NICU Bereavements

While it is an honor to be able to be a part of this difficult time in a family’s life, bereavements are always difficult in a pediatric setting. They’re of course difficult for the grieving family, they’re difficult for¬†the staff, and they’re difficult for me. No matter what anyone says/does, this is the worst day in this family’s life. Our role as child life specialists is to provide support to the grieving family. This may be by simply sitting with the patient’s mother and listening to her vent, this may be by helping the family create a memory box for the patient, or even just providing tissues and tea. Every bereavement is different as are the needs of each family. During my time in NICU I have found some incredible resources to offer grieving families.

Angel Gowns¬†¬†NICU Helping Hands‚Äô Angel Gown¬ģ Program began in 2013 because we recognized there was an overwhelming need for better support for families who lost a baby. Our Angel Gown¬ģ Program provides comfort for bereaved families through the gift of a beautiful custom-made gown for final photos and for burial services.

I was touched when I received my shipment of Angel Gowns by seeing how much detail was put into the gowns. They’re made from donated wedding dresses and come in a wide range of sizes. The smallest being an “Angel Wrap” for those angels that are too small to clothe, up to extra-large size for infants. The gowns come in individual boxes with a flyer from NICU Helping Hands of various support services they offer grieving families. The gowns are also open in the back with the option to tie, much like a hospital gown.

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Angel Gown for a girl
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Angel Gown for a boy
Angel Wrap for a girl

Teeny Tears Teeny Tears is a service organization that provides tiny flannel diapers at no charge to hospitals and bereavement support organizations for families that have suffered the loss of a preemie or micropreemie child through stillbirth or NICU loss. 

Teeny Tears are another great resource which offer cloth diapers/hats and blanket for the loss of preemies/micropreemies. What I love most about Teeny Tears is that each bundle comes with two diapers and two hats; one for the baby to keep and one for the family to keep.

I have also created an Amazon list of other items I’ve used for bereavements. Click here:¬†http://a.co/iwUT1Zt

NICU Siblings

You may remember that back in June I began providing coverage in NICU. While I am in no way a child life NICU expert, I wanted to share some tips and tricks in working with this unique population and their families. Luckily, my NICU already had a sibling program set in place when I arrived. Siblings ages 3-12 are able to visit their new baby brother/sister for 1 hour each day after completing the child life sibling program. I, of course, lead the sibling program where I go over why their baby is in the hospital, introduce medical play opportunities along with therapeutic activities, and orient them to the hospital. I then accompany the siblings to their baby’s room and help foster that first connection between the siblings. In doing these sibling visits I’ve witnessed some of the most tender, precious moments¬†and I’m so thankful that I’m able to be a part of it.

Here are some of the things I use during my sibling visits

IMG_0621.PNG1. The Big Brother & Big Sister Guide to NICU; this is a workbook I made that goes over everything we need to cover during our sibling program. It includes pictures of things the siblings will see, a dictionary for things they may hear, the rules they must follow while in the NICU, and some therapeutics.

2. Big Sister/Big Brother Award; these I got for free on teacherspayteachers.com. I laminated them and then fill in the sibling and the baby’s name with sharpie; very official!

3. Baggie filled with medical play materials to take home.

4. Crayons

5. I’m a big brother/ I’m a big sister stickers

6. “Your New Baby is Here!” coloring book. I found this coloring book on NATUS.com. Not only are they cute, printable, and developmentally appropriate but you can download them in 6 different languages!

7. (not pictured) gold medal to celebrate sibling for being a great big brother/sister.


For all of the resources mentioned above:

Click here for PDF printables: https://drive.google.com/open?id=1SgijvFCj2Yj5fqNK_eY_wG2D21qDNdUX

Click here for Must Have items for NICU Siblings: http://a.co/6fv0Eav

Diabetes made simple

Novo nordisk has many incredible resources to help patients and healthcare providers learn/teach about diabetes. This is one of my personal favorite teaching materials for a new diabetes diagnosis. To view, click  here.

By going onto their website, you can find many other fun, colorful, child friendly resources that are free and ready to print (click¬†here¬†to view). Not only do they have information for the patients/families, they also have a guide for healthcare professionals on how to provide this life changing information. This guide for healthcare professionals not only breaks down key messages to give the child but also key messages to give the child’s family/caregiver when addressing various topics.¬† All of these resources on their webpage are available in English, French, Spanish, Swahili, and Amharic.

I am a huge fan of resources like these that are free and easily accessible for patients, families, and healthcare providers. I wish I had similar resources for everydiagnosis! Thank you Novo nordisk!

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CCLS on the other side of pain 

As a CCLS, I’m no stranger to pain. Chronic pain, acute pain, sudden pain Рit’s all in a day’s work to help our little superheroes overcome their hospital visit. Lately, however, I have been on the other side of pain as a patient.

