Monthly Archives: August 2013

…But Now She Sees

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Charlie got her glasses today.  She protests (and sometimes cries) when they are put on her. However, she spent all afternoon looking at things. It will be interesting to see what aspects of her life, growth, and development her new sight will affect.

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15 Months

Today, Charlie turned 15 months. She had a play date this evening. These are my favorites of the pictures I was able to take.

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Pride

With a micro-preemie, I am used to bringing up the rear of the pack (even in the preemie realm). Charlie does not register on the growth charts, she is behind in her developmental milestones, and transitions slowly through out the day. I have become so accustomed to our slow pace that I saw a turtle crossing the road and remarked how quickly it moved.

On some days, things crawl and I wonder if we will ever make it to the next goal. However, Charlie will frequently do something unexpected that makes me smile, beam with pride, and erases all doubt.

Charlie was in utero the first time it happened. While I was hospitalized, her heart beat was checked each time my vitals were recorded. The nurses pointed out that Charlie kicked back every time they placed the Doppler on her. One nurse said, “Usually, the babies swim away when we do this. It is funny that she kicks back.”

When Charlie was born, she screamed the entire way to the NICU. The doctors warned us that she would be too sick to cry.

Those surprises were only the beginning. There have been many moments when she has unexpectedly squared up to a challenge, beat out her sensory issues with her curiosity, or reached milestones in her own way (her first word was “Yay!”). All of these things make me grin, chuckle, and appreciative of the little human that is growing before me.

One of such events occurred today. A warm downpour had started while we were finishing an afternoon at the park. Instinctively, my husband quickly pulled the rain proof cover over Charlie’s stroller. I said, “Let her feel the rain… it will be a good sensory experience.” He cautiously pulled back the cover. We both watched Charlie and waited for her reaction.

Charlie extended her arms and turned her palms up. Next, she opened her mouth and stuck out her tongue. Finally, she clapped her hands and started laughing.

As a micro-preemie parent, I find that I take pleasure in the strangest things. While I appreciate (and am grateful for) each milestone she attains, I find more delight in the Charlie specific things… such as learning to dance before she can stand, trying to sing before she can talk, or just laughing in the rain. For it is when she does those things, I no longer wonder about milestones. I know that all this baby needs is time.

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A picture from Charlie in the rain today. It is blurry because I had water on the lens.


Monday Out

The weather today was gorgeous. After a slow start in the morning, Charlie and I played outside all afternoon.

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Charlie practiced climbing at the playground.

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Later, Charlie played in the Shenandoah River. She tried pushing me away when she realized that I was not going to take my hand off of her.

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After a hike, we took these. I am not sure which of us had more fun.


Maintaining Sanity On Lockdown

RSV season is just around the corner for us. Surpisingly, we do not dread the “lock down” required to keep our baby’s lungs healthy (RSV 101 can be found here). Last year, we managed to have a good time while keeping Charlie healthy.

sledteam1Charlie came home from the NICU shortly before RSV season. At a pediatrician’s appointment, I bombarded the doctor with questions about safe activities during RSV season. I asked if it was OK to take her outside. What temperature was too cold? How should I dress her? I rattled off ideas and strategies. Some things were encouraged while others rejected. I asked questions until I understood the rules, limitations, and health concerns of RSV season.

It was not easy at first. But, we managed to have fun while remaining with in the recommended guidelines.

We tapped into our creativity and tried new adventures. The internet and tourism literature is full of ideas. Basically, we went places where other people were not. For example, we looked for locations in the “off season”. By employing this strategy, we discovered our state parks system.  In addition, we embarked on scenic drives, road trips, or hikes.

We became masters at problem solving. Anytime we encountered an obstacle, we figured out a way to overcome it. We stocked bottles of sanitizer and disinfecting wipes everywhere (in the stroller, in our bags, in the car, in the diaper bag, in our pockets). We purchased a jogging stroller to which our infant seat attached and became quite adept at pushing it up and down mountain trails. We figured out how to sterilize bottles and boil water while out on the road.  We devised plans for dealing with every worse can scenario we could imagine. sled team_edited

The idea of leaving our sterile home seemed a little overwhelming at first. We started small. We went apple picking forty minutes away. Our adventures grew as did our confidence. For us, the hassles of adventuring with a former preemie outweighed the boredom of locking ourselves up at home. Looking back, I realize that we had created some really nice memories while maintaining our sanity.

I have begun collecting ideas and constructing plans to keep us busy during this year’s season. I want more than for us just to get through it. Once again, I would like for us to have a blast doing it.


