Anniversary Season

Yesterday, Charlie turned eleven months. It was definitely a cause for celebration. In our home, every little bit of progress is celebrated (we are going to be embarrassing parents). On the other hand, it marks the beginning of what another micropreemie mom called “anniversary season”.

These are the anniversaries that are unique to being a preemie mom. Each one is seared into my memory: May 17th my preeclampsia was discovered, May 19th I was hospitalized and put on bed rest, May 29th I missed Charlie’s birth via emergency c section due to general anesthesia, May 31 I was well enough to meet Charlie (or rather peer at her through the isolette in between hysterical sobs), and August 24  Charlie was discharged from the NICU (on her 88th day). Life prior to  these dates seems so distant.

I remember my last days carrying Charlie. I did not get to sleep much because I was always being monitored, given medication, or stuck with a needle. I had read that she was able to hear. I played every single one of my favorite pieces of music for her. I talked to her. I had read that babies with a birth weight over 1000 grams have significantly better outcomes. I voraciously ate and hoped that some of the nourishment would make it to her.

She was born via emergency c-section. She weighed 790 grams. My husband told me that she screamed the entire way to the NICU.

I remember rolling into the NICU for the first time. It seemed so surreal. My husband wheeled me through a maze of babies. All the monitors beeping, the strange lights, and rows of babies encased in isolettes gave it the ambiance of a science fiction novel. It felt like a nightmare that I could not escape. The NICU was an intimidating and tragic place. I remember seeing Charlie sleeping peacefully under the glow stick blue (as Neil and I called it) UV light. It was the first moment of many hours that I would spend watching her sleep.

I remember walking out of the NICU for the last time. I remember feeling a combination of wanting to be sick, numbness, and not being able to breathe that entire morning. I remember the down pour of tears that rolled down my face as I passed through those heavy locked doors with my baby in hand. It had to be a strange sight. A grown woman bawling as she exited the hospital with a new born baby. I remember thinking, “It’s finally over”.

I was later to find out that it was only the end of the beginning.

I remember each of these dates, moment by moment, like they were yesterday. I am treading lightly into my first “anniversary season”. I am all too aware of how those emotions sneak up on me.

Not Quite Holland

Somewhere along the preemie parenting journey, parents encounter the essay Welcome to Holland ( http://www.our-kids.org/Archives/Holland.html ) by Emily Perl Kingsley. In the beginning, I felt that it was a relatively accurate description of our preemie experience. Now that we have been at it for almost a year, I find that it only partially describes things.

For me, the journey started off as the essay describes it… as a planned visit to Italy. However, it differs almost immediately. When the plane landed, we did not find ourselves in Holland. We found ourselves in some uncharted land in between Holland and Italy.

As we got off the plane (more like forced off the plane), we were told that we must walk through this mysterious land. Few can tell us much or anything about this land. We have to wait and see what develops during our journey. The outcome is unknown. There are as many possibilities as the number of people who walk it.

There are those who are on a similar journey. Sometimes, they walk along with us for a while. We exchange the helpful bits and pieces that we were able to figure out. Eventually, our pace differs and we must part ways.

The terrain of this land can, at times, feel unforgiving. I, frequently, grow tired and start to drag. I get frustrated and occasionally, sad. If we are lucky, we find ourselves enjoying a coast down a smooth hill for a stint. During the trek we regularly encounter amazing, awe inspiring, and wonderful people and sights.

Eventually, all of us on this journey end up somewhere. I hope one day to make it to Italy. If we end up in Holland, that will be all right too. I have heard from others that Holland is quite lovely.

I have to keep in mind that it is not the destination that is important. While it may be difficult (and sometimes seem impossible), I try to enjoy the journey. I know that I am fortunate to have been given the chance to embark on it.

Our experience has differed quite a bit from the essay. While we are not in Italy where we planned on being with most people, we are not quite in Holland either.

Happy eleven months Charlie!

Charlie found her voice tonight

A beautiful day to practice sitting in the stroller with out the infant seat.

Playing peek a boo while walking by the river at Shenandoah River State Park.

Practicing sitting by the river at Shenandoah River State Park.

Saying It Out Loud

When Charlie was first born, it was impossible for me to talk about her birth. It was one of the toughest things that ever happened to me. It did not end with the birth.

Her three month NICU stay was just as arduous, scary, and confusing. Through a portion of it, I was in shock. I found it difficult if not impossible to make sense of it. I really hated having to talk about it and explain things to people needlessly.

When I was discharged from the hospital, we had to stop at the pharmacy on the way home to pick up my meds and supplies. I prayed that the pharmacist would not assemble the clues to figure out that we had a baby. Especially, when my baby was perilously clinging to life.