In August of 2016, I woke up one morning with dull neck pain. I hadn‚Äôt done anything particularly odd prior to this morning, so I just shrugged it off as ‚ÄúI must‚Äôve slept weird‚ÄĚ. Little did I know that my assumed diagnosis was wrong & that this wasn‚Äôt just going to go away after a few days.

I’ve tried everything to rid my neck pain; everything!¬†Cortisone injections, 2 MRI’s, X-Rays, visited a spine specialist, acupuncture, acupuncture with electrotherapy, changed my pillows, changed my diet to be sugar-free, visited a holistic doctor, two rounds of physical therapy treatments, muscle relaxers, chiropractic adjustments, regular massages, regular yoga, regularly applying peppermint oil on my neck – everything. All of this and yet the neck pain stays with me every minute of every day. Some days are better than others, but I can’t remember the last time I was a zero on a pain scale.

The most frustrating part of what I like to call my “neck pain saga”, has been the lack of support I’ve felt from doctors; many of which writing off my neck pain as just¬†stress related. I know that I’m not stressed, especially not enough to have chronic neck pain! But no matter how much I’ve told my doctor’s this, they insisted it was,¬†just¬†stress related. One doctor even told me to ” suck it up, everyone lives with pain and this is just part of getting older”. Needless to say, this entire journey with chronic pain has been draining, expensive, and in some way a learning experience.

This last year of pain has taught me a great amount and I truly feel that it’s made me a better CCLS. Here are some tips & tricks I’ve learned along the way:

  • The freezy spray really works! When getting my Toradol/lidocaine injections into my neck the freezy spray really takes the sting out of the initial needle poke. However, the actual liquid medication going into the muscle is clearly felt.
  • Deep breathing exercises have saved me. While getting injections, waiting for diagnostic results, having my neck manipulated, laying in an MRI, and even sitting in traffic feeling the burning neck pain; I wouldn’t have been able to get through it if I didn’t know how to breathe. Click here for more on deep breathing¬†¬†
  • There are lots of apps that help you track your pain. My favorite has been Symple. Tracking my pain has helped me find patterns in my pain and really be mindful when assessing how I’m feeling. This can definitely be a helpful tool for teens when transitioning to adult care from pediatrics.
  • Sometimes all I needed was someone to validate my pain – not tell me how to fix it. Having my pain be dismissed so frequently by doctors made me question how real my pain even was. Which is, of course, ridiculous because I’m the only person who can feel my pain and believe me: it’s real and always present. Now when my patients tell me that they are in pain I always, first and foremost, validate their pain.
  • It is incredibly frustrating to be told that I am in pain because of something I have control over (i.e., “you have neck pain because you eat too much sugar”, “you have too much stress; you need to relax”, “your posture isn’t perfect”, “you stare at your phone too much”, “the pillow you use is too fluffy”, “the pillow you use is too flat”, “you’re seeing a chiropractor? you should see a spine specialist”, “you’re seeing a neurologist? you should go do acupuncture”, etc). Whenever addressing someone’s pain, be mindful of how you’re wording your kind advice/suggestions. I know it’s coming from a good place & I certainly appreciate the concern. However, the last thing a person in pain wants is to be kicked while they’re down by being told they’re doing it all wrong.
  • Talking about my pain isn’t always comforting. Being asked on a daily basis by friends and family how my neck feels brought on more feelings of guilt and disappointment, rather than comfort in knowing others care about my health. Especially with chronic pain, whenever I’m asked how my neck is doing I know the other person wants to hear “I feel great! the pain is gone! Thank you for asking” but to say that would be a lie. Instead, I say the truth, that I am still in pain, which then leads to feelings of guilt on my part and disappointment on their part. Trust me, from personal experience and having witnessed my patients this last year, when the pain does get better the patient wants to tell the world!

As for my pain, luckily, by some random movie-like coincidences, I stumbled into a new clinic where I finally feel like I’m being taken care of. I’ve even been given an actual diagnosis; cervical kyphosis – not just¬†stress related! I am still undergoing treatment at this clinic but I am very hopeful that this is where my neck pain will end.

Have you ever experienced the patient side of pain/healthcare? What are some things you were able to apply to your work with children afterward?