Weekend Off

My husband and Charlie went out of town for the weekend. I had the rare luxury of a free weekend. Every minute was used wisely.

I did all those things that were part of my pre-baby life. I slept in, read for hours uninterrupted, took a long shower, cleaned the house at my own pace, visited the neighbors, went for a walk, star gazed, and ate really delicious leisurely meals. I enjoyed having time and space to myself.

However, I must admit… As enjoyable as these couple days were, I do miss Charlie. I am ready for her and her dad to come home.

What do other moms do with their alone time?

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A picture from Charlie dozing off earlier today, sent to me from her dad.


When Charlie Came Home

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The big day was a year ago. Charlie was discharged from the NICU. I had tried to imagine what the day would be like during her 88 day stay. Despite my attempts to predict what was to come, I was blindsided by what the actual day and following year involved.

I remember being buzzed into the NICU for the last time. After we passed through the heavy doors, the nurses and staff greeted us with huge grins while we scrubbed up. I wanted to share their enthusiasm for our big day. However, I felt l was going to burst into tears, laugh hysterically, hyperventilate, and possibly vomit all at the same time. It was not the victorious strut that I envisioned for the big day.

The discharging nurse was completing the last of the paperwork with us. She asked if we had any questions. I shook my head because I feared what would happen if I tried to speak. Besides, I felt confident that we would not have any problems caring for our baby at home.

Our last few weeks in the NICU was like a decathlon of events in which we had to prove ourselves.  In addition to demonstrating our “regular” baby skills, we learned how to insert an NG tube, perform infant CPR, give epo injections, administer medications, airway maintenance, and more. My only fear was that there would be some last minute reason that Charlie could not go home. I was ready to take my baby and run. 2012-08-24 001 007

By afternoon, we were ready to walk out of the NICU for the last time. We piled up all of Charlie’s things on her stroller and headed out. My husband carried Charlie out in her carrier, I trailed behind with the overflowing stroller. As we passed through the locked doors, tears started streaming down my face. I breathed a sigh of relief and thought, “We made it! It is over! We can get on with our lives!”

From what I had been told from other preemie moms, we were supposed to have many appointments at first. Then, they would taper off as she got closer and closer to “catching up”. A few months after discharge, we were supposed to reclaim the “normal” baby experience.

That did not really happen for us. Some things did improve.  But those appointments were replaced by appointments for new problems. Charlie was even re-hospitalized. The roller coaster ride that was allegedly going to smooth out, continued on. It was hard at first to realize that our baby was not one of those anecdotal preemies that would quickly and easily catch up.

However, it does not mean that I’m any less proud of her. I couldn’t possibly love her more. We recalibrated our plans and our lives. It is still a roller coaster and things are tough at times. But, I dare say that we are happy. I am overwhelmingly grateful for the small things.

One of Charlie’s doctors admitted to me that outcomes are unknown with preemies. While there are ideals hoped for, goals strived for, and percentages documented, there is not a typical course. Every baby is different.

A year after bringing her home, I can not imagine things being different than they are now. The courage, strength, and cheerfulness that Charlie regularly exhibits challenges me to be better. Over the past year, our lives have been fuller and richer because of Charlie.

Happy homecoming anniversary Charlie Bear! I can not picture my world with out you.

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Optics

Charlie had an appointment early this morning with the ophthalmologist. I really like her ophthalmologist. He is quirky, works well with Charlie, answers my questions fully, and seems to really care. He once told me that he performed the ROP exam on himself to make sure that he was not hurting the babies.

glassesThe doctor patient relationship between Charlie and the ophthalmologist started in the NICU. He monitored her retinopathy of prematurity (ROP). Mostly, the relationship consisted of the doctor observing Charlie’s progress. Luckily, the ROP corrected on its own and did not require any intervention.

At Charlie’s last ophthalmology exam, the doctor mentioned that she was significantly more far sighted in one eye than the other. (For those of you wondering how they test babies vision, it has to do with measuring the lens.) We hoped that it, like the ROP, would correct over time. However, it was decided today that Charlie needed glasses to prevent possible surgical intervention and to assist with her vision development.

The ophthalmologist had finished examining Charlie and was making notes on her chart. Charlie was perched on my lap clapping and babbling as I packed up our things. I expected the doctor to suggest exercises to help Charlie’s lazy eye and was waiting for the instructions.

When he finished scribbling on the chart, he looked up and announced, “Charlie needs glasses.” Surprised, I repeated, “Charlie needs glasses?” He explained the reasoning and the process to obtain glasses for her. I thanked him as he handed me Charlie’s prescription.

