In Sickness And In Cold

A quick check in since I haven’t posted for quite a while. Charlie’s third birthday in May is slowly approaching. I’m starting to wrap up things up and prepare for Charlie’s transition out of Early Intervention. Additionally, I’ve written my final post for Preemie Babies 101.

Earlier this week, Charlie and I spoke to a Social Policy class at my alma mater. Other than having to get up before dawn to do so, I enjoy the opportunity to speak with college classes. I find the students to be inspiring and I leave feeling optimistic about society’s future.  Hopefully, they’ve learned something from me. As always, Charlie was the star.

The temperature this week has been frigid. I don’t know if it was due to the dry air or just from being out, but Charlie has her first cold. Despite the runny nose and associated discomfort, she’s doing well and her lungs sound great.

Feeding, on the other hand, is another issue. Later this spring, Charlie will attend an intensive feeding program. I plan to post updates more during the program.

With Charlie being sick and the snow cancellations, it has been a rather laid back and quiet week here. I have no complaints.

 

 

10 Things You May Not Know About Me And My Preemie Mom Life (Or Confessions Of A Preemie Mom)

Because it’s Prematurity Awareness Month, I feel like I should be writing more this month. However, my mind is rebelling against any attempts I make.  It’s more than writers block. I have a lot of negative feelings when I think of writing about premtaurity. Today, I thought I would just go for it and write those thoughts I have but don’t share.

1) I am not strong or brave. I am simply a mom. I do for Charlie what any mother in my position would do. We’ve been handed more challenges than some. Quite honestly, I feel like I’m barely holding it together.

2) I am so very tired. No, not the tired other parents complain about. The tired that comes from things like fighting regularly with insurance companies, cutting excessive red tape to receive services, attending daily therapy or doctor appointments, having the same conversation over and over again with different providers, and keeping up with medications, orthotics, and procedures. Add regular parenting responsibilities to everything and I end up exhausted.

3) I am jealous and envious of other moms. I know I shouldn’t compare. But, I’m human. The jealousy stems from the idea that they have what I, once, was supposed to have… a normal baby and toddler experience. I’m envious of those moms whose kids can walk well (and not fall flat on their face ending up with a bloody nose or busted lip) or whose kids can eat independently. It’s petty and small but I deal with a lot of envy and jealousy.

4) The little things mean so much. I have become accustomed to living a life of crisis response.  A good day in my world is one where we are all still standing afterwards. When someone holds the door for us or is nice to us for no reason, it makes my day. Depending on how my day is going (such as one of those days where everything goes wrong), it will sometimes make me cry.

5) Crying happens a lot. I cry for a variety of reasons. I cry for what we have lost. I cry because Charlie accomplishes something new. I cry because having a second child is not an option. I cry because I’m touched by someone’s kindness. I cry because I’m frustrated, angry, tired or stressed. It mostly happens in the car or behind closed doors but I do cry a lot.

6) My volunteer work is a form of self care. My volunteer work is my way of dealing with all the anger, hurt, and powerlessness I feel. I channel those things into the drive and energy I use for  my volunteer activities. It is rewarding to make something good happen.

7) Sometimes, I need to go outside. When I find myself losing it, feeling defeated, or at my wits end, I either go for a hike or sit outside with Charlie. Being outside relaxes and recharges me.

8) I can not stand platitudes. I want everyone to know that it’s perfectly acceptable to say, “I don’t know what to say.” or “Yeah, that sucks.” Platitudes rarely, if ever, provide the comfort they are meant to provide. Mostly, they tell me how disconnected I am from you and everyone else.

9) I neglect my own health care. My neglect ranges from small things to big things. This month, I had to go without an inhaler with an $85 co-pay. The past few months, I have been putting off going to the dentist to have a temporary bridge replaced and teeth pulled. For a couple of years (since I found out I was pregnant with Charlie), I’ve needed to have another spinal fusion.

The neglect is not because I’m lazy, cheap, or irresponsible. Mostly, it is because I don’t have the money for these things. I’m priced out. Additionally, while there really is not a good time for back surgery, it’s an impossibility when you have a small child with special needs.

