Answering A Question About Loss

In reference to my post on Saturday, my friend Sally asked me:

“Would love to hear more (another post?) about what you mean here: ‘In addition, Charlie’s birth somewhat stole my sense of safety and confidence. This weekend was a step in reclaiming it.’ How did the event do that for you?”

Ever since she posed the question, I had been thinking about how I was going to answer something so complex. I have decided to note the losses and conclude with how March of Dimes Share Union this past weekend has helped.

Right now (I’m sure there will be more later), I can name four losses that this weekend helped tremendously with.

1. Charlie’s birth had taken away my sense of safety. Up until her actual birth, I was sure that matters of tragedy only happened to other people and was shocked when it happened to us. In addition, on most mornings of the 89 days Charlie was in the NICU (and the twelve days prior to her birth), I would wake up and say, “Please don’t let any thing bad happen today.” I had become accustomed to holding my breath and flinching in anticipation of bad news.
2. My confidence has been in pieces since Charlie’s birth. Her birth proved me wrong about so many things that I thought I knew or believed. Additionally, tragedy is an incredibly isolating experience. Both of which have eaten away at my confidence.
3. I had lost my connection with other people after Charlie’s birth. I am surrounded by some pretty great people. Admittedly, I sometimes feel disconnected from them. My worries, stresses, and complaints are so different than theirs.  Try as I might, I still feel like I live in a different realm even though they are incredibly understanding, kind, and considerate. I have a difficult time establishing a sense of belonging.
4. Charlie’s birth had disrupted my place in this world. My identity and roles have greatly changed since Charlie was born. I have had a difficult time figuring out my new place.

To address Sally’s question on how this weekend has helped with all of this:

It helped that I was surrounded by others with a shared common experience. It was healing to openly discuss my experience and hear different thoughts and perspectives from others with similar experiences.

My new role and identity were clarified by being with, seeing, and hearing from the other parents. I was in the presence of people that I felt connected with completely. For the first time since Charlie’s birth, I had an outright sense of belonging.

I was inspired by the strength and resilience of many of the attendees. While their situations may be similar, many were much more painful or challenging than mine. I am strengthened by their example.

I am encouraged to have seen and heard from those on a similar journey who were further ahead.

I was challenged several times this weekend to do things that were uncomfortable for me ( for example, meet many strangers and discuss deeply personal subject matter over the course of a couple days) or intimidating for me (one example, venturing into DC for one of the first times since Charlie’s birth and seeing visual reminders of the life that we were supposed to have).

These things were stressful and I had to actively confront my anxiety, sadness, and fears. My confidence was boosted by my successful (defined as not dying or being maimed) navigation through the many challenges. I’ve found, for me, with confidence comes safety. One step towards lessening my hypervigilance.

I am not sure that I will ever be able to verbalize in a comprehensive manner how this weekend has helped me.  In short, being around 78 courageous, brave, resourceful, funny, and wonderful people for a weekend can be beneficial for anyone.

I have many photos from this weekend. However, I want to respect everyone’s privacy. So here is another photo of Charlie. Photo Credit: Monica DeMariano

16 Months

Happy 16 Months Charlie!

Photo Credit: Monica DeMariano

Share Union Day Two: Best. Convention. Ever.

Today, day two of Share Union, was a long and exhausting day. Things will wrap up tomorrow. This is the first convention that I’ve attended where every single minute was utilized well.

A few days (possibly weeks) will pass before I process the events of this weekend.

Some of the immediate highlights were: Meeting other parents of 26 weekers (one mother had her baby a matter of days from Charlie’s birth), having the privilege to hear other amazing parents speak, the food, and becoming acquainted with members of the site.

I have frequently commented about being exhausted and worn out by the post NICU experience. The understanding, compassion, and companionship of this weekend has recharged me somewhat. I have tangible proof that I am not alone on my post NICU journey.

In addition, Charlie’s birth somewhat stole my sense of safety and confidence. This weekend was a step in reclaiming it.

ShareUnion Day One: First Day of School

Tonight, March of Dimes ShareUnion kicked off in Washington D.C.

