Category Archives: NICU

Baby Clothes

Out of everything, baby clothes have held a special place in my parenting world. Not only did Charlie’s birth entail numerous losses, but there were very few parenting choices that I got to make. What Charlie wore was the only thing that could still go the way I had imagined it when I first got pregnant. I clung to my idea for her wardrobe fiercely.

Anytime Charlie out grows a size, I pick out the clothing pieces that mean something and place them in a drawer. The pieces in the drawer will be incorporated into a quilt one day. The rest of the clothes get dumped into a trunk in the basement and forgotten. Each time I add to the trunk, I tell myself that I will deal with it at a later date.

You may wonder how clothes can mean something. Also, you may find yourself asking why I needlessly store (OK, hoard) baby clothes in the basement.

I will begin with the easy question. Many of Charlie’s old clothes are significant to me because they have important memories attached.

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The last day she wore her “Sweet On Mommy” onesie.

For example, there is the preemie sized onesie she wore in the NICU that said, “Sweet On Mommy”. Each time she donned it, I marveled at the fact that I was the “mommy” it was referring to.

Also in the drawer, there is a size zero to three month sleeper with pink cats. One of my husband’s coworkers gave it to us the week Charlie was born. I remember when I first saw it. I held it up and couldn’t imagine my baby ever being big enough to fit in it. The day came during the week of the presidential election. I tried it on her after a bath and sobbed because it finally fit.

In fact, I was still crying when I investigated a knock at the door. I opened it to find Obama supporters who were canvassing the neighborhood in an effort to encourage votes. I am sure they wondered what the blubbering lady carrying a baby was about.

These are the kinds of clothes that occupy the quilt drawer. In the not too distant future, I will make a quilt using these clothes. Additionally, I plan on sewing the patches I’ve collected at each state park on to the quilt.

I don’t think I ever had a plan for the clothes in the basement. I wanted to donate them. But, I needed the donation to mean something to me. I knew it was not simply a matter of dumping giant garbage bags at the local Goodwill. Those weren’t just any baby clothes. They were Charlie’s clothes. They were my solace. They deserved better. But what?

This week, Preemies Today put out a request for gently used preemie and newborn sized clothes for a NICU baby shower this Sunday. I decided this was it. I was ready. It was time to deal with the clothes.

Tonight, I sorted through the clothes and selected my donations. (Basically, anything in the requested sizes that didn’t carry a significant memory and wasn’t stained.) It felt like an archaeological excavation. Each piece of preemie and newborn clothing was like an artifact from a lifetime ago. I shuffled around my selections for the quilt drawer and washed what was to be donated.

These clothes have served us well. It’s time for them to comfort another NICU family. And, perhaps, become a memory worth saving.

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How Little Is Understood

Only a handful of people will ever fully understand any of the feelings involved in Charlie’s birth. That is why I became so annoyed with this article that repeatedly appeared in my social media feeds today.

Numerous moms lauded it and responded with proclamations of sisterhood. However, not one of my friends that have lost a child praised it. Nor, did I see any of my fellow micro preemie moms passing it on.

The thing is, unless you are a micro preemie mom, you can’t possibly understand what I’ve been through. Even then, our experiences may be vastly different. Similarly, I can’t pretend to understand what my friends who have lost a child have experienced.

Yes, you may be able to imagine a bit of the fear that I felt when Charlie made her early arrival weighing in at 790g. But, you can’t ever imagine what it was like for me to sit beside her isolette in silence for days, unable to touch her or hold her. I maintained the vigil simply because I did not want her to die alone.

You can’t imagine the loneliness I felt when people constructed excuses not to visit me and my baby because it was too hard or uncomfortable. You can’t imagine the powerlessness I felt as I pled for my newborn’s life.  You can’t imagine the heartbreak, the anger, the fear, the jealousy, the envy, and the profound sadness I felt during her NICU stay. Each day, I woke up and whispered to myself, “Please, don’t let anything bad happen today. Please, don’t let my baby die today.”

Eventually, she did come home but it was not over.

There was more heartbreak and sadness that came with diagnoses and countless unknowns. Every little milestone was and is celebrated like a hard won victory. Because, that’s what they are.

Most importantly, there are the bits that most likely didn’t cross your mind. My relationships with friends and family have changed. Some for the better while others were broken or abandoned. The stress rocks a marriage. I feel disconnected from a lot of the world around me. I no longer relate to most of my peers.

While I’ve come out of it stronger, more resilient, wiser, and braver, part of me is wounded. I lost my sense of safety. I fight through anxiety every single day. I am haunted by guilt. Periodically, I mourn the loss of my birth story, the loss of my child’s babyhood, and the loss of the imagined life we were supposed to have. I will never be the same.

Each time I see the article pop up in my feed, it’s a slap in the face. It minimizes my feelings and is dismissive of my trauma. Instead, the article shows me how little you do understand. I don’t care that you are a mom. You can not possibly know. You are not supposed to know.

Something horrible happened to me and some of my friends. There are some things so horrible that you can’t understand unless you experience them first hand.

For your sake, I hope you don’t… because you’re a mom.

 

 


Arizona

Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.

