Tag Archives: pediatrics

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.


How Little Is Understood

Only a handful of people will ever fully understand any of the feelings involved in Charlie’s birth. That is why I became so annoyed with this article that repeatedly appeared in my social media feeds today.

Numerous moms lauded it and responded with proclamations of sisterhood. However, not one of my friends that have lost a child praised it. Nor, did I see any of my fellow micro preemie moms passing it on.

The thing is, unless you are a micro preemie mom, you can’t possibly understand what I’ve been through. Even then, our experiences may be vastly different. Similarly, I can’t pretend to understand what my friends who have lost a child have experienced.

Yes, you may be able to imagine a bit of the fear that I felt when Charlie made her early arrival weighing in at 790g. But, you can’t ever imagine what it was like for me to sit beside her isolette in silence for days, unable to touch her or hold her. I maintained the vigil simply because I did not want her to die alone.

You can’t imagine the loneliness I felt when people constructed excuses not to visit me and my baby because it was too hard or uncomfortable. You can’t imagine the powerlessness I felt as I pled for my newborn’s life.  You can’t imagine the heartbreak, the anger, the fear, the jealousy, the envy, and the profound sadness I felt during her NICU stay. Each day, I woke up and whispered to myself, “Please, don’t let anything bad happen today. Please, don’t let my baby die today.”

Eventually, she did come home but it was not over.

There was more heartbreak and sadness that came with diagnoses and countless unknowns. Every little milestone was and is celebrated like a hard won victory. Because, that’s what they are.

Most importantly, there are the bits that most likely didn’t cross your mind. My relationships with friends and family have changed. Some for the better while others were broken or abandoned. The stress rocks a marriage. I feel disconnected from a lot of the world around me. I no longer relate to most of my peers.

While I’ve come out of it stronger, more resilient, wiser, and braver, part of me is wounded. I lost my sense of safety. I fight through anxiety every single day. I am haunted by guilt. Periodically, I mourn the loss of my birth story, the loss of my child’s babyhood, and the loss of the imagined life we were supposed to have. I will never be the same.

Each time I see the article pop up in my feed, it’s a slap in the face. It minimizes my feelings and is dismissive of my trauma. Instead, the article shows me how little you do understand. I don’t care that you are a mom. You can not possibly know. You are not supposed to know.

Something horrible happened to me and some of my friends. There are some things so horrible that you can’t understand unless you experience them first hand.

For your sake, I hope you don’t… because you’re a mom.

 

 


Fall Festival And Time To Fatten Up

We started today off at a Fall Festival at Sky Meadow’s State Park. There was a chill to the air, low lying fog, and the ground was wet. That is precisely why we chose today to go. We knew the crowd would be sparse.

Our visit to the festival was a fun and relaxing time. Charlie was afraid of the baby cows in the petting portion, loved the blacksmith exhibit (as usual), liked picking her own pumpkin, played in the kids area, and enjoyed the food vendor. But her favorite part was a display set up about Chesapeake Bay water shed.

10639600_10101976504940129_9113146869104312045_nThe display consisted of a table with a model garden set up on top. The garden was complete with vegetables, plants, and plastic back yard wild life. Hanging off the side of the table was a sheet that displayed what is under top soil. Under the table (behind the sheet), was a crawl way in which there were plant roots from the above garden.

Charlie loved the crawl way.

The stress of the cows mooing (it was an ongoing sensory thing we had to contend with) and the excitement of all the activities tired her out quickly. We ended up leaving earlier than intended. I had planned on letting her play outside all afternoon.

Our early departure turned out to be a good thing because the home health nurse arrived at our house an hour before her scheduled time. She performed her usual rituals and listened to Charlie’s lungs to ensure aspiration pneumonia does not become an issue, checked her vitals, and weighed Charlie.

Charlie has been eating very well recently. So well, that I had expected a leap in weight gain. Unfortunately, Charlie lost weight according to the weigh in. Not a huge amount of weight, but none the less, weight loss (half a pound).

I have racked my brain in an attempt to figure out where the weight went. I made sure there weren’t any variables between weight checks. We used the same scale, naked weight, and so forth. The only reason I can imagine for her weight loss is that she is incredibly active. Energizer bunny active.

So it’s back on the phone with the feeding clinic for me on Monday. Once again, I have no idea what to do about Charlie’s feeding situation. Who ever knew something like feeding could be this complicated?


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.

10513354_10101809940007589_5033501280039906211_n 10500270_10101809940017569_6025134730848158920_n

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.

preemie feeding

Charlie golfed a little on the Fourth.

 

 


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.


A Proud Mommy Moment

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

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

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

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

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

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

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

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

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

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

 


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.

 


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.


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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