I have to admit that I was a little nervous about the first day of ShareUnion. Since it was my first time attending, I did not really know anyone other than what I knew from the Share Your Story website. The veteran attendees all knew one another. Registration was noisy as they greeted each other with gleeful shrieks and jubilant hugs.

Soon enough, the awkwardness of being a newcomer resolved itself at the reception. We socialized a dozen stories above the backdrop of Capitol Hill at night.  I was quickly at ease after a few minutes of circulating through the room. Even though I was among practical strangers, I completely belonged. I can’t remember the last time that I felt that way.

Brief post tonight. Day 2 starts very early.

Today’s Weigh In and The Weekend Ahead

Today, Charlie had an appointment with her pediatrician.  Charlie was weighed and examined as usual.  Afterwards, we discussed the visit with the dietitian, the results from the swallow study, and the upcoming appointment with the developmental pediatrician concerning AFOs (ankle foot orthotics).

First, the important news. Charlie weighed in at seventeen pounds and twelve ounces (8.051 kg). Although she is nowhere near the growth charts, she is back on her (personal) growth curve!

Despite the progress Charlie has made, her regular providers’ consensus is that AFOs would be beneficial for her. However, the ultimate opinion on the matter is left up to her developmental pediatrician. Charlie has an appointment with him in a couple of weeks. The AFOs will be prescribed and made that week if he agrees.

This is off subject:  This weekend I am attending a March of Dimes function out of town. If you’ve been wondering why today’s post has been brief, it is because I am busy packing and tending to last minute details.

Many of my readers have expressed interest in the function this weekend. I plan on posting this weekend as time allows. Maybe, I can convince some of those interested readers to attend next year’s function.

Charlie and I played at Sky Meadows State Park after her appointment today.

Meanwhile, On Capitol Hill…

It is easy for me to get wrapped up in the chaos of our daily lives. I am so busy trying to survive the ups and downs that I sometimes forget about happenings that occur outside of our bubble.

Thankfully, I was informed last week that there are two pieces of legislation currently in front of Congress that concern premature birth and newborns.

One piece is the PREEMIE Reauthorization Act (S. 252/H.R. 541). According to the March of Dimes website:

“If enacted, the bill will authorize enhanced research, education and intervention activities aimed at improving pregnancy outcomes.”

More can be found about the PREEMIE Reauthorization Act here.

The other piece is Newborn Screening Saves Lives Reauthorization Act (S.1417/H.1281). Once again, the March of Dimes Website provides a concise description of the bill:

“The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.”

More about the Newborn Screening Save Lives Reauthorization Act is located here.

What can you do?

Advocating for these bills from the comfort of your home is simple. The March of Dimes Advocacy Action Center has made it easy to write your representative in support of this legislation.

Let’s get behind helping all babies.

Photo Credit: Monica DeMariano

In Case We Become A Micro-Preemie Anecdote

Charlie had the reunion for her second NICU yesterday. I found it to be much easier than the reunion for her first NICU. As Charlie, my husband, and I socialized with her former care takers, I noticed that we were only speaking of the good things.

We never mentioned how difficult the past year had been for us. It occurred to me that this may be one of the ways preemies become anecdotes. For all the future NICU parents who may hear the anecdote of Charlie, this is what I want you to know:

• A year after discharge, it is not “over” for us. We remain working with doctors and nurses, watching and waiting, learning about new issues, and living in a world that does not understand. We have yet to reach that “happily ever after” you may have been told about.

• While post NICU parenting is exhausting and stressful, there is a great deal of joy, excitement, and happiness. This is what you are being told about. Don’t let all the weariness and worry rob you of it.

• Once you take your baby home, the reins are in your hands. In the NICU, the nurses noted and addressed any abnormalities or concerns. When the baby comes home, it is up to you. This means becoming comfortable with asking doctors and nurses many questions and initiating appointments as needed. Every day, I cringe when I see a parent asking a question to an internet group that should be addressed by a doctor.

• Every baby is different. I can not emphasize this enough. An ailment that is devastating for one baby may be a non issue for another baby and vice versa. Our post NICU reality may be completely different from yours.

Charlie playing at her NICU reunion.

