Tag Archives: medicine

Three

10476503_10102390539586379_4833958231860515447_n_edited_editedI thought about how to wrap this up for a week. I’ve already written about what I’ve learned and the meaning I didn’t find. Additionally, I’ve written about losses, changes, guilt, hope, awe, and grief. There are 395 posts including this one.

I think I’m comfortable ending here because I’ve said what I wanted to say. Plus, it’s not easy to write with a toddler screaming at me. (Wow, do I miss those long, frequent naps she used to take.)

This blog is the beginning of my parenting story. It is a chronicle of Charlie’s early start. I wrote it for me. I needed to connect, to vent, to make sense of the complex messy emotions, and to document whatever progress came. Thank you to my readers for coming along for the ride.

After Charlie’s birth, we fell behind and no longer fit into the “normal” world. Instead, after much grief, we made our own world. We played outside, made music, climbed, danced, laughed, and picked at food together. Maybe, one day we will catch back up to everyone else. During the course of this blog, I’ve learned to be OK with that “maybe”. I have begun to find peace.

11267762_10102403319834659_1155533460364652965_n_edited_edited_editedIt’s been a lengthy three years. From which, the theme that overwhelmingly stands out is gratitude. No, I’m not grateful for prematurity. Let’s face it, prematurity sucks.

Despite my complaints, I know how lucky I am. I’m grateful for the people who touched my life. I’m pleased to have found what I need even though I didn’t get what I wanted. Most of all, I’m thankful for the privilege to parent Charlie. While I may have nearly cracked, she has been nothing but brave, strong, determined, and full of joy through it all.

Happy third birthday, Charlie! It has been nothing short of extraordinary. I am honored to be your mommy.

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The Countdown

Today was Charlie’s last Early Intervention appointment ever. She has aged out of the program and is on to bigger kid things.

In a week, Charlie will be three. Over time, anniversary season has become easier for me. I remember the dates but I don’t obsess over them. Nor is anticipation or anxiety linked to the days. They come and go like most.

For example, I signed and dated a form. When I saw the date, I realized it was the anniversary of my admission to the high risk perinatal unit. After a few seconds pause, I went about my day and didn’t really think about it again.

While this time of year is definitely easier than years past, I haven’t escaped the emotion of anniversary season. My mood is pensive. Additionally, I find that I have little patience for non sense, people who are jerks, and life’s other irritations.

To cope with this, I’ve been avoiding crowds (even more so than usual) and focus my restlessness on yard work. I pulled weeds while Charlie played in her sand box. I trimmed bushes as she splashed in her baby pool. I assembled a wheel barrow when she napped.

It feels like twenty years since her birth and fifteen since I started this blog. It’s only a matter of days until Charlie is three and I hit publish on my final post.

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Charlie watches fish in the water.

 

 

 

 


Almost Three Years In

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Charlie, ten days old

My husband and I are almost three years into our journey of parenting a preemie. A short amount of time that feels like forever.

In anticipation of the upcoming Parents of Preemies Day, I’ve been asked to write about what prematurity means to us today. The abridged answer? It’s complicated.

You see, currently, I’m angry at prematurity. My anger flows in waves.

At first, I was angry that prematurity nearly stole my first and only child’s life. Then, I was furious because of the long term repercussions it has on her life (CP along with speech and feeding delays). That fury was followed by outrage due to the complexities and strain placed on my family life by having a preemie. Now, I’m irate because it extinguished my hope for having another baby.

But, I’m not only angry.

Despite the anger, I feel incredibly lucky. I am fortunate my baby survived her early arrival. I’m thankful that she exceeded doctors’ initial expectations. I’m grateful for the imperfect and unconventional life we have as a family.

However, I’m saddened.

I mourn the pregnancy I didn’t have (mine ended at twenty six weeks). I lament the typical newborn and toddler experience that was taken from me (we spent over 100 days of her first year in the hospital). I grieve the second baby who will never be.

On the other hand, I’m hopeful.

I’m optimistic that one day we will finally leave all the therapy, specialists, and orthotics behind. I believe that she will one day “catch up” to her peers. I look forward to possibly adopting in the future.

