Category Archives: Pediatrics

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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Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 1380601_10102086778655719_168898052343210150_n

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.

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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.

 


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.

 

 


National Nurses Week: A Patient Says Thank You

It seems like every profession and cause has a day, week, or month dedicated to it. One could go crazy trying to observe all of them. Today is the beginning of National Nurses Week… a week I will make note of for the rest of my life.

If you don’t know why nurses deserved to be honored, consider yourself fortunate. There are many ways I can describe how incredible nurses are.

I could tell you about Sarah. The nurse who welcomed a frightened and saddened me to the High Risk Perinatal unit. Her demeanor made it seem like I was meeting up with an old friend rather than being admitted to the hospital. She let me know that my dog could visit as she detailed the unit rules. Her friendliness and compassion was something I desperately needed at the beginning of this long journey.

I could tell you about Ingrine. After several days in the hospital, different doctors were relaying varying information. My husband and I were confused. Was I going home or was the baby coming soon? One night, Ingrine came in my room to introduce herself at the beginning of her shift. She asked if I needed anything. I said, “I need to understand what is happening to me and my baby.”

She sat down on the edge of my bed and spent half an hour providing an explanation. She displayed diagrams as she described how my placenta was failing and my preeclampsia was increasing in severity. She told me what she had seen happen in similar cases. I asked if I was going home. She took my hand and said, “Not until you have your baby.” I needed the honesty and clarity more than I needed hope. I had to prepare for what was to come.01 Charlie's Birth

I could tell you about the OR nurse. When it was decided, at the very last moment, general anesthesia was to be used for my emergency C-section, an OR nurse asked my husband for his cell phone. Because of her quick thinking, we have mementos of Charlie’s birth. A birth my husband and I, both, missed.

nurses3_editedI could tell you about Jackie and Eileen. They were the NICU nurses who helped me survive Charlie’s first two months in the NICU. They taught me how to care for her and encouraged me to hold her. They made me laugh when I only felt like crying. They took the few pictures I have of Charlie and I together in the NICU. Their care saved my baby.

I could tell you about Marie. She was the nurse that mostly cared for Charlie during her last month in the NICU. We chatted every day like good friends. We trouble shot feeding issues. If I had a question for the doctor, she made sure it got answered… even if I wasn’t there. Marie discharged Charlie and sent us out the door.

I could tell you about, Michelle, Charlie’s home health nurse for the first year. She guided me when I knew there was an issue with Charlie’s delays. She answered my questions and directed me to the right specialist with specific concerns. She rooted for us and introduced me to special needs parenting.

In my daily life, I meet many people. Most come and go with out a name. However, it is almost two years later and I remember their names like it was yesterday.

To all nurses, thank you for everything you do. This life and others would not have been possible without you.

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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.


Preemie Babies 101 Guest Post #2

Today’s post can be found on Preemie Babies 101 written as a guest post. The post is titled What I Value In My Preemie’s Pediatrician. Here is how it begins:

Before my baby could be discharged from the  NICU, I had an impressive list of tasks I needed to accomplish. Finding a pediatrician sat on the top of the list. The project seemed simple but, honestly, I didn’t know what I was doing… Read More

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March Is Child Life Month

NICU Preemie Card_editedMarch is a busy month with several month long observances. Today, I am writing about Child Life. What is a Child Life specialist? There is a very good chance, if you are reading this blog, you may already know.

For those who don’t know, according to Child Life Mommy, a Child Life specialist is:

Child life specialists typically work in a health care setting providing support to children and families during their admission… Specialists prepare patients for medical procedures through play, teaching dolls, visuals and using developmentally appropriate language. They also offer procedural support and teach coping strategies to help empower children and families through their experience.

Child Life Specialists understand what it is like to be the parent of a child in the hospital or a hospitalized child. They are exceptional people that deserve to be acknowledged and thanked. I will do so by sharing our first encounter with Child Life Specialists.

Our first encounter happened unexpectedly. Charlie had only been home from the NICU for a month and a half when she started projectile vomiting. Although she had issues with digestion from the start, it was never like this. Every time she ate, it came right back up with force.

During her second doctor’s appointment to address the issue, Charlie threw up some questionable colored vomit. Her doctor wondered if it could be pyloric stenosis or a malrotation. We were sent to the local pediatric emergency department for some imaging.