Surgery prep

Currently one of my favorite resources to use with my pre-op patients is this surgery prep book from Katie Mense. It’s very kid friendly (non-threatening), easy to follow, and free to download! Download your copy by clicking the link below. original-2467686-1

https://www.teacherspayteachers.com/Product/What-is-Surgery-Book-and-Medical-Leave-note-to-Students-2467686

Teacher Toolbox


I am so excited to finally have my teacher tool box up and running! I’ve always been very organized and now I’m able to have all of my expired/left over medical supplies nicely sorted. You can find your own teacher tool box on Amazon.com – click here. They sell lots of different sizes so make sure to look around for one that best meets your needs. As for the labels, I found mine on tacherspayteachers.com – shout out to Classroom Ispirations! You can click here¬†¬†or you can simply search “teacher toolbox labels” on teacherspayteachers.com and find other themes. Many of them are free like the one I used!

Yoga + Child Life – Part I

You may remember at the end of last year I enrolled in the Rainbow Kids Yoga teacher training ( see post here ). ¬†Let me start off by saying I am by no means an expert Yogi! I enrolled in this course not to deepen my practice or ditch child life to become a yoga teacher but rather to use the theory of yoga in my day to day as a CCLS. Fast forward 7 months after the Rainbow Kids Yoga training: it’s worth it!

I use the skills I learned with Rainbow Kids Yoga almost on a daily basis with my patients. So, what did I learn and how am I applying it to child life? For starters, it’s important to realize that yoga is more than just poses and flexibility. In fact, I don’t use yoga poses at all with my patients. What I do use is deep breathing exercises and guided imagery practices.

I have so much information and resources to share on this topic that I’ve decided to break up this post into 2 parts so stay tuned for more!

As a lover of free resources, I have set up a google drive where I’ve uploaded tons of freebies from teacherspayteachers.com on this subject. Click the link below to view:

https://drive.google.com/drive/folders/0B7up2fwr6___OXJ4MUlJRnNoNjg?usp=sharing

Part I:

Deep Breathing

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Any wise 7-year-old will be quick to tell you that breathing is important Рwe have to do it to stay alive! And while this is quite true, our breath also has a big impact on our mind and how we cope with experiences.  image-4722.jpgSee this picture example of how our breath changes as we become stressed. This is where yoga comes into action! By teaching children different breathing exercises during times of stress/anxiety, they will be able to slow their breathing thus helping them cope, remain calm, and feel a sense of control.

There are TONS of kids breathing exercises you can find with a quick google search. For example one of my favorites is Snake Breath – take a big breath in and as you exhale make a “Sssss” sound as long as you can. Another favorite of mine is Lion Breath – take a big breath in and as you exhale stick out your tongue and make sure to make your meanest lion roar face. Find inspiration online or make up your own! I made up Bubble Breath – inhale and pretend you’re blowing one really really big bubble as you exhale // inhale and pretend you’re blowing out millions of really little bubbles as you exhale.¬†For some little ones the concept of “inhale” and “exhale” may not be appropriate so change up your terminology to something like “smell the flowers, blow the leaves” or “smell the birthday cake, blow out the candles”.

In an effort provide a visual for the patients and to help me remember so many different breathing techniques, I created a laminated breathing cards with different clip art depicting the type of breath.  Shout out to Gretchen Blackmer for the inspiration for these breathing cards http://www.everydaywarrioryoga.com/ 

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Another great tool to use to show¬†patients the effects of breath is to use a ¬†Hoberman Sphere.This is one of my favorite resources to help kids really understand how lungs open and close with each breath. Plus it’s an overall really cool toy and instant rapport builder in my opinion. I’ll guide my patients in doing the different breathing exercises with the Hoberman sphere so they can see the full effect.

Another great tool I’ve used to support my breathing exercises is the book “Breathe, Chill: A Handy Book of Games and Techniques Introduced Breathing, Meditation, and Relaxation to Kids and Teens” by Lisa Roberts. This book breaks down various types of breath and how/when/why to use them. After I purchased this book I read the testimonials on the back and saw one of them was written by a CCLS! Just goes to show how beneficial yoga practice can be in the field of Child Life. You can find this book here¬†on Amazon.¬†51NfLPIAGjL._SX346_BO1,204,203,200_.jpg

I’ve had many kiddos that really enjoy¬†doing these deep breathing practices before/during/after procedures. I even had a patient choose my breathing cards over my iPad for distraction during her first IV! Not only do these skills help them cope with the present situation, but they walk away with a new coping technique in their pocket for future use & that’s what child life is all about!

 

 

Now arriving: NICU 

A few weeks ago you may have noticed on my Instagram account I announced I was moving to a new unit. I have been quite busy transitioning over, orienting, and learning the ropes. However, I am so excited to let you all know that I am now working in NICU! I split my days between our orthopedic/surgery unit and NICU so I still see a wide range of patients/ages/diagnoses which I love. Stay tuned for more in the coming weeks on my transition into NICU. For now however, check out these milestone cards I made for our babies! They’ve been a huge hit with the families and staff; milestone cards are a great way to commemorate important events in these little ones lives.