then that I knew she was not going to be one of those super preemies that caught up by two.

I was frustrated that doctors were hesitant to talk about what was happening with her. I was desperate to talk about it because I knew we could help her and minimize the complications if we acted early rather than “wait and see”. I remember the anger I felt that no one from the NICU warned me that there was a possibility of anything other than her catching up by two. I was saddened as our hopes of leaving preemie life behind were dashed.

That was then and this is now.

I’m grateful for the doctors, the therapist, and the home health nurse that listened to my concerns and helped me find answers. I am glad we discussed the tough questions, devised a plan, and followed through with a course of therapy. While Charlie continues to be delayed, this year I have hope that she may “catch up” someday and find comfort in the knowledge we are trying our best to help her. She has already made incredible progress.

I don’t know how it is going to play out for Charlie but I believe that no matter what happens all will be well.

   

Charlie got a doll for Christmas.

Merry Christmas!

I hope everyone has a great holiday! My favorite part is seeing how far she has come.

These are pictures from this year:

  

These are from last year:

 

I should mention that we propped her up with that gift. She was unable to sit supported.

The To Do List

In July, I wrote a list of things that I would like to do within the next few years. Today was a quiet day around the house so I decided to revisit the list. I crossed off one thing, revised a few, and made an addition.

First, the item that was crossed off:

• I have the yearning to enjoy a delicious meal topped off by desert with Charlie. Charlie has just about conquered her oral aversion. Now, we dine together often.

Next, the items on the list that need to be revised:

• I have decided that it would be practical to combine the cross country trip idea with the desire to ride the Cardinal and Empire Builder Amtrak lines. I  still  want to wait until she is a little older so she can remember the trip.

• The condition of my spine limits my ability to get back in to running as hoped for. However, I’ve discovered a compromise…. hiking. Up hill hikes are as demanding to me as running was when I was younger. Hiking does not have the pounding running has. Also, I can time regular routes and try to improve my time. While this is technically a revision, I consider it to be another item crossed off.

• Instead of Charlie’s first baseball game, I would like to take her to several games this upcoming season. I’m eyeing Nats ticket package prices.

Finally, the addition:

• When Charlie gets a little older, I would like our family to go on a volunteer vacation. I want her to know that giving back is important (and fun). We would start small. Who knows? If it works out, it could be an annual thing for our family that grows with time.

In case you were wondering about the other items on the list, we are making headway. On January 1st, we will have visited our twentieth state park for a First Day Hike with a good friend of ours. In addition, I am squirreling away bits and pieces I need to make the special keepsake quilt for Charlie.

What is on your to do list? I’m always looking for great ideas.

The first and last time Charlie had juice that was not watered down. Sugar buzz!

Not Quite There

I really thought I was doing well. I assumed I was much further along with my healing than I am. It’s been a rough morning. I have been under the weather for a while now (you may have noticed the lack of posts). I suppose I’m weary from trying to keep up when feeling less than optimal. Whatever it is, this morning was an emotional minefield.

The bumpy morning started at one of my moms’ groups. As moms often do, they were discussing birth weights, birth stories, and all things newborn. I could relate to none of it. I was a stranger in a strange land. I hate that feeling.

Many of the babies accompanied their mothers while the older kids were gathered in groups elsewhere. I know better than to compare. However, I couldn’t help but notice how big the babies were, how easily they could move, how they held up their heads, and held on to toys. Every one of those things Charlie had to fight for.

My thoughts then trailed to Charlie. Recently, I have started leaving her in the toddler group. This is as poor of a fit as leaving her in the infant group.  However, she is more engaged with the toddlers than the infants. I feel bad she is carried while the others walk. I wish she could sit in a chair rather than the floor. She is in that odd spot of no longer being a baby but her physical skill set is not equitable to a toddler.

Afterwards, Charlie and I went Christmas shopping for our dog and cat. While at the store some lady came up to Charlie and said, “Oh! Is it your first Christmas?” Exhausted, I cut to the point and said, “No, she is eighteen months.” I think the woman thought I was being sarcastic. She gave me a stern look and walked off.