10) Despite all of the things listed above, I’m grateful, optimistic, and hopeful… just not every moment or everyday. I’m grateful for everything we have such as a home, food, and Charlie. I try to see the things we have or could do rather than what we don’t or can’t. I’m hopeful that either I will adjust to this life, Charlie will overcome her challenges, or both.

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

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

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

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

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

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

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

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

Wordless Wednesday

 

  

Midnight Cleaning

I’m writing a very quick post tonight. Charlie went to bed early this evening. I’m taking advantage of the free time and cleaning the house.

The only reason I’m posting is because I promised someone I’d post new pictures tonight. These pics are from a recent playground session. Now back to cleaning…

 

 

Pumping, Consultants, and Latching… Oh My!

Let me be clear, I am not a lactivist. As long as people feed their child adequately, I don’t care how the job gets done. Life is too complicated to insist that there is only one correct way to do something.

In my situation, breastfeeding did not work out. But, I know many women who have been helped by lactation consultants and were able to breastfeed.

My dear friend, Sally, has asked me to pass along this survey concerning lactation consultants. If you’ve ever breastfed (including if you ever pumped) and used a lactation consultant, please take a moment to complete the survey.

Now that the survey has been addressed, I have a question. I am curious. What were other NICU parents’ experiences like with pumping?

Today, we found a playground with a balance beam to work on Charlie’s core strength.

Today’s Feeding Consultation

Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.

Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.

At the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies.  At the end, we discussed what may be the issues and a plan.

From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines.  She also has a milk protein allergy which is common among preemies.

From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.

All of these things, hamper her feeding progress.

The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber.  It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.

The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.

Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.

Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.

 

Time Off

Things are well here despite the lack of posts. The next week or so will be light in posts. We have a busier than usual week ahead of us with Charlie’s birthday, March For Babies, and Memorial Day weekend.

For the next week, I will post even more sporadically than usual. While it may be chaotic, I am looking forward to the adventure ahead.

Mother’s Day Revisited

This is my second Mother’s Day as a mom. I love being a mother. Nevertheless, my feelings towards the holiday haven’t changed since last year. I continue to find Mother’s Day to be a needlessly cruel obligatory day.

Instead of the intended gush of heartwarming feelings, I think of loss. I think of the women who lost children. I think of children who have lost their parents. I think of families where the parental relationships are complicated or broken such as with foster kids. I think of the women who desperately want to be a mother but can’t.

How horrible it is to have a holiday focused around something many have lost or can’t have. I question the reason for its existence.

I believe actions speak louder than words. The sum of actions throughout the year mean more to me than one lousy day of practically compulsory recognition.

I love being a mother. But, I’m not a fan of Mother’s Day.

 

Physicians Please Listen: Five Common Problems With A Medical Home

Despite the beautiful weather, Charlie is spending the day indoors resting and recuperating. This means I’ve had more time than usual to read the articles in my Twitter feed. For some reason, today’s reoccurring theme has been the importance of a medical home.

In short, a medical home is a primary care provider that a patient regularly sees for his or her medical needs. Ideally, the medical home system has more benefits than visiting urgent care as needed. But, as a consumer, I have experienced discouraging obstacles in the use of the medical home model. They are as follows:

1) Terrible Office Staff: There is nothing more frustrating than dealing with lousy office staff. I am annoyed when I have to ensure the office staff does as the doctor ordered. I’ve dealt with  schedulers that have lost orders (and not let anyone know), staff that fail to schedule follow ups as promised, lab and test results that make it to the office but not to the doctor, my child becoming lost in a hospital system, and all kinds of appointment scheduling snafus.

I am paying very high co pays and deductibles for a service. Please manage your own staff. There is nothing I would like to do less when I’m not feeling well or, even worse, when my child is ill. I am more likely to follow up with a doctor or practice that simplifies my life rather than complicates things.

