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.

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.

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.

 

 

Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.

 

 

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.

 

 

 

I Scream, You Scream, Charlie Speaks For Ice Cream

I had a feeling it was going to be a great semester for Charlie’s speech. I knew in the second week that Charlie’s student therapist understood Charlie. As sweet and cute as Charlie is, she is highly energetic and difficult to focus (more so than most two year olds).  She can be a handful.

By the second week, the student therapist had learned to work with Charlie amazingly well. I was impressed.

This is what part of the screen looks like when I watch from the observation room.

For most sessions, I sit in the observation room with the other parents and watch the session over the cameras on a computer screen. I did this initially in case Charlie became unruly or melted down. I wanted to be able to rescue the student therapist if needed. Now, I just sit there, read, and occasionally glance up at the screen.

What goes on during speech therapy? A variety of play activities. Each semester, I’m always impressed by the students.

If Charlie starts to run circles in the room, the student therapist patiently says, “Oh, you need to run? OK, lets go to the sensory room and bounce on the trampoline.” While Charlie bounces, the student therapist sings a song about bouncing with her.

In another activity, Charlie pretends to shop and has to ask for each item she wants to put in the cart. In Charlie’s favorite activity, she plays basketball where she has to ask for the ball and to be lifted up to the hoop with “Want up!”.

Last session, she played a considerable amount of time with a fake ice cream cone. I noticed it when I looked up at the screen. I thought it was odd because Charlie has never really had ice cream. She gets the non dairy stuff when we go get ice cream. Not the type of ice cream she was playing with while learning to say “ice cream”.

Later that evening, Charlie, Charlie’s dad, and I grabbed a quick bite to eat. After we were finished, we passed the yogurt store where Charlie gets her non dairy treat. She pointed and exclaimed, “W-want ice cream! Ice cream!”

I was stunned.

We actually understood what she was saying! How did she make the connection that her non dairy treat in a cup was the same as that creamy looking cone she played with earlier?

We were obligated to follow our rule. If Charlie uses her words to ask for something, she gets it. She got her non dairy version of ice cream that evening.

Overall, I’ve noticed significant improvement with her speech. Charlie experiments more with two word phrases such as “Bye daddy!” and we can understand more of what she says.

Feeding is finally moving forward as well. With the introduction of erythromycin, she eats more than two bites, doesn’t vomit, and her reflux is gone. She still has difficulty tolerating some textures and with chewing food. However, I’m relieved that she is no longer stuck.

 

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.

Let’s Do This!

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

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

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

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

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

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

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

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

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

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

Imagine This

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

Imagine 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.

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.

Imagine 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.

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.

Photo Credit: Monica DeMariano

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.

Meeting Charlie

I met Charlie two days following her birth. The two days prior to our reunion are a blur in my memory. I remember being confused and disoriented. The vein my PCA pump ran into blew, I had an allergic reaction to the tape on my IV sites, the magnesium sulfate felt like a punishment for Charlie’s early arrival, and my back ached from the numerous failed epidural attempts. After everything settled down, I was deemed well enough to see my baby.

My wheel chair ride down to the NICU is a hazy memory. My husband expertly rolled my chair through a maze of hallways and elevators. Once we reached the NICU, I had to fill out a questionnaire and scrub up for the first of thousands of times. Even now, the smell of the hospital soap reminds me of that first hand washing. Finally, I was permitted to pass through the heavy doors into the NICU.

My husband pushed my chair past one isolette after another. With the constant sound of alarms, rhythmic hum of the respirators, and rows of glowing isolettes, the NICU did not look or feel like a nursery. Instead, it appeared as something out of a sci-fi story. My wheel chair ride ended beside a glowing isolette. Within it, Charlie slumbered.

I rose from my wheel chair, gingerly lifted the blanket draped over her isolette, and anxiously peered in. Through all the tubes and wires, I could see she was beautiful and perfect. Gently, I placed both of my hands on her isolette. It was the closest I could come to holding her. We were not allowed to touch her yet. Afterwards, I slumped into my wheel chair, placed my head in my hands, and sobbed.