Finally, with it being the Christmas season, people throw the word miracle around more than usual. It bothers me when Charlie is referred to as a “miracle baby”. Yes, it is amazing she is alive. But please, don’t call her a miracle. Mostly, because it makes me feel guilty.  Where was the miracle the less fortunate (and more devout) families prayed for when they lost their babies? Why were we chosen to receive a miracle when we are certainly less than pious?

I refuse to believe god has anything to do with it. I feel better calling it luck. With the helping hand of medical science, we got lucky. In much of the same way that we were unlucky to have found ourselves in that position to begin with. To call it luck, does not entirely rid me of the guilt. But, it does ease it a little.

So yes, it was a rough morning. It was another reality check that I am a bit away from leaving this whole preemie thing behind me. Or maybe, I just need a nap.

Flawed Parenting

Today, Charlie had an appointment with her ophthalmologist. One thing led to another and the outing turned into quite the adventure rather than the mundane experience I was expecting.

After a forty five minute drive, we arrived at the appointment fifteen minutes early. Charlie was restless and wanted to play in the toy area. I looked over the toy area and noticed a kid playing in the toy area had a horrible cough. I decided not to risk Charlie’s fragile lungs and chose a seat very far away from the other people present.

Once seated, I reached into my bag and pulled out plastic links. Charlie was still strapped in her stroller as we played with the links. I said, “Together! Apart! Together!” She laughed each time and tried to imitate. The little boy with a cough heard Charlie’s laughter and sprinted across the room towards Charlie.

Like a soccer goalie, I jumped up and blocked him with my body position a few feet in front of Charlie’s stroller. I said, “No! She’s very little. She can not handle germs.” It was the nicest way I could relay my thoughts of “Don’t bring that cough over here!”

The boy’s mom gave me a dirty look as she called him back to her. She looked even more annoyed at me when he ignored her and she had to physically move him.

Indifferent to the mother’s icy glares, I sank back into my seat. The calm lasted precisely thirty seconds before Charlie burst into tears. She was genuinely upset as I tried to figure out what the heck was happening. Apparently, she had bitten her lip with the few teeth she cut last night and was bleeding from her mouth.

I picked her up, rocked her, sang to her, and stopped the bleeding. We were called back to an exam room as she regained her composure. I was glad to leave the waiting room.

Once seated in the exam room, her ophthalmologist asked how she was doing. (For those of you who don’t know, there is a minor concern with Charlie’s vision. She occasionally crosses her eyes due to one eye being significantly more far sighted than the other eye.)

I explained that Charlie will not leave her glasses on. She screams, she cries, and she throws the glasses. After a month of trying, we gave up. Her eyes cross occasionally and it has not increased despite our failure at keeping the glasses on her. I felt like a terrible parent after I said all that. My head hung in shame.

The truth is, we have our hands full with feeding difficulties, speech, PT, OT, AFOs, and trying to keep her glasses on. With our full plate, it is inevitable we are going to fail at something. Unfortunately, it was the glasses.

Kindly, the ophthalmologist didn’t criticize or say a negative word. He didn’t need to. I already felt horrible. Instead, the doctor checked her glasses and made sure the prescription was correct. He placed the glasses on her and she began to cry. Immediately, she tried to pull the glasses off.

At the end of the appointment, we agreed that I will make sure she wears her glasses if her eyes begin to cross more than occasionally. We will return to see her ophthalmologist in four months for a recheck.

It was a short outing today. Nevertheless, I am exhausted.

Ordinary Time

If you are a regular reader, you may have noticed the lack of posts recently. It is due to a couple of reasons.

First, I’ve been somewhat ill for the past week and a half. Because of this, I am taking it easy. Charlie’s dad has been attending her therapy appointments with her. I have been forgoing scheduled events when I can and mostly reading books at home. I am sorry to say the slower schedule has reduced my blogging inspiration significantly.

Second, not much has happened in our household other than our preparations for a small Christmas. There is a lull in our usually hectic world.

I realized as a kid that the church calendar contained “Ordinary Time”. After seeing this, I remember thinking “How boring!” Especially since, feast days and holidays often got us out of class to attend mass. But, I digress.

Ordinary time is a good description of where we are. There are currently no highs of unexpected or hoped for gains and no lows of frustrations or sadness. No, it is not boring.  It is necessary for my sanity and greatly needed so I can deal with my health concerns.