After the appointment, Charlie and I set off for a local optician. We were greeted by several friendly employees. They measured Charlie for her glasses (more difficult than it sounds). We sorted through and decoded the insurance coverage. Finally, we decided on the practically indestructible style of glasses pictured above.

Charlie will let us know how much she likes her new glasses when they arrive. I am curious how her sensory issues are going to affect her adjustment to wearing glasses. I am interested to see if she becomes more engrossed in visual activities, if her play skills improve, and if her head tilt will disappear.

Appointments like the one today remind me that, even now, anything can happen when visiting the doctor. Who knows? Maybe the new glasses will help Charlie understand her world better.


I Don’t Have A Clue

There are two things that I have learned to stop doing since Charlie’s birth. As I have explained in my first post ever, I no longer apologize for my moments of weakness or sporadic melancholy moods. More importantly, I have stopped assuring people that everything will be alright.

I know, the second statement sounds rather harsh. However, I have learned to choose my words wisely from my experience as a NICU mom.

For example, when Charlie’s early birth was imminent. We were told by those around us that everything was going to be OK. Charlie’s birth was everything other than alright. I mourned, grieved, was angry, saddened, and in shock. I felt guilty, embarrassed, and ashamed for feeling that way. After all, I was repeatedly told how OK things were and how they would work out. I was disappointed in myself for not experiencing the glowing happiness that I felt was expected of me.

Later, I was connected with a parent that had a preemie around the same gestational age as Charlie a year prior to Charlie’s birth. Somewhere in discussing our babies and hearing their reassurance, I let myself believe a fallacy. I thought because things turned out exceedingly well for them (their baby caught up before the age of one), it would happen for our baby too. A month after Charlie came home, I realized things were not going to be the same for us. Even worse, it felt like my fears, concerns, and questions were dismissed every time I was told how everything was going to be fine.

Finally, on the occasions that Charlie was hospitalized, I observed the events surrounding the passing of other people’s babies. I overheard as the families were told that it was okay or it was for the best. I cringed. I wondered  if “it will be alright” was repeated throughout their baby’s ordeal.

It is not fine, it is not alright, nor is it okay when a baby is born early, still, or passes. These are among the things in life that are not supposed to happen… but for some reason they do. I do not know if or when it will ever be okay for these families.

Instead of empty reassurances, I tell them I’m sorry. I listen. I answer questions about our experience as honestly as I can. I remind them that every baby is different. I let them know that I am thinking about them. Mostly, I only speak of things that I know to be true. I feel I owe that to them.

I have stopped telling people things will turn out okay or that everything will be fine. Mostly, because I don’t have a clue that it will be.

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To Nashville And Back

You may have noticed the lack of posts over the past few days. Charlie, my husband, and I spent the weekend traveling to and from Nashville. It turned out being a really pleasant trip.

I am not going to rehash every excruciating detail and post many photos.

But, I will write about the evening in which I was an embarrassing preemie mom.

On that particular evening of our trip, we had decided to go to a very large and noisy shopping center which was packed with people. It was something we had not and could not attempt in the past. Charlie would not have withstood it.

The flashing neon lights would have been too bright, the noise level would have been too high, and the crowd would have overwhelmed her. In short, sensory overload.

That evening, we decided to try. We could always leave if Charlie melted down.

As soon as we stepped into the shopping center, I was distracted. I was busy trying to gracefully navigate the crowded arena (trying not to run people over with Charlie’s giant stroller). My husband and I yelled to each other over the commotion as we quickly planned our evening. Through everything, I had not heard a sound out of Charlie.parade_edited

Quickly, I checked on her to see how she was holding up and could not help but laugh. She was perched in her stroller waving to everyone that walked past her. It was as if she was a princess sitting on a convertible in a parade.

I sighed with relief and was thrilled that she was enjoying herself.

Charlie smiled and waved as we made our way to a giant aquarium. Later, she happily babbled when people stopped to talk to her, laughed as she was wheeled by Halloween costumes, and happily squealed while playing games in the arcade with her daddy.

There was no need for stress, panic, or worry. We were able to forget about back up plans, escape routes, plan Bs, and everything else. I did not feel like I was rolling along an alarm preparing to bring everything to a screeching halt. We did not have to take turns sitting out.

We. Had. Fun. Together.

It took all the restraint I had not to bawl hysterically the moment I understood what was happening.

The majority of our trip was a collection of many fun (but not as monumental) moments. We will talk about this trip for a while.

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Charlie poses in front of a display of giant candy boxes.


Poof! She’s A Toddler

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Swinging at the park.

Today, I had an appointment. Unfortunately for me, my husband had to go to his office (he regularly works from home). Regrettably, I had to take Charlie with me to the appointment.