I resented all those who assumed acquaintanceship privileged them to ring side seats to my tragedy. I avoided these people as much as possible. Normally, I would have had the strength to tell them to butt out or it is none of their business. However, at that time I lacked backbone. I took the easiest escape and feigned the cheerful optimism that was expected. Although, my heart was breaking and I felt like I was dying inside. What little strength I had was reserved for my baby.

It is difficult to put into words what our preemie birth experience was like. Soon, I’m going to have to find the words to tell our story. We have been asked to be a March of Dimes ambassador family for next year.

Through telling our story, I hope to educate and help others. Ultimately, I hope to find some closure for myself.

The March For Babies was so much fun!

A Little Bit of Ordinary

My life often feels like I’m perpetually performing in a one person musical. To give myself a break and for Charlie to be around other babies, I decided to check out a program at the local library geared towards babies. The description sounded perfect. There was going to be a lot of sensory stimulation, singing, and hand games. My concerns were that it was going to be too much for my sensory defensive baby or that it would be beyond Charlie’s abilities. I decided to give it try and check it out. We could always leave if Charlie melted down.

We arrived a few minutes before the class began. In past endeavors, I’ve noticed Charlie does better if I give her time to warm up to a place before taking her out of her stroller. I wanted this to go well and employed the tactic. After a few minutes of becoming acclimated, she held her arms out to signal to me that she was ready to get out of her stroller. I took a deep breath and thought to myself “Here goes nothing” as I lifted her out of the stroller.

I chose a spot on the floor and we sat as things began. I propped Charlie up in my lap like a make shift infant seat. The session opened with a hand play song. I tried to help Charlie with the motions but she was busy scanning the room. She seemed perplexed but she was not upset. Charlie decided she was more comfortable laying down. She was enchanted by the group leader as the songs were sung and stories told. She was laying on her side and watching intently.

I looked around the room. Charlie was paying more attention than many more advanced babies. I was excited. However, my excitement was short lived. They were handing out instruments.

Charlie is easily upset by sudden loud noises (for example, we have to run the vacuum when she’s out of the house). The instructor held the box in front of Charlie. With some awkwardness, Charlie chose a hand bell. The first song started.

Charlie laid there with her bell while the others started “playing” their instruments. She looked around. Her face was expressionless. She looked at me. I smiled at her reassuringly while mapping out our escape route in the chance I had to scoop her up. Charlie let out an excited squeal, grinned, and started shaking her bell in beat with the others. I had to take deep breaths to keep tears from streaming down my face (there is a lot of crying in micropreemie mom life).

The rest of the session continued on the same happy note. Charlie rolled around in the floor with different textured scarves. She tried clapping her hands (she needs some practice). She was extraordinary. Today was remarkable, it was our first little bit of ordinary.

Charlie at The State Arboretum of Virginia

Fortitude

Forgive me if I am less than eloquent tonight for I am overwhelmed. My thoughts go out to those affected by the explosions in Boston. I hope they find the strength to move forward one day.

That is what my blog has been about. My husband, baby, and I learning to move ahead. After having a micropreemie, we will never be the same. However, we can eventually move beyond it.

If you are among those that believe I am strong, you must know it is only because my friends make me that way. It was a joint effort. It started with those who visited me in the hospital when my preeclampsia was discovered. It continued after Charlie’s extremely premature birth and into her extended NICU stay. I will not forget those who visited, said just the right things, sent thoughtful gifts, and listened.

Even now, it continues. I intentionally set the bar low for our March of Babies team goal. I did not expect anyone to pay attention that we were walking or grasp what it meant to me. I expected to go it alone while dragging my husband along. I did not think we would make our goal. Once again, my friends stepped up and beyond… Crawling out of the woodwork of their busy lives to either walk with us or contribute. I am overcome each time someone sponsors us or joins us to walk. Tonight, we surpassed 200% of our team goal.

I am fortunate to be loved and understood by these amazing people. I know of no words to express the extent of my gratitude. I pray that those affected by the events in Boston (or those enduring tragedy anywhere) have people to aid them in forging ahead.

Yesterday, at the neighborhood playground.

My little scientist discovers water.

Faster, Smarter, Stronger

I watched a documentary last night before I fell asleep. The people in it were about to attempt a challenging feat. Several of the group were going to perish during the attempt. A speaker addressing the group was making that point clear. However, none of the people backed down from the challenge. I can only guess that no one suspected it would be them. I, too, once thought I was smarter, faster, and stronger than those that meet with misfortune.

And then I encountered fate…

While thinking about my rendezvous with fate, I am reminded of all the Latin I translated in high school. The Iliad, The Odyssey, and Jason and the Golden Fleece. Many times, I have heard talk about fate. Numerous times, I have read about fate. It is clear to me that, until very recently, I did not comprehend it. Fate is that force that intervenes and derails expected outcomes.