As Christmas approaches, here is to hoping for a quiet holiday season. We shall see if it actually works out that way.

My back yard has become a winter wonderland recently.

Stocking Stuffer Ideas That Won’t Break The Bank

The holidays are speeding towards us and we are on a tight budget. Like many families with kids that have special needs, we have added financial demands such as orthotics, endless co-pays, therapies, and special formulas. I want Charlie to have a great Christmas but need to budget when the opportunity presents itself.

By scouring the web, I’ve discovered that I can save money on stocking stuffers while giving Charlie things she will enjoy playing with. These are the ideas that I’m using for Charlie’s stocking stuffers.

NOTE: Please keep in mind that item size is an important consideration in order to prevent choking hazards. Always supervise children appropriately.

1) Pipe Cleaners These are great because they serve many purposes. The odd texture can be used in sensory play. To work on fine motor skills, she can bend the pipe cleaners to create shapes or put them in a container.

2) Giant Buttons Due to Charlie’s petite size, her hands are often too small for “typical” toys. She enjoys playing with things that fit her tiny hands. She can place the buttons in containers, dump them out, sort them, or whatever ideas she comes up with.

3) Cups I plan on browsing the shelves of the local dollar store for cheap plastic cups. Charlie likes to bang cups together, fill and dump them, nest them, stack them, and use them in water play. It is an added bonus if I can find cups with removable lids. Cut holes in the lids create more of a challenge for Charlie when she puts things in the cups. 

4) Craft Pom Poms This is another idea that is great for sensory play. Again, the possibilities for play are endless.

5) Squeaky Animals and Ninja Ducks Charlie loves her small rubber squeaky toys and ninja ducks. She will be receiving more of these.

6) Bag of Feathers These provide more sensory play and exploration opportunities.

7) Magnetic Alphabet Letters Charlie plays with the refrigerator magnets almost obsessively. This is an extension of that idea. In addition, Charlie’s dad has a magnetic write on/wipe off board in his office that will compliment this gift nicely.

8) Shakers Charlie loves the maracas at music therapy. This idea was drawn from that.

9) Pieces of Textured Fabric I’ve raided the scraps bin at the local fabric store. I’ve cut the scraps into equal size squares. I’m sewing together the corduroy, felt, taffeta, calico, velvet, fleece, etc to make a “book” of fabrics. Despite her tactile defensiveness, she is curious about different textures. I haven’t decided whether or not I’m going to spay the pieces to add scent.

10) Giant Beads Like most things on this list, these have many uses. She can work on fine motor skills by threading pipe cleaner through the beads. She can sort, learn to count (eventually), or make a shaker with the beads.

Mixed Signals: My Experience Reading Medical Professionals

Whether a relationship is professional, personal, or something a little more unusual such as a doctor – patient relationship, communication is key. Many people make the mistake of believing that words are enough or all that matters. However, sometimes what is not said can provide more information than the words spoken.

For example, I was surprised to see the look of fear on a doctor’s face. The first time I saw it on a doctor’s face occurred during my pregnancy with Charlie. I had the miserable experience of having a cold while I was pregnant. A few days into the cold, I woke up and felt more tightness in my chest than usual. The feeling steadily increased throughout the day. I sent a text to my husband that read, “I must be really sick. Can you take me to the doctor? I’m having a hard time breathing.” By the time he hurried home, I found it difficult to talk.

There was no way we could have made it to the nearest hospital through northern Virginia rush hour traffic. We opted to go to the urgent care center a block away. We needed a doctor quickly and had no idea what was wrong with me. After arriving at the urgent care center, I was taken back immediately. The doctor hurried in and started treatment. I remember seeing the look on his face. His wide eyes and panicked expression conveyed his fear. He called out to the nurse, “Call 911!”

The ambulance came quickly and had everything necessary on board. I was treated on the way to the hospital. It was the first time I had a life threatening asthma attack. Up until then, my asthma had been more of a seasonal allergy nuisance.

Next, I received ambiguous answers on a few occasions. This way of saying something without actually saying anything is the most frustrating to me. The morning Charlie was delivered, the nurse told me to call my husband. I asked the nurse, “Are we having the baby today?” while my husband was on the phone. She answered, “If it were me, I would want my husband here.” I wanted to yell, “What the hell does that mean?”