I was overcome and inconsolable. That was not how things were supposed to be. I was heartbroken at the loss of our expected birth experience. I was grief stricken that my baby now had to fight for survival. I ached to hold her or touch her. I was frightened for my baby. I was angry at the numerous strangers in the room for being present for a very private moment. I felt robbed of the pure excitement and joy that I expected to feel when meeting my baby. I was devastated.

A nurse walked over and explained how Charlie was doing. My thoughts were distant. I did not really hear or understand anything she said. However, the moment was important. It was my introduction to the nurse that was among a handful of people that were key to my NICU survival.

Charlie’s first few weeks are foggy. During that time, I did a great deal of crying and functioned on auto pilot. Several days later, I was discharged from the hospital. I decided that I was going to do the only thing I could do for Charlie… be with her. I wanted her to know that she did not have to battle on her own. Nor, did I want her to die alone.

Every day, I held my breath and watched as Charlie grew. Luckily, I had an unexpected cast of characters (such as the nurse) that provided much needed emotional support.

I find it remarkable that I had lived my life without knowing what it meant to be overwhelmed with emotion until the day I first met Charlie. The sights, sounds, and smells from the NICU often act as a reminder.

I took this picture the first time I saw Charlie. She weighed 708 grams.

Another Anniversary or How Charlie Lost Her PEEP

Today is Charlie’s CPAP removal anniversary. Last year, Charlie was taken off of CPAP and put on a high flow nasal cannula. There are so many things I remember about that day.  Mostly, I remember the emotions of excitement, joy, and even a little anger.

The day before she was removed from CPAP, I had spoken with a neonatalogist. He provided a time estimate for Charlie’s progress. He said that it would be about a week before an attempt was made to move Charlie to a nasal cannula. He wanted to be sure that she continued to gain weight and not waste calories on breathing. I left that evening with a plan to return late the next night for a short visit.

My husband and I avoided the other babies’ weekend visitors by visiting at odd hours. We had more privacy and the nurses were more available when we visited during off times. That Saturday, we arrived late in the evening to a nearly empty NICU.

After performing the scrubbing and sanitizing ritual, I marched up to Charlie’s isolette and threw back the blanket covering it. Her CPAPless face was peering back at me. Surprised, I jumped back. “They must have moved around the babies again”, I muttered to my husband. On a few past occasions, they had shuffled the babies around and did not mention it until I could not find my baby.

I looked around for a nurse to guide me to my baby’s new location. No one came hurrying over to show me where my baby was. Confused, I looked at the name plate on the wall and the charts. It was our name. However, I was sure this was not our baby. Our baby wore a CPAP mask and hat. I started to panic.

My husband placed his hand on my shoulder and quietly said, “I think she got her CPAP mask off today.” Finally, I realized that the mystery baby laying in front of me WAS Charlie. I put my head in my hands and started sobbing.

Up until then, it was too much to hope that she would make any forward progress. For two months, I had become accustomed to the simple wish for minimal backsliding. I was so used to complications that I had not dared to dream of the possibility of Charlie improving.

That evening was the first time that I felt there could be an end to Charlie’s NICU stay. It was the moment that it occurred to me that “this too will end”.  I felt a mix of relief and happiness. I was overwhelmed.

The float nurse made her way over to us. I asked her why nothing was mentioned to us concerning the cannula. She explained that often parents are not told that they are going to try such measures. Sometimes it is done to spare parents disappointment if the attempt fails and other times it is just an oversight.

Hearing the explanation made me angry. Who are these people who determine that I need to be treated like a child? Why do they get to decide what I can and can not handle? If the doctor forgets to mention something this big, what else are they not telling me? I did not feel as if I was a participant in Charlie’s care (something that NICU parents are constantly reminded to be). I felt like I was being pandered to or pacified.

Although the anger affected my future trust with some of Charlie’s health care team, I did not let it ruin our evening. We held Charlie, doted over her, and took pictures. That night was the beginning of the end. Ten days later, Charlie was transfered to a different NICU as a feeder-grower.

One of the nurses put the bow in Charlie’s hair. This is how I found her in the isolette.

Intimidated

This evening my husband, Charlie, and I went out to get a bite to eat. In the midst of dinner, my husband asked if I would like to attend a work party tomorrow. It will be the first one since Charlie was born. I could not help but feel intimidated.