On similar occasions in the past, I found it easiest when Charlie slept. This morning, I formulated a simple plan. I would take Charlie to the park, tire her out, and she would sleep through the appointment.

But, Charlie had other plans.

The weather was beautiful and we spent a couple of hours at the park. Towards the end of our park adventure, Charlie indicated she was tired. In response, I strapped her in her car seat and we headed home.

She rallied during the few minutes we were in the car.

After a quick diaper change, clothing switch, and feeding, we set out towards my appointment. Charlie was nowhere near ready for a nap. On the way, we stopped at the library. The library has a nice play space in the children’s book area. I was sure that a quick tumble on the over sized blocks would wear her out.

She played with two other toddlers. She climbed, rolled, crawled, laughed, and banged together toys. I was confident, after all that, she would snooze through the appointment.

She didn’t. Where did she get the endurance from?

At the appointment, she was well behaved. Still, she was awake. She was an active participant in the conversation and filled in the silences with her “singing”. We forged through the appointment. Afterwards, I swore to myself that I wouldn’t drag her along anymore.

Finally, on the drive home, she drifted off.

Today, I realized that I have a toddler on my hands. She is no longer a baby.

Playing at the library.

Playing at the library.


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.


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.

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


Preemie Playdate

The past couple of days have been long for Charlie. Yesterday, she met with her speech therapist and her occupational therapist. Today, she returned to the pediatrician. Charlie has been such a trooper while her feeding issues have been investigated. I decided to end the rough week on a good note… with a preemie play date.

I have written about my friend, Logan, here and here. Logan and I met in the March of Dimes NICU scrap-booking class. We have kept in touch with each other during our babies’ first year. Now, our babies’ are healthy enough to have play dates together.

While our babies play, we talk. We vent, we trade information, and celebrate our babies’ newest accomplishments. It is like any other play date but much of the conversation is preemie issue oriented. Charlie has a good time and I receive some sort of solace. I always leave feeling better while carrying Charlie in her carrier fast asleep.

Today’s play date was a pleasant distraction from the overloaded week we have had. Despite the army of specialists Charlie saw this week, we are no closer to solving the feeding mystery. However, a game plan has been devised. I am keeping my fingers crossed as we carry it out.

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I did not take any pictures today. This is a picture from a past preemie play date.


Slightly Burnt

Every week Charlie works on PT, OT, speech/feeding therapy, and attends music therapy. She frequently has specialist appointments or sees her regular pediatrician on the days without therapy. In the quest to solve Charlie’s mystery feeding issues, additional appointments and specialists are scheduled. I hit a wall last night. What is a mother to do when that happens?

Desperate for a break, I trimmed the scheduled appointments to a bare minimum the rest of the week (two left after today). This afternoon, Charlie and I went to the park to meet up with my moms group.

It was exactly what Charlie and I needed.

Charlie was delighted to have another opportunity to play with more kids. I was rejuvenated by the conversation from the other moms. Not only do I get ideas, understanding, and solutions from the other moms but I’m able to feel normal and have a sense of belonging. Inclusion is something that I have struggled with since Charlie’s birth. I finally feel like we belong somewhere. That is a really big deal. Especially, on days that I need downtime such as today.

After our trip to the park today, I feel less weary. Charlie has two appointments left this week to address her feeding difficulties. I’m hopeful we will receive some useful information. For morale’s sake, I need a tiny bit of progress or promise so I can resume the rigors of our regular schedule.

What do you other moms do when you burn out?

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Charlie playing in the park today.


An Important Discourse

This opinion piece appeared in the New York Times this week. It is an important topic for those with babies in the NICU.

Let me start by stating that if I could go back in time with present knowledge, I would not change a thing.

However, when Charlie was in the NICU, I would have liked to been informed of more than merely the mortality statistics. It would have helped to know the possible issues my baby would face and not all preemies catch up by two.

I feel that I could have been better prepared. It would have spared me of crushed expectations. Prior to Charlie’s first year home, I thought all preemies catch up by two. I anticipated a “normal” baby experience upon Charlie’s homecoming. After so much heartbreak and loss, NICU parents deserve more information and discussion.

NICU moms, what do you think about the piece?

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Charlie enjoyed the lovely weather today at the state arboretum.


Silent Night or Why Charlie’s Second NICU Rocked

Tonight, is an extremely quiet night. My husband went camping with Kaia (our dog), Charlie has fallen asleep, and the cat is curled up downstairs. The silence infused with Charlie’s rhythmic snoring reminds me of late nights in the NICU a year ago. I spent many nights with Charlie at the second NICU. It was an amazing place.