The Swallow Study

My regular followers know that Charlie had her swallow study on Friday. Since it was her first one, I was unsure what to expect. Surprisingly, it was relatively quick and of minimal discomfort to Charlie. For parents who may have a swallow study in their future (or for those that just want to know what a swallow study is), this is how Charlie’s swallow study (a barium swallow on video) went.

We were escorted back to pediatric radiology by a speech therapist. Charlie was understandably cranky due to the last time she had eaten was four hours ago. The speech therapist explained that I would feed Charlie different textures while an x-ray video was recorded.

I made the mistake of dressing Charlie in a top with metal snaps. It needed to be removed. While I undressed Charlie, the speech therapist mixed barium samples of various textures for Charlie to swallow.

Next, the speech therapist and I put on lead aprons.

After everything was prepared, the radiologist entered and introduced himself. Charlie was seated in a feeding seat and her bottom half was draped with lead. She protested a little.

Charlie quieted down as the study started and I fed her from a bottle. The speech therapist held a flashing toy to make sure Charlie looked in the correct direction while the radiologist concentrated on the imaging. Charlie did well with the bottle and did not seem to mind the barium mixture.

Next, Charlie drank from a sippy cup with my assistance. This proved to be tricky. Charlie chewed on the spout of the sippy cup. The therapist removed the vent and the fluid overwhelmed Charlie (dribbled out of her mouth). However, a few swallows were obtained and we proceeded with the study.

Later, Charlie ate apple sauce with barium mixed in followed by an even thicker mystery substance. The mystery substance is where Charlie started to have trouble swallowing (as expected).

The actual study took about ten to fifteen minutes. The majority of time was spent with the tasks before and after the study.

Before we left, the speech therapist discussed the results with me. Thankfully, there are no problems with the physical structure of Charlie’s throat. Nor, is she aspirating food.

Charlie’s difficulty with swallowing food is due to an overly sensitive gag reflex. It is a residual aspect of her oral aversion.

The study provided us with useful information. It is one step closer to leaving formula in the past.

I Don’t Care That I’m Frumpy

I am frumpy. I probably was before having Charlie and I certainly am now. I know that I’m frumpy. The thing is… I don’t care.

Currently, I consider my aesthetically good days to be the days where I dodge a glob of oatmeal meant for my hair, have a near miss with being thrown up on, and no part of me is mysteriously sticky. Forget wearing matching clothes, keeping up with a regular haircut schedule, or even having a clue as to what is in style. These things are luxuries that do not currently fit into my life.

My clothes have to be easy to wash, stain treat, be replaced without a second thought, and require no ironing (who wants to spend time on that?). During incredibly busy weeks, I like to be able to pull things from the dryer and throw them on. I keep a set of back up clothes tucked away in the car for unavoidable mishaps.

Additionally, clothes have to stay in place and provide coverage despite the constant bending, being pulled on, and odd maneuvers. I prefer to refrain from bearing it all to the world while being tugged on by Charlie or bent over in a mad sprint to catch her. (It’s amazing how fast she can crawl.)

Also, I have to keep in mind textures. I want to be comfortable. More importantly, the material needs to be tolerated by my sensory sensitive baby. I don’t want to add to her stress when she needs to be soothed.

My hair is another issue. I had long hair before Charlie’s birth. While she was in the NICU, I had it chopped off. She constantly grabbed it and it always seemed to be in the way. It was easiest to cut it off during a time when germ control and ease of care were of highest priority.

Now, I’m growing it back out. I will not have to get it cut as often and I can easily pull it back. Unfortunately, it is in that in between stage… frumpy.

I have decided that I am going to own being frumpy in the same way that I’ve decided to own crying at random. They have become my things. For the time being, it is how my life works.

Some may be horrified and others may question my sanity after reading that last statement. Rest assured, while preemie parenting is the hardest thing I’ve ever done, it is not bad. Just challenging.

Right now, it feels like trail running to me. There are times that are similar to a grueling uphill run and moments as smooth as a down hill coast. Eventually, things are supposed to level out and I will be able to catch my breath.

I have accepted the fact that I am not one of those women that can be an amazing mom and look good doing it. I’ve seen those women and they blow my mind. I do not know how they do it. Instead, I am proud to say that I am a great mom, albeit far from glamorous.