So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.

Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.

One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.

The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.

Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.

Back to ShareUnion:

In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.

Everyone gets something different out of it, this is what I get:

Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.

Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.

Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.

The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.

The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).

If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.

 


The Power Of Photos

I’m one of those moms. I take a few minutes in the midst of the action to snap photos. Some people may find it annoying. Others, comment that I’m not really enjoying the moment if I’m busy taking pictures. To the former, I apologize and to the later, I beg to differ.

Photos are my way of capturing memories. You’ve probably noticed from my photos, I don’t worry about lining up the perfect shot or finding decent light. I pull out my cell phone in the moment and snap several pictures for a minute or two.

At least, one of those pictures will turn out. The memory of the day will live on with my memento.

bearcreeklakeFor example, when I see the picture on the left, I’m reminded of the first cool, crisp autumn day of last year. I remember how Charlie laughed at the sound the lake animals made as they splashed through the surface. The picture is a reminder of the ranger who paused with a surprised expression when he noticed our unusual approach to hiking. It was one of her last hikes in the infant seat attachment.

Similarly, I have countless photos that take me back to another time and place. Photos have the power to jog our memories of things that may otherwise be forgotten.

In the NICU, I wondered if it was “right” to take pictures. Did I want to remember my baby like this? Was it right to photograph a sick baby?

Day of BirthAt first, I took pictures because I wanted people to see my baby. We didn’t have many visitors and the pictures were a way to proudly announce her arrival.

Later, I started to take pictures for my scrap book (our NICU offered a scrap booking class). I’m so glad I took those pictures, for two reasons. Now, I can see how far she has come. And, if we had lost Charlie in the NICU, we would have had some pictures to remember her by.

What’s not in pictures can also be a reminder.

Unfortunately, there are only a couple of pictures of Charlie and I together in the NICU. There was no one to take them. It reminds me of what an incredibly lonely time it was.

I regret the pictures not taken.

So yes, I am one of those moms who snaps what may be too many pictures. However, the reason for the photos is not to “one up” my friends on Instagram or have the picture perfect life on Facebook. It’s because this is the only baby experience I will ever have and I want to remember every possible bit of it.

I took a lot of pictures at the fountain yesterday.

I took a lot of pictures at the fountain yesterday.

 

 


NICU Reunion: Take Two

10492524_10101775114538109_8279231079749444152_n (1)We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.

Charlie and I arrived and said our initial hellos. Then, I grabbed a seat out in the courtyard under the shade of a tree and watched from the sidelines as Charlie wandered around close by.

There were several children’s activities available but Charlie chose to obsess over the storm drain in the center of the courtyard. She laughed and clapped as she walked back and forth over the drain. Eventually, she found the mulch more interesting and occupied the rest of her play time by tossing it in the air.

Afterwards, we saw Charlie’s primary nurse. It was tough but I stuck to my promise that I wouldn’t cry this year. We talked while the other nurses passed around Charlie and doted over her. Charlie flirted shamelessly.

My friend graciously supplied this picture (and permission) for this post.

My friend graciously supplied this picture (and permission for its use).

Today, had a very different feel.  The memories and emotions were not as intense. However, the hospital food was just as bad as I remember it.

It wasn’t long before we had enough and it was time to leave. My NICU mom friend and her daughter joined us for lunch afterwards at a near by restaurant.

Overall, I’m glad we attended this year’s reunion. Last year, I was still reeling from the relatively fresh news that Charlie had bigger issues than expected. This year, I’ve figured out how to roll with what is thrown at us. And Charlie… well, she’s never given up and it shows.

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NICU Reunion Ahead

This weekend is Charlie’s NICU reunion. I think it’s supposed to be a happy event. However, I have mixed emotions.

Last year’s reunion was the first one Charlie and I attended. To be honest, it was tough. The walk from the parking garage to the hospital conference center was like a walk through a dream. The sights, sounds, and smells stir up so many emotions that the whole thing becomes really overwhelming.

It’s difficult to see the babies that were sicker than Charlie who are now so much further ahead. It’s hard to bring back the baby, that everyone thought would catch up by two, with noticeable delays.

Why go back? Why put myself through this? There are many reasons.

Gratitude is one reason. Our attendance at the NICU reunion is a way of saying thanks to the people who saved my baby and helped me. It’s incredible to see Charlie’s primary NICU nurse.

Another reason is the other NICU parents. I want to see the other parents who were there with me for the majority of Charlie’s three months. I want to know they are well.

The final and most important reason: It’s for me. I’m not going to let the trauma trump me. Each time I go back is an opportunity to process things further. It’s a chance to move ahead in my attempt to leave the trauma of her NICU stay behind me.

Ready or not, here we go… again.

A mommy and me selfie taken today during backyard play.

A mommy and me selfie taken today during backyard play.


The Countdown Begins

Sometimes when I’m around other parents, I feel like a puzzle piece that doesn’t quite fit with the rest of the puzzle. We do have the shared experience of being parents. But, that’s where the similarities end.

I’ve lost my connection with the common parenting experience. I read things other parents sometimes write and I wonder, “Who are these people? How is it possible we live on the same planet, the same country, or even the same state?”