A Northern Virginia office party? That was part of our former life. I do not fit in there anymore. My confidence has somewhat disappeared along with many other things due to Charlie’s early arrival.

For those of you unfamiliar with the DC metro area, it is the land of over achievers. Competition is fierce, having the best and newest of anything is important, near perfection is expected, and insanely overly busy schedules are sources of pride.

I am not sure if I ever really fit in when we lived there. But, I managed about somehow. After Charlie came, I felt alien to my surroundings. Maybe, that was a factor in our decision to move away.

The party tomorrow intimidates me on many levels. First, my appearance will be rather lacking. I have not been clothes shopping since prior to Charlie’s birth. Missing out on the third trimester did not spare my hips from spreading. As a result, none of my decent clothes really fit anymore. My hair is shaggy as I attempt to grow it out. Point blank, I kind of look like I live in the mountains. 🙂

Normally, I would not care about such things. However, I feel in situations such as these it marks me as wounded prey.

Additionally, I dread hearing the usual questions and comments. I worry that I will not be able to relate to conversations about day care and top private school waiting lists.  There is the envy and jealousy that nips at me when I hear other parents complain about ordinary parenting stuff. I do not want to have to fight back anger when other parents tell me how they did everything right with the unspoken assumption that I had to have done something wrong to cause a micro preemie birth.

I have only recently dared to tip toe back out in to the world. I am not sure that I am ready for something like this.

Furthermore, I am afraid of embarrassing my husband with my social awkwardness. I am fretful of stirring up painful emotions that have only started to heal. I am anxious that I will realize that I really am as disconnected from the rest of society as I feel at times. I am worried the evening will be an aching reminder of the lost life we planned.

Despite all of my apprehension, I have decided to go. Through all the ROP exams, synagis injections, and ng tube placements, I asked Charlie to be brave. If she can do that, I can attend a mere party. It certainly is not one of those few things in life that are a matter of life and death. At most, it will sting…  but my ego will recover.

Besides, it is time that I take back some of the things I lost to having a premature birth. My confidence is a good place to start. Who knows? I may even have a good time tomorrow evening.

Fingers crossed, here goes nothing…

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.

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

Survivors

When Charlie was in the NICU, I met and was befriended by another NICU mom (and her family). We celebrated our babies growth together, supported each through the trials, laughed about annoyances of hospital life, and even attended NICU classes together. Most importantly, we were able to make each other smile.

Meeting the mom and her family was a turning point in Charlie’s NICU stay for me. Their presence and friendship helped me to work past the grief that I was drowning in. It provided some nuance of normalcy and I no longer felt alone.

Today, Charlie and I were reunited with that NICU mom and her family to celebrate her baby’s first birthday. We had much to celebrate.

After surviving two major surgeries in addition to being premature, her baby is thriving. She has dwarfed the size that I remember her being.

The family were among the few visitors Charlie received in the NICU. They understood how far she had come.

It was comforting for me to be able to discuss things like AFOs, specialists, feeding strategies, PT, and swallowing issues over a plate of potato salad. I did not have to convince people that it was OK that we were dealing with such issues. It was helpful to learn new ideas from their experiences.

I loved how it was interwoven in to the conversation with other bits and pieces about our lives. Charlie and I spend a significant amount of time attending appointments and therapy sessions. However, our lives are not limited to merely those things. It was nice to share common ground and for them to have been there with us in some way from nearly the beginning.

At the end of the afternoon, the other NICU mom and I watched the babies play. She remarked how it had been a year since we first met in the hospital. I found it peculiar. A year seems so short to describe a journey that has felt like an eternity. I did not dwell on the thought long.

I was enchanted. There was something so magical watching those two babies play together when a year ago we were pleading for their survival.

This Very Moment

When Charlie was in the NICU, clueless people loved giving advice. One of the things that really got under my skin was when people would tell me not to spend so much time in the NICU with her. I was repeatedly told, “She does not know when you are gone.” and “You should take advantage of this and get some rest.” It was strange how people viewed it as a vacation of sorts. Like I stated, they were clueless.

