Monthly Archives: May 2014

Now You Are Two

Day of BirthTwo years ago, a nurse directed me to call your daddy. “Are we having the baby today?” I asked. She answered, “If I were you, I would want my husband here.”

We found out later, she chose her words carefully because they weren’t sure you were going to survive.

Two years ago, you were delivered at twenty six weeks. You weighed only 790 grams.

I was told how, with your eyes still fused shut, you surprised everyone with a mighty cry.

NICU Preemie Card_editedTwo years ago, I saw your picture for the very first time. Later in the day, the NICU nurses sent a card of your prints with a note that said “For my mommy”.

I cried when I first saw it.

Two years ago, I held the print card while propped up in my hospital bed and thought “Holy crap! I’m someone’s mom.”

I couldn’t wait to meet you… the baby that amazed everyone.

Two years ago, everything changed. Although the ride has been bumpy with many twists and blind turns, we figured out how to see past our challenges, learned to let go of what should be, and discovered how to love what is.

I’d do everything all over again, and more, to get to you.

Happy Birthday Charlie, today you are two.

 

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Charlie’s Birthday Weekend

We celebrated Charlie’s birthday this weekend and spent the long weekend at Breaks Interstate Park (number twenty four if you are counting). The park is located on the border of Virginia and Kentucky along a break in the mountains. The weather and scenery were a spectacular setting for the big second birthday.

Charlie enjoyed the weekend spent mostly outside. We participated in many activities and adventures which kept us entertained and laughing. Over the course of the weekend, I let go of the sadness that was tainting an otherwise joyous occasion.

It’s true, two is not the end of the preemie journey for us as promised. So what? I’ll chalk it up as another thing that didn’t play out for us and move on. It doesn’t matter anymore.

On the car ride back from the park, I kept thinking about Memorial Day two years ago.

I remember how the OB/GYN pulled a chair up to my bedside.

I noticed during my ten day stay on the high risk perinatal unit his body language told me everything before he spoke. If there was no news, he fluttered around my hospital room, fidgeted with the lid on his coffee, and glanced occasionally out the window. If it was bad news, he slid a chair up to my bedside to deliver it.

After he was seated in the chair on Memorial Day, he gently explained he was no longer comfortable continuing my pregnancy.

A couple hours later, the perinatologist entered my room and told me that I would not deliver that day.

Charlie was born via emergency c-section at 10:29 AM the next morning. A twenty six weeker by ten hours.

A few of the pictures from our weekend. 

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Time Off

Things are well here despite the lack of posts. The next week or so will be light in posts. We have a busier than usual week ahead of us with Charlie’s birthday, March For Babies, and Memorial Day weekend.

For the next week, I will post even more sporadically than usual. While it may be chaotic, I am looking forward to the adventure ahead.

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We Did It!

A quick post tonight because I’m tired. I’m happy to report Charlie and I attended my friend’s baby shower. It was a very nice party. Overall, things went well. However, there were a few strange moments for me.

First, I had to get over the feeling of being the elephant in the room. Like it or not, I am a shining example of one of the many ways things can go wrong. I don’t think people notice or cared as much as I was self conscious of it.

Second, because of the noise, excitement, and another kid pushed her down twice, Charlie became disorganized. When this happens, her feeding is terrible. I carry formula in the car for such occurrences.

It’s obvious that Charlie is too old for a bottle, I hate feeding her a bottle in front of other people. I ease my nerves by reminding myself at least it’s not an NG tube and chuckle to myself.

Third, it was strange hearing the other women reminisce about their pregnancies. I have no pregnancy stories or memories to share. Or rather, none that anyone would want to hear.

We did end up leaving early. But, it was due to Charlie starting to melt down and her desperate need for a nap.

Later in the evening, I drove back from the store and thought about the significance of the day. Two years since everything suddenly changed. I wasn’t paying attention to my speed until I saw the flashing lights in my rear view mirror.

At first, I was annoyed at myself for being so careless. As I watched the officer write up my ticket, I thought, “If this is the worst thing that happens today, I am lucky and it is a pretty good day.”


Let’s Do This!

Tomorrow, my friend is having her baby shower. I haven’t attended a baby shower since the one I didn’t have. Tonight, I struggled with the decision over whether to go or not to go.

Honestly, I want to duck out. The reason being is that tomorrow is also the two year anniversary that I was hospitalized with severe preeclampsia. Two years ago tonight, I was filling a huge jug in my fridge with urine. It was the night before everything changed.