When I’m out running errands, I hear other mothers talk. Their concerns are nowhere close to mine. For example:

For me, vaccines didn’t feel like an option. After spending three months around very young children who were critically ill, it seemed foolish not to vaccinate.

I hate that I know about the Durable Medical Equipment part of a health insurance policy, where the closest pediatric emergency department is, and about epo injections.

I can’t help but think a newborn over five pounds is big.

I don’t want my child to learn to read before kindergarten, be fluent in Mandarin, or become a musical virtuoso. I just want my child to learn to talk. Maybe one day, she will be able to tell me she loves me back.

Toilet training is way ahead of my map. Due to circumstances, we will toilet train much later than most. For the record,  I don’t think that wipe warmers are frivolous when a baby has sensory issues.

I don’t worry about organics, GMOs, or junk food. I would be thrilled to see my child chew AND swallow a bite of anything.

These are only a few of the disconnects. Premature birth has shaken my world to its core. Since Charlie’s birth, there has been only one time and place that I felt like I fit completely into a puzzle. It was at last year’s March of Dimes ShareUnion.

This year’s ShareUnion is just around the corner (in 85 days). Let it be noted, my countdown has begun.

I look forward to spending time with other parents who understand and possibly live in my world. There will be no talk of the “right” way to do things or perfection. Instead, there is understanding and encouragement.

I can’t wait to be in Phoenix in September. I would even walk if I had to.

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Ten Ways Life Changes After Having A Preemie

10 ways

1) You have acquired basic nursing skills. During my baby’s NICU stay I learned to give epo injections, insert an NG tube, read monitors, perform infant CPR, and various other skills. Many were required in order to take my baby home.

2) The smell of hospital food makes your stomach turn. With my stay on the high risk perinatal unit included, we have spent over one hundred days of Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again. I don’t know why they serve it every year at the NICU reunion.

3) Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At the age of two, she wears sizes twelve to eighteen months.

4) Simple questions become complicated. The questions that people generally ask new parents can’t easily be answered. It starts in the NICU with “When is he/she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5) You learn loads of medical terminology. You know what a physiatrist is. You understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL, and ROP mean.

6) Baby showers are complex situations. Baby showers are emotionally loaded. If you are brave enough to attend one, you wonder how to socially appropriately join conversations about birth stories and pregnancy. All the while, you are trying to get over that feeling of being the elephant in the room (being the physical proof of one of the many ways a pregnancy can go wrong).

7) People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full term pregnancy.

8) Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. Everything else in comparison is small potatoes.

9) You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage, and much more. You learn not to accept the first “No” as the answer. You fight and you fight like hell.

10) No accomplishment is ever small. I remember the date that Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones and nobody was sure that she would reach them. Every little thing, from tolerating food in her mouth to learning to wave, is a cause for celebration.

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The First Time I Held Charlie

When was the first time you held your baby? It was a question posed some where on one of my social media feeds last night. Most of the replies were happy stories of a magic moment. I was unsure how to answer the question and had been thinking about the day since I read the question.

dad'sfirstdiaperchangeCharlie was ten days old when the nurse asked if I would like to hold her for the first time. Up until then, I hadn’t bothered to ask. I assumed that because Charlie did not tolerate touch, holding her was out of the question. My nod sent the nurse off to gather a few things.

During the wait, Charlie’s dad had wandered into the NICU from work. We stood side by side as we peered in Charlie’s isolette. Our faces were expressionless and our affect flat from exhaustion, shock, and sadness. “I’m going to get to hold Charlie” I muttered to him. The nurse suddenly appeared with a hospital gown and instructed me to put it on backwards.

I started to take off my shirt. Charlie’s dad look around at the people present in the open NICU and admonished, “You’re not going to put that on here, are you?” I replied, “These people don’t care. The nurse would have told me to go elsewhere if I should.” I continued to put on the gown as told.

Dressing in the NICU was my silent act of rebellion. Over the past several days, I’ve come to resent those other people. They were the ones that walked by my baby’s isolette and stared. Despite my presence, they made insensitive comments like, “I didn’t know babies that small could live” or “That baby is going to be here forever. I’m glad I’m not its parent.” They watched my very private moments (such as the first time I met Charlie) like it was their personal entertainment. If my privacy didn’t matter then, why should it matter now?

The nurse soon joined us in the few feet of space beside Charlie’s isolette and it became crowded. Charlie’s dad left to make room as the nurse untangled tubes and wires from the isolette. After she finished, she placed Charlie on my bare chest.

My right hand covered Charlie’s entire body as she laid motionless on me. During our cuddle, she stopped breathing twice. I had to rub her back and nudge her to remind her to breathe. I was only able to hold her for ten minutes before she was returned to the isolette because she was so unstable.

I cried as I handed her back to the nurse. I wanted to yell that it wasn’t enough time. It wasn’t fair. I wanted to hold my baby and dote on her as most parents get to.

