Category Archives: Guest Posts

Preemie Babies 101: How A Preemie Birth Affected My Relationships

Today’s post can be found as a guest post on Preemie Babies 101.

My baby, Charlie, was born the day she reached twenty six weeks gestation and weighed a mere one pound eleven ounces. Where as most babies are greeted into the world amidst celebration, my baby entered the world to stunned silence. The shock and trauma of her early arrival not only stole the pure joy of what was supposed to be a jubilant event but, it (and the subsequent NICU stay) altered many of my relationships. Read more… 


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.


Surgery And A Guest Post

Despite my fear and anxiety, my surgery went well yesterday. Actually, the pain over the past few months was worse than the surgery. Currently, I am resting so I don’t reopen my wounds or restart any bleeding.

Today’s post is a guest post (written before my surgery) that can be found on JAM Sessions: Lessons Learned Through A Micro-Preemie. The post Seven Sensory Sensations is part of the blog’s brilliant Surviving Isolation series.

Enjoy!

 


Preemie Babies 101

Today’s post can be found (as a guest post) on Preemie Babies 101.

During my baby’s three month NICU stay, I quickly learned the many adages that are passed around the NICU.  Some were aggravating such as “It’s not a sprint, it’s a marathon.” Others, like “Never trust a preemie,” were daunting. In addition to these, there were two unwritten rules engrained on my psyche that I unknowingly did not understand at the time. I would have been spared the sadness that came with losing yet another dream if I did. These rules were “Every baby is different,” and “Don’t compare babies.”

Essentially, they possess the same significance. I suppose the message is important enough to justify the need for two sayings. Nevertheless, the intended meanings were lost on me. This is how:

Read More….


10 Things Having A Preemie Has Taught Me About Life

From the moment I was hospitalized with pre-eclampsia at twenty four weeks, I found that I had much to learn rather quickly. It started when I had to learn what pre-eclampsia was and continued through out preemie life. Even now, I am still learning. Here are ten things that I learned about life from having a preemie born at twenty six weeks.

1) Frequently, things just happen. I used to think that less than ideal outcomes had a cause. After my time spent on the High Risk Perinatal floor and in the NICU, I realize that many times there is no rhyme or reason to how things play out. Now, I understand the meaning of “C’est la vie!”

2) Heroes don’t always wear capes. Sometimes they wear scrubs (as is the case of NICU nurses) and other times they are disguised in street clothes (like Charlie’s therapists or other people who show unexpected kindness).

3) Perfect does not always mean flawless… especially when used in the context of people. Quality of life is independent of ability.

4) Fight and fight like hell. Do not give up. Whether I’m advocating for Charlie or struggling with limitations forced upon us, most battles can be won in some way. If I lose, at least, I tried.

5) Be selective in choosing disputes and people. Caring for Charlie, managing her appointment schedule, running the household, and recreation time exhausts me. Many days, I feel like I’m barely keeping up. I have to be selective in where and with whom I invest my time and energy. I prefer to be with people and do things that rejuvenate me rather than those that further drain me.

6) My definition of “important” has changed significantly. Most of what was important to me before having a preemie is now trivial. 2013-06-09T21-07-37_6

7) Other than matters of life and death, most things can be managed or fixed. Some things just take more time than others.

8) Remember to breathe. There is nothing wrong or shameful in saying, “I need alone time.”

9) Laugh often… particularly at myself.

10) People can (and will) surprise and amaze me… that includes myself.


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