We went directly to the hospital. It was the same hospital she spent her first two months in the NICU before her transfer to a second hospital’s NICU.  Because Charlie was only there for imaging, it wasn’t emotionally difficult at first. The doctor examined Charlie and ordered the scans. I expected it to be a short visit that lasted a few hours.

Fortunately, the scans showed Charlie did not have pyloric stenosis or a malrotation. However, we were no closer to finding out why she was projectile vomiting. The doctor admitted her to the pediatric floor.

rehospitlizationThe ED Child Life Specialist came in to meet us while we waited for a bed in pediatrics to be found. She introduced herself and asked if I needed anything. I didn’t know what to say because I had so many needs. I needed to not have that happening. I needed to not be back at that hospital. The Child Life Specialist jumped in to help me with the things she could.

She noticed Charlie only had a sheet covering her and offered her a baby blanket which I gratefully accepted. (Thank you to whoever made and donated that blanket.) Next, she asked if I had eaten and offered a boxed meal. Seven hours had passed since the beginning of the initial doctor’s appointment, I was hungry but didn’t want to leave Charlie’s side. I devoured the boxed meal. Finally, she asked if she could contact someone for us. I declined and wondered, “Who do you contact during a time like this?” and “What do you say?”

That evening, Charlie’s room was ready. The long walk from the ED up to pediatrics is burned into my memory. As demoralizing as the day was, I did a fairly good job of holding it together. Charlie cried as her stretcher rolled through the corridors. With my head hung low, I pushed her empty stroller and trailed behind. It was the saddest parade ever. We passed people in the hallways who said things like “Awww, look how little she is!” and I ignored them without even a glance.

We neared the elevator bank and the smell of the hospital cafeteria wafted past my nose. That is when I knew we were back and it wasn’t some horrible nightmare. There was a flood of emotion that burst through my best efforts to contain them. NO! I DON’T WANT TO BE BACK HERE! We were done with this place! I was done eating that food. I wanted to crawl up on the stretcher with Charlie and sob together. I felt like I failed. I felt like we lost.

baby in hospitalOnce we reached the pediatric floor, another Child Life Specialist introduced herself. I asked a question which revealed my rookie status. The specialist asked, “She hasn’t been up on peds before?” I shook my head and said, “Only in the NICU.” The specialist proceeded to provide a floor orientation of sorts. She explained how to order meals, how the floor operates, where the snack kitchen was located, and how to fold out the chair into a bed (I slept in a recliner in the second NICU.). She offered toys for Charlie but she was too young (or too sick) to be interested.

After a few days, the stay concluded with the determination that Charlie had problems digesting her formula. Her formula was switched to an outrageously pricey formula. She got better and resumed gaining weight.

The readmission was tough. I would have been lost without the Child Life Specialists. When a child is admitted to the hospital, it is often a frightening and chaotic experience. I’m thankful Child Life Specialists are there to help.


Today’s Small Victory: Obtaining Speech Therapy

I couldn’t sleep last night so I sought speech therapy options via the internet. When I woke up this morning, I decided today was the day I was going to find the recommended speech therapy for Charlie. The task ended up being easier than I anticipated.

To begin, I called Charlie’s insurance provider. I wanted to understand what speech therapy services are covered, how many sessions are covered, what is the co pay, who are the in network providers, and what language the prescription needed to have to ensure coverage.

Once supplied with the information, I started to problem solve:

  • Early Intervention (in our state) will only provide speech therapy once a week at the most. It is an option, just not an ideal option.
  • The local pediatric therapy providers were in network but the insurance co pay was high and only once a week services were covered. Another option, but not a very good option.
  • There was the possibility that both of the prior options could work complementary with each other. That idea is a better alternative.
  • During last night’s internet search, I discovered a nearby university with a speech pathology program offered speech therapy. This seemed to be the most promising of all but needed to be investigated further.

I called the university to inquire about the program. Jackpot! They offer speech therapy and it was at a reasonable cost with a possible fee reduction option. Additionally, forms are provided for possible insurance reimbursement.

The university program looks like our best option. I will learn more as we move further along the intake process.

So far, I have received the necessary intake forms for the program via email and the developmental pediatrician is faxing the needed prescription. Our next step is to return the forms and schedule an appointment. The first appointment will assess Charlie’s speech, language, and hearing.

The process didn’t involve the predicted fight that I was prepared for. Nevertheless, I felt pretty victorious afterwards.  My hope is that this post will help other parents generate ideas for securing services for their child.