The preemie parent club is a club I wish I didn’t belong too. Even though there are other members, it is a lonely journey. I find it difficult to relate to other non preemie parents because in my world five pound newborns are huge and intake is measured in mL. I feel disconnected from the moms I see in my everyday life. A trip to Target usually involves picking up a prescription rather than coffee or shopping. Most parents claim that time flies. However, I’ve found it creeps by slowly while waiting for another appointment to begin or striving for that next elusive milestone.

IMG_2011As it turns out, I’ve found no meaning in prematurity. To me, it is a collection of emotions such as sadness, anger, grief, rage, loneliness, gratitude, hope, and, most importantly, love. Love is what keeps us from falling apart and helps us find joy in our everyday.

Being a parent of a preemie is not the life I’ve planned for or chosen but, I love it nonetheless. Though the journey is tough, I’m so grateful that she’s here. I can’t imagine our lives without her.


Premature Babies: What You Don’t See

In honor of upcoming World Prematurity Day on Monday, I sent out the following tweet:

It was favorited and retweeted among those who celebrate World Prematurity Day. A prematurity poster toddler of sorts.

You see the before and after pictures. Maybe you think that prematurity is no big deal. These babies seem to turn out fine.

But, these pictures are oversimplifications… only part of a story. What is missing from these posts is everything in between.

What you don’t see is the three months she spent in the NICU perilously clinging to life while enduring countless painful tests and procedures.

What you don’t see is the long demoralizing walk from the ER to pediatrics upon her readmission to the hospital for complications due to her early arrival.

What you don’t see are endless therapy sessions and appointments with specialists in which we hope for and ask from her things that are arduous.

What you don’t see is how hard she worked for every little bit of progress.

What you don’t see is how, over two years later, prematurity continues to affect her life every single day.

What you don’t see are the babies who didn’t survive.

With all of the before and after pictures that are and will circulate in honor of World Prematurity Day, please keep in mind the things that you don’t see. Surviving premature birth is no small feat.


This Year’s Prematurity Awareness Month and Me

Last year, I wrote a post a day for Prematurity Awareness Month. On Prematurity Awareness Day, I wrote a post titled “Why Have Prematurity Awareness Day (or Month)? This year, I’ve stared at a blank screen for nights. I tell myself that I’m waiting for a muse of fire.

If the truth be known, I’m sick and tired of prematurity. Two and a half years after Charlie’s early arrival, not a day goes by that it does not impact my life in some way. Additionally, I think about it several times a day.

No, I’m not obsessive. It’s just that my life revolves around prematurity.

For starters, I am constantly problem solving with doctors, therapists, nurses, and pharmacies. Then, there is the hassle of social services. Charlie’s medicaid waiver should have been decided months ago. Plus, the insurance company likes to waste my time with automatic denials or by providing misleading information. That’s just the obvious stuff.

Prematurity creeps into my “regular” parenting life. If I hear a cough, I cringe and make a quick escape with Charlie. No need to challenge those preemie lungs. Feeding… oh goodness… let’s not get into feeding. During play, I watch to see if her pincer grasp is improving, if a heel strike will miraculously appear while she’s walking, and if she favors her left side as usual.

Currently, I’m stressed about Charlie’s upcoming MRI because it has to be performed under sedation with all the risks it entails. Additionally, I’m trying to schedule her new AFOs (yes, she’s being prescribed orthotics AGAIN) before the end of the year since our deductible has been met. On top of it all, meal time is a juggling act of mentally calculating her caloric intake while coaxing her to eat.

Truly, I think about prematurity many times a day. My brain refuses to contemplate it further and my thoughts about it have been tapped out.

But, that’s why I need to write about it. If, for anything, so that our story is told.

So that people don’t make the mistake of thinking that preemies are just small babies. So that people don’t believe that babies come home from the NICU and are suddenly “fine”. So that people know that some preemies don’t ever catch up and some never come home.

We can do better.

For example, we can fund more research, lobby for better health care policies, and educate more people. By doing so, we can improve the lives of these babies and of parents like me.

I’m very hopeful about Charlie’s future, but I’m tired of prematurity. Everyone else should be tired of it too. Let’s do something about it.

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Where Things Stand With Feeding

While I was in Arizona last weekend, Charlie’s gastroenterologist left a voice mail. The upper GI showed Charlie has significant gastroparesis (delayed gastric emptying).

To get things moving, he prescribed erythromycin (an antibiotic that has a side effect which helps with motility) to be given twenty minutes before she eats.

So far, so good.

