The Week of Hand Me Downs And An Update

The women in my moms’ groups are generous with the hand me downs. Charlie has received many of them during this past week.

Saturday

This is the stroller liner given to Charlie from Judy at Laughing, Living, Weeping. Charlie likes the neck support in that position above her head. It fits Charlie well and is excellent support for the long stroller rides. We tested it out Saturday during a hike.

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Charlie received this sand box over the weekend. Initially, she had a tough time with the feel of sand. But, she loves it now that she is able to tolerate the texture.

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Today, Charlie got her car. So far, she has only figured out how to make it go backwards.

Thank you to the women who have passed these toys and the ride on toys to Charlie. They help further her skill set and growth.

With the holiday, the warm weather, and the upcoming March for Babies, our schedule has been fuller than usual (not a lot of time for writing). For those of you interested in the ongoing details of our story:

Charlie continues to be under observation for the changes with her muscle tightness. An appointment has been scheduled with the developmental pediatrician to discuss the matter further. It is most likely due to a growth spurt.

Also, she has an appointment with the pediatrician to check the fluid in her ears this week. Tubes may be a consideration in the future.

Additionally, the area’s March For Babies is getting closer and closer. I am happy to report that Team Charlie has made goal. However, if you’d like to help blow it out of the water you can do so by donating at our team page.

Other than all of that, we keep plugging along.

 

 

 


Happy Easter!

Charlie had her very first Easter egg hunt today.

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I’m Not A Doctor But I Play One When I Call The Pediatrician’s Office

For a couple of hours last night, Charlie screamed in pain. Other than when she was rehospitalized, I had not heard her scream in pain and it terrified me. She didn’t pull at her ears, touch her head, gnaw on her hand, rub anywhere on her body, nor provide any clues to what the problem was. There was no fever.  She simply screamed hysterically.

I spoke with the on call doctor last night. I explained how Charlie had behaved unusually through out the day and it culminated in the screaming. We discussed if and when she needed to be seen in the ED. The doctor suggested ways to remedy the pain and get her through the night. She explained that it is a tough situation to figure out without examining Charlie. Furthermore, she recommended that Charlie be seen in the office the next day (today).

This morning, I called for an appointment. The office staff asked, “What does the child have?” I answered, “She’s been screaming in pain. I don’t know the source.” The office staff suggested, “It is her ears then?” Frustrated, I took a deep breath and said, “I don’t know. It could be her ears, her stomach, or any other number of things. My baby is in pain and I need help figuring it out.”

“Ma,am, what do you think the problem is?” was the response. Was this a mind game? If I knew, I wouldn’t need help figuring it out and fixing it. The office staff once again suggested that it was the ears. I relented, “Fine, it’s the ears.” At this point, I would say anything to end the conversation that was going nowhere.

She provided me with an appointment time for this afternoon and I promptly hung up. I’m not a doctor but I’m expected to be one to schedule an appointment.


Extreme Parenting

Last night, I had trouble sleeping. I have been feeling overwhelmed lately. It’s not due to a busy schedule. I don’t feel stressed by the volunteer commitments or social events. I have no problem saying “No” to those if they become a source of stress. I’ve been overwhelmed by Charlie’s medical care. The things I can’t say no to.

Late last night, I jumped on Twitter and commiserated with another micro preemie parent (the author of Handpicked Miracle).  I told her how I dreaded the next day’s appointments. How I have nightmares in which I argue with insurance companies, drive to the wrong appointment,  or pay fees for missed scheduled appointments. I try the best I can but, I still drop the ball such as in the situation with the glasses.

She responded, “i know. i get it. its so hard to keep up with EV.ery.thing. Being a parent is nonstop but this is so much more thn that” She’s right. Those of us with extreme preemies (and special needs children) are drafted into the sport of extreme parenting. 

In Charlie’s case, if we aren’t headed to an appointment, then I am trying to solve an issue. What hoops do I have to jump through to get something covered by insurance? Why is she still formula dependent? Why are her neurological manifestations more prominent recently? Why did her sensory issues become more problematic? Why hasn’t this billing error been fixed? Did that doctor’s office send that order? And, what is going on with her ears?

With the age of two not much more than a month away, we are so close but yet so far.

Extreme parenting feels like a grueling race where the finish line keeps moving ahead.

Yes, during the last few days I’ve been struggling. I’ve been weary, exhausted, and thought, “How much longer must this go on?” I feel guilty for feeling this way because I know we are the lucky ones.