After two months of begging each morning, “Please don’t let anything bad happen today”, Charlie was deemed a “feeder-grower”. I was reminded to “Never trust a preemie” but told it was no longer necessary for her to remain at the very large level IV NICU.

For her third month, we had her transfered to another hospital which was closer to our home and my husband’s work. The NICU at that hospital was incredible with many great features.

Most importantly, it had private rooms. I was able to sit with Charlie and did not feel like I was in the way. Nor was I crammed into a corner and sandwiched between Charlie’s and another baby’s isolette. Her room had its own (reclining) chair. Therefore, it was not necessary to scavenge for one each visit like in the open NICU. We were allowed to participate in kangaroo care as desired without interruption. Whatever else was going on in the NICU did not impact our visit like at the other NICU. At night, I had the option to sleep in the recliner beside her isolette. It was comforting to know that I did not have to leave her if I did not want to.

Charlie’s new room gave us our privacy back and we started to feel human again. We were no longer subjected to the prying eyes over other babies’ visitors nor hear painful thoughtless comments from the same people. I did not have to endure the horrible experience of a NICU waiting room with unattended children and inconsiderate individuals. It was much quieter in the second NICU.

We were encouraged and allowed to provide most of Charlie’s care. Because I was able to stay with her comfortably, I was present to perform most of the hands on care and feedings. My husband was able to give her a bath for his first time and he often read her stories.

At this NICU, she began to feel like OUR baby. We started to make memories. I felt involved in Charlie’s care.

There was more continuity of care at the second NICU. Charlie regularly saw the same neonatalogists. They knew which doctor was scheduled to see her next and they communicated adequately with one another. That was a big difference from the larger hospital where Charlie’s case was handed off frequently and they usually did not know to whom.

The physical and occupational therapists were phenomenal with Charlie. They saw her often, made suggestions, and took time to teach me skills. They provided a one on one infant massage class for me, showed me how to position her, provided a book on preemie development, and answered questions.

We got to know the small nursing staff well. They helped us prepare to take Charlie home. They taught us about using a car seat with a small baby, administering medications, infant CPR, feeding, and small baby care. They were amazing people. I still think about them quite a bit.

There were things that I did miss about the first NICU. I missed a few of the nurses and the March of Dimes NICU Family Support. However, I was pleased with our decision to have Charlie transferred. The second NICU was where we, as a family, began to heal.

Overall, Charlie’s admission to her second NICU was instrumental in empowering us to care for her. The experience there helped me to feel competent and become confident in my new role as Charlie’s mommy.

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My husband bathed Charlie for his first time.

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This was taken a few weeks after the bath picture on the day Charlie turned five pounds.


The Right Direction

After over a week of poor feeds, Charlie has resumed eating. Everyone (doctors, therapists, and others) have their own theories as to why she refused to eat (teething, stomach bug, reflux, poor motility, etc) but no one knows for sure. The important part is that she has resumed her consumption of calories. I could not be more relieved.

On a completely different note, a mom brought her little one home from the NICU this week. She wrote a post about how difficult she finds things. I find special needs parenting to be hard and I’m not sure that it gets better.

However, the good news is that parents get better at it. I noticed that my husband and I have developed a skill set unique to micro preemie parents. Learning the medical nuances, keeping up with the myriad appointments, and fine tuning household adjustments are the parts that merely take time to learn or figure out.

On the other hand, there is another aspect in which my feelings fluctuate. In the beginning, I found it impossible to deal with outsiders. It has gotten much better for me since the beginning. Despite this, I still have those occasional exchanges that I find painful.

They can take many forms.

For example, it happens at the doctor’s office after a successful weight check. My delight in my baby’s growth is crushed when some outsider points and squeals, “Oh, she’s so small!”

Also, my heart sank this week when it seemed every baby that is Charlie’s adjusted age became days away from walking. In the meantime, my goal is “to keep her hydrated and breathing”. I wondered why we were in reverse while others were cruising so far ahead.

I know that we have been on a journey that only a handful of people understand. Nevertheless, there are days (especially days I’ve regressed to survival mode) those things are like a blow that knocks the wind out of me. I do not know what the answer is. Maybe fewer lousy days?

I suppose it is too soon for me to expect things to have calmed to a state of what we will consider normal. Perhaps, time is not finished with me and my growth into special needs parenting.

No matter, I won’t let it overshadow the good things. Now that Charlie has resumed eating, I can breathe easier. I also want to say, “Welcome home Agnes!”

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Charlie sitting on her daddy’s lap and helping him with his work this morning.


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