Charlie’s dad returned and he could tell by my tears it did not go well. He didn’t bother to ask any questions. We had become accustomed to bad news. The nurse gently told me to keep up with kangaroo care as Charlie gets older.

month oldI followed her advice and tried to hold Charlie about once a week after that first failed attempt. They went as poorly as the first attempt with frequent apneas, bradycardias, and desats.

Finally, when Charlie was about a month old, she tolerated kangaroo care. Finally, she was able to perch on my chest for hours at a time. She cried out and swiped in my direction each time the nurse grabbed her to put her back to bed.

We don’t have a magical story of our first kangaroo care session. But, that doesn’t mean it isn’t worth telling.


Preemie Babies 101 Guest Post #2

Today’s post can be found on Preemie Babies 101 written as a guest post. The post is titled What I Value In My Preemie’s Pediatrician. Here is how it begins:

Before my baby could be discharged from the  NICU, I had an impressive list of tasks I needed to accomplish. Finding a pediatrician sat on the top of the list. The project seemed simple but, honestly, I didn’t know what I was doing… Read More

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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.

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An Every Day Victory

I had forgotten about this until texting with a friend tonight.

During the first two months Charlie was in the NICU, there was a restaurant across the street that my husband and I would frequent. It was a great alternative to the hospital cafeteria. I think just about everyone on the restaurant’s staff asked why we were wearing hospital bracelets at some point. (For non NICU parents, a hospital bracelet acts like a NICU ID that parents wear the entire time their baby is in the NICU. It does not come off.)

After the initial inquiry, no one ever said another word to us about the NICU. Quite often, my husband and I would sit and eat dinner in silence. We were drained from the NICU and our unspoken need for silence was respected. On a few very bad days, I did my best to hold it together while scarfing down a quick meal during shift change. I was anxious to return to Charlie and service was always very quick.  One evening, we were there much later than usual. We had stayed at the hotel across the street because Charlie was struggling and I wanted to be close by. Everyone just kind of knew.

I did not realize that we were a real life drama for the restaurant employees. In fact (other than missing the food), I had forgotten about that restaurant when Charlie was transferred to another hospital.

A few months after Charlie came home, we needed to meet up quickly with some friends. We chose that restaurant because it was convenient and it met our needs.

We walked in and waited to be seated like we had many times before. The hostess recognized us and called out to the bartender. The bartender looked at us and smiled. It felt like all eyes were on us.

I was trying to figure out what was going on when I noticed that both of their gazes were fixed on the infant carry that my husband was carrying. Every employee present in the restaurant that we had met during Charlie’s NICU stay stopped by our table. They congratulated us and peeked at (and did not touch) Charlie who was napping in her cocoon. Our server was beaming as if it were his baby.

We had to explain to our friends that we visited that restaurant regularly.

It is nice to know sometimes that we have total strangers cheering for us.


Imagine This

Imagine discovering you are pregnant after months of trying. Picture all of the dreams and hopes that are formed in that moment.

breech_editedImagine watching your baby grow in your belly each week. Visualize the excitement and anticipation as the baby registry is completed and maternity clothes are purchased.

Imagine being told suddenly that something is wrong and you must spend the rest of the pregnancy in the hospital. Envision the shock, horror, and denial.

Imagine waking each morning in the hospital thankful to be pregnant because each day improves the baby’s chances of survival by three percent.

Imagine constantly eating everything healthy that the hospital can provide because you had read that babies weighing over 1000 grams fare better.

Imagine not knowing one minute to the next what is happening and having to deliver at a moment’s notice.nurses2

Imagine missing your baby’s birth and seeing your baby for the first time in a photo. Those dreams and hopes formed when the pregnancy was discovered are now a distant memory as survival becomes the focus.

Imagine meeting your baby two days later and holding the baby for the first time two weeks thereafter.

NICU PreemieImagine waking every morning and saying, “Please don’t let anything bad happen today.” as you face your greatest fear each day for three months.

Imagine holding your breath for three months and remaining braced for the unthinkable.

Imagine celebrating grams gained and a tenth of a milliliter feed increase. Picture having to revise the registry (and your life) because the baby’s needs are vastly different.going home

Imagine the day the baby finally comes home. Envision the joy and hope that it is over.

Imagine realizing that leaving the NICU was only the end of the beginning. Visualize the sadness upon learning the baby will not be one of those that catch up by two, if ever.

Imagine being grateful for the horrific journey because it is your baby’s story and how she came to be.

Imagine creating your own “happily ever after” that very few others will understand.

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Photo Credit: Monica DeMariano


Letters From The Front

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey that non preemie parents may not realize.

Non NICU parents have difficulty understanding what the experience is like for new parents in the NICU. Recently, I had pulled up the emails from Charlie’s first month. Maybe, being able to read them is a sign that I’m starting to move on. I don’t think I could have looked at the letters a few months ago.

Other than removing identifying information of the other person, this is what I wrote when Charlie was in the NICU. I hope it helps others understand what the experience may be like for new NICU parents.

When Charlie was seven days old…

Hi ——-,

Today was a good day. It was nice to be able to sit with Charlie and just watch her. I understand what you mean about not knowing what to do with yourself when your baby is so close. I could sit with her all day. I couldn’t imagine spending my days at home right now. Mostly, I read while periodically staring at her. The really good part of today is that I got to touch her for the second time. The nurse taught me how to take her temperature and change her diaper. I felt kind of awkward, clumsy, and scared to death but so happy to be able to touch my baby. Practice makes perfect, right?