When Charlie was having GI troubles, I was told by a few neonatalogists that it was a preemie thing that she would out grow. It seemed like I was supposed to be consoled by knowing that she will feel better in the future. Why was some optimistic prophecy supposed to make me feel better? What about right now?

I am concerned with my baby’s present. Right now matters! While I consider the future and strive for the best out comes, I presently want her to have a good quality of life as well. What if this is all she has? What if it is all I have? There are no guarantees in life. I’m not holding my breath and waiting for a prediction to come true. We are going to figure out how to make the best of what we have, right now… This very moment.

Parenting in the Spotlight

We had to sit for a moment in the waiting room before Charlie’s first pediatrician’s appointment. There was one other mom and child there. The mom was supporting the child by the arms as the child stumbled around the waiting room.

When the pair worked their way to our location I asked “How old is she?” in order to break the awkward silence. The mother replied defensively, “Two years but she’s not walking because she had hip dysplasia.” I confessed that I didn’t notice that she was supposed to be walking. I explained Charlie was breech and she is being watched for hip dysplasia.

With that disclosure, she warmed up to me as if we had been friends for years. It was my first outing with Charlie after her NICU discharge the day before. I have a better understanding of that encounter now that I find myself concluding my answer to the age question with “but she was born at 26 weeks.”

Every parent at one point or another comes across someone that is critical of their parenting style. Many also feel pressure and stress from outsider opinions, ideas of what is best, or “the right way” to parent their child. I’ve heard or witnessed many horror stories. With a preemie, it feels like I have been parenting on stage since day one.

For the first 87 days of Charlie’s life, there was always someone watching while I held my baby, fed my baby, or changed my baby’s diaper. Currently, she is followed by multiple health professionals that follow every aspect of Charlie’s life. That is a stage that I don’t mind performing on. I have become quite comfortable with the scrutiny of medical professionals. I appreciate most of their suggestions or ideas. It is their job. I learn from them and find them useful. They help me understand my baby and parent her more effectively.

I wonder… why, with all this professional advice, other people feel they are the expert on my baby? I, like most parents, am flooded with unsolicited advice. This is the spotlight that I could do without.

I get criticisms on feeding, her size, and how I soothe her. I hear comments like “Babies need to be exposed to germs to build their immune system.”

People disclose obvious baby care advice as if they are privy to the information. I am critiqued on her involvement in Early Intervention. I’ve heard that I hold my baby too much or the wrong way. I am told by everyone, who must have read the same Web MD article, “Preemies catch up by the age of two”.

Suddenly, everyone has become a preemie expert and an expert on my baby. These people don’t understand the challenges micro preemies face. I am frustrated when what we have been through is dismissed as “no big deal”.

I will most likely smile pleasantly and nod in response to the annoyances. I save my strength to fight for insurance approvals, to fight for program qualifications, and to endlessly search for ideas that will work for my baby.

I’m turning off the spotlight. I’m making this known: If I want to know, I will ask.

Otherwise, keep it to yourself. I had a plan how this was supposed to all work out. This is plan B or plan C or even plans D, E, or F. Plan A didn’t work for us. Quit reminding me or making me explain why.

Many parenting decisions were made for me out of medical necessity or my baby’s preference rather than my decision.

Furthermore, maybe I don’t want what you want for my baby. I don’t agree with or think the way you do. There are more ways than one right way to do things.

Finally, I know how to do things that I wish I didn’t know about. In order to take my baby home from the NICU, I had to learn how to put in an NG tube (in case she wouldn’t feed), how to visually assess my baby’s O2 saturation, how to give an injection (in case she continued her epo treatments long term), respiratory care, etc. I took optional classes in infant development and infant massage. Basic care advice was covered thoroughly in the early days. I don’t need a refresher.

Delayed Gratification

When I was pregnant, we had a plan worked out. It was a road map we were going to follow the next couple years of our lives. We had decided on this great home in Falls Church. We pictured doing our grocery shopping at the Whole Foods across the street, taking Charlie to see the apple blossoms, and going to the new children’s museum. However, Charlie had other plans.

