Tag Archives: high risk pregnancy

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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Spoiled Brat

Wow, did I get hit by a nasty stomach bug. Charlie got it too. But luckily, she was only sick for about a day. We did have to cancel weekend plans I had been looking forward to. But, such is life.

This recent stomach bug required several trips to my doctor for things like anti nausea medicine, IV fluids, a different anti nausea medicine, and so forth. After I had beaten the bug and was at my follow up visit, I asked my doctor a bunch of questions about preeclampsia.

My 36 birthday is this week. In my husband and my storybook version of life, we are supposed to have two kids by now. I know I decided a while ago that we were stopping at one. But, in the back of my mind, I’ve kind of clung to a little hope that there would be some way that I could safely have a full term pregnancy. I hadn’t fully let the hope go.

My doctor was kind of my last hope. He’s knowledgeable and I trust his judgement fully. He’s also a little more open to my unconventional ideas than most. He helps me problem solve. If anyone was going to give a thumbs up to pregnancy, it would be him.

I asked him for his thoughts on the matter. He told me what I already knew: Another pregnancy is not a good idea for me.

He continued on to say something like “Adoption is a beautiful option…” My response was to check out. I started babbling incessantly and nonsensically just to cover up the heart break that had just happened. I was barely able to concentrate to discuss the refills I needed. After the appointment, I headed straight to my car still reeling from the blow.

Now, I know absolutely, for sure… that’s it for me. We are done having kids. End of story. Hope extinguished.

I’m not dealing with it well.

I want to cry. I want to scream that it’s not fair. I’m angry at the world for drawing the short straw.

Then, there is the guilt. I know how fortunate I am. I know how much I have. So, I feel guilty for feeling sad, angry, and pretty much anything other than joy.

Plus, I find myself bitter with envy and jealousy of the strangest things. A KeepEmCookin tweet popped up in my feed and my thought was “At least, they made it to bed rest!” How terrible is that? I am ashamed of myself.

Finally, there is the confusion. Why does it hurt so much? Honestly, having my own biological child is not that important to me. I could adopt and be as equally fulfilled. But, being done stings to the core for some reason.

Emotionally, I’m very much like a spoiled brat right now.

Life is not fair and we don’t always get what we want. By now, I’m well aware of that. Currently, I’m trying to figure out what’s next for my family. How do I make this OK for me?


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.

 

 


The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

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10 Things I Am Thankful For

Today’s Blogtober assignment is to compile a list of ten things I am thankful for. Despite all of my rants and complaints, I do have many things for which I am grateful. I think I will start my list with the most obvious but the rest is in no particular order.

I am thankful for: 

1) … Charlie and that she survived.

2) … growing older. It’s a privilege denied to many.

3) …the people in life who carry out random acts of kindness. The ones who take a moment from their lives to go out of their way for other people. Like the gentleman who offered his seat to me on the Metro, the people who hold doors open, the neighbors who make meals for practical strangers, and the countless others who contribute their time, talent, or money. Whether the act is big or small, every act is significant.

4) … for the outdoors. It has been a substantial part of my healing process. No matter how overwhelmed, sick, defeated, or hurt I may feel, being outdoors is a panacea.

5) … my friends and husband. I am blessed with extraordinary friends. I am fortunate to receive their love, understanding, kindness, support, encouragement, and time.

6) …writers, authors, bloggers, and anyone brave enough to write down their thoughts and ideas for others to read. Almost every night, I wind down before bed with a book. I can’t imagine the world without the written word.

7) …my Share Your Story people. I would be walking this post NICU journey alone without them.

8) …music. Through singing, playing, listening, and dancing, it has the power to commiserate, inspire, celebrate, immortalize a moment, transform, and heal.

9) …my animals. I am not sure who rescued whom.

10) …the world. There is never a shortage of places to visit, languages to learn, music to hear, new ideas to discover, people to meet, new foods to eat, and experiences to enjoy. I am incredibly lucky to be an infinitesimal and minute quark in the midst of it all.

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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.

 


One Of The Many Reasons Parenting Magazines Are Not Relatable To Me

Maybe it was because last night I had one of those nightmares in which I was pregnant again. Or, it may be because I know too many women who have lost their babies. Whatever it is, I was turned off to find an article titled “How Social Media Is Giving My Pregnancy Anxiety” in my Twitter feed.

I’ve written before how I don’t relate to the articles in parenting magazines. I’ve had a distaste for them ever since a particular one repeatedly arrived unsolicited in my mail box to explain the exciting things occuring during my pregnancy long past the time my pregnancy was cut short.