Overall, I am feeling much better each day about things. The fact that Charlie is doing better helps a lot too. It’s funny that —– took off her cpap. Charlie does that too. Before Charlie was born, she was very active. We used to laugh when she would kick back while getting an ultra sound or checked by a doppler. She still is very active. They are increasing her feeding amount regularly. She had her first bowel movement today. She has yet to gain weight but they have been feeding her a miniscule amount to see how her digestion would do.

We haven’t gotten to hold Charlie yet. The nurse said that when they put in the line that goes from her hand to her heart (not sure if I heard her right as to what that line is or does) that we would get to hold her. That should happen in a few days. So far, so good with Charlie. Charlie’s dad is doing better today too. His company sent a few meals (with side dishes) to us. Eating well with little effort boosts our spirits.

I’m glad you told me about the brain fog. I will try not to get frustrated with mine. Sometimes it’s like I’m a deer in headlights when someone talks to me. On the other hand, my husband has really been amazing. He talks to the nurses and the doctors in the NICU and asks questions. I feel like I turn into a stunned, bumbling idiot. When I get near Charlie, I don’t know what to say or ask. If there is something I want to ask, I have a hard time finding the words to ask it. Mostly, I cry.

He’s been showing pictures and announcing her birth to just about anybody… even the pharmacist in the drug store. I have been having a much harder time. Whenever I see someone, I pray they don’t talk to me.

I see my doctor this week to have my blood pressure medication adjusted. I was just curious as to if there was anything at home that helped to reduce your blood pressure. Yoga? Dietary restrictions? Anything? When did your blood pressure return to what was normal for you?

One day down… we’ll see what tomorrow holds. Fingers crossed!

Take Care,

Rebecca

A month later….

Hi ——,

I’ve been having a rough go of it. I don’t know how much of it was post partum and how much was situational. I’ve talked to a couple of moms and that helped immensely. Also, this guy we know has siblings who were preemies. Talking to him has been helpful.

One of the moms that I have seen around the NICU has consistently had this look on her face that I figure I must have been wearing as well. It was obvious to me that we lived in the same desperate world. I had the opportunity to talk to her as we were washing up to go in. Her baby has a chromosomal issue. She rattled off a list of what implications this may have and the medical issues her baby faces. They were pretty severe. The striking part of the conversation is that she finished by saying “But she’s so sweet.” It seemed as if she had gotten in the habit of justifying her love for her baby. I felt for her. It was also the point that I consciously realized something that deep within me I already knew. It doesn’t matter to me what disabilities or whatever Charlie may have after all this. It doesn’t change that she is my baby and I love her. Just as with anybody, her life is what we choose to make of it. It really made me feel better realizing that.

I’m suffering from a bit of cognitive dissonance where what I think doesn’t correlate with what I sometimes feel. Even though, I don’t want people to have bad pregnancies or sick babies… I, too, get angry when someone brags to me about how they smoked through pregnancy. The other day during one of the classes a mom said in a moment of enlightenment “Oh! You are supposed to go to the doctor before baby is here?” I found myself asking silently, “How am I in the same boat with her?” I even got my teeth examined before I tried to become pregnant. Logically, I don’t want to think I’ve been better or I’m more deserving of a healthy pregnancy than the moms that drink while pregnant or whatever the issue is. I know better than to judge someone else. I have no idea what their journey is about. But emotionally, I find myself throwing a tantrum like a little kid and saying “It’s not fair! There are so few things that I’ve done right in my life. This one I did as flawless as anyone could. Why did it work out this way? Why does my baby have to suffer?” I know it’s petty, short sighted, and selfish for me to feel this way. But I can’t help the feelings that I have.

I’ve conveyed these feelings to that guy acquaintance (after all this, he is now a friend). He really can’t do much other than just listen. Sometimes that’s all I really need… so few people are willing to do just that. Also, he will, to the best of his recollection, tell me what it was like for his mom. He does all that while refraining from regurgitating a well intended adage. When I told him about how my emotions and what I think don’t sync up, he responded “… so it’s kind of like heartbreak.” In a weird way, he was right. His naming it made me better able to cope with it. I am not sure if it was heartbreak over how my pregnancy didn’t occur as I imagined or heartbreak over the reactions from others. After that, it didn’t eat at me as much. I know that with heartbreak… time eventually makes it bearable. This too will fade. In fact, it has already started to.

Thinking about all this I remembered that through out my life, I’ve always told myself that I can’t always control what happens to me but I can choose how to respond to it. I find myself in that kind of predicament again.

Charlie has regularly been taking steps forwards and backwards. They try to move her forward and it seems for a short while she can do it. But many times, it turns out she’s not quite ready. I’ve started doing kangaroo care with her almost every day. As often and much as she will tolerate. Up until about a week ago, I would only get to hold her or do kangaroo care once a week. The last time I was able to do it was on Friday. She can tolerate up to an hour and a half so far. When the nurse picked her up off of me, Charlie cried out and made a hand motion in my direction. It was equally as sweet as painful.