I don’t want to hurt my friend’s feelings. I know she would understand if I didn’t go (she was very supportive when Charlie was in the NICU).

However, I don’t want my friend to suffer because I have. It’s been two years, I can’t avoid important events in people’s lives forever.

I can at least try to go. Who knows? Maybe there won’t be an issue and I’ll have a fantastic time.

My husband is busy so I have to take Charlie with me. Secretly, I hope she is enough of a distraction to ward off the sadness and somber thoughts.

If not, there are other options. I can leave early if need be. I can text for back up. There are options.

I find it funny that Charlie usually clings to me in most situations. Tomorrow, I may very well need her instead.

Ready or not, here we go…  Let’s Do This!

This picture is way off topic. But, I love the expression. It is from a visit to a children's museum yesterday.

This picture is way off topic. But, I love the expression. It is from a visit to a children’s museum yesterday.


The Week Without Therapy

For over a year, Charlie has attended at least one therapy appointment every week. Now, she has therapy four out five days during the work week. Mix in the appointments with the specialists and it becomes A LOT.

I’ve heard of and talked to parents whose kids have taken breaks from therapy. From time to time, I’ve secretly fantasized about it. But, I was afraid to. I didn’t want to miss out on opportunities. After some thought, I decided Charlie and I would take this week off of therapy.

It has been wonderful.

Rest assured, we aren’t sitting around the house and watching TV. We are getting out and doing things on our accord. We have no schedule to keep or places we have to be. We aren’t thinking about the goals she needs to work on. The freedom and relaxation has been fabulous. It’s like we’ve been on a vacation of sorts.

We are only midway through the week and are having a fabulous time.

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Pictures from part of today’s adventure. It was Charlie’s first time on the playground merry go round.


When Things Fell Apart

This is the week that it starts. Two years ago this week, we heard the ominous word “preeclampsia” uttered for the first time.  So begins another anniversary season of when things fell apart.

While those pivotal dates have their own significance, I have conflicting emotions about Charlie’s fast approaching birthday.

Two is a special age for preemie parents. Two marks the end of age adjustment to account for a premature arrival. Two is when preemies are supposed to “catch up”. Two is the promised end to preemiehood, the finish line.

But, not for us.

It’s true, her age will no longer be adjusted. Yet, she will not be “caught up”. The therapy and the specialist appointments will carry on. The consequences of her early birth will not disappear.

I knew her second birthday was going to be this way. I realized it when I saw the look on her doctor’s face the first time I asked why she couldn’t hold her head up. I knew then she was going to be an exception.

I’ve had over a year to prepare and brace myself. Nevertheless, it still bothers me.

The situation is similar to her birth. Once I was diagnosed with preeclampsia, I was told she was going to be a preemie. Yet, when she made her appearance I was consumed by unexpected feelings of loss.

I’m happy Charlie is going to be two. I feel so lucky she’s here with us. I am grateful for the progress she has made.

However, I’m saddened that she didn’t catch up. I’m slightly disheartened the super preemie predictions made at her NICU discharge didn’t come true. She has come a long way. Though, she still has so long to go.

Welcome to anniversary season, a time of complex, conflicted, and irrational emotions that often take me by surprise.

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Mother’s Day Revisited

This is my second Mother’s Day as a mom. I love being a mother. Nevertheless, my feelings towards the holiday haven’t changed since last year. I continue to find Mother’s Day to be a needlessly cruel obligatory day.

Instead of the intended gush of heartwarming feelings, I think of loss. I think of the women who lost children. I think of children who have lost their parents. I think of families where the parental relationships are complicated or broken such as with foster kids. I think of the women who desperately want to be a mother but can’t.

How horrible it is to have a holiday focused around something many have lost or can’t have. I question the reason for its existence.

I believe actions speak louder than words. The sum of actions throughout the year mean more to me than one lousy day of practically compulsory recognition.

I love being a mother. But, I’m not a fan of Mother’s Day.

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Spring Fever

The weather has been nice this week. I believe Charlie and I have a bad case of spring fever. She asks to go outside and I happily oblige.

During the two hottest days, she played in the Shenandoah River. She cried each time she had to come home.

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Today, she explored the state arboretum for the first time out of the stroller.

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The week has shown me what a huge difference a year makes. This time last year, she was unable to sit without support and we wondered if she would be able to walk. She may not “catch up” by two, but she has come such a long way. Go Charlie, go!

Charlie one year ago.