Tonight, I arrived home after another very long day. Once things settled down, I opened a package that arrived in the mail. My friend whose baby recently passed had sent Charlie an adaptive stroller insert. Enclosed along with the insert was a giant fuzzy Easter duck. Her caring gesture and thoughtfulness stirred me.

It gave me my second (or is it third, fourth, or fifth) wind.

Anyhow, I don’t care how far ahead that finish line moves. I can do this. I can run this race forever if need be. I have the very best friends and people routing for us along the way.

I am an extreme parent who is fortunate to have extreme friends. Sometimes, I just need to remind myself of that.

Easter Ducky

Not the best picture but this is Charlie and her new duck before bed.


Full Steam Ahead

This morning’s post is very brief. This week has been non stop with Charlie’s regular therapy compounded by appointments and activities.

For example, today, we are headed to music therapy topped off by a near sprint to an appointment with the ophthalmologist. I’m dreading the ophthalmologist appointment.

Charlie’s right eye has been pulling more to the center when she attempts to focus on things. I suspect I’m in for a lecture on the importance of making her wear her glasses. I know it’s important and I could do a better job ensuring she wears them. However, these lectures leave me discouraged with the realization of how tired I truly am.

Now, I have to suck it up and face the music. I have my fingers crossed that today does not hold any surprises.

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Charlie helps select a ball at last night’s Bowling For Babies event.


A Proud Mommy Moment

march1Today, Charlie and I attended the first of three walks we will be helping with in our area. Our official walk with our team is on May 31st. (It is not too late to support our team!)

Prior to the walk, I prepped Charlie’s stroller for the six mile course I planned on walking. It will be a little bit before the adaptive stroller insert arrives in the mail. In the meantime, I cut up a pool noodle and created a booster seat with body support. It is somewhat of a hassle but will work until the insert arrives.

The early morning weather before the walk was chilly. Because of this, I left Charlie bundled up in her stroller and pushed her around.

After the walk started, I put Charlie’s blanket and coat in the stroller basket. Charlie “talked” to me the entire way. It turned out to be a lovely sunny morning.

I am proud to say we completed the walk in a respectable amount of time. Although, my body could tell that I was no longer pushing a little six pound baby up those hills.

march for babiesFollowing the walk, I helped Charlie out of her stroller. She wandered aimlessly and tumbled through the grounds as she munched on pizza. I trailed behind her while she said hi and flirted with the people she encountered.

We passed one lady who said to me, “That is not the one pound baby is it?” I replied with a smile, “This is Charlie.” She explained that she thought one pound babies wouldn’t ever be able to walk.

That was my proud mommy moment. Charlie proved her wrong. I beamed.

It hasn’t been an easy road for us. Sometimes, I wonder why it hasn’t been as easy as it was predicted to be when she left the NICU. Why didn’t she fulfill the super preemie prophecy?

Today, instead of having to explain why Charlie can’t do some things yet, Charlie showed someone what she can do. And that moment, made every bit of the struggle and all the work worthwhile.

 


Special Needs Parenting Merit Badges

Today, I modified Charlie’s stroller for tomorrow’s outing. (I’m still waiting on coverage for an adaptive stroller.) When I had finished the upgrade, I was pleased with myself and thought, “I’m getting pretty good at this.” I was reminded of another blogger’s post written about Motherhood Merit Badges. I think there needs to be Special Needs Parenting Merit Badges. This is what I would include:

MacGyver Badge: For the parent that can, at a moment’s notice, fashion adaptive equipment out of items on hand. Be it feeding equipment, mobility devices, or anything else normally special ordered… If it’s not readily available, this parent can make a working version for temporary use.

NICU/ Hospital Expert: This is the parent that knows the best places to eat, quietest hospital lounges, quickest way to the NICU/pediatrics from the parking garage, alternate hallways in the hospital to avoid crowds, available resources, every hospital and NICU policy, the names of every other long term NICU/peds parent, the on call rotation, and best times to visit. This parent is usually more helpful than the hospital staff.

Automatic Denial Victor: This badge is earned the first time a parent successfully appeals an automatic denial.

Red Tape Guru: Parents who earn this badge have successfully applied for durable medical equipment coverage, insurance reimbursement, Medicaid waivers, and/or other state and federal programs.