I suppose I don’t find the cloth diaper or breast feeding debates interesting because I didn’t really have a choice in either (and I couldn’t care less what other people do). Despite Charlie doing well, I can’t pretend that I fret over what kind of preschool she should attend or the latest (and trendiest) toddler activity.

I wanted to give the author and the title the benefit of the doubt. Maybe the author was concerned for her pregnancy because of all the awareness posts regarding  premature birth and pregnancy complications. I clicked on the link hoping to find some mention of all that.

Nope. It was concern over whether her baby shower would be Pinterest worthy and the appearance of Facebook photos. Once again, another parenting article that I found to be not relatable in the very least.

I don’t understand the whole parenting magazine or website thing. Most of the articles I come across are of no interest to me. However, I do wonder if they would be more appealing had I had a healthy pregnancy and carried Charlie to term.

I simply want to enjoy the time I have with Charlie. One day, I will look back on this time as the best years of my life. I don’t need validation of my parenting ability or do I desire to be the best parent. Secretly, I think we are all messing it up in some way and that’s OK. But, you know what? To Charlie, I’m the best mommy there is and that’s what matters to me.

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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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But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.


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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Weekend At Morgan’s

Charlie played the drums while boosted on my knee.

Charlie played the drums while boosted on my knee.

My college friend, Morgan, recently moved to Delaware. Since her relocation, I had promised to bring Charlie to visit her. With the way our schedules worked out, this weekend was the chosen weekend. The journey forced me to confront some complex emotions because Morgan is twenty five weeks pregnant.

Prior to the trip, I had expected it to be hard. The twenty fifth week was the last full week that I carried Charlie (she was delivered the morning she reached twenty six weeks). I expected to feel envy, jealousy, and a little sadness. But, being with and supporting my friend was more important than any little uncomfortable twinge of emotion. I swallowed back my reservations and braced myself for what may come.

I like the expression on her face in the reflection on the glass.

I like the expression on her face in the reflection on the glass.

Surprisingly, I didn’t need to worry. All I felt was excitement and joy for her. It was precisely the way I felt towards pregnant friends prior to Charlie’s birth. Another sign I’m moving on in life.

The visit was a lot of fun as they usually are with Morgan. She accompanied Charlie and I to the Please Touch Museum in Philadelphia. The museum was an amazing place for Charlie to explore and play. I think her favorite part was the hundreds of rubber ducks on display in a long case.

Additionally, there were several play areas exclusively for children under three. Because of Charlie’s small size and physical delays, designated toddler areas are the very few places in the world where she can explore and play independently. It was wonderful queen_editedsome of the toddler play areas had staff to ensure only those aged three and under utilized the space. Some of the other designated toddler areas did not.

The difference was obvious.

It is frustrating when older (far exceeding the age limit) and much bigger kids enter areas designed for little kids. This defeats the purpose of a toddler play area. Because the older kids are bigger and play rougher, they endanger the little kids by knocking them over, jumping on them, or stepping on them. However, this problem isn’t limited to the museum. Sadly, it occurs in just about every unsupervised toddler spot.

But, I digress.

After we explored the museum, we returned to Morgan’s house in Delaware for the evening. Charlie showed off her farm animal noises before heading to bed. Seeing a friend is always good but, I can’t wait to meet Morgan’s little one.

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Another Reason To Walk

When Charlie made her early arrival, I was angry that it happened to her… and me.

In my grief, I asked questions such as “Why me?” and “Why do I have to be in that minute percentage?” Sometimes, when I’m having a rough day, I continue to ask those questions. The only satisfying line of reasoning that I could provide myself was: I took one for the team.

If someone, out of all the people I know, had to fall in the dreaded miniscule percentage, it’s OK that it was me. We made it through the NICU. Despite my complaining, we are tough enough to handle the therapy and challenges. If it had to be someone among the people I love, it’s OK that it was me. Our lives will go on.

But then…  my beloved next door neighbor had to go on bed rest and one of my friends went into preterm labor tonight.

NO! That is not part of the deal! That is not how it is supposed to work!

Tonight, I lost the only answer I had to the “why me” question.

It’s not fair that it happened to me or any other woman. It has to stop.

Tonight, I have found another reason to walk.

I’m tired of seeing my friends suffer.

Charlie at last year's March for Babies.

Charlie attended her first March of Dimes March For Babies last year. Team Charlie Allene is half way to their goal. You can help end premature birth with your support of Team Charlie Allene by clicking here.


