Monthly Archives: May 2013

Finishing The Proverbial Marathon

When Charlie was in the NICU, there were a few cliche phrases passed around. One of them was “Never Trust A Preemie”. Its purpose was to convey the perilous uncertainty of any given preemie’s condition (even the stable ones). Another was “It’s not a sprint, it’s a marathon”. In other words, improvement in the NICU takes time… a lot of time. Weight gain is measured in grams and formula intake in milliliters. Despite the truth in them, I hated hearing these phrases as much as I disliked being asked “How’s the pumping going?”

Everyday for the three months that Charlie was in the NICU, I felt like I was holding my breath from one day to the next. I finally felt like I could relax and breathe the day she was discharged from the NICU. Similarly, Charlie’s one year check up felt like I finished that marathon talked about in the NICU.

It is not that Charlie has “caught up”. Despite her amazing progress, she still has feeding problems (oral aversion and swallowing problems), motor delays, speech delays, and sensory issues.

Despite everything, I feel like we have crossed the marathon finish line. First, I know that no matter what happens (catch up or not), we will be OK. More than likely, even better than OK. I dare say that we will thrive.  Second, this year was the toughest thing I have endured. It was grueling. Just like if I had run a marathon, I am really proud that we made it. Finally, there is room for improvement. As is the case in most sporting events.

Today, at Charlie’s one year well visit, she showed off her new skills. Her pediatrician and I flipped through Charlie’s baby book. We were both in awe at how far she has come. Afterwards, the pediatrician closed the book and handed it to me. It felt strangely ceremonial and oddly reminded me of receiving race results.


Birthday Fun

As promised, Charlie and I spent her birthday together.

First, we spent the afternoon at the arboretum. We met up with some other moms and their kids. I was thrilled with how well she did playing with the other kids. The ideas from her OT were really very useful.

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After a nap, we went out to get a bite to eat with her dad. We decided to let her try a bite of cake (as practice for her party this weekend). What oral aversion? Obviously, she’s been holding out for cake.

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Dear Charlie

Dear Charlie,

One year ago today, you entered this world after only 26 weeks of gestation. You weighed a mere one pound and eleven ounces. You look tiny and helpless in the pictures, but I knew you were feisty. You showed this by repeatedly kicking back during ultrasounds. Dad said you proved your might by screaming all the way to the NICU. The doctors predicted that you would not be able to cry.

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From the very first day that I was able to, I sat by your side. I watched you fight and I cheered you on. On your difficult days, I prayed and begged. It seemed like it was back and forth for a while in the beginning.

Each day, I would scrub down and sit with you. I read you stories and sung lullabies to you. Sometimes you would forget to breathe. I gently nudged you as a reminder. I held you like a kangaroo whenever I was allowed. I did not ever want you to be alone.

All the nurses loved you and took good care of you as if you were their own.

Your daddy visited every day after work. You first opened your eyes for him. I guess you knew that you were a daddy’s girl from the beginning.

Slowly, you became stronger and you grew…

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After a little more than two months, you were well enough to be called a “feeder grower”. You were transferred to a NICU closer to our home with your own room. There, you grew even more.

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When you could breathe on your own, maintain your body temperature, and eat… you got to come home!!!! You barely weighed over five pounds.

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At home, you met Kaia and Maile. We picked apples, went hiking, and played in parks.

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You needed a little help with learning to move and being able to eat so you were enrolled in Early Intervention. From there, you took off!

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I knew that having a baby would change everything. I did not know that I would be inspired to be better, braver, and stronger than I ever thought I could be. Your first year is not at all what I expected or prepared for. But it was so much better than I had hoped for or even imagined it could be. Thank you for fighting so hard and being so strong. I am so proud of you.

You will always be my Charlie Bear.

Happy First Birthday!

Love,

Mama


Today… a year ago

Last memorial day, my OB/GYN walked into my room at 8 AM. He pulled up a chair to my bedside. In the previous nine days that I spent hospitalized, I figured out his modus operandi. If there was no news, he would flutter around my hospital room and fidget with his coffee while talking to me. If there was difficult news, he slid a chair up to my bedside to deliver it. As he sat down at my bedside, I braced myself for whatever bad news he was about to deliver.

He did not hesitate as he said, “I have received the results of this morning’s labs. I have to talk to the perinatalogist. However, if it is up to me… we deliver today. You should call your husband.”