Office Staff Diplomat: This badge is earned after repeatedly dealing with incompetent medical office staff and yet remaining cool. These parents are masters at getting what their kids need despite confrontation with ungracious office staff.

Honorary Nursing: Parents who learn what are otherwise considered nursing skills earn this badge. Feeding tube maintenance, injections, and airway maintenance are a few of the skills encompassed by this badge. Included in the badge is all the jargon, esoteric language, and knowledge a parent has to learn about their kid’s medical condition.

Impromptu Therapist: This parent is always inventing ways to incorporate every day activities into speech therapy, OT, or PT.

IEP/IFSP Whiz: No obstacle, school system, or official stands in this parent’s way. They know how to quickly and easily obtain appropriate accommodations  at IEP/IFSP meetings without breaking a sweat.

Which badges would you earn? What badges would you add?

 

special needs bingo

I’ve also made a bingo game of the above badges.


Out Of Left Field

Last week, Charlie’s peripheral manifestations (muscle spasticity in arms and legs) intensified with seemingly no rhyme or reason. At first, I wrote it off as a bad day. I thought she may have been tired or it was the result of a growth spurt. However, it continued over several days. When Charlie chose to crawl rather than walk yesterday, I knew there was more to the issue.

10156073_10101626491704459_480394385_n (1)_editedDuring our outings last week, Charlie carried her arm curled up against her chest and dragged her right leg. I am used to seeing that when Charlie is stressed or tired. It was unusual to see it consistently throughout the day. The following therapy sessions, I asked her therapists for insight. They were as perplexed as I was.

Charlie was her usual happy self despite her body’s betrayal.

The unusual posture and gait continued through the weekend. At yesterday’s speech therapy, I noticed Charlie hardly used her right arm. After therapy, Charlie chose to crawl rather than walk.

I was baffled. She felt poorly enough that crawling was the best option. Yet, she was as pleasant as usual.

Over the course of all this, I exchanged emails with her developmental pediatrician (the clinic is two hours away). We discussed whether or not she should have an MRI. Little kids like Charlie need to be sedated so the imaging involves more complexities than merely an MRI.

With the MRI question in mind, I took Charlie to her regular pediatrician this morning. Based on past experience, Charlie does not communicate when she is ill. I wanted to rule out illness. Additionally, I had more questions that I knew the pediatrician could answer.

Lo and behold, Charlie has another ear infection. There was no fever, no screaming, no stuffiness, nor cough. Nothing to indicate she was sick other than the sudden onset of motor symptoms.

This may be how Charlie tells us that she is sick. I have my fingers crossed that the ear infection is the reason behind all of the changes. Time will tell whether an MRI is needed.

Just when I felt like I was getting into the swing of things this latest issue came from nowhere. One thing is for certain, Charlie keeps me on my toes.

 


Weekend At Morgan’s

Charlie played the drums while boosted on my knee.

Charlie played the drums while boosted on my knee.

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

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

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

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

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

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

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

The difference was obvious.

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

But, I digress.

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

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A Different Kind Of Needs

Sometimes as parents, my husband and I forget about special issues involved in raising Charlie. They become our normal and we forget that they are not part of everyone’s baby experience. This week, I’ve noticed it more than any other point in time.

Earlier this week, one of my husband’s friends had a baby. My husband was excited and tried to think up the perfect newborn gift. His eyes grew wide and sparkled as he exclaimed, “I know! I will get him a case of those nose sucker things!”

I very gently had to remind him that his friend’s baby will probably not, at any point, be fed through an NG tube. Nor, will the baby have reflux through the nose past age one like Charlie. His friend would likely appreciate two or three of the nose suckers at the most. He paused and said, “Hmmm, you’re right.” and shrugged it off.

Up until that moment, I don’t think it occurred to him that Charlie had different needs than most babies. Or, that his parenting experience had been so different from the norm.

Fast forward to today. This morning, Charlie and I attended a fundraising kick off. Afterwards, I decided to use our Harpers Ferry pass again before it expired tomorrow.

The first time we went (on Wednesday), I did not take her stroller and regretted it. This time, I had her stroller already in tow from the kick off.

Once we arrived, I pushed her around for a while. I had the same problem today that I have each time the stroller has been used since she outgrew the infant seat attachment.

10013007_10101629098645129_32093478_nShe has trouble sitting up in the stroller.