Charlie came earlier than I could have imagined. I did not have the opportunity to take pregnancy pictures or wear the maternity clothes in my closet. I didn’t get to spend the summer bobbing in the pool as I pictured. Her birth announcement was mixed with fear rather than filled purely with joy. The life we had planned and envisioned would no longer work. We went back to the drawing board.

Instead of Falls Church, we chose a home in the mountains. The mountains, country, and forests had recently become our favorite vacation spots with Charlie. We had been through enough… We wanted our daily lives to seem like vacation.

We are in the midst of designing the rooms in our house. Decorating Charlie’s room and playroom has a particular significance. This is how it was supposed to be. Granted, I would have preferred doing this with Charlie in my belly rather than on my hip. I am delighted that we get to have this experience.

With all the losses during my pregnancy experience, I desperately cling to the things I still have. These are the things that can still go according to how I imagined them upon discovering my pregnancy. The timing may be off but it is every bit as wonderful.

Guarded Hope

It wasn’t until something that I wanted so badly was completely out of my control that I understood what it meant to hope. I didn’t know what hope was until it was all I had.

When I found myself in the emergency room, I remember the doctor explaining to me the gravity of the situation. He said that I had severe preeclampsia. I would have my baby soon. I was only at 24 weeks and assumed he meant somewhere closer to 30 weeks. I have heard of 30 week babies being delivered. However, the doctor wasn’t finished. He continued to say that if my blood work did not look good, I would have to have my baby immediately. I cried while I waited for those results. There was nothing else I could do.

Fortunately, I was given a reprieve. I was allowed to carry on with my pregnancy while on hospital bed rest. In the best case scenario, I would be able to carry until 32 weeks. I was afraid to hope for 32 weeks. I could only hope for my baby to reach 1 kg before delivery.

My baby was delivered at 26 weeks. She weighed 790 grams.

The first time I saw her, I was only able to hope for her survival. Each day, I stroked her head and hoped that she would make it to the next. Gradually, she got stronger. It seemed too greedy to hope for her to come home. Instead, I settled on hoping for improvement each day. There were days, I wasn’t so lucky. On those occasions, I regressed to hoping for survival.

That is how Charlie’s NICU stay went. I hoped one day at a time while constantly being reminded “Never trust a preemie.”

One day, her doctor used the word “home”. It was too much. He exceeded what I could hope for. I started crying in the middle of the conversation. I knew she would come home eventually. However, up until that moment, I felt like it was too much to hope for.

We left the NICU almost six months ago. I continue to find myself hoping. Due to her developmental delays, I find myself hoping for each milestone or for therapy goals. Some days, I hope for and delight in the slightest signs of progress. I was asked to set Charlie’s long term goals for Early Intervention. I find this task to be impossible.

What I want and what to hope for are two very different things. I want her to “catch up” by the age of two. I want this whole preemie thing to be behind us. I want it to be a history and nothing more. But, I can’t hope for that yet.

I can hope that she will walk. I can hope that the momentum gained in physical therapy will continue. I can hope that she will learn to eat.

To me, hope is a double edged sword. It is what is left and what I cling to when things are out of my hands. Conversely, hope is a reason to carry on when jaded and weary. It can be crushed in an instant. After so much loss and heartbreak, it is important that I guard it. I look forward to a time when I can hope without restraint.

Adventures In Pumping

I hadn’t fully decided whether I was going to formula feed or breast feed when I became pregnant. Because she was three and a half months early, I committed to breast feeding. My decision was based on such factors as the lower incidence of NEC among babies that received breast milk and shorter NICU stays on average for breast fed preemies. I was informed of all these things by one of Charlie’s doctors the first time I saw Charlie… Two days after her birth.

After the consult, I was deemed well enough to pump. So began my over zealous attempt at pumping. I was aware that it took a few days for the milk to come in. Like a well disciplined soldier, starting from two days after Charlie’s birth, I pumped every two hours as the lactation consultant instructed. The lactation consultants would visit twice a day and ask “anything yet?” Finally, after three days of pumping… COLOSTRUM! It was only a few drops. A tenth of a mL according to the syringe used to collect it. However, it was enough to encourage and further motivate me.