Apple Cider Doughnuts

I am working on the logistics for Charlie’s swallow study tomorrow. In addition to the medical instructions, the location and time further complicates things.

Fortunately for me, Charlie is currently napping while I get this figured out. She was tired out earlier today by an orchard play date  followed immediately by OT.

Fingers crossed that all goes well tomorrow.

I am pretty sure that apple cider doughnuts were not one of the foods recommended by the dietitian. However, Charlie gave it her best eating attempt.

Yay for Dietitians

I’ve been burned before. So naturally, I’m leery the first meeting with a new health professional. In my mind, a best case scenario for our appointment with the dietitian would result in me learning a little useful information. Where as, the meeting would be a waste of time in the worst case scenario. The whole endeavor greatly exceeded my expectations. I walked away feeling more confident, better informed, and even a little enthusiastic about feeding Charlie.

At the outset, the dietitian asked what I wished to get out of the appointment. I expressed that feeding is stressful. I explained to her how I am clueless as how to adequately meet Charlie’s nutritional needs. I continued on to say that she can not eat enough solids to sustain herself but refuses formula. More importantly, I hoped for her calorie intake to become well balanced.

I expected her to not understand Charlie’s feeding issues because very few people do. Before I had Charlie, I had no idea that feeding issues existed. She understood our struggles and offered realistic suggestions. She met us at the point we were in Charlie’s feeding progress and worked within her limitations.

She discussed which foods would be beneficial for Charlie, how to prepare them, and portion size. We talked about daily servings. She answered all of my questions fully, provided many options, and suggested useful ideas. I no longer had to wonder about things such as: Is she getting enough protein? Is she eating enough? How many calories does she need daily? How much milk is too much? Should she be eating more vegetables? If so, how?

I left with handouts and notes full of the information we discussed. With my questions answered, my doubts about feeding Charlie were erased. I dare say that I was empowered. Rarely, does an appointment turn out so well.

A day has passed since meeting with the dietitian. I no longer dread feedings. Nor, am I guessing at her intake. Actually, I am beginning to enjoy feedings and I think Charlie may be starting to as well.

Photo credit: Monica DeMariano

Needless Hassles Regularly Imposed By The Medical Community

I became frustrated while filling out the forms in preparation for the appointment with the nutritionist. The packet in which it arrived (and the lady on the phone) emphasized it is important that it is completed in full before the appointment.

The whole exercise seemed futile. Ninety percent of the questions (concerning desired weight loss, physical activity, etc) were not applicable to our situation. It was a waste of time. Pointless paperwork may be something I need to add to my list of regularly encountered irritants within the medical community.

With the exception of insurance and billing issues (another post all its own), here is my list of regular annoyances:

1) Medical offices that require me to wait for a return call to schedule an appointment are vexing. Unless it is within a few minutes of the initial call, I find it nearly impossible to be on call for the return phone call.

During the day, I am anywhere but near the phone. Rather, I’m feeding Charlie, attending other appointments, changing diapers, bathing Charlie, driving, visiting someone, or otherwise going about our lives. The ringing phone is a starting gun for a sprint that includes juggling a baby and leaping over toys to answer it. Sometimes (such as diaper changes, baths, or feedings), we can’t be interrupted. On these occasions, a game of phone tag ensues. I once read in an etiquette book (and tend to follow) that the phone exists for my convenience not the caller’s. If I must be contacted, I prefer email.

2) Medical offices that call prior to an appointment with automated reminder messages are a pet peeve of mine. Charlie has nine medical professionals she sees regularly. In addition, her dad and I have appointments from time to time. At least once a day, my phone rings with what I call “phone spam”. More often than not, these recorded messages arrive at inopportune times. They wake up Charlie, interrupt what we were doing, or act as false alarms if we are waiting for an important call. I am an adult. I know how to use a schedule. I will gladly pay for any appointments we miss. Eliminating the nuisance will be well worth the cost.