Finally, Charlie’s reflux is no longer an issue. Plus, she doesn’t vomit at night, her breath doesn’t smell like vomit, and she eats more than two bites of food. I hope this is the missing piece to the feeding puzzle (which also includes oral aversion and motor issues). Time will tell.

Today, she played in the backyard. She loves her car but she only knows how to make it go backwards.

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The Steps Back

10632804_10101908364064989_7657235980990242876_nCharlie has made so much progress, it’s only natural she would take a few steps back. This was the week for back sliding and hassles.

Earlier this week, Charlie had her medicaid waiver eligibility interview. It did not go as well as hoped. Unfortunately, the medicaid waiver that applies to Charlie has a ten year waiting list. Although I still cling to hope that all this will be a memory in ten years, we are getting on the list.

Later in the week, Charlie had a follow up with the gastroenterologist. There is some question as to what is going on in Charlie’s GI tract. To find an answer, she will have an upper GI. If that is unremarkable, she will have an upper endoscopy. Following the appointment, Charlie went to the splash park.

10419984_10101908363800519_4688971542622721905_n_editedFinally, we gave the big girl bed experiment a valiant effort. However, Charlie is not ready for it. Yes, she got out of bed and wandered around her room. That was not the problem. The problem is that she banged on the walls and door incessantly.

Initially, it wasn’t a problem. We ignored it and eventually she went to bed somewhere on the floor. However, the intensity of the pounding increased until she bruised herself. With her high pain tolerance, her dad and I became concerned she may accidentally hurt herself.

Replacing the crib rail was not an option because she gets stuck in the slats in her attempts to get out. For now, she sleeps in her play pen. It’s OK she is not ready for a big girl bed yet. In the near future, we will try again.

 


All Quiet On The Royal Front

I haven’t had the urge to blog lately. I want to say it is due to lack of happenings. However, that’s not true. There is just as much occurring now as ever. Therefore, I think the change may be in me. Those big emotions are not stirred up on an almost daily basis. I may be settling into my normal.

Oh, insurance does not want to cover a medical necessity? I’m used to that. What’s that? The medicaid waiver process is a giant snafu? I kind of expected it. Are those people judging us as we go about our routine? Shrugged off. Another diagnosis? I saw it coming.

Don’t mistake me. Like anyone, some days are better than others for me. I do struggle from time to time. I continue to feel disconnected from the “regular” parenting world. But, those powerful consuming emotions are not an every day thing anymore. Maybe, more of a once or twice a week kind of thing.

The dust is finally settling after our world was rocked by Charlie’s premature arrival.

On a side note: Today was the first day that I looked at Charlie and saw a little girl instead of a baby. I don’t care what people say. This time did not fly by. It felt like the longest two years of my life.

I happily tossed out the bottles (she takes her formula through a sippy cup now). I was thrilled to take the rail off of her crib. I look forward to the (very far off) day without diapers.

Bye bye baby and hello little girl!

Taken earlier today.

Taken earlier today.


Specialty Clinic On The Horizon

On Wednesday, Charlie will make the two hour journey for her follow up appointments (she gets reassessed in several areas) with developmental pediatrics. I admit, I am a little nervous. The past couple of visits to the clinic did not go so well for us.

I realize we are lucky and Charlie is doing really well considering her extremely premature arrival. But, I can’t shake the feeling that we should be done with all this. I’m kind of like a little kid pouting and saying to myself, “We weren’t supposed to have this challenging of a journey.”

For some reason, it was easier for me to accept the long NICU stay than it is the long period it will take Charlie to “catch up”, if ever.

Sometimes, I think I should stop hoping for the end of specialty clinic visits, regular insurance phone calls, and numerous therapy appointments. Because I hope, each follow up with the developmental pediatrician feels how I imagine a prisoner must feel before a parole board. I see the progress Charlie has made and dare to think, “It won’t be long now until we are finished with this.”

However, my hopes are shot down when a new area of concern is discussed or limited progress is pointed out. Often, I knew of the issue beforehand. However, I had anticipated it wasn’t a big deal. Or, I assumed it could easily be addressed.

Additionally, I feel guilty and greedy for wanting more. We are fortunate Charlie is doing well. That should be enough. I feel selfish for desperately wanting her to “catch up”.

I am not sure what is going to happen on Wednesday. Maybe that is why I’m already anxious and thinking about it. I have my fingers crossed it’s going to be a good appointment.