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Another Vocabulary Word: Apraxia

Charlie’s appointment with the developmental pediatrics clinic yesterday was so-so. It could have gone better. On the other hand, it could have been worse. I have been given a new word to learn and digest: Apraxia.

The day started when Charlie met with the speech pathologist for her evaluation.

The speech pathologist was thrilled with Charlie’s feeding progress. When she was evaluated last April, she would not allow a spoon to pass her lips. Yesterday, Charlie happily munched on crackers and sipped juice through a straw. I proudly rattled off the list of foods Charlie will eat. We discussed my concerns that she often chokes and does not eat enough solid food to meet her nutritional requirements.

During the second half of the evaluation, the speech pathologist assessed Charlie’s speech delay. From what I understand, Charlie should have more words and the few words she has should be clearer. However, her receptive language (her understanding) is great. The speech pathologist mentioned the word apraxia.

The occupational therapist was the next to assess Charlie. During the evaluation, she placed a peg board with pegs in front of Charlie. I had not tried anything similar with Charlie and I wasn’t sure she would be able to do it. Much to my surprise, she followed the OT’s cues and placed the pegs in their holes. I was ecstatic.

Charlie tested slightly below her adjusted age which is a huge improvement over her past OT evaluations. I am proud of Charlie’s progress. A year ago, I was elated her hands had finally opened and she was strong enough to hold a light toy. I did not dare to hope that Charlie would be where she is today. There was too much heartbreak at stake.

Next, Charlie saw the developmental pediatrician. He further discussed apraxia with me and suggested, if at all possible, Charlie receive speech therapy twice a week. He mapped out the obstacles I face such as insurance coverage and finding an appropriate therapy program to provide services.

Also, we discussed whether or not Charlie needed another set of AFOs. He didn’t think it was necessary but wanted to see what the physical therapist suggested. Charlie has hypertonia in her ankles and hypotonia in her knees and hips. We finished our meeting with a discussion about changing from Early Intervention services to private center based services.

Finally, Charlie was assessed by the physical therapist. Overall, Charlie did really well (for Charlie). The physical therapist recommended that Charlie have shoe inserts rather than AFOs.

We finished the long day by fitting Charlie with her new inserts.

Overall, I’m delighted with Charlie’s progress in the PT, OT, and feeding part of the speech evaluation. Although, I’m a little crestfallen that her speech delay is more complicated and of greater concern than I had expected.

Now, I  have the task of implementing the clinic’s recommendations while navigating the obstacles of insurance and available services. It feels a little overwhelming. However, I am chipping away at things a little bit at a time. Hopefully, things will be in place before I know it. Day by day is all I can handle right now.

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Another Big Day With The Developmental Pediatrician Tomorrow

Charlie has a follow up with her developmental pediatrician tomorrow. I call it the special needs decathlon. She will be evaluated by the clinic’s physical therapist, occupational therapist, and speech therapist before seeing the developmental pediatrician. Afterwards, casts will be made to create her new orthotics.

I’m generally a little restless before these appointments. I don’t fret the two hour drive to the clinic because it is mostly enjoyable. Charlie and I sing together through a good portion of it and she sleeps on the return trip.

I have a decent idea of where Charlie is skill wise. I don’t expect any new discoveries. However, that is it: I am afraid of being surprised with another discovery.

We have been working so diligently on the known issues that adding another one would be a little demoralizing. It would be like struggling the entire way through second semester P Chem, unexpectedly passing, and having a prof say, “Oh, by the way, you are also supposed to be working on advanced inorganic chem.”

Yep, that kind of kick in the gut.

If Charlie has another issue that needs addressing, there is really not much I can do about it other than rise to the challenge. Fingers crossed that we have a good appointment tomorrow. Ready or not, here it comes…

Charlie's first time going down a slide by herself. Despite the look on her face, she asked to do it " 'gain!".

Charlie’s first time going down a slide by herself. Despite the look on her face, she asked to do it again.


This Premature Baby’s Day To Shine

Most of the time, I dread Charlie’s doctor appointments. Today, I woke up and felt kind of excited to take Charlie to the pediatrician for a well visit. For once, there were no problems that needed to be solved, nothing that needed to be diagnosed, and not a reason to be referred to another specialist. It was an actual well visit.

Charlie’s progress over the past month has been incredible. It generally goes through ebbs and flows, but the past month or so has been a flood.