That evening, I went through the daily ritual of meeting Charlie’s dad in the waiting room during shift change after he got off of work. I told him how great Charlie was doing and how great Kangaroo care was that day. We went back to see her after the shift change as usual. There was a nurse working on her. She informed us that Charlie just threw up (she is still getting her food transpyloric), is destatting, and her stomach was huge and hard. She called the doctor while we returned to the waiting room. I know NEC is a chance. However, my confidence has been shaken since preeclampsia is a small chance and severe preeclampsia is an even lesser chance. After what seemed like forever, the nurse explained that they put in a tube and quite a bit of air came out. They think the whole problem is that the CPAP blew air into her stomach. So we are in the wait, hope, and see stage. We just got home a few minutes ago and things seem to be going in our favor. Up until about last Monday, they had one of those drains in her stomach to let the excess air out (I forgot what the term is for it). They had to take it out recently because as her feeds increase it started to suck the food out as well as air.

The last of the long term NICU moms that were there when I got there have gone home. Some of the other moms that have arrived during my time are getting ready to go home too. I’m happy for them. I expected to feel some kind of envy or something. Not really. I think it will have more of an impact when I see some of the moms go home that I have seen arrive.

Often, people say that I should just spend a few minutes each day with Charlie. I am sometimes confronted with the argument that Charlie won’t remember. I have to explain… I’m not there for her because I expect her to remember and be forever indebted to me. It’s because right NOW she knows when I’m with her. It is about the only thing I can do for her right now.

In the midst of everything, I wonder if I’m losing my mind or if everyone else is inhabiting a different planet or something. I have never felt so disconnected from others around me.

More later,

Rebecca


Sometimes It’s Ugly… But Not Always

Tomorrow is World Prematurity Day. Two years ago, I was not aware that it existed.

There is nothing that will erase the memories of the NICU and Charlie’s first year.

I will not forget the terror, powerlessness, heartbreak, fear, sadness, loneliness, anger, frustration, worry, and desperation that I felt (and sometimes still do).

I will not forget holding my baby down as I learned to thread an NG tube,  stroking her head during countless epo injections, and her helpless expression as she anticipated each monthly palivizumab injection.

I will not forget the long demoralizing walk from the ER to Pediatrics when Charlie was readmitted.

However, I will also remember the triumphs, victories, and great strides.

I will remember the time I spiked the bottle like a football when Charlie finished her entire 20 mL oral feed for the first time.

I will remember the look on the neonatalogist’s face when I burst into tears as he first mentioned Charlie’s NICU discharge plans.

I will remember the high five the pediatrician gave me when Charlie resumed gaining weight after a long and perplexing feeding strike.

I will remember the sound of the cheers Charlie’s dad and I let out when she learned to roll over on her own.

I will remember the proud grin on Charlie’s face the first time she stood independently.

I will remember the love, support, kindness, and selflessness of all the people who have worked to support us from the weeks prior to Charlie’s birth through the present.

Sometimes, preemie parenting life can be brutal and feel merciless.

But, it also possesses beauty and awesomeness beyond words.

Ultimately, I’m grateful for every second of it.

Mostly, because I know how close we came to never having any of it.

5k_edited

This morning, Charlie and I participated in a local 5K run/walk organized to raise money for the March of Dimes. Charlie was very enthusiastic.


The Things People Say

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey that non preemie parents may not realize.

Previously, I had written a post about some of the irritating things other people say to me. Now that we are further in our journey, I have encountered more comments that I could do without. Here are the additions to the list:

1) Any reference to God’s involvement. I realize people who say things such as “God has a plan” or “It was God’s will” mean well. There are so many reasons why I do not like this that it could be a post in itself. Life is not fair. It has nothing to do with God. If you must include God, say something like “I’m praying for you.”

2) Enjoy it, they grow up so fast. The infant need stage is dragging and I am exhausted. I look forward to no longer buying formula, washing bottles, changing diapers, or attending to late night feeds.

3) Aren’t you glad that having a preemie is behind you? Yes, I’m glad NICU life is behind us. However, including therapy, Charlie has about three appointments a week. Often, more that that. Her premature birth is far from being behind us, if ever.

4) Any unsolicited advice. On occasion, I will ask other parents for ideas or strategies. I rely on and do not mind this input. Like any parent, I dislike being told the “best” way to do something. Experience has shown that those who think they have all the answers are actually clueless.

5) Comparing my preemie to a full term child. Often, I hear, “So and so did that at that age.” Or “That’s just like so and so when she blah, blah, blah.” If so and so was not born fourteen weeks early, I want to scream for the speaker to be quiet. But mostly, I politely nod while looking for an exit from the conversation.

6) But she’s so cute. I am not sure where people get the idea that only homely babies have special needs.

7) She will be fine, right? This statement forces me to be optimistic and comfort the other person. We are only beginning to discover the long term implications of Charlie’s premature birth. We will be fine… just not in the way this statement is insinuating.