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Charlie visited Skyline Drive this weekend.

 


I Didn’t Realize It Was Miserable

Thanks to the Parker Lee Project, Charlie received her first case of her new formula yesterday. It has only been a day since Charlie started her new formula but, I’ve already noticed a huge difference. I didn’t realize how miserable feeding had been for us until today.

Charlie has been learning to eat solids for over a year with limited success. Until yesterday, her major source of nourishment was from a partially hydrolyzed whey protein infant formula.

However, this posed two problems that we (her daddy and I) were aware of. First, the formula tasted disgusting so we had to get creative about disguising the flavor. Second, there weren’t enough calories in infant formula to satiate Charlie.  The formula had to be fortified with pretty much any food that flowed through a cross cut nipple.

Honestly, we had no idea what we were doing. But, as long as she continued to grow and gain weight everyone seemed happy with the approach. We (her doctors, her daddy, and I) hoped the spit up, reflux, and vomiting was something she would outgrow.

Feeding had become a complex process of guesswork and mixing of formula with food substances that Charlie was coaxed to eat. She was good about it. Better than I would have been.

But, there was a lot of spit up and occasionally she would vomit for what seemed like no reason at all. We constantly reminded anyone who played with Charlie, “Careful, don’t make her throw up!” Her crib sheets needed to be changed, at least, every two days due to spit up stains. This was our normal.

After her evaluation at the feeding clinic, we learned that Charlie has difficulty with chewing, trouble coordinating the movement of food with swallowing, a sensitive gag reflex, slow gastric emptying, poor motility, and a casein allergy. The gastroenterologist prescribed a specialty formula (a fully hydrolyzed whey protein pediatric medical food with fiber).

There has been a noticeable difference only a day after the switch to the new (and more appropriate) formula.

While it smells gross, Charlie readily eats the new vanilla flavored formula. There is no mixing or convincing her to eat. Plus, she hasn’t spit up or vomited since the introduction of the new formula yesterday morning. Her reflux has improved significantly.

I had no idea how stressful and awful Charlie’s feeding and GI issues were until they improved. It wasn’t until I felt an overwhelming sense of relief when feeding Charlie this morning that I realized how bad things were. I feel somewhat guilty for not making the realization and insisting that the issue be addressed sooner.

As a side note, I would like to inform my readers about The Parker Lee Project. Through the amazing work of the organization, parents in need of medical supplies can apply for the supplies (if available) free of charge. I’m grateful The Parker Lee Project supplied us with thirty days of formula (almost $1000 worth) while we wait for the paperwork to be processed with insurance and the durable medical equipment provider.

Additionally, those who have extra medical supplies that a child has out grown or no longer requires can donate them to this organization. Financial contributions are also appreciated.

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Charlie golfed a little on the Fourth.

 

 


NICU Reunion: Take Two

10492524_10101775114538109_8279231079749444152_n (1)We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.

Charlie and I arrived and said our initial hellos. Then, I grabbed a seat out in the courtyard under the shade of a tree and watched from the sidelines as Charlie wandered around close by.

There were several children’s activities available but Charlie chose to obsess over the storm drain in the center of the courtyard. She laughed and clapped as she walked back and forth over the drain. Eventually, she found the mulch more interesting and occupied the rest of her play time by tossing it in the air.

Afterwards, we saw Charlie’s primary nurse. It was tough but I stuck to my promise that I wouldn’t cry this year. We talked while the other nurses passed around Charlie and doted over her. Charlie flirted shamelessly.

My friend graciously supplied this picture (and permission) for this post.

My friend graciously supplied this picture (and permission for its use).

Today, had a very different feel.  The memories and emotions were not as intense. However, the hospital food was just as bad as I remember it.

It wasn’t long before we had enough and it was time to leave. My NICU mom friend and her daughter joined us for lunch afterwards at a near by restaurant.

Overall, I’m glad we attended this year’s reunion. Last year, I was still reeling from the relatively fresh news that Charlie had bigger issues than expected. This year, I’ve figured out how to roll with what is thrown at us. And Charlie… well, she’s never given up and it shows.

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Finding Coverage For The High Price Of A Feeding Disorder

I used to complain about the hefty price of $23 a can for Charlie’s specialty infant formula. We don’t qualify for WIC and I was told our insurance would not cover it. Until she was switched to another formula at nine months, I had to bite the bullet and pay out of pocket.