Instead of the usual stroller ride, Charlie held my hand as she walked into the pediatrician’s office this morning. During the weigh in, the nurse remarked how premature baby weigh inmuch Charlie had grown since she last saw her. The pediatrician was delighted to see Charlie walk, blow kisses, and say, “Ma ma”. Charlie loved the attention and flirted shamelessly with her admirers.

Charlie still has several things to work on (such as eating, speech, and new AFOs) but I’m awestruck. A year ago, I was enthusiastically sharing pictures on Facebook because Charlie’s hands had finally opened (after months of infant massage) and she was strong enough to hold a toy.

I have similar feelings today as I did when Charlie was transferred to a lower level NICU. I knew she would go home from the NICU at some point but I didn’t dare hope that it would be soon. The transfer was that little bit of reinforcement that she would not be in the hospital forever.

Today, I feel like our layover in Holland won’t last forever. Our flight to Italy just appeared on the airport flight status board. We won’t get there by age two, but it will happen at some point.

Life After Premature Birth

Charlie holds on to her dad’s hand.


Therapy Burn Out

The developmental pediatrician has stated that Charlie is the type of baby the Early Intervention system was made for. I have no doubt that her participation in Early Intervention is a key reason as to why she is doing so well. While it works well for Charlie, I question if I am the type of parent Early Intervention had in mind.

Charlie has participated in the program for over a year and I am burned out.

I have not been feeling well since Thanksgiving. Caring for a child when feeling run down and ill is tough. It is about all I can handle. I don’t want the additional burden of having to actively participate in her multitude of therapy sessions. Nor, do I want to be responsible for her on going therapy.

While I really like a couple of her therapists, I don’t want regular visitors. Even my friends don’t visit frequently or a regularly. These regular early intervention visits feel intrusive. It feels like we are under the microscope even though I know we are not. It is like we’ve traded off part of our privacy for therapy services.

If I feel this way because I’m under the weather, it makes me wonder how working parents feel about EI. Are reasons like these why other parents take “vacations” from therapy?

I know it is important that Charlie receive her therapy services. I am not sure if the current is still the way that is right for us.

Questions for special need parents: Have you taken a break from therapy? Did you change things up? What works for you?

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The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.

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Flawed Parenting

Today, Charlie had an appointment with her ophthalmologist. One thing led to another and the outing turned into quite the adventure rather than the mundane experience I was expecting.

After a forty five minute drive, we arrived at the appointment fifteen minutes early. Charlie was restless and wanted to play in the toy area. I looked over the toy area and noticed a kid playing in the toy area had a horrible cough. I decided not to risk Charlie’s fragile lungs and chose a seat very far away from the other people present.

Once seated, I reached into my bag and pulled out plastic links. Charlie was still strapped in her stroller as we played with the links. I said, “Together! Apart! Together!” She laughed each time and tried to imitate. The little boy with a cough heard Charlie’s laughter and sprinted across the room towards Charlie.

Like a soccer goalie, I jumped up and blocked him with my body position a few feet in front of Charlie’s stroller. I said, “No! She’s very little. She can not handle germs.” It was the nicest way I could relay my thoughts of “Don’t bring that cough over here!”

The boy’s mom gave me a dirty look as she called him back to her. She looked even more annoyed at me when he ignored her and she had to physically move him.

Indifferent to the mother’s icy glares, I sank back into my seat. The calm lasted precisely thirty seconds before Charlie burst into tears. She was genuinely upset as I tried to figure out what the heck was happening. Apparently, she had bitten her lip with the few teeth she cut last night and was bleeding from her mouth.

I picked her up, rocked her, sang to her, and stopped the bleeding. We were called back to an exam room as she regained her composure. I was glad to leave the waiting room.

Once seated in the exam room, her ophthalmologist asked how she was doing. (For those of you who don’t know, there is a minor concern with Charlie’s vision. She occasionally crosses her eyes due to one eye being significantly more far sighted than the other eye.)

I explained that Charlie will not leave her glasses on. She screams, she cries, and she throws the glasses. After a month of trying, we gave up. Her eyes cross occasionally and it has not increased despite our failure at keeping the glasses on her. I felt like a terrible parent after I said all that. My head hung in shame.

The truth is, we have our hands full with feeding difficulties, speech, PT, OT, AFOs, and trying to keep her glasses on. With our full plate, it is inevitable we are going to fail at something. Unfortunately, it was the glasses.

Kindly, the ophthalmologist didn’t criticize or say a negative word. He didn’t need to. I already felt horrible. Instead, the doctor checked her glasses and made sure the prescription was correct. He placed the glasses on her and she began to cry. Immediately, she tried to pull the glasses off.