3) I am irritated by health professionals, that require a physician’s prescription or referral, whom utilize a model that differs from the medical model. It is cumbersome to coordinate the services a physician feels will be beneficial from a provider that chooses to do things differently then recommended by the doctor. Whether a family centered, a solution focused, or a medical model is used, the same outcomes are desired. If a health profession is auxiliary to physician care, it is easiest if they work together and not independent of one another. For simplicity’s sake, they should use the medical model. I am not impressed to hear “That may be what the doctor recommends but we do things differently. It’s because doctors use the medical model while we use…”

4) It is trying when a medical office that serves pediatric patients does not have appropriate equipment. On several occasions, we have had to improvise with adult equipment. For example,  we had to visit an ER (in a hospital with a pediatric unit and NICU) that was not prepared to serve babies. After MacGyvering our way through intake and obtaining questionable vitals with ill sized equipment, I was stunned when I was asked if I had a bottle to use to orally administer contrast.

5) I am frustrated if the office aspect of a medical service is not well organized. For example, there is one particular medical office that my husband (the nicest guy in the world) and I detest having to deal with. We actually bicker over which of us should have to call the office or deal with the office staff. Unfortunately, our favorite (and an amazing) doctor is one of many at this practice.

When we call, we are usually put on hold for about five minutes (my phone times these things). After the wait, the person we speak to will have someone else call back (even if it is merely for scheduling an appointment). The time between the initial call and the return call varies from fifteen minutes to six hours. Sometimes, the person calling back is not the right person and the process starts over. On occasion, I have had a nurse dispense medical advice with out having looked at Charlie’s chart. I am usually tipped off when Charlie is referred to as “he”. It is really kind of crap shoot as to what turmoil will ensue when we call the office. We double check everything that is involved with that office. One thing is certain, that place keeps us on our toes.

There it is. My list. These things needlessly complicate our lives on a regular basis. What is on your list?

Photo credit: Monica DeMariano

My Heroes Wear Scrubs

There are many things about having a preemie that are unknowable until it happens. No one can really prepare a parent for what NICU life entails. I will be forever grateful to the nurses that helped me get through it. This post is dedicated to those nurses on today, Neonatal Nurses Day.

To begin with, I did not know that I would not be allowed to hold my baby. While I was hospitalized, I would visit the NICU, gently press my hands against Charlie’s isolette, silently cry, and stare at her in disbelief. After a few days of this, one of the nurses sensed that I ached to hold or touch my baby. She showed me how to open the portholes on the isolette and demonstrated how to carefully cup my hands around Charlie.

After I was discharged, I sat by Charlie’s bedside each day. That was how I met a specific nurse that cared for Charlie most often. She explained how to rub Charlie’s back when she would forget to breathe. Later on, the nurse instructed me as I learned to change Charlie’s diaper while maneuvering around the PICC line. She helped me with kangaroo care. The nurse told me what each of the alarms meant, how my baby was doing, and what options we had in Charlie’s care.

We talked quite a bit during the many days that I sat with Charlie. She comforted me on Charlie’s bad days, reassured me that I was doing a great job, and consoled me when my milk failed to come in.

Through our discussions, I was able to understand that we would be all right if Charlie was disabled. Sometimes, we joked and had a good laugh. Most importantly, she helped me to find the strength and courage to be the mom Charlie needed.

Later, it was that same nurse that alerted the physical therapist of Charlie’s rotated leg so it could be corrected with positioning. Another nurse noticed that the replogle was suctioning milk from Charlie’s stomach. Later, she pointed out that the CPAP was blowing air into Charlie’s stomach once the replogle was removed.

Most of the nurses got to know Charlie well and relayed any suspicious changes to the doctors. I feel like they loved my baby almost as much as I do. I was comforted to know that Charlie was in good hands each night that I had to leave her.

The nurses answered my questions and assuaged my fears. They encouraged me to take the infant massage class, taught us how to bathe our baby, and helped us troubleshoot her feeding difficulties.

They even saved odds and ends for me to add to my scrap book.

As Charlie got closer to going home, one of the nurses would delight in helping me dress Charlie. The NICU nurses bestowed upon her the title of “The Best Dressed Baby In The NICU” during her stay at the second NICU.

Throughout the last week, the NICU nurses assisted me in tackling the overwhelming list of discharge requirements. Finally, it was time for Charlie to go home.

I want to say thank you NICU nurses for saving my baby and, in the process, saving me.