Finding The Something Good

I do not believe that everything happens for a reason. However, I do believe that something good can come from the circumstances of Charlie’s early birth (other than Charlie, obviously). It wasn’t until recently that I figured out what it was.

I managed to hold it together while I was hospitalized at twenty four weeks with severe preeclampsia. But, Charlie’s birth at 26 weeks shattered me into a million pieces. Afterwards, I laid motionless in recovery devastated by sadness, raging with anger, and envious of all the women around me with crying newborns. For the first few weeks, I could hardly breathe and sobbed uncontrollably.

March of Dimes NICU Family Support helped me begin to piece myself back together again. I became empowered, stronger, braver, and began healing.

The journey is not over for us. However, I am far enough along in my journey that I can begin to give back. I say “I’m listening and I care.”  to other mothers affected by premature birth, birth defects, or loss. I support and cheer for fellow NICU mothers. I speak at events when asked to give a face to prematurity. I share our story.

While I’m honored to do all of these things, I am further privileged for my family to be this year’s March of Dimes Ambassador Family for the Northern Shenandoah Valley. Our walk is on May 31 (two days after Charlie’s second birthday). The button link to our fundraising page will be in the tool bar on the right until the walk.

I would like to reach our goal but I’m just as happy with people giving to any team. The important part is to give (every little bit matters) to March of Dimes and support all babies.  In case you missed it, I have written a post about the many ways MOD has helped us specifically.

In my healing process, I have the need to turn something so devastating in to something good. If reaching out to others, sharing our experience, and helping where I can is that something good, then so be it. I have been given so much love and kindness to pass on.

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This year’s Northern Shenandoah Valley March of Dimes Ambassador


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


Six Important Posts Written By NICU Parents

NICU Preemie CardLong before I was capable of stringing together words for a blog, I lurked on other sites. Some posts were so profound that they stand out in my memory. I often find myself directing others to these posts. The following posts are extraordinary:

1) Dear New Preemie Parent – Tatum at Ain’t No Roller Coaster is an amazing blogger with many powerful posts. This particular post is beautifully written, full of truth, and poignant.

2) Leaving The Hospital Without Your Baby – This post is actually an excerpt from the book titled Preemie Primer. It describes the experience of being discharged while your baby is in the NICU.

3) The Reasons Why  – I enjoy following Laughing, Living, Weeping quite a bit. In The Reasons Why, the author bravely describes the experience of NICU burnout with striking honesty.

4) Take That Coupon And Shove It, Lady…  – Following Normal Is The New Boring is a fun adventure. This particular post by a preemie mom made me laugh out loud. I think we have all been there.

5) How To Start A Preemie Support Group – I really like Urban Flowerpot. I chose the linked post because I have answered many forum questions with it.

6) What Not To Say – The author of Life With Jack lists what not to say to a preemie parent while providing helpful suggestions of what to say.

NICU parents, do you have any favorite posts or articles that you would like to share?


Perchance To Dream

This week is packed with the usual appointments and preparing for our weekend. To keep up with the pace, I have been drifting off while Charlie naps. Yesterday, my otherwise blissful nap was interrupted by the sound of a helicopter hovering overhead. Startled awake, a few seconds passed before I realized that I was not in the hospital hearing the sound of life flights. Over a year later, my sleep continues to be impacted since my admission to the high risk pregnancy unit and Charlie’s birth.

Before Charlie’s birth, I would not have noticed the sound of a helicopter. It was a reoccurring background noise in the hospital that I had become acclimated to. It was when Charlie came home that I recognized the sound of a helicopter would awaken me from sleep in a state of confusion.

I was visiting a friend the first time it happened. She resided near a large university medical center. Late one night, a hospital bound helicopter passed over her house while I was sleeping. I woke and required a moment to recognize that I was not at the hospital. The sound has elicited the same response ever since.

In general, I sleep much lighter than I used to. The slightest sound will jostle me out of my sleep. Thereupon, I find it difficult to fall back asleep. If Charlie wakes several times in a night, I am awake the entire night.

In addition to the wakefulness, I have odd dreams. Sometimes, I jolt out of my slumber in a panic from dreaming that I am pregnant again. Often, I have strange dreams about the NICU, the hospital, or Charlie having to return to the hospital again. Each time, I am relieved to wake up and realize that it was only a nightmare.

I am unsure of how to resume my once peaceful sleep. However, things have slightly improved recently. For example, the bizarre dreams are less persistent.