After a week of pumping, I was finally discharged with a hospital grade breast pump. On the way home, I bought a small cooler to transport the copious amounts of breast milk to the NICU that I was sure I was going to produce. I stocked up with Snappies and syringes in which to collect the milk. I was ready to be a dairy cow for my baby.

I followed the instructions from the lactation consultants flawlessly. I pumped every two hours with a rented hospital grade pump for at least fifteen minutes. The drops of colostrum had changed to drops of milk. However, it was never more than a couple mL each attempt.

Every morning, I turned in my carefully labeled syringes before scrubbing up to go visit my baby. There always seemed to be some other mom turning in what seemed like gallons of breast milk at the same time. They were the same moms that I would see with over flowing snappies in the pumping room. I hated those mothers. I envied those mothers.

The first two weeks, no one other than the lactation consultants paid attention that I was only making a few mL a day. It changed when Charlie was being taken off TPN. The doctors were going to try a transpyloric feed at .2 mL an hour. That is when things became stressful and out right crazy.

Every person I came in contact with wanted to know how the pumping was going. It was a question that became part of the greeting “Hello Rebecca, how is the pumping going?” There was only one answer that was acceptable: “Swell, I’m making exorbitant amounts of milk.” Any other answer resulted in a meeting with a lactation consultant.

At first, I tried to use these meetings as a resource. I attempted to trouble shoot why it would not work. I experimented with different ideas. I used a variety of sizes of flanges, brought home Charlie’s blanket so I could smell it while I pumped, and pumped immediately after the rare occasions I got to hold Charlie. Nothing seemed to work. These consultation sessions changed from helpful trouble shooting into accusations that I wasn’t trying or was not working hard enough at it. Each session concluded with a lecture on how breast was best.

A few days after Charlie began transpyloric feeds, a doctor approached me. They were running low on what little milk I supplied and requested I sign the permission forms for her to receive donor milk. I cried as I signed the forms. My body failed at having a healthy pregnancy, I have failed Charlie again at providing nourishment. I was 0 – 2 so far as a mother. I had never tried so hard nor wanted something so badly and yet failed miserably.

Despite this set back, I kept pumping and the lactation consultants had become pestering shadows. I felt like they had a sixth sense to know when I was in the hospital. If I was in the hospital, there was a lactation consultant trying to meet with me.

After desperately trying to pump for six weeks, I decided to stop one night. I was fatigued from NICU life, from the sadness and mourning of having a micropreemie, from the isolation and loneliness, from the fear of losing my baby, and from the lack of sleep that comes with pumping every two hours. I decided I had enough of the pumping experience. I was done. So what if my baby received donor milk?

I told my husband about my decision after he asked, “Aren’t you going to pump before bed?” He was a little bothered but he supported my decision. He saw first hand how miserable the whole experience had been for me. I slept all night for the first time since I was hospitalized for preeclampsia.

At the hospital, word spread quickly in the NICU that I stopped pumping. The nurses were very supportive. A few told me that many micro preemie moms can’t breast feed or pump. My OB/GYN said he didn’t think I was going to be able to produce milk because of the severity of preeclampsia, the BP meds, and my baby being in the NICU. The lactation consultants were not so understanding.

They kept insisting that I pump. At first, I made up some excuse so they would leave me alone. But, it didn’t work for long.

The final straw happened during a precious moment of kangaroo care. During Charlie’s first two months, kangaroo care opportunities were sparse and meager. The lactation consultant decided to discuss my milk shortage during one of those rare kangaroo sessions with Charlie. I became angry. How dare she encroach on such a sacred time?

I politely but firmly explained that I stopped pumping and my baby would receive donor milk. She responded that now the pressure is off that I should try pumping. She continued to say stress can make milk production low. She repeated the breast is best indoctrination which I had heard about one hundred times.  I was so furious that I was crying. I just wanted her to go away. I barked, “Then why are you bitches riding my ass?!?!”

It wasn’t a moment of class nor grace on my part. Nevertheless, pumping was never mentioned to me again by anyone in the hospital.

I feel like I should conclude by expressing my gratitude for the selfless women who donate to milk banks. My baby was able to receive breast milk because of their generosity. As it turned out, milk banks (and later, formula) were what was best for me and my baby.

I support every mother in whatever choice they make to feed their baby.