I’ve tried to remedy the problem by placing a rolled up blanket around her head and shoulders. It doesn’t really work. I hoped the problem would be a short term issue that went away as she got stronger. Not so much.

Tonight, I polled my Facebook friends (most don’t have this problem) and received several affordable solutions. I thought I would mention the ideas in case any one else is in a similar position with their little one.

First, my friend recommended getting a wedge cushion from a medical supply store and using it as a stroller insert after making the appropriate sized cut out. Since the cushion only costs $30, this would be the most economical of the options.

Second, another helpful friend recommended this stroller liner.

Finally, there are strollers made specifically for this issue. But, they tend to be pricey. I need to check insurance coverage and so forth.

I will investigate my options more thoroughly, proceed with trial and error, and report back. In the meantime, I’m open to suggestions.

 

 


Happy Birthday To Me!

1511914_10101626491694479_773290759_n_editedToday is my 35th birthday. I am officially in my mid thirties. If I got pregnant again (not happening), my medical chart would be plastered with alerts warning staff of “advanced maternal age”.  Does that mean I am now an advanced mother?

Anyways, to celebrate my birthday, Charlie and I spent a lovely afternoon at Harper’s Ferry, WV. The overcast sky made way for the sun just as we arrived. We spent the afternoon playing in the grass by the river, walking on trails, and strolling through town. Oddly enough, I think the shuttle bus was Charlie’s favorite part of the adventure.

Getting older doesn’t bother me. I am not embarrassed by my age nor do I dread getting old. Mostly, I am grateful for the privilege to grow older. Additionally, I’m thankful beyond words to have Charlie with me.

Birthdays do not get any better than today.

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The “B” Word

Charlie has finished her second week of the new speech therapy program today. The program is a good fit for us. I love it.

The commute to each session is a little under an hour. It sounds terrible but it isn’t. To make best use of the time and gas, I plan an activity that is on the way. So far, Charlie has been to the zoo, a book fair, the children’s museum, and the park before speech therapy. Sometimes, we stop for lunch or run errands. After each session, she naps on the way home.

Instead of feeling bad for me, the person I feel sorry for is the student therapist. Charlie is full of energy and curiosity. That is a nice way of saying she gets into everything without a moment’s rest. In addition, the student therapist is being observed and critiqued by her instructor via a video camera link up. The situation seems like it would be a lot of pressure.

Nevertheless, the student rises to the challenge and does a great job with Charlie (and me). I don’t feel obligated to participate in the sessions (although, I do stay in the room for Charlie’s comfort). Yet, I’m not discouraged from providing input, asking questions, or helping. The student does an excellent job coaxing those elusive consonant sounds out of Charlie’s mouth and teaching her how to use PECS.

Lately, at home, I have noticed a difference in Charlie’s speech. She slows down and tries to say words instead of the usual limited babble or closed mouth sounds.

Tonight, at dinner, Charlie said, “Ball” (prior to this she used ba ba for anything beginning with ba). Yes, it was more gluttural than it should have been and it was obvious that it required great effort. But, she did it on her own volition. And to us, it was huge!

Charlie plays with Kaia in the backyard.

Charlie plays with Kaia in the backyard.

 


The Good News: I’m Not Alone

I thought I was bitter. I thought I was resentful, begrudging, hostile, petty, and all those other things. I am not proud of and did my best to suppress some of my thoughts and feelings. But then, I discovered that I’m not a horrible person. Rather, my instincts and feelings are completely normal.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Recently, I agreed to write a monthly guest post for a non profit preemie group’s blog. In my search for inspiration and ideas, I asked my micro preemie parents group for topic ideas or suggestions. They stepped up and supplied many ideas.

That evening, I scrolled through the list of suggestions and made notes. Midway through the list I read the remark, “Please, no more preemie miracle stories.” I could not believe what I read. I paused and read it again. There it was: No more miracle stories. Even more incredible, the several comments that followed were in agreement. I believed I was alone in feeling this way.

Anyone who has ever had a preemie have been told the miracle stories. In the stories, the smallest and the sickest in the NICU eventually go home. They become one of those preemies that quickly and easily catch up by age two with no long term issues.

The stories travel by word of mouth, as articles passed around social media, or posts on blogs. Occasionally, a parent will write a message about their miracle baby in a preemies group with a “Don’t lose hope!” or “Trust in God” moral attached.

I despise these. Because, my baby, like countless others preemies is not one of those stories.