This life would not have been possible without you.

This picture was taken by Monica DeMariano. The Cocoally shirt was given to Charlie by my friend Ally Burguieres.

Apple Picking

Last year, we went to pick apples. It was the first time we had taken Charlie out after she came home from the NICU. Although the trip was short and simple, it had a lasting impact on our lives.

Charlie had been home approximately a month when we first went apple picking. Around this time, we decided that our lives in Northern Virginia were no longer going to work. Additionally, the isolation and precautions required of post NICU life were wearing on me. To get away from it all, we decided to pick apples about an hour away.

After we arrived at the orchard, my husband was so nervous to have our baby out of the house that he worried about everything. I remember that the gentleman who took our family picture (first ever!) in the orchard asked us how many hours old our baby was.

Regardless, we had a fabulous time. We picked apples, had ice cream, and ate caramel apples under a sunny sky. I felt like we had broken out of prison.

On the drive back, we started discussing the possibility of moving away from the DC metro area. Additionally, we examined ways in which we could be better prepared while traveling with a baby.

This year’s family portrait.

The short trip had provided me with the confidence I needed to journey out of the house with Charlie in tow (to some where other than a medical appointment).  At Charlie’s following appointment with the pediatrician, I asked about the recommendations and requirements to keep Charlie healthy while traveling out of the house. Our trips escalated from then on. We started traveling further out and for increasing amounts of time.

A few months later, we moved away from the DC metro area.

Today, we went back to the same orchard to pick apples (we live fifteen minutes in the other direction from it). This time, we were pros.

Crunch Time

Charlie’s progress has plateaued once again. She is having trouble learning to walk and difficulty swallowing. Due to these new developments, our schedule is packed even more so than usual.

For about the past week, Charlie has been heavily leaning on a kid sized chair as if it is a walker. It was her own idea. I am impressed with her ingenuity. Her therapists suspect the reason she is not cruising or standing on her own is due to limitations in her ankles and feet.

To address the issue, she has an appointment with the developmental pediatrician early next month. He will decide if ankle foot orthotics (AFOs) are  appropriate. If so, she will be fitted for them while we are there. I do not know much about AFOs (I need to read more) but what I do know I learned from this blog post (thanks again, Tatum).

Whether AFOs are the answer for Charlie or not, it is time to get this baby walking. She has been telling me for a while that she is ready (and screaming in frustration when her attempts fail).

Next, as my regular followers know, feeding has been a enormous frustration for us since the NICU. Charlie has battled allergies, reflux, motility issues, an oral aversion, and now, difficulty swallowing.

Charlie’s speech therapist stated that she has a delayed swallow (I need to read more about this as well). She frequently chokes on high flow nipples and solid foods. It is strange how she pushes her chest out and appears to bear down while eating solids. She will choke, gag, and sometimes vomit while eating.

Charlie has a swallow study scheduled later this month. Hopefully, this will uncover some of the mystery behind her swallowing difficulties.

In the meantime, she has an appointment with a nutritionist next week. This appointment is to guide us in keeping Charlie’s intake well balanced. Currently, I am doing the best I can with limited knowledge and a baby that will no longer eat formula but can not eat enough solids to sustain herself. My hope is that the nutritionist will have some useful ideas.

There you have it… crunch time.

There are many appointments with doctors, therapists, nutritionists, and tests on my schedule this month. In addition, we are stocking up on sanitizers and updating our vaccinations as cold, flu, and RSV season begins.

Fingers crossed that all goes well.

This is another amazing picture taken by Monica DeMariano.

How to Help Family or Friends In A Crisis

Charlie’s birth was a very lonely time for me. We did not get the normal flood of visitors, gifts, and congratulations that comes with having a newborn. Instead, the silence was deafening and the loneliness was unbearable. The thing is, very few people knew what to do for us or how to respond. Today being what it is, I have decided to write about the helpful (and not so helpful) things people did for us when Charlie was born. The information is a list of ideas that can be adapted to help others in times of crisis.

What Was Helpful:

• My husband’s company shipped a few days worth of meals to us or people made us food. I loved this. Last year combined, we spent 120 days in the hospital. I’ve discovered there is only so much hospital food one can eat. Once I returned home after a long day at the hospital, cooking was one of the last things I wanted to do.