I am curious.  Am I the only one with sleep changes? NICU parents, how has your sleep been affected?

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Charlie naps.


Charlie’s Open Crib

The day Charlie was moved to an open crib.

The day Charlie was moved to an open crib.

One year ago today, Charlie graduated from her isolette and was moved to an open crib. It was an exciting time for us. We decided that it was time to prepare for Charlie’s imminent homecoming.

Until the week following her transition to an open crib, there was not an aspect of our home that was ready for a baby. Despite Charlie’s early arrival two and a half months earlier, we procrastinated with our preparations. It would have been too painful to look at an empty crib or a superfluous changing table each day. Furthermore, I did not want to have to disassemble an unused crib if Charlie did not come home. It would have been too much to bear.

Our preparation for Charlie’s homecoming was instigated by her move to an open crib. The ensuing week, we cracked open the boxes and packages of her nursery furniture. My husband assembled various furniture pieces and baby items. I washed, folded, and put away baby clothes and blankets. We laughed at the ridiculous number of pieces her furniture arrived in while my husband assembled it. We delighted in the cute outfits she would soon wear. It finally felt safe to anticipate her home coming.

Charlie, a year later, in a picture taken by Monica DeMariano.

Charlie, a year later, in a picture taken by Monica DeMariano.


By The Book: The Story of Charlie

So far, I have been rather vague when referring to Charlie’s birth story. Recently, I have received many questions about it. I think now is a good time to tell the story of Charlie.

My husband and I decided early in our marriage that we were not baby people. We were content being animal people. I provided a long list of reasons why we were not baby people whenever someone broached the subject.

A few years into our marriage, my husband started a new job. It seemed like everyone at his office was having a baby. That was how he caught baby fever.

One evening, he asked me about wanting a baby. I took a deep breath as I prepared to rattle down my standard list of reasons why I did not think I should be a parent. However, things had changed over the past few years. I had grown quite a bit.  I no longer had a  list of anti baby reasons. In fact, I could not think of one good reason. We considered maybe babies were in our future afterall. We decided to try.

I had written off having babies as something for other people. I never really paid attention to the topic of pregnancy. It was completely off of my radar.  When ever a pregnancy show came on TV, I’d change the channel. I had not read anything about pregnancy or child birth. At that point, the only thing I knew about babies was how not to have one.

To educate myself, I bought the Mayo Clinic book on pregnancy. It became my instruction manual. I followed all the advice and suggestions within its pages. I took prenatal vitamins with folic acid, had a physical exam, visited the dentist, and talked to a doctor before I attempted to get pregnant.

After all of that, it took about six months for me to get pregnant. There were plenty of negative pregnancy tests. From the beginning, things were complicated. I discovered I was a few weeks pregnant  the day after I had herniated a disc. We thought my back issues were going to be our biggest obstacle.

My husband and I followed my pregnancy in the book week by week. We liked to learn how much our baby had grown and developed. I remember the week that we read our baby was the size of a grape. I very distinctly remember reading the line, “Preeclampsia occurs in about 6-8% of pregnancies.” I flipped past that section. I thought there was no way it could happen to me. I was sure things would be fine because we followed all the rules and instructions.

I kept up with the prenatal appointments religiously. The nurses at the office thought it was sweet my husband attended each one with me. I followed all of the doctor’s suggestions. However, there was always something “not quite right” with my pregnancy. There were a few odd vitals or lab results. As a precaution, I was tested for pregnancy complications such as gestational diabetes.

At twenty weeks, I started seeing spots occasionally and my blood pressure started to climb. My OB/GYN was slightly concerned.  However, my symptoms were ambiguous. There are many changes in the body during pregnancy. Those symptoms could have been just one of those changes. To be safe, I started having more frequent appointments.

That same week, I had my 20 week ultrasound. Everything appeared normal. But, Charlie was breech and the tech could not see her spine. I was reassured that everything was normal and instructed to return in two weeks so that her spine could be documented.

At twenty two weeks, my husband and I returned for the follow up ultrasound. Charlie remained in the breech position and would not turn. We laughed about how stubborn she was and made jokes. To make her point, she kicked back when a doctor tried to get her to turn. We were scheduled to return in two weeks.

I was at twenty four weeks during my last prenatal appointment. It was early May. I was out of breath and sweating profusely. I felt miserable. My blood pressure had climbed even higher. After the exam, my doctor called my husband and me back into his office. He mentioned preeclampsia as a possibility.