Just thinking about that first formula made me wince up until today. It was today that I found out the price of her latest medical food (formula is called medical food when children are no longer infants) and I thought I was going to be sick.

What is a mother to do when her child can not consume adequate nutrition through food but can not afford the doctor’s recommended alternative? There is no choice. I had to figure it out. I knew there had to be a way to get it covered. But, how?

First, I called Charlie’s primary insurance carrier. Sadly, each time I call Charlie’s insurance provider, I hope that the person answering will be friendly, helpful, and accommodating. Not this time. Not ever.

I got a smoke screen. The representative on the phone explained that our drug plan should cover it.

Next, I called Charlie’s prescription drug plan carrier. While I was invited to order the formula through the mail order pharmacy, I was told because it does not technically require a prescription to be dispensed it was not covered.

Afterwards, I called Charlie’s secondary insurance. This time, I was told Charlie’s doctor would have to call before they would even discuss coverage. The person was curt and would not provide any helpful details.

For a moment, I was frustrated and wanted to cry. However, I continued to hunt for a solution. During my search, I discovered many of the medical nutrition companies have pages on their websites that address insurance concerns such as the pages found here, here, here, and here. Apparently, I’m not the only parent who has faced or will face this problem.

I called one of the helplines offered off of a nutrition company’s website. The woman who answered was incredibly helpful in dealing with my insurance company. After an afternoon on the phone with Charlie’s insurance providers and waging a small battle, I found out it is possible to get medical food covered under the Durable Medical Equipment portion of the policies.

Charlie’s prescribing doctor needs to write a letter of medical necessity, supply the needed codes, and speak with the insurance providers. Things are now in his hands. There is a good chance the medical food will be covered.

For some time now, I’ve held on to the thought that the business side of our country’s health care system is shameful. I thought I had seen the worst of it ranging from the uncooperative and seemingly deceptive insurance companies to exorbitant pharmaceutical and equipment prices.

Today, my respect for our country’s health care system has reached a new low. I find it despicable that I’m excited by the slightest possibility I will be able to feed my child the nutrition she requires.

 

 


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.

1517637_10101695765129959_3631522303372407994_n_editedAt 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.

 


I Don’t Mind The Labels

At this point in her journey, Charlie has racked up quite a few diagnoses. They range from spastic diplegia to a feeding disorder. Her doctors do their best to deliver the news gently and with care. But, by the time they are mentioned, I am relieved.

horseI am Charlie’s mommy. I know what she can do well and what she struggles with. I’m the first one to realize when there is a concern. When Charlie receives a diagnosis, the doctors are merely naming what I have already known for some time. I also realize that a diagnosis does not define her or set limits.

Sometimes its tough but, receiving a diagnosis can be helpful. They are tools. Insurance will more readily approve services for a diagnosed condition rather than the generic term “delay”. Additionally, understanding the reason for a delay can aid in overcoming it and identifying the right therapeutic strategy.

The labels do not bother me. They are not who Charlie is or will grow to be. Only she knows how far she can go. I have no plans of letting a label stop her. My job as her mommy is helping her reach her potential and find her place in the world.

 


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.


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.

 


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.


When Does It End?

Last night, I heard a cough. My ears perked up much like our dog’s do when she hears someone approach the front door. I laid perfectly silent for a moment and hoped that I really didn’t hear it as I braced for the next cough. Again, I heard a cough. I groaned as I accepted that Charlie was, indeed, coughing.

Charlie has been lucky when it comes to her lungs. Other than the inhaled glucocorticoid steroid she needed prior to her nasal cannula graduation, we haven’t had to worry very much about her lungs. We’ve directed most of our concern to her motor delays and feeding disorder. I was no longer disquieted by thoughts of her catching something.

However, we are by no means careless. We served our time in isolation and, even now, I apply sanitizer liberally to just about anything I can sanitize or disinfect. We were fortunate that Charlie has managed to avoid respiratory tract illnesses. I counted our escape from lung concerns as one of our blessings. But then, last night, I heard that cough.

To be safe, I scheduled an appointment earlier today with her pediatrician. The weekend was almost here. I certainly did not want her condition to deteriorate over the weekend. There are not a lot of good choices for urgent medical care over the weekend. We’ve been down that road before and I learned my lesson.