8) You preemie moms worry too much. Guess what? I probably worry less than full term moms. There was a time in which a normal day included nudging my baby’s back to remind her to breathe. I have learned not to sweat the small stuff. But, there continues to be days in which the pediatrician instructs us, “Keep her breathing and keep her hydrated.” On those days, I worry. No, it is not because I’m a preemie mom. It is because my baby has significant health concerns.

9) What did you do to cause her early delivery? If I haven’t openly explained why my baby was premature, then it is none of your business. I get it. We live in a world where bad stuff just happens sometimes. I understand that seeking a reason why is comforting to whomever asked the question. However, most of us don’t know why we had our babies early. Plus we still carry a lot of guilt that we didn’t make it to full term. This question ends up being hurtful. Many times, there are no specific causes. Women have babies early or develop preeclampsia (or other pregnancy complications) with no known risk factors.

10) Anything concerning breast feeding, cloth diapers, or vaccines. I think most parents, preemie or not, agree with me on this one.

Preemie parents, what would you add?


How March Of Dimes Helped When I Had A Preemie In The NICU

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.

When I was a kid, a couple of the ladies in the neighborhood went door to door and collected for the March of Dimes. Other than having to do something with babies, I did not know what the March of Dimes did.

I had not thought about the March of Dimes again until after Charlie was born.

After meeting Charlie, I noticed there was a cart in the NICU hallway loaded with books. I looked over the cart and selected a thick book about preemies which became my new parenting guide. The book went everywhere with me during the following week as I made my way through its pages. I remember a label on the book because I picked nervously at the label while I sat in the NICU waiting room. The label read, “March of Dimes NICU Family Support Bedside Reading”.

About a week after Charlie was born, I wandered into my first NICU scrap booking class. I was a mess. I had cried until I no longer could, every breath felt like it took enormous effort, and I was functioning on autopilot in a haze. Scrap booking was the last thing I wanted to do. Despite everything, the NICU secretary insisted that I should go.

One of the pictures a NICU nurse had taken for my scrap book.

One of the pictures of Charlie a NICU nurse had taken for my scrapbook.

Once I arrived at the scrapbooking session, I was warmly greeted by the hospital’s March of Dimes NICU Family Support Specialist. She helped me choose a scrapbook and presented a few examples. There were several other parents who were already busy working on their scrapbooks. Although I could hardly speak, I went to work mindlessly pasting as I listened to the other parents talk.

It was the first of many sessions.

The weekly scrapbooking sessions made what was happening feel normal. It presented the opportunity to meet some of the other NICU parents. Additionally, the sessions not only made taking NICU pictures of our baby acceptable (something I wondered about) but encouraged it.  The scrapbooking class was how I learned about milestones that are unique to the NICU. It was a way for me to process what was happening at a time when words failed me.

There is a steep learning curve in the NICU. Medical terminology, equipment, and conditions are suddenly tossed at parents. To understand my baby’s needs and care, I attended classes offered to NICU parents by health professionals. The topics varied such as respiratory care, nutrition, and development. The classes were also part of the March of Dimes NICU Family Support program.

I wanted to expand on the information covered and found a neonatalogy text book in the hospital’s health sciences library. I had plenty of time to read and slowly worked my way through it. I read about the pulmonary surfactant my baby received. The book explained that the March of Dimes had played a role in its research and development.

One morning, around a month into Charlie’s NICU stay, I found it particularly difficult to drag myself into the hospital for yet another day. I couldn’t eat one more bite from the hospital cafeteria, spend one more minute in a very confined space, or withstand one more alarm in the clamor of the NICU. My morale was at a low point. When I finally trudged up to the NICU that morning, a basket with boxes of cookies (provided by the NICU Family Support Program) greeted me in the NICU waiting room. It sounds silly, but the small gesture rejuvenated me. I wolfed down a few cookies, scrubbed up, and resumed my daily bedside ritual.

Charlie came home after three very long months. But, contrary to popular belief, coming home doesn’t mean “it’s over”. It was merely the beginning of another chapter. Fortunately, I am able to connect with other NICU parents for support via the March of Dimes Share Your Story website. Recently, I was able to attend the annual gathering of the website’s users. It was wonderful to meet the other users face to face. I am in awe and inspired by the remarkable people I met.

The story does not end here. I continue to be in contact with the NICU Family Support Specialist (as well as one of the moms I befriended in class). The NICU support specialist was crucial during my NICU parenting journey. Among many things, she was a guide through my NICU experience, my first connection to the preemie community, and introduced me to preemie parenting life. Most importantly, she helped me rediscover my voice and empowered me during a time I felt I had been broken.

I am proud to say that we are a March of Dimes Ambassador Family. I want others to know what the March of Dimes does without having to experience the NICU. Being an ambassador is my way of saying thank you for what we have been given. If anything, I hope to make things better for the NICU families behind us by sharing our journey.

If you’d like to support our 2014 March For Babies team, you can do so at our team page located here.

Charlie at last year's March For Babies.

Charlie at last year’s March For Babies.


Quality Of Life: This Preemie Mom’s Perspective

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.