It does not matter who is faster, stronger, or smarter. Anything can happen when fate is added to the mix. Sometimes, it is what we call luck. While other times, it is called a coincidence. It is those little things that often go unnoticed at first. Frequently, they are only recognized in hindsight. These little things occur during our journeys and redirect the course towards fortune or disaster.

Before all this, maybe I was a little pompous and somewhat arrogant. I used to think that bad things will not happen to me if I follow all the rules to avoid them. During my pregnancy, I ate right, took prenatal vitamins and folic acid, I avoided x rays and second hand smoke, and I received excellent prenatal care. According to what I perceived as the rules, I expected to have an ordinary pregnancy. Even when the doctor told us that he suspected preeclampsia, my husband and I did not believe it. We had done everything right. Someone else was going to have preeclampsia… It could not possibly happen to us.

We were naive.

Almost a year later, I feel as if my understanding of vocabulary has changed. The word “fortune” no longer means monetary wealth. Nor, is “beautiful” limited to describing aesthetics. Fate, to me, is not predetermination. It is a roll of the dice that interjects itself into life. It is the randomness of life. At most, we can only attempt to load the dice. Sometimes things happen… even if one is faster, smarter, and stronger. Just ask Odysseus.

River Baby

Today Charlie learned about rivers. She played in the Shenandoah River and went on a short hike along the river bank.

It Matters

Ever since I can remember, I have done A LOT of volunteer work. In high school, I have won awards for the number of hours I’ve accumulated. The habit carried over into my adult life. When there is a call for volunteers, I’m usually one of the first to step up. People generally tell me what a good person I am and so forth. Here is a secret… *I* benefit from volunteering. I learn about things that I’m interested in, I meet some really amazing people, I get a stress free opportunity to try out new skills (nobody fires a volunteer that messes up), and I get the satisfaction of doing some sort of good. Through out it all, I have always wondered “Does it really make a difference?”

It was not until I was on the receiving end of others’ volunteer work that I discovered the answer.

During the three months that Charlie was in the NICU, I was pretty much alone. My husband had to work (we had to pay bills somehow) and my friends had to work and manage their lives. It’s bad enough to grieve. However, when I grieved alone, I found the silence is deafening, the emptiness consuming, and the isolation is unbearable. There were days that I woke up and begged for the strength to make it through another day. On one of those such days, I arrived in the NICU early one morning to find a case of Girl Scout cookies. There was a note on the case stating “Help yourself to a box”. It was the morale boost (and probably the sugar rush) that I needed. Somebody had donated those cookies.

Next, there are the companies and individuals who donate scrap-booking supplies to the NICU family support. I do not think they realize the importance of it. I am not sure why I initially wandered in to the scrap booking class. In hind sight, I’m glad I did. I got so many things out of the simple act of putting together a NICU scrap book. Most importantly, I was able to process what was happening as I pieced together the scrap book. It was my first step towards empowerment. Someone gave that to me.

Finally, there was the blanket we were given from Child LIfe. Somebody, somewhere had knitted and donated the baby blanket. We received it on a day that we did not know Charlie was going to be hospitalized. Due to this, I was poorly prepared for her stay. Despite the hospital being a children’s hospital, there were not any baby blankets. My baby would not have had a blanket without that donation and I would have worried about one more thing. The gesture was incredibly comforting to me during a stressful and demoralizing time.

These are only a few examples of many instances. Many times, we do not get to see the results of the work we do. Some times, it seems too small of a gesture to address a much bigger issue. I’ve found out first hand that kindness and volunteer work really do matter.

After a 3 mile hike, I’m beat but Charlie could go for more.

Our Secret Language

We have had a very busy week. It was not for nothing. We obtained a lot of good information on Charlie. As the G.I. Joe cartoons constantly reminded us, “Knowing is half the battle.”

Today, I received the detailed report of Charlie’s work up. There was a mention of CP but the majority of the focus was on sensory issues. Like many preemies, Charlie has many of them.

The doctors this week tried to explain to me about sensory issues and Charlie. I told them that I understood. Up until this point in life, I just thought I was quirky.

When I was little, I used to fight my mom anytime she tried to put lacy dresses or tights on me. Even now, I still cut the tags out of my shirts, I am picky about fabrics, and I avoid tight clothing, even jeans. I used to cover my ears when balloons popped. I still do when I anticipate sudden noises. In my chem labs, I had to have others stuff my test tubes because I can not stand touching cotton. I can only tolerate wearing shoes for a short amount of time and the seems in my socks have to be perfect. I get carsick unless I’m in the front seat. I am clumsy and run into things often. I do not like it when people touch me. I thought it was because I was strange.

I was annoyed with myself because of all this. Now, I realize that it is important in helping me understand Charlie’s world. It is as if we have our own secret language. My job now is helping her to learn to navigate a world that does not speak it.