2) Difficult Office Policies or Procedures: If my toddler gets sick, I call her pediatrician and am immediately greeted with a request to hold. After five minutes on hold (sometimes it’s longer), my request for a sick appointment is noted and I am told a triage nurse will call me back. One to three hours later, a triage nurse calls me back. A)She refers to my girl child as a “he” and B) the nurse has no idea that my toddler has special needs. These mistakes inform me the nurse hasn’t even looked at my toddler’s chart as triage is performed.

After I explain the situation and if I’m lucky, I get an appointment for later that day. I spend most of my day dealing with the office when my child gets sick.  If I were the parent of a kid without special needs, I wouldn’t go through all of this. I would just take my toddler to urgent care and get on with my day.

3) Rotating Doctors: I adore my toddler’s pediatrician. She is part of a large practice. I understand the rest of the practice is as capable of caring for my toddler. However, our usual pediatrician knows my toddler well. I don’t have to rehash her complicated medical history each time she has an appointment. The pediatrician also knows what is “normal” for my toddler and is able to distinguish if and when there is a problem. Those are the key reasons I choose to consistently use the pediatrician over urgent care.

But, the importance of continuity is dismissed. Unless I ask (sometimes insist) on the specific pediatrician when she’s available, the schedulers will randomize which doctor an appointment is scheduled with. To me, that is no different than seeing a random doctor at urgent care.  Any doctor has access to my toddlers information, the entire health system can access her electronic records at any time.

4) Insurance Coverage: There have been a few occasions when I have had to change primary care providers due to changes in which insurance is accepted or which insurance coverage we carry. Insurance changes make it nearly impossible to maintain a long term doctor-patient relationship.

5) The Practice Over Schedules or Takes On Too Many Patients: For my toddler, I have to schedule well visits at least three months in advance. If I don’t, I’m out of luck or at the mercy of the cancellation waiting list.

Frequently, I receive a recorded message that the office is closed when I call the office (during office hours). That is the default message when all the lines are in use. Once I do get through, I am placed on the usual five minute hold.

These types of things are aggravating and I can’t blame other parents for choosing the more convenient urgent care option. Although, I agree with physicians that argue the importance of a medical home, I believe it is time to rethink things. If patients are opting for urgent care as opposed to a regular care provider, remove the obstacles that make urgent care facilities an inviting alternative.

Post Surgery Hiatus

Today, my sutures were removed. I’m healing well from the surgery. However, I’m mentally and emotionally spent.

You may have noticed the lack of posts. I’ve been enjoying the down time outdoors.

Unfortunately, it is back to the grind tomorrow. I hope I can keep up.

 

Charlie’s first time walking in the sand at Lake Anna State Park.

Coriena Into Easy Answers

I know, I know… please forgive the alternate spelling of Corrina.  I could not resist the esoteric title. It is a fitting description of my week.

This week, I’ve run a social circuit of sorts. First, I had coffee with one of my very first friends from college and fellow RA, Coriena. It was nice to catch up, reminisce, and see each other again. She met Charlie for the first time.

Later in the week, I spent time with two friends from my moms group. While such visits further stretch a schedule that is already taut, they have proven to be crucial for my sanity. In my exhaustion, I frequently underestimate the value of socializing with others.

Today, I had an appointment with my primary care physician in which many questions were answered. He had been out of town over the holidays which left my questions at the mercy of doctors who were unfamiliar with my case.

Today, I got my answers. First, I will need another round of prednisone to conquer this current asthma flare up. Second, the conclusion has been reached that I will have my gall bladder removed. The first issue obviously has possible implications on the second.

I have my fingers crossed things work out. I’m exhausted from not feeling well the past few months. I have really been struggling to keep up. I find it interesting that simply acknowledging those facts make the situation more bearable.

This is how we passed the time while waiting for my prescriptions to be filled.

Swim Class, Color, and Change

I greatly appreciate everyone who weighed in on yesterday’s post, Therapy Burn Out. It’s always nice to realize that I’m not the only one who feels burnt from time to time. Today brought about some needed change.

Charlie and I started a “Mommy and Me” swim class last week. Her first class was during the two degree weather. Understandably, she was too cold to enjoy it and mostly clung to me. We vacated the pool early and sought warmth.