As it turns out, that morning we were dealing with reversed end diastolic flow (more was coming out of Charlie than was going in) in the umbilical artery. The situation has a respectable perinatal mortality percentage.  I am not sure what I would have wanted to hear but being told a lot of nothing was not helpful.

Now, I grow suspicious and wonder what I’m not being told whenever a health professional avoids answering a question. The words “I don’t know” are perfectly acceptable for me to hear. I need it to be followed by who does know or how it will be figured out. I am more at ease with information… even unpleasant information. Bad outcomes are easier for me to deal with if I know it is a possibility. It is better than being blind sided with bad news.

Similarly, I find the look of quiet concern to be distressing. I saw this look many times when I first knew Charlie was significantly delayed. She had trouble moving, was rigid, and missed every motor milestone. Each time she had an appointment with a medical professional I voiced my concerns and asked questions. I had no idea what was wrong but I knew something was not right.

Each time, a doctor wore the same expression after examining her. Invariably, the expression was a mix of thought and concern with a slight narrowing of the eyes. I knew they were seeing what I was seeing. Yet, they did not say anything helpful to address it. Repeatedly seeing this expression is one reason why I did not stop asking questions until I found a doctor who could talk about it and guide me in how to help my baby.

Additionally, nervous habits can be equally as revealing. When I was hospitalized on the high risk perinatal floor, I noticed a pattern in my OB/GYN’s behavior. If there was no news, he would flutter around my room while fidgeting with his coffee and occasionally glance out the window as he spoke. If there was bad news, he pulled a chair up to my bedside and sat down to deliver it. I loathed seeing that chair approach my bedside. However, I was able to gauge the seriousness of my situation moment by moment via his nervous habits.

Finally, I’ve learned to communicate through indirect phrasing. For example, Charlie had an amazing nurse she regularly saw during her first year. As a first time mom, I had many questions. When I had questions concerning Charlie’s delays, issues, or developmental concerns, the nurse would answer with the phrase “If it were my child, I would…”. From one mother to another, it was code for “This is what you should do…”

Her responses were precious pieces of guidance during a time when so few people were willing to provide definitive answers. While I respect the option of self determination, sometimes I really just want to be told what I should do to help my child. Despite the wealth of health information available on the web, I need the expertise of health professionals to guide me and educate me.

To all the health professionals, I want you to know that sometimes what you don’t say resonates louder than what is said. To all the parents, ask direct questions if you feel you are receiving mixed signals. Information is power.

Snow Baby!

Charlie played in the snow for the first time yesterday!

Christmas Imperfection

Forget Christmas lists, elf on the shelf, or even pictures on Santa’s lap. Perfect Christmas? I don’t even aim for it. We operate with lowered expectations. Don’t get me wrong, I enjoy the pageantry, the lights, and excitement of the season. However, we aim for holiday survival and hope to have a few fun moments.

For example, I have no idea what the “must have” toys are this season. I was not one of those moms breaking down doors on Black Friday. To build Charlie’s Christmas list, I combed through special needs catalogs and asked Charlie’s therapists for ideas. I’m a boring mom. Charlie will be getting toys that help her develop the skills she is struggling with. She seems to enjoy the toys as much as the “must haves”.

Admittedly, I look forward to Charlie’s first picture with Santa. This year is not her year. I determined this by feeling out the situation when Santa first started appearing at the mall. We stood back and watched while other kids got their pictures taken with Santa. Charlie watched curiously with narrowed eyes. When Santa walked by a few moments later, she burst into tears and grabbed on to me. That moment was an indicator that this is not the year for Santa pictures.

Additionally, I would like to have a Christmas tree. However, it is another impracticality in our house. I don’t want to worry about the cat eating needles, Charlie (or the cat) climbing it, broken ornaments, or the dog knocking it over. Instead, Charlie and I made a wreath for the front door. The adventure and story involved made the wreath just as sweet as the tree.

I’m not against Christmas or holidays. I merely lack the desire for Christmas perfection (or any perfection). Maybe, it is because I’m tired from running to appointments and therapy. Or possibly, the heartbreak of Charlie’s early birth has left me feeling jaded and cynical about the idea of a perfect anything. Most likely, it is because I know having Charlie with us for Christmas has already made it perfect and the rest is trivial details.