• Several people sent gifts and baby items (many in preemie sizes). It was a nice way of saying, “We are thinking of you and we hope for the best.” and not actually have to say it.

• One out of town friend said to me, “I want to help but I don’t know what to do or say.” It was a great thing to say because it was honest and let me know that we were in her thoughts.

• Other friends helped with our animals (letting our dog out while we were at the hospital) and with the household chores. Here are some suggestions: mow the yard, shovel the drive way, drop and pick up a load of laundry at the cleaners, or give a gift certificate to a maid service.

• I had one friend that would listen. That friend was amazing at it.

• Other friends went out of their way to face the awkwardness of not knowing what to say or do and visited us and Charlie.

What Was Not Helpful:

• For whatever reason, almost everyone we ran into said, “If you ever need anything…”. Instead of the sentiment that was intended, we started to hear, “Sucks to be you” every time it was uttered. I, now, loathe this phrase. Alternately, offer to do something specific.

• It added to the stress and chaos whenever someone would volunteer to do something and cancel at the last minute. We were counting on those things getting done.

• I had someone ask me what I needed. When I told them, they ignored it and proceeded to tell me what I needed. Not only was it not helpful, it was frustrating and dismissive.

• Silence. Not saying anything can be much more painful than saying the wrong thing.

Why I Blog

Why do I keep a blog? It is important to ask myself this question from time to time (especially when others are asking me). By answering it, I remind myself of where things started and assess where I want it to go.

The origins of my blog can be traced back to Charlie’s first NICU. A few days passed before I stopped crying in front of Charlie’s isolette. After which, I wandered into a NICU scrap booking class offered by March of Dimes NICU Family Support. Despite that I am the last person in the world that anyone would expect to see in a scrap booking class (and incredibly socially awkward), there I was.

I suppose that I needed a break from my reading at Charlie’s bed side (it was a teaching hospital with an amazing library). Or maybe, I was desperate to understand and become involved in the new world into which I was tossed. I am unsure of the reason, but I got more than a scrap book out of it.

I was so heart broken, bewildered, saddened, and despondent that I barely said a word the first class. I mostly listened. Hearing the other NICU moms’ discussions somehow made things seem a little bit normal. With each scrap I pasted, things seemed to get better for me.

I learned about what to expect, the way the NICU works, the language, and I started to understand. I began to process what was happening. I would hear other moms talk about how they felt. In my head I would respond, “That is precisely what I feel.” or “I don’t agree. This is how I feel…” It enabled me to comprehend my own feelings. By the end of Charlie’s stay at that NICU (she transfered to a second NICU), I had become one of those chatty moms and had made a very good NICU mom friend.

After Charlie was transferred to a NICU with private rooms, I scrap booked at her bedside in between hands on care times. Once Charlie came home, I completed the scrap book and abandoned scrap booking all together. By then, I was able to combine a few words with the pictures and logged our journey on Facebook.

After we moved, I had graduated to Tumblr. It did not take long until I had a WordPress blog.

I realized that I had no idea what I was doing (the last thing I had written was a tedious technical paper on Dendrimers as Nanocontainers) and started an informal blogging/writing education. In some of my free time, I read about my new blogging and writing hobby through websites and books. My blog is still in that stage where I imitate the sites that I admire or learn from. Eventually, this will evolve it’s own unique identity.

Will I have paid advertising? No (with the exception of advertising that WordPress itself may include because I have a free site), I’ve decided to keep this experiment a hobby. When will I stop blogging? I’ve decided to give Charlie her privacy in a couple years and discontinue this blog.

I blog because, in some way, I still need that scrap booking class experience. I need to see how far we’ve come and to process what is occurring in our daily lives. I want to hear those other moms’ discussions. I wish to express the fact that this (post NICU life) is really challenging and not be pressured to be optimistic all the time. I desire to contribute honest dialogue so that other parents do not feel alone. It is my hopes that all of this will at least help someone other than just myself.

In a nutshell, this is why I blog.

Charlie at the park earlier today.