As the doctor stood up and walked out of the room, I jumped on the phone. My husband was over three hours away. I was afraid he would not make it in time. I knew she was coming soon. However, we were almost positive it would not be on Memorial Day.

Time felt like it came to a stand still as I waited alone for the verdict. I was ravenously hungry because I was instructed not to eat or drink. Finally, around noon, the perinatalogist walked in to my room. I held my breath as I listened for the verdict.

She explained that a consensus was reached to hold off for the day. The delivery was coming soon. She gave permission for me to eat.

Looking back, I realize those ten days I spent in the hospital watching, waiting, and choosing when to act was merely a light training course for the next few years.

This week is Charlie’s birthday week.


The Longest Year

Today, we finished working on the final details of Charlie’s first birthday party. She will turn one year old in the middle of next week. Many people have remarked how rapidly this year has passed. On the contrary, I feel like it has creeped by.

I have a hard time remembering what it was like before I knew what NEC, CPAP, A’s & B’s, PICC lines, TPN, ROP, transpyloric, ng tube, billi lights, isolette, IFSP, Neocate, epo, synagis, Early Intervention, Physiatrists, torticolis, and feeding therapists were. I sometimes forget that most moms don’t know how to put in an NG tube in their baby, how to convert kg to pounds (or mL to oz) in their heads, which 24 hour pharmacies compound, or have nudged their baby to get it to breathe again. My life before all this seems so long ago.

My steep learning curve was not limited to medicine.

In this year, I grasped what pragmatism actually is. There was an ideal way that I had planned to do everything. However, circumstances arose that made my plans impractical if not impossible. I had to go with the best approach that I could for our given situation. It is not perfect but it works for us.

I learned that bad things sometimes happen for no rhyme or reason. Bad things can happen to anyone. Prior to this, I was under the delusion that horror stories and tragedies only happened to other people. I have figured out that I am not immune.

This year has taught to me the difference between one’s curiosity and one being nosey.

I have discovered that I do not ever want to hear the phrase “If you need anything…” ever again. I do not want to hear another trite phrase. Due to this past year, I understand how to be a better friend.

I understand that wants, wishes, needs, and desires do not have to be logical or even make sense to anyone other than the owner. They are just as valid and important.

After this year, I trust my instincts. I have never regretted the times I have used their guidance. However, I have frequently experienced remorse for ignoring them.

I have seen what heroes really are.

After watching one slowly unfold, I have learned to believe in miracles.

The aforementioned are the lessons that I can recall tonight. I am sure there are more. Some people take a life time to acquire this information. I think that because I have in a year, it makes Charlie’s first year feel like my longest year. No matter how tumultuous it was or lengthy it felt, I know that I am fortunate.

Now, on to the celebration.


I believe it is time for a new baby gate.


The Difference Early Intervention Makes

Charlie’s first birthday is less than a week away. I wanted to see how far she has progressed and grown during her first year. I looked through the pics and videos that I have posted on Facebook.

Obviously, she has grown quite a bit since the NICU. In addition, Charlie has made amazing progress in a way that may not be obvious to others. Her motor skills have drastically improved.

In a video taken in mid December (she was four months adjusted age), Charlie was unable to use her arms or legs. (I will post the video after writing this.) At that point, Charlie had only begun PT. Clearly, something was not right.

In desperation, I posted on a special needs parents board. I explained my situation and asked the parents what advice they had for me. Early Intervention and seeing a developmental pediatrician were both suggested repeatedly.

I followed the advice. I had to. It is what I needed to do to be OK if she doesn’t catch up. I knew there was a problem. I could not pretend it was not happening. If I ignored it, she would pay the price for the comfort of my own denial.

For six months, she has been in Early Intervention (PT, OT, and Speech/feeding) while being followed by a developmental pediatrician. We still do not know the etiology of her developmental delay. She is still developmentally delayed. However, she is making amazing progress. Yesterday, she commando crawled for the first time.

Early Intervention has made all the difference for Charlie. I am unsure she would have progressed as far with out it.


This video was taken mid December of Charlie. She commando crawled for the first time yesterday evening.


She became mobile tonight!


One day I want Charlie to see this and know that her daddy covered her up like this because he was afraid her toes get cold.


On this day one year ago…

My preeclampsia was discovered. I thought I would have a more difficult time dealing with the date. I really have not thought much about one year ago. It feels like forever ago.

Instead, my mind has been on yesterday’s play date. Charlie has shown interest in kids her age. I met up with a local moms’ group at a park so she could play with some kids around her age. The experience was eye opening to me.