My husband and I kind of shrugged it off. We thought that there was no way that could happen to us. We told ourselves that it was just another scare. We did everything by the book and were convinced everything was going to be fine. We hurried off from that appointment to the third ultrasound.

As we sat in the waiting room before the ultrasound, we joked about whether our stubborn baby had turned. We were excited about getting to see her again. We may have even been a bit cocky as we giggled in the waiting room.

The ultrasound was supposed to take a couple of minutes. They just needed to see her spine. My husband joked with me about our baby while I lay on the table  as the tech worked. We waited to hear that everything was fine and I could get dressed. Instead, the tech asked if I had been losing fluid. She started taking measurements.

A short ultrasound turned into a lengthy ordeal. Our jovial demeanor quickly changed. I became more nervous with each question she asked. She left the room several times to consult with the doctor. I was confused. What was going on?

As the ultrasound concluded, the tech instructed me to get dressed and wait for the perinatalogist. It was the first time that we had formally met the perinatalogist (she had tried to turn Charlie at the previous ultrasound). She explained asymetrical IUGR (growth restriction) and oligohydraminos (low amniotic fluid). I knew that it was not good news. However, I was not sure exactly what it meant. She sent us home with directions to have pretty extensive lab work performed over the next couple days.

That evening we had live jazz dinner plans with some friends. My husband wanted to cancel. I insisted that we go. I wanted one last fun night with my baby. Something in me knew that it was my last free night of pregnancy. I wanted to have a special night with Charlie. I fed her a good meal, surrounded her with the love of good friends, and let her hear live jazz. It was the only thing that I knew to do for her.

After we returned home from our night out, I started getting a headache. I assumed it was from stress and worry. It intensified over the course of the next day. There was nothing that helped it. In addition to the headache, I had horrible indigestion that did not respond to treatment. The day after the last ultrasound, I was supposed to have finished up my blood work and turned in my 24 hour sample. Instead, I found myself in the emergency room.

The doctor on call explained that I had preeclampsia. He continued on to say that I may have to deliver that day if my blood work indicated it. I sobbed. I had never heard of babies being born at 24 weeks. How could this have spiraled out of control so quickly?

Fortunately, I did not have to deliver that day. I was admitted to the high risk perinatal unit. I received a series of beta methasone injections to help develop Charlie’s lungs. The perinatalogist explained that the goal was to keep me pregnant until thirty two weeks. I was ordered strict bed rest in the hospital in order to reach that goal. I was not going home until I had my baby.

Every other day, a blood sample was taken. On the days that blood was not taken, an ultrasound was performed. The medical team watched as the preeclampsia increased in severity. During which, there was a battle with my insurance. My insurance held the opinion that  I should be monitored on an out patient basis (an impossible task). The battle ended when my kidneys started to fail very quickly.

It was on Memorial Day that my OB/GYN walked into my room and announced, “If it is up to me, we deliver today. I still have to consult with the perinatalogist. I am no longer comfortable continuing this pregnancy.” The perinatalogist decided it would be best to wait one more day. Charlie would reach 26 weeks gestation. Her survival odds increased quite a bit that day.

The morning that Charlie turned 26 weeks, the ultrasound had indicated reversed end diastolic flow in the umbilical cord (more was coming out of Charlie than was going in). Similarly as threatening, I had developed HELLP.

Due to preexisting conditions with my spine, the anesthesiologist was unable to successfully start an epidural. She tried five or six excruciating times. The lidocaine was ineffective and I felt each attempt.  I was scared for my baby, felt like I failed  because the epidural would not work, and swore that I was being tortured. There was not enough time to continue trying. It was decided that general anesthesia had to be used.

I missed Charlie’s birth. She weighed 790 g (a little under one pound twelve ounces). My husband got to walk with her isolette as she was transported down to the NICU. He said, to everyone’s surprise, she screamed the entire way.

Afterwards, I was under observation as I received magnesium sulfate. I was confused and delirious. My husband took a picture of Charlie shortly after her birth and showed it to me. That was how I saw Charlie for the first time.

The one thing I do remember is from the evening of her birth. My husband and I discussed Charlie’s birth announcement. We were unsure what to do. We were afraid how we would feel if she did not survive and worried about how painful it would be to answer questions.

We came to the conclusion that Charlie deserved to be loved and celebrated no matter how long she was here with us. Her arrival was announced the same way as it would have been if she would have made it to her full term.

I was not well enough to visit her in the NICU until two days later. That is a story for another time.

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This is the first picture my husband took of Charlie on the day she was born.


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