Six Important Posts Written By NICU Parents

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

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

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

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

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

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

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

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

How Charlie Got Her Name

It is not unusual for couples to waste a vast amount of time finding the perfect baby name. My husband and I were one of those couples. Frequently, I am asked questions about Charlie’s name. Is Charlie short for Charlotte? How did I decide to name a girl Charlie? This is the tale of how Charlie’s name came to be.

I approached finding the right baby name as if it were a research project. Countless baby name websites were perused, friends were used as sounding boards, books were searched for inspiration, and important naming considerations were noted from various articles.

My husband and I made an agreement. If the baby were a boy, he could name the baby while I possessed veto power. If it were a girl, vice versa. We were tipped off at our fourteen week ultrasound that we were having a girl. That hint was the starting gun for our great baby search.

Our favorite name (at the time) had been used for our sweet dog, Kaia. We needed another name.

One afternoon, I drew up a list of baby names that I liked from my research. I liked Piper (it had the bonus of being a Phish song), Kasey, Kali, Adrianne, and Ryan.

As quickly as I rattled my list off to my husband, he vetoed them. That was our routine for a few weeks. I would get excited over a new name idea and my husband would shoot it down. We were deadlocked.

One night, I started listing the names of people I knew. I recalled all the Charles that I have known. I have crossed paths with a number of Charles who have positively impacted my life. I sighed and thought to myself, “If only it were a boy, we could name him Charles.”

A light went off as I let out the last of the sigh. Charlie. A girl could be named Charlie!

Franticly, I scribbled down spellings… Charli, Charleigh, Charlea, and Charlee. Afterwards, I hesitantly presented the list to my husband. I suspected that he was going to hate it. A quick veto could extinguish my excitement and send me back to the drawing board. I had grown weary of the whole process.

He was silent while he scanned the list and considered my offering. I held my breath as he started to speak. When he said no, I turned to walk away. My back was to him when he continued, “But, I do like C-H-A-R-L-I-E”.

This was a surprise. I had not included “Charlie” on the list because I was confident it would have been vetoed.

We had done it! We had agreed on a name that we both liked. While it was easy to pronounce and spell, the name had meaning and honored some very dear people.

Now that it has been in use for over a year, we are finding that the name is quite memorable. However, I do not know if I can really attribute that to the name or the remarkable baby who bears it.

Learning To Walk

Yesterday, the early intervention therapist started the conversation about Ankle-Foot Orthotics (AFO) for Charlie. While I was hoping it was something that could be avoided, I knew it was a possibility. Her developmental pediatrician mentioned that Charlie may need orthotics when he first assessed Charlie.

A couple months after Charlie was discharged from the NICU, something was awry with her motor development. The first indication was torticolis that was discovered while she was hospitalized for a feeding issue. Consequently, she was enrolled in PT through early intervention.  Shortly there after, her arms and hands were rigid while there was something unusual with the muscle tone in her legs.  Furthermore, she had missed her expected milestones. After discussing my concerns with her regular pediatrician,  we agreed a developmental pediatrician’s opinion was needed.

After a thorough evaluation by the developmental clinic, it was noted that Charlie was delayed in gross motor, fine motor, speech, and feeding. Additionally, it was documented that she had sensory issues. She has made amazing progress since the initial evaluation through PT, OT, and speech therapy. The improvement was so great that I hoped orthotics were no longer in the picture.

Unfortunately, it seems that Charlie is stuck once again. She has learned to pull to a stand. However, for some reason she is limited to only standing for a few seconds on her toes. She will “walk” on her knees. Since she has vision problems affecting her depth perception, there was the possibility her new glasses would help. But, there has been no improvement in her ability to stand or creep.

Her therapist has recommended that we look into the possibility of AFOs to aid Charlie. I am not sure how I feel about it. Part of me is worn by the thought of additional appointments, I feel sad for her that she has to learn to tolerate another device, another part is frustrated that I can’t find the solution as to why progress halted, and the last part is hopeful that this will be what she needs to move forward.

With that hope, I made an appointment with Charlie’s developmental pediatrician to discuss AFOs and this recent development. This may be how she learns to walk. At the beginning of her therapy, I wondered if she would even be able to do that.

Charlie’s dad dries her off after a bath.