Recently, I have read many articles and blog posts addressing quality of life issues. While I was hesitant at first to weigh in on the matter, I thought I should write a post rather than comment on every article or post. It is an incredibly complex issue and I want to share my thoughts.

A few years ago, if someone would have told me that I was going to be a special needs mom I would not have believed them. I thought there was no way I could do it. I believed that it takes a special kind of person who is incredibly patient, understanding, and strong. In short, anyone who was not me. It turns out that I was wrong, it simply takes a parent.

I have written about a conversation I had with Charlie’s NICU nurse. While I was concerned about the long term consequences of Charlie’s premature birth, she described a severely disabled baby and the parents. I do not remember the point she was trying to make. But I remember thinking, “If my baby can only hear, then I will play music for her.” It was then that I had made the decision to focus on what my baby can do and to engage with her based on her abilities. After which, I was no longer afraid of my baby’s future.

Later, I remember sitting in the NICU waiting room while on the phone. Someone had asked me, “What if something is wrong with her?”  I tried to explain, “She is my baby and has medical issues. I don’t see a disabled or special needs baby. I see my baby.” First and foremost, I see Charlie and her strong personality.  All the therapy, the orthotics, doctor appointments, and special considerations are secondary. While I sometimes grow frustrated or worry about some of her health concerns, I am incredibly grateful that she is here with us and that I have the privilege of being her mom.

I do wish I would have carried Charlie to term, but it did not work out that way for us. Because of her early arrival, our lives are much different, more complicated, and more challenging than we originally planned or expected. However, because it is hard does not necessarily mean it is bad. Nor, is the quality of our lives diminished.

What I did not realize before all this is that quality of life is independent of ability. I know of many people who are not disabled but, for whatever reason, their quality of life is compromised. To me, quality of life means utilizing one’s abilities to enrich their life through engagement, exploration, and connection to the world around them. I wonder if it is our competitive society that has placed the importance of being the best or most important over basic human desires such as acceptance, belonging, being loved, and participating in leisure activities.

While I don’t know if Charlie will be the best in any field (no one really knows that about their kids), I can say that she is loved, accepted, engaged, challenged, and entertained. Currently, she is unable to tell me if she is happy. However, I hope her frequent laughs and smiles are her way of exhibiting that she is. I know, as her mom, I am.

In summary, I would not say our quality of life is any less due to her early arrival or special needs. Our lives are merely different and that, in itself, is not a bad thing.

Charlie practicing walking at the park yesterday.

Charlie practicing walking at the park yesterday.


I Remember From The NICU

I remember from the NICU:

…the first time I changed your diaper. You were a little more than a week old. Up until then, the nurses had been performing your hands on care as I intently watched. That day, the nurse who was taking care of you unexpectedly asked, “Mom, would you like to change her diaper?” I was panic stricken. Was she crazy? I had never changed NICU Diaper Changea baby’s diaper before. Now, I was expected to learn on a tiny baby with so many tubes and wires? Despite my apprehension, I agreed. There was some fumbling as I learned to change the tiny diaper and maneuver around the tubes and wires. But, it felt wonderful to be able to care for you.

…the first time I held you. I had been told you love the sound of my voice and tried to sing. The realization that I did not know any children’s songs or lullabies did not stop me. I had to resort to the music I knew. While NICU by Phish would have been the obvious choice, One Day by Matisyahu was in my head that morning. I substituted a word and sang “Sometimes I lay under the moon and thank god you’re breathing…”

…the first time you opened your eyes. We were starting to get settled into our new routine. Your dad had arrived from work minutes before the hands on care for that evening. He spoke to you as he changed your diaper and you responded by opening your eyes. We were both mesmerized by the marvel. It was heartbreaking to say good night and leave your side that evening.

11 CPAP Off…the day you no longer needed CPAP. No one had informed us that day was going to be the day. The last we had heard is that you had another week or so until they were going to try to remove it. After scrubbing up, I marched up to your isolette to wish you a good morning. I threw back the blanket that was draped over the top and peeked in. Surprised, I jumped back and muttered, “They moved the babies again.” I looked around to find you. The name on the wall indicated that was your spot but this baby was on a nasal cannula. The confusion was ended when your dad whispered, “I think she got her CPAP off today.” It was the first time we saw your face.

the day you came home. I remember walking into the NICU for the last time. I remember howgoing home the doctors, nurses, and therapists greeted us with knowing smiles. I remember fearing they would change their minds and you would have to stay. I remember that I wanted to laugh, cry, hyperventilate, and be sick all at the same time. I remember your dad placing you in your infant carrier. I remember pushing the button to open those heavy doors for the very last time and walking out together.


Prematurity Awareness Month Post: What Do Those Tubes and Wires In The NICU Do?

NICU babies often have many tubes and wires attached to their tiny bodies. I was lucky enough to have a kind and informative NICU nurse explain the purpose of my baby’s life lines. The following is a description of some of the tubes and wires my baby had in the NICU as I remember it explained to me.

I am not a medical expert and encourage NICU parents to ask their baby’s health care team members any questions they may have concerning care. An excellent resource concerning NICU equipment can be found at this link.

NICU Preemie Tubes and Wires


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