At the end of the appointment, we agreed that I will make sure she wears her glasses if her eyes begin to cross more than occasionally. We will return to see her ophthalmologist in four months for a recheck.

It was a short outing today. Nevertheless, I am exhausted.

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Mixed Signals: My Experience Reading Medical Professionals

Whether a relationship is professional, personal, or something a little more unusual such as a doctor – patient relationship, communication is key. Many people make the mistake of believing that words are enough or all that matters. However, sometimes what is not said can provide more information than the words spoken.

For example, I was surprised to see the look of fear on a doctor’s face. The first time I saw it on a doctor’s face occurred during my pregnancy with Charlie. I had the miserable experience of having a cold while I was pregnant. A few days into the cold, I woke up and felt more tightness in my chest than usual. The feeling steadily increased throughout the day. I sent a text to my husband that read, “I must be really sick. Can you take me to the doctor? I’m having a hard time breathing.” By the time he hurried home, I found it difficult to talk.

There was no way we could have made it to the nearest hospital through northern Virginia rush hour traffic. We opted to go to the urgent care center a block away. We needed a doctor quickly and had no idea what was wrong with me. After arriving at the urgent care center, I was taken back immediately. The doctor hurried in and started treatment. I remember seeing the look on his face. His wide eyes and panicked expression conveyed his fear. He called out to the nurse, “Call 911!”

The ambulance came quickly and had everything necessary on board. I was treated on the way to the hospital. It was the first time I had a life threatening asthma attack. Up until then, my asthma had been more of a seasonal allergy nuisance.

Next, I received ambiguous answers on a few occasions. This way of saying something without actually saying anything is the most frustrating to me. The morning Charlie was delivered, the nurse told me to call my husband. I asked the nurse, “Are we having the baby today?” while my husband was on the phone. She answered, “If it were me, I would want my husband here.” I wanted to yell, “What the hell does that mean?”

As it turns out, that morning we were dealing with reversed end diastolic flow (more was coming out of Charlie than was going in) in the umbilical artery. The situation has a respectable perinatal mortality percentage.  I am not sure what I would have wanted to hear but being told a lot of nothing was not helpful.

Now, I grow suspicious and wonder what I’m not being told whenever a health professional avoids answering a question. The words “I don’t know” are perfectly acceptable for me to hear. I need it to be followed by who does know or how it will be figured out. I am more at ease with information… even unpleasant information. Bad outcomes are easier for me to deal with if I know it is a possibility. It is better than being blind sided with bad news.

Similarly, I find the look of quiet concern to be distressing. I saw this look many times when I first knew Charlie was significantly delayed. She had trouble moving, was rigid, and missed every motor milestone. Each time she had an appointment with a medical professional I voiced my concerns and asked questions. I had no idea what was wrong but I knew something was not right.

Each time, a doctor wore the same expression after examining her. Invariably, the expression was a mix of thought and concern with a slight narrowing of the eyes. I knew they were seeing what I was seeing. Yet, they did not say anything helpful to address it. Repeatedly seeing this expression is one reason why I did not stop asking questions until I found a doctor who could talk about it and guide me in how to help my baby.

Additionally, nervous habits can be equally as revealing. When I was hospitalized on the high risk perinatal floor, I noticed a pattern in my OB/GYN’s behavior. If there was no news, he would flutter around my room while fidgeting with his coffee and occasionally glance out the window as he spoke. If there was bad news, he pulled a chair up to my bedside and sat down to deliver it. I loathed seeing that chair approach my bedside. However, I was able to gauge the seriousness of my situation moment by moment via his nervous habits.

Finally, I’ve learned to communicate through indirect phrasing. For example, Charlie had an amazing nurse she regularly saw during her first year. As a first time mom, I had many questions. When I had questions concerning Charlie’s delays, issues, or developmental concerns, the nurse would answer with the phrase “If it were my child, I would…”. From one mother to another, it was code for “This is what you should do…”

Her responses were precious pieces of guidance during a time when so few people were willing to provide definitive answers. While I respect the option of self determination, sometimes I really just want to be told what I should do to help my child. Despite the wealth of health information available on the web, I need the expertise of health professionals to guide me and educate me.

To all the health professionals, I want you to know that sometimes what you don’t say resonates louder than what is said. To all the parents, ask direct questions if you feel you are receiving mixed signals. Information is power.


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