   Charlie one year ago 

Charlie now

Charlie now


National Nurses Week: A Patient Says Thank You

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

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

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

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

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

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

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

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

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

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

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

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I Don’t Mind The Labels

At this point in her journey, Charlie has racked up quite a few diagnoses. They range from spastic diplegia to a feeding disorder. Her doctors do their best to deliver the news gently and with care. But, by the time they are mentioned, I am relieved.

horseI am Charlie’s mommy. I know what she can do well and what she struggles with. I’m the first one to realize when there is a concern. When Charlie receives a diagnosis, the doctors are merely naming what I have already known for some time. I also realize that a diagnosis does not define her or set limits.

Sometimes its tough but, receiving a diagnosis can be helpful. They are tools. Insurance will more readily approve services for a diagnosed condition rather than the generic term “delay”. Additionally, understanding the reason for a delay can aid in overcoming it and identifying the right therapeutic strategy.

The labels do not bother me. They are not who Charlie is or will grow to be. Only she knows how far she can go. I have no plans of letting a label stop her. My job as her mommy is helping her reach her potential and find her place in the world.

 


Celebrate Parents of Preemies Day

parents of preemies dayWhen I had a preemie, the gravity of the situation was dismissed by many. “A lot of people have preemies. It’s no big deal.
They spend time in the NICU, they come home, and catch up by two. It’s fine.” I was told.

Unfortunately, plenty of people still believe this myth. I understand, from a distance, that’s how it must seem. These tiny preemies grow and improve (if not catch up completely). The progress seems natural like something that happens on its own. Those on the front lines know better. They see the struggle and see what goes into being a preemie parent.

Preemie parents are survivors. Rather than a source of pure joy and excitement, the birth experience is complicated, scary, filled with loss, and sometimes traumatic. A happy ending is not guaranteed. Preemie parents endure all these things and find a way to carry on.

Preemie parents learn another language. First, it’s the language of the NICU. Then, after discharge, it’s the language of specialists and therapists. Their new vocabulary includes diagnoses, medical jargon, and names of medical devices. Later, it can include sign language or subtle body language.

Preemie parents become advocates. At first, I thought the medical community always did what was “right”. Then, I quickly learned that “right” has a different meaning to everyone. Preemie parents speak up, find answers, and get what they feel is “right” for their child.

Preemie parents are their child’s medical expert. They coordinate the specialists and the therapists. Many hours are spent shuttling the child to appointments, working on therapy goals, jumping through insurance loop holes, and talking to doctors. Preemie parents are the first to notice and call attention to an issue with their child.

Preemie parents walk a fine line between hope and acceptance. I hope all of Charlie’s delays will resolve one day. However, I am prepared to accept if they don’t. Being neither here nor there is a strange place to exist. Preemie parents spend years hoping for a resolution but preparing for the possibility of permanence.

Preemie parents organize. I constantly see my fellow preemie parents raising money for their favorite NICU or preemie related organization. We network with each other. In addition, I am aware of the online forums are created, conferences planned, and the presentations made to government officials in support of preemie related issues.

Parents of Preemies Day celebrates the parents who stepped up and rose to the challenge in the shadows of every day life. No one chooses to be a preemie parent. The outside world mistakenly believes that there is little to it. On Parents of Preemies Day (May 4), I celebrate our journeys and how far each of us has come.

micro preemie Charlie outdoors baby

 

 


Stumbled Upon Magic

state park hikeToday, Charlie and I scrapped our scheduled plans. I suppose I had a little bit of spring fever or felt a little burnt out. Whatever it was, I looked at the calendar this morning and was uninterested in the day’s activities.

At first, I was tempted to stay home and read. We are taking a second crack at sign language with Charlie. I thought about using the day to learn more signs.

But, Charlie has been obsessed with going outside. She tries to open the exterior doors saying “Ah Sye!” Charlie even attempts to convince her therapists to go outside instead of therapy.

The next state park on our list has been at the top for some time. Its visit was delayed due to lousy weather and my March of Dimes activities. Considering everything, I decided today was a good day to finally check it out.

outdoor babyThe outing turned out to be one of those trips that was flawless. The drive there was relaxed and uncomplicated. We arrived and had to decide what to do first.

Charlie played on the park’s playground before she walked her first trail without a stroller. She loved her new freedom and bent over frequently to examine things. Afterwards, she played in the sand on the shore of the Potomac. We wrapped up the day with another hike.

The weather was gorgeous, the park wasn’t crowded, and we saw plenty of wildlife. I love our state parks and always enjoy our time at each one. However, there are some parks that are far better than I anticipate them to be. On the right day (like today), the experience is almost magical.

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