I didn’t think she was very sick. But, a thought danced around in the back of my mind and haunted me all morning before the appointment: Is this going to be a big deal that we never saw coming? Is this one of THOSE illnesses?

On the way to the appointment, I was transported back in time to a year and a half ago. Despite her successful completion of the car seat challenge prior to leaving the NICU, I feared she would stop breathing while out of sight in the back seat of my car.

I returned to the old comforting drills. I kept the car stereo silent as I drove so that I could hear the reassuring sound of her breathing in her rear facing car seat. Occasionally, I called out to her and waited for some sort of a response when I could not hear her breathe.

Charlie wasn’t acting sick. In fact, she was her happy self. She must have thought I was crazy. I thought I was crazy. I didn’t think she was very sick. Yet, I felt all this uneasiness.

It turns out that Charlie had a double ear infection and the resulting congestion caused her cough. Her lungs were clear.

Upon hearing the news, I released my held breath and wondered: When does this end? At what point, can I dismiss Charlie’s cough as “just a cold” and not fear returning to the hospital or worse? When will those worries stop materializing in an instant?

Proof that Charlie was not behaving in a sickly fashion.

Proof that Charlie was not behaving in a sickly fashion. This is our grocery store  trip after seeing the pediatrician.


March For Babies Kick Off

March For BabiesI know it’s spring when I see all the purple in my Facebook feed. My friends flood my Facebook and Twitter feeds with solicitations for support of their March of Dimes March for Babies teams… and I love it.

Last night was the Northern Shenandoah Valley March For Babies Kickoff. The team captains were prepped and, as this year’s ambassador family for our walk, I told our story to a room full of people.

A year ago, I was struggling to write our story. Now, it flows freely from my lips as I tell it to a room full of people. I suppose it is a sign that I am moving forward. I’m sorry to say, this may be the beginning of the end to the unflattering videos and pictures of me in tears that circulate the web via different organizations’ websites.

Although, I am happy to report that Team Charlie Allene is more than half way to our goal of $1000. If you’d like to help us reach our goal (or blow it out of the water), you can donate on our team page by clicking here. Every little bit is greatly appreciated and goes to a wonderful cause.

Charlie would not have survived if it weren’t for the work of March of Dimes. Her life was saved by research funded by March of Dimes. For example, she received pulmonary surfactant while she was in the NICU.

Not only was Charlie’s life saved, but Charlie’s dad and I received assistance as well. March of Dimes NICU Family Support Program provided support and comfort to us during Charlie’s three month NICU stay. We were given a NICU themed baby book, offered NICU themed classes, and the NICU support specialist held my hand and empowered me during Charlie’s journey.

We were helped during our time of heartbreak, desperation, and need. It’s our turn to help other babies and their families. Please help babies and support our team.

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One of the first days Charlie and I spent together.

Created with Nokia Smart Cam

Charlie, Charlie’s Dad, and I told our story at last night’s March For Babies Kick Off.


Happy National Social Work Month

I mentioned yesterday that March is a busy month. In addition to Child Life Month, it is also National Social Work Month.

One of the many learning experiences that came with Charlie’s birth was when I found myself in the role of the client. Here is my account taken from an earlier post:

I was well aware of the role of a social worker before I had my micro-preemie. A few years prior to Charlie’s birth, I had earned my BSW. The graduate program decision was in process when my husband proposed the idea of having a baby.

premie under the bili lightsCharlie’s early birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born at twenty six weeks.

It was more than likely difficult for her to visit me during the midst of my nightmare. Anger was one of the many emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. After all, I was one.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room in the back of the NICU and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom.

First, she helped me understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and I attended NICU parent groups she provided. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me she was there if I needed anything.

2012-07-21 001 008After a little over two months, Charlie was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled for unknown reasons.

No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck, frustrated, and had no where else to turn. That night, I pounded out an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly offer ideas of what to do next.

Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I was thrilled to have an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A fight wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to the social worker’s intervention, Charlie would be transferred the following morning at 10 AM.

The social worker was there when I thought I was on my own and powerless. She was a compassionate voice of reason when I was overcome with emotion and overwhelmed by the situation. I can’t imagine how the three months in the NICU would have been without her.

Charlie resting peacefully after her transfer.

Charlie resting peacefully after her transfer.


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