While I understand they are well intentioned, the people who perpetuate these stories do not understand the world many of us exist in (or have forgotten it). I am hopeful that Charlie will catch up eventually. But, I wouldn’t call her progress a miracle. It has been a slow, arduous, frustrating, and desperate journey.

When someone posts in a group about a miracle preemie, to me, it is like eating a five course dinner in a room full of starving people. All of us, badly want our babies to “catch up”. However, it may not be the reality for some and others have to work much harder for it. People forget the reason these stories are so amazing… they are not the norm.

Seeing or hearing the stories is a kick in the gut. I’m happy for those families. But, hearing the tales is simply pointing out another path that was not part of our journey. It doesn’t not provide the intended hope. Instead, I find myself thinking, “That’s nice but it’s another place we were supposed to go but didn’t.”

(For the record, I am unaware of a single parent that “loses hope”. Most micro preemie parents are strong, resourceful, networked, and relentless.)

I thought I was alone in my distaste for these miracle stories. I was ashamed of the annoyed grumbling I did under my breath each time I encountered one. It was a nice surprise to find out that I’m not the only one.

 

 


Why I Am A March Of Dimes Ambassador Mom

A doll that is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

The doll in my hand is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

Today, Charlie and I kicked off another March of Dimes fundraising event at a local store. It was the first time I lost my composure as I told our story.

Why do it? Why rehash a painful story over and over again? The answer is simple really.

These are the reasons why I speak about our story and raise money for the March of Dimes:

It’s for the moms of angels. Even though I can’t possibly imagine the feelings of a loss so great, I want them to know that their baby is not forgotten. I want them to realize that they are not alone as they figure out how to carry on and find peace.

It’s for the moms of preemies. There are very few who understand the heartbreak, sadness, loneliness, and fright that come with having a preemie. I want them to have comfort, support, and hope.

It’s for the moms of babies with birth defects. I want to raise awareness, understanding, and support for those families.

Charlie and I as we finish our story.

Charlie and I as we finish our story.

It’s for NICU babies. I want them to have bright futures.

It’s for every pregnant woman: present and future. I want them to have a healthy pregnancy.

It’s for every newborn. I hope for healthy futures.

It is for myself. I need something good to come from all this (other than Charlie) so I can one day move past it.

And finally, it is my way of saying thank you for saving my baby and many others.


First Week of Speech Therapy

Charlie had her first speech therapy sessions with her new program yesterday and today. I am hopeful she will benefit and make progress.

Charlie’s new speech therapy program is located in a local university. The therapist is a graduate student who works under close observation (watched on camera) by a speech professional (her instructor). At the end of the session, the student and professional discuss their insights and therapy plans with me.

During the past two days, the therapist got to know Charlie and observed her speech through play. The real work starts next week. I am interested to see how it goes.

During next week’s sessions, Charlie will have to ask for what she wants using PECS. Also, she will begin working on speech sounds. I hope that it doesn’t take long for Charlie to catch on. But, I’m also prepared for it to be a lengthy process.

Charlie’s speech and feeding have been the most frustrating of her delays. Mainly, because I have no idea how to help her. With her fine and gross motor skills, I could use hand over hand to guide her through movements until she was able to perform them on her own. I don’t know how to do something similar when speech and feeding is involved. It is a discouraging and helpless feeling.

I really hope this program works. I am out of ideas of what else to do.

playground OT

Charlie’s last OT session was at a park.

 

 

 


Alone Time For Mom Before A Busy Week

A short post tonight, I’m trying to catch up with housework after a very busy weekend.

This weekend, I was lucky enough to get away for a couple of nights. Before Charlie was born, I volunteered with a non partisan voter registration organization. The past two nights, I returned to my old familiar spot of registering voters at live music shows.

I had forgotten how much fun it was.

Obviously, the break from the demands of my usual world was nice.  But, I enjoyed working with the other volunteers and the adventures each night offered as well. A mental note has been made to get out and volunteer more with the group in the future.

In other news, tomorrow is Charlie’s first day of her new speech therapy program. I am not sure what to expect but I am hopeful.

This past weekend was a nice respite before a busy week.

The weather was nice this weekend. Charlie got to play outside without a coat.

The weather was nice this weekend. Charlie got to play outside without a coat.


Charlie Likes Jazz

Last night, Charlie saw live music for the very first time. While she has always liked music (especially jazz), I think last night sealed the deal. We may have produced a music lover.