Today, we had our second swim class. Despite Charlie’s initial hesitance to get back in the pool, she loved it. She squealed with delight as she splashed and learned to kick. It was a break from our usual monotonous routine.

Afterwards, Charlie napped while dad worked from home. I took advantage of the lull and went to get my hair trimmed.

For those who don’t know, I had long hair before the NICU. In order to simplify life, I had it cut off to an extremely short length. I kept it short while Charlie was an infant.

Now, I’m in the process of growing it back out. Getting a trim has become rather robotic. Every few months, I get my hair trimmed. I climb up in the chair and say to the hair dresser, “I’m growing it out. Please clean it up and prevent a mullet from growing.”

Today, I was prepared for the routine. I sank into the chair and just wanted it to be over. Fortunately, I had a chatty hair dresser. Our conversation from my initial comment blossomed into a long discussion of all the times I cut my hair off. I made the comment, “I’m bored with my hair. I wish I could dye it. However, the dye won’t take since I’ve been taking prednisone.”

The hairdresser confidently declared she could color my hair. I was skeptical as she explained how she would do it. After hearing the details, I asked to see the color swatches. I pointed to one and said, “I kind of like that one but I like it brighter.” She insisted she could make it as bright as I wanted it and suggested I use a darker base color. I decided to give her plan a try.

The end results? Not only did she successfully color my hair but it is the best color I have ever had. I am thrilled with it. Most importantly, it was a little bit of change I needed. I feel like it gave me my second wind.

Currently, our world is full of restrictions, routines, and rigid structure. I think it is important to break out of that often enough to avoid getting stuck in a rut.

My friend, Sally, said that I couldn’t write a post about color change without a selfie. The color would not photograph as bright as it actually is. I think that Charlie takes the best selfies.

Ordinary Time

If you are a regular reader, you may have noticed the lack of posts recently. It is due to a couple of reasons.

First, I’ve been somewhat ill for the past week and a half. Because of this, I am taking it easy. Charlie’s dad has been attending her therapy appointments with her. I have been forgoing scheduled events when I can and mostly reading books at home. I am sorry to say the slower schedule has reduced my blogging inspiration significantly.

Second, not much has happened in our household other than our preparations for a small Christmas. There is a lull in our usually hectic world.

I realized as a kid that the church calendar contained “Ordinary Time”. After seeing this, I remember thinking “How boring!” Especially since, feast days and holidays often got us out of class to attend mass. But, I digress.

Ordinary time is a good description of where we are. There are currently no highs of unexpected or hoped for gains and no lows of frustrations or sadness. No, it is not boring.  It is necessary for my sanity and greatly needed so I can deal with my health concerns.

As Christmas approaches, here is to hoping for a quiet holiday season. We shall see if it actually works out that way.

My back yard has become a winter wonderland recently.

A Typical Day

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

Someone asked me, “What is your typical day like?”  I was unsure of how to respond.

Every day is different. Most days, have some kind of doctor appointment or therapy scheduled. On the days that don’t, I go grocery shopping, run errands, join in play dates, clean the house, and so fourth. Quite frankly, other than the scheduled appointments, I figure the day out when I wake.

After much thought, this is how I would answer if I was asked about our typical day again.

• I wake up before Charlie. While eating breakfast, I look over the day’s scheduled appointments or figure out my plans for the day.

• After breakfast, I take a very quick shower, shove things in the diaper bag, make a bottle, and draw up Charlie’s meds.

• Charlie awakens by this point. I change her, feed her (she gets fed every three hours from this point until bed), medicate her, get her dressed, and stick her in the car seat.

• We go where ever we are supposed to be that morning. If it is an appointment through early intervention, I scramble to pick up because the appointment is at our house. I am expected to participate in therapy appointments.

• Afterwards, I try to find something fun to do that works on her therapy goals (or join up with our moms group) and squeeze in lunch for me. Possibly, cram in a walk.

• We return home (or I walk in the park) and Charlie naps for an hour.

• Charlie plays independently while I tend to dishes or laundry.

• Charlie’s dad comes home or finishes work. We eat dinner.