Charlie swinging after yesterday’s wreath making workshop at Powhatan State Park.

On The Charts

A short post tonight because I’m under the weather. Charlie had an excellent 18 month check up.

She has finally made it on to the growth charts.  Her measurements are barely under the fifth percentile for weight, at the fifth percentile for height, and the fiftieth percentile for head circumference. Her motor skills and speech skills continue to be delayed but she has made impressive progress.

As usual, I’m one proud mama!

Words For Micropreemie Parents

I have noticed several people found my blog by using search terms such as “future for micropreemies”, “survival chances of micropreemies”, or “micropreemie aftermath”.  What follows is directed to those readers:

I know you have come across this blog during your desperate search for answers. I was once where you are. Late at night, I pounded away at the keyboard in an internet hunt for answers from my hospital bed.

I’m sorry to admit, I do not have any. Or rather, I do not have the type of answers you are seeking. What I can tell you is what I’ve learned along the way so far.

Being thrust into the micropreemie realm is difficult. You do not have to be brave, strong, stoic, or optimistic. It is practically impossible to be so when your heart is breaking. Don’t waste energy trying to be. Cry if you need to, yell if you feel like it, or pout silently if it is more your style. It is OK. There is no “right” way to be a micropreemie parent.

Survival and outcomes…  It’s an odds game that makes little sense to me. Even when provided percentages, data, and statistics, it feels like there is no rhyme or reason. I saw babies struggle who were expected to do well. I’ve read about the sickest and tiniest that graduate from the NICU with little to no long term issues. I’ve met parents who experience just about everything in between with their infants.

Everyone’s journey is different. I cannot predict how your little one will do. I can tell you to hope. There may be moments when hope is all you have.

Throw away the baby books. You are in a different world now. I suggest you start by reading one of many available books on preemies. There is much to learn and crucial decisions will need to be made. The doctors and nurses can guide you.

Listen to your parenting instincts. You will be surprised at how correct they are most of the time. Don’t let anyone fill you with doubt about your decisions… especially yourself.

Leaving the NICU is merely the end of the beginning. It is not over once you walk out those doors.

It will seem like everyone in your world knows of a micropreemie that catches up by two (if not sooner) and has no lingering issues. While these anecdotes are well intended, they can be despairing. Know these babies are the exception and not the rule. However, catching up is possible… it just may take longer than age two.

At some point, you may find or someone may have you read Welcome To Holland. While I found having a micropreemie is similar, my experience has been more like a layover in Holland. Right now, my former micropreemie continues to have special needs but I hope we will one day catch a flight to Italy.

I’m sorry that I can’t tell you things are going to be great or your baby is going to be fine. That is not the world our little ones were born into. Instead, every day in the NICU is a perilous battle for survival. They will have to struggle and fight for things like breathing, eating, and growth that others take for granted.

One thing I do know is that, despite the small size, micropreemies are mighty. These babies are incredible.

More Than Another Day At The Park

There is a local park that Charlie and I frequent. It has an accessible playground for her and a very nice fitness course for me. The park is really very nice.

When Charlie and I go to the park, she watches as the other kids play. I try to show her what she can do and challenge her to try new things. However, her eyes are fixed on the other kids.

She badly wants to play with them but the inability to walk prevents her. Walking is the social dividing line between baby and toddler. Usually, she settles in a spot where she can see the other kids play and also keep me close by. Quite often, I have to prevent the other kids from running over her while she tries to play. At which point, other parents call out “Watch out for that baby!”

Honestly, I feel sorry for her. Not quite a toddler and no longer a baby.

Today was different.

Another kid took a moment to play with her. It made Charlie’s day. She was so excited she forgot to hold on and stood independently for a moment.

Later, Charlie wanted to investigate another kid that was feeding ducks. Prior to today, the closest she has come to seeing a live duck is her ninja duck toys (pictured on the left).

The ninja ducks are among her favorite toys. “Ducks” is one of two words that she will use consistently. (The other word is “daddy”.)

After watching the boy feeding the ducks, Charlie wanted to move closer. We stood in the midst of the ducks while she watched them intently. Her face lit up as she made the connection and said, “Ducks!”

That’s right, Charlie, ducks.