Charlie’s Dad and I were very deliberate when we picked the venue and show for Charlie’s first live music experience. We wanted it to be as little of a bar like atmosphere as possible. To be sure that Charlie didn’t disturb anyone, it needed to have a quick escape route in case she was noisy or melted down.

We arrived a few minutes before the show started and selected a spot in the back. When the music started, Charlie’s eyes grew wide. Her huge eyes looked at the stage, looked at me, looked at the stage, and looked back to me again. Then, her face broke out into a huge grin.

Charlie watched intently during the first set. She clapped to some songs and hummed to others. We danced together as she flirted with those that passed by.

During the set break, she used a new sign to tell me she was thirsty. After her water break, she got to meet the performers and say a quick hello.

Her eyes grew heavy during the second set. She displayed the tell tale signs that she was sleepy. Hence, we made a quiet exit.

I was thrilled by how well behaved she was. Admittedly, carrying a baby around at a show and keeping her engaged was a lot of work. But, it was well worth the effort. I see more music in our future.

setbreak_edited

It was very dark and difficult to get a decent picture. This is Charlie sitting with her dad waiting for the second set.


The First Time I Held Charlie

When was the first time you held your baby? It was a question posed some where on one of my social media feeds last night. Most of the replies were happy stories of a magic moment. I was unsure how to answer the question and had been thinking about the day since I read the question.

dad'sfirstdiaperchangeCharlie was ten days old when the nurse asked if I would like to hold her. Up until then, I hadn’t bothered to ask. I assumed that because Charlie did not tolerate touch, holding her was out of the question. My nod sent the nurse off to gather a few things.

During the wait, Charlie’s dad had wandered into the NICU from work. We stood side by side as we peered in Charlie’s isolette. Our faces were expressionless and our affect flat from exhaustion, shock, and sadness. “I’m going to get to hold Charlie” I muttered to him. The nurse suddenly appeared with a hospital gown and instructed me to put it on backwards.

I started to take off my shirt. Charlie’s dad look around at the people present in the NICU and admonished, “You’re not going to put that on here, are you?” I replied, “These people don’t care. The nurse would have told me to go elsewhere if I should.” I continued to put on the gown as told.

Dressing in the NICU was my silent act of rebellion. Over the past several days, I’ve come to resent those other people. They were the ones that walked by my baby’s isolette and stared. Despite my presence, they made insensitive comments like, “I didn’t know babies that small could live” or “That baby is going to be here forever. I’m glad I’m not its parent.” They watched my very private moments like it was their personal entertainment. If my privacy didn’t matter then, why should it matter now?

The nurse soon joined us in the few feet of space beside Charlie’s isolette and it became crowded. Charlie’s dad left to make room as the nurse untangled tubes and wires from the isolette. After she finished, she placed Charlie on my bare chest.

My right hand covered Charlie’s entire body as she laid motionless on me. During our cuddle, she stopped breathing twice. Therefore, I was only able to hold her for ten minutes before she was returned to the isolette.

I cried as I handed her back to the nurse. I wanted to yell that it wasn’t enough time. It wasn’t fair. I wanted to hold my baby and dote on her as most parents get to.

Charlie’s dad returned and he could tell by my tears it did not go well. He didn’t bother to ask any questions. We had become accustomed to bad news. The nurse gently told me to keep up with kangaroo care as Charlie gets older.

month oldI followed her advice and tried to hold Charlie about once a week after that first failed attempt. They went as poorly with frequent apneas, bradycardias, and desats.

Finally, when Charlie was about a month old, she tolerated kangaroo care. At which point, she sat for hours on my chest and cried out each time the nurse grabbed her to return her to the isolette.

We don’t have a magical story of our first kangaroo care session. But, that doesn’t mean it isn’t worth telling.


Happy St. Patrick’s Day: Then and Now

St. Patrick’s Day was a pretty big day for us last year. Charlie had officially been released from her six month quarantine. It was the first time we took her to a public place with other people present.  Here is a picture from last year’s celebration:

St. Patrick's Day

This year, we are snowed in with a foot of freshly fallen snow. Charlie did not let that stop her fun. She decided to celebrate by making a bold fashion choice.

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I hope everyone has a safe and fun St. Patrick’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 procedure 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 have a medical home.

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, I carry my toddler’s pertinent medical history in her diaper bag so it is accessible during an emergency.

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.


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