• Charlie’s dad plays with her, bathes her, and medicates her while I read or blog.

• Charlie says good night and goes to bed.

• Around midnight, Charlie is awakened for a quick diaper change and a late night feed. Afterwards, she falls back to sleep quickly.

More often than not, that is what our day is like. Of course, there are variations and it rarely runs as smooth as it looks on paper. There are variables that affect the course of the day such as poor weather, Charlie does not cooperate, sleep deprivation, one of us is ill, etc.

Preemie parents, what is your typical day like?

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

Crunchy

We had a busy day today. Charlie had music therapy. After music therapy, Charlie and I went for a hike.

During the hike, we came across a large rock. I decided to take the opportunity to let her stretch her legs and practice standing. She liked the crackle of the leaves under her feet. It was the first time she experienced it. I love moments like those.

Sometimes It’s Ugly… But Not Always

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

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

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

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

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

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

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

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

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

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

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

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

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

But, it also possesses beauty and awesomeness beyond words.

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

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

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

From Where I Draw My Strength As A Preemie Mom

Let’s face it, preemie parenting and special needs parenting is hard and can be polarizing. There are days that it brings out the best in me and days it brings out the worst. I’ve found strength in several places. I’ve drawn it from the examples of several people and stumbled upon it in unexpected places. These are the examples that are in my thoughts while I write this.

1) My general chemistry professor.

My hands were shaking the first time I performed the tasks of my baby’s hands on care in the NICU. I was terrified to touch the baby that had dwindled down to one pound nine ounces. My first hands on care session was awkward, clumsy, and uncomfortable as I learned the finer points. The feelings of nervousness, self-doubt, and fear were familiar. It felt similar to my first chemistry lab class.

During my first semester in general chemistry, I was lacking even the slightest bit of self confidence. I was convinced that I was going to break something expensive, start a fire, or cause some minor catastrophe. In hind sight, I realize these things are impossible in a general chem lab.  I was so timid that I had the guy at the next bench light my bunsen burner for me. My professor saw this and darted towards my bench. With out a word, he blew out my bunsen burner. He instructed me to light it. With my eyes closed and head turned away, I lit it. He blew it out and had me light it again. This was how things were between us. I was afraid to try and he challenged me to succeed. His class and labs frequently taught more than merely the chemistry I set out to learn.

The memories and lessons of this first lab experience provided the courage to perform my baby’s hands on care for the first time despite my doubts and fears. Even though the first diaper change was less than ideal, I was not afraid to try again and again until it was second nature like chemistry. Whenever my nerves would get the best of me before hands on care, I thought back to that chem lab and how silly I feel for being afraid of it. I knew one day I would look back at hands on care in the same way. So I kept at it despite my uneasiness.

Off topic: Charlie’s middle name, Allene, came from this professor. I wanted to honor someone who had made such a large impact in my life. He is also one of the Charles.

2) Bruce Hornsby

OK, other than a few hand shakes during meet and greet sessions after a show, I don’t really know Bruce. However, he is one of several live music acts that I have seen so many times that I have lost count (somewhere around forty times). He has inspired me in two ways that I am aware of.

His song lyrics are one such source. For example, whenever I come across someone who insists an idea won’t work or I can’t do something, I instantly sing to myself the lyric “You may be beaten down with your closed mind but don’t try to make it mine”. When Charlie was in the NICU, I would frequently say to my husband “All I want from tomorrow is to be better than today.” I know it’s strange but there are many of his song lyrics that I recite mentally for comfort and encouragement.

The second way he has influenced me was completely unexpected. It started when someone said something horrible to me about Charlie. I was unsure of how to respond and I thought about it the rest of the night. I contemplated a false dilemma of choices. Should I have lashed out in rage and chewed them out? Or rather, ignored it?

I scrolled through my Facebook news feed that evening while I considered the pros and cons of my options. I came across Bruce’s status update. Apparently, some writer or blogger had listed Bruce’s son, Keith, in an article as one of the “top ten white trash” looking college basketball players. Instead of the options I was pondering, he had posted a link to the article with the comment that said something like “We are so proud of our son for representing his southern culture.” I laughed as I realized this was another way of dealing with jerks.