I live in my own microcosm which is comprised of doctors appointments, therapy appointments, NICU parents, and daily life activities. I know there are other people out there. Up until now, I have limited my contact with them. In the eyes of the people we deal with, Charlie is doing extraordinarily well.

Yesterday’s play date was Charlie and my first interaction with “term” parents and kids. I know Charlie is delayed (hence all the therapy). I found it to be difficult to actually see it. The worst part was when Charlie was excited to see the other babies/toddlers but realized she could not play like them. It was the same look of confusion and helplessness that she used to get when she would wiggle and fight to escape the impending Synagis injections.

The other mothers were very nice. Although, I felt like I lived in a different world. It was also very clear to me the difference between a micropreemie mom existence and a term mom existence. The moms group experiment did not work out so well.

I spoke with Charlie’s early intervention therapist and we did some troubleshooting. Charlie and I are going to the next play group and we are going to try again. We will incorporate some of the ideas her therapist suggested. I will be better prepared at seeing mobile kids Charlie’s age. Hopefully, it will go better for us. It is difficult for us to find an appropriate social setting for Charlie. As much as I would like to, we can not live in our own world forever.

I got on this “roller coaster” one year ago today.


Charlie’s self photos.


Loves That Sound

Charlie loves sound. I do not know if it is due to nature or nurture. Maybe, it is a little of both.

Her father and I both love music. Probably a little more than the average person. Her infatuation may be influenced by genetics.

Her short up bringing thus far may have played a part. When I was pregnant, I scaled back on my show attendance. I saw a few jazz concerts. After I was hospitalized and I knew she was coming extremely early, I played all of my music favorites for her. Once home from the NICU, she would soothe to jazz at night.

I thought it was my wishful thinking when I first had an inkling that she liked sound. My suspicions were confirmed when she was evaluated by developmental specialists. Every one of them independently noted that she liked or responded favorably to sound.

I have not had formal music training. I did not know how to use Charlie’s love of sound to help her grow and develop. I was unsure of how to proceed. I thought of the possibility of a toddler music class. I decided to look for one. Late one night, I browsed the internet to find a local music school to point me in the right direction. Instead of a direction, I found the answer.

After meeting with music school staff, I enrolled Charlie in music therapy. Charlie had her second session today and I could not be more pleased.

Most importantly, Charlie truly enjoys it.

From the therapy aspect, it helps her grow in many ways. First, is her sensory processing. She gets to hear and feel sound. Next, It helps with her motor skills because she is sitting, reaching, grabbing, and striking. Also, her hand eye coordination is further improved by playing instruments. Furthermore, singing and playing music helps develop the language center in her brain. Additionally, there is a problem solving aspect involved in playing simple instruments. Finally, it develops self confidence.

Music therapy has turned out to be better than I could have imagined. Charlie does not realize that it is therapy. All she knows is that she loves that sound.


After taking care of this baby for most of the weekend, I realize that your job is really hard.

My Husband, Neil


The Unpopular Post

I’m going to warn you. This is not going to be a popular post.

Mother’s Day disturbs me.

I was pregnant this time last year. My doctor had just become concerned with my ever climbing blood pressure. I was seeing spots every now and then. I was short of breath. They were the first signs that something was not right.

Well meaning people felt the need to wish me a “Happy Mother’s Day”. It turned my stomach each time. I kept thinking, “Haven’t any of you people heard the cliche about counting your chickens?” Instead, I politely smiled as I prayed inside.

Today, on Mother’s Day, I am not celebrating being a mom. I do that every day. Instead, my thoughts are drifting off to the women who have lost babies, the couples that struggle with infertility, the children who lose moms, and those other relationships that are too complicated to put into words (foster kids, etc).

It all bothers me because I know how close I was to being included among those people.

Maybe it is some of the residual guilt I feel from my baby surviving the NICU. I do not know why… I feel that Mother’s Day is a needlessly cruel obligatory day.

I understand that there are people out there that deserve to be recognized. If you feel the need to honor a special person, celebrate them every day through the little things. One day of recognition is pointless and even kind of tacky.


My husband sent this pic to me while I was hiking to show that she finished her peas.


Yesterday, Charlie topped a day at the park with her first Popsicle from the ice cream truck.


Charlie meets Liam. Neil and I got to have coffee with Liam’s parents. Hopefully, it will be the first of many family get togethers. 🙂



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