3)My Organic Chemistry Professor’s Approach To A Challenge

My organic chemistry professor was a talented professor. Additionally, he was the most positive and optimistic person I have ever met. To this day, my lab partner and I use the term “Dr. C. happy” and know exactly what is meant. This is why I was concerned when during office hours he weighed in on a challenge I was facing by saying, “I’m not going to say you can’t do it. You can. But, it is going to be hard.”

I ended up barely succeeding. But, I did it.

Later in my schooling, he helped me prepare for a seminar I was presenting. I confessed that I was scared. He insisted I could do it and I needed to breathe. It wasn’t perfect but I survived.

During Charlie’s NICU stay and, less frequently, in our post NICU life, there are times that I think, “I can’t do this. This is too tough. I don’t have it in me.” I take a breath and remind myself… I can do this… it is just going to be hard.

4)My Friends

I am very fortunate that I have a handful of magnificent friends. I am often astounded by their love, understanding, patience, and support. They are the ones who cheer me on. I find strength and comfort from grand gestures like the gift of Charlie’s crib to simple things such as a NICU visit or walking with our March for Babies team.

Off topic: Another one of Charlie’s namesakes named Charles is among this group.

5)Medical Professionals

While these people have been addressed in other posts, I feel this post would be incomplete with out mentioning the support from the professional world.

photo credit: Monica DeMariano

AFOs And Dancing Shoes

Today was a big day in our world. Charlie received her ankle foot orthotics (AFO). Things did not go as smoothly as I had hoped but we made the best of it.

After a lovely drive through the mountains, we arrived at the appointment a few minutes early. Charlie used the extra time for play in the large play area at the clinic. Once again, Charlie sat on the floor and watched the other toddlers walk circles around her. I thought, “You won’t be grounded for much longer.”

After a short while, Charlie was called back for her fitting. She sat on my lap while the AFOs were fitted. During the casting a few weeks ago, she picked out a pattern with puppies playing baseball. I presume it was for the puppies. When the AFOs came out of the box, they had soccer balls, baseballs, and basketballs. No puppies. I don’t think she noticed. However, it did ruin my plans to distract her during the fitting by barking with her. She cried and sang a sad song while they were put on her. I consoled her with the promise of new shoes.

Soothing herself after the fitting.

The man from the clinic’s orthotics department (he is pretty great) provided instructions for breaking in the orthotics. Charlie is to wear her AFOs several times today for one hour at a time, several times tomorrow for two hours at at time, and continue to increase by an hour each day. We were also given many helpful suggestions for footwear.

We left to buy Charlie’s first pair of shoes immediately after the fitting was over.

At the shoe store, a shoe employee helped me find the suggested shoes to fit over the braces. Charlie sat silently as we tried one pair after another. They were bland, clunky, and boys’ shoes. She refused to look at them. Instead, her eyes were fixated on a few sparkly pairs. She smiled and laughed when I handed them to her. Charlie had picked out what she wanted.

I have no idea what we are going to do with the kitty shoes.

Despite my best efforts, I was unable to get the black sparkly shoes to fit over the braces. Defeated, I returned to the bland shoes. Charlie cried when the sparkly shoes were returned to the shelf.

I felt bad and wanted to cry as well. I wanted to yell, “Buying my baby’s first pair of shoes was not supposed to be like this!” After taking a moment to breathe, I decided that I was going to make the black sparkly pair work. She was so good about the AFOs. At least, she could get the shoes she wanted. I asked for a pair of scissors and went to work. I pulled out the insoles and modified other aspects of the shoes. Thankfully, after all that, they fit and Charlie was delighted.

At home, she tried wearing the AFOs and shoes for a second one hour period. She stood independently for the first time. Unfortunately, she is afraid to let go due to all the failed past attempts. Despite her apprehension, she moves nicely as she cruises. It won’t be long until she takes her first steps. I think it will happen once she becomes more confident and gets used to the new movement. It may even be a matter of days.

Such a show off… standing and putting something in her mouth.