Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

By the age of 7, I was on my fourth repair. I had three of them before the age of two and then at the age of seven they discovered I reherniated again. This was the first surgery I remember (Thank the Lord) but my parents can remember every one of them. They were and still are my rocks. Up to my fourth repair, my parents treated me the same way they treated my two older sisters, I had a normal childhood of running, playing and getting to be a kid.  

During my fourth repair, I ended up having a hole in my bowel from it sneaking up into my chest, but none of this slowed me down. Two months after my surgery, I was running the mile in PE with all my friends! 

Throughout my childhood all the way through my senior year I played softball, I also tried other sports throughout my childhood. I don’t have two full functioning lungs, but I don’t let it slow me down.  

Winter of 2010 I ended up getting bronchitis, which saved my life. What I thought was chest pain from the coughing and or acid reflex, ended up being my stomach up in my chest. After several X-rays and CT scans they we pretty sure it wasn’t asthma or acid reflex that was causing my pain, it was that I reherniated for the fifth time.

At the age of 20, while just getting accepted into the nursing program and finishing up my last year at the community college this curveball was thrown at me. Thank the Lord for my rocks, my mom was the one who reconnected with my old surgeon whom assisted with three of my four previous repairs. Dr. R whom works at Children’s Hospital in Omaha, NE, didn’t hesitate at all and agreed to look at the X-rays and take me on as a patient again. 

May 10th 2011, I conquered what Dr. R says was a surgery comparable to my very first one. When they opened me up they discovered my stomach up to my 7th rib, and my entire left side gone, they also found my gortex patch balled up in the corner. Dr. R felt like we needed to try a different kind of patch this time around due to the gortex patches not holding up. Dr R performed his very first and only reverse latissimus dorsi, in order for him to get my muscle to lay down properly he removed six inches of my ninth rib. My mom always jokes she took me in as a 20 year old and brought home a 60 year old. That surgery aged me, gave me new limits, chronic pain, a beautiful new scar as well as a dip or as my family calls it blow hole on my left side. 

August 2011, I started nursing school graduated two years later with my RN, BSN. I married the man who stuck by my side through my last surgery and nursing school.  

My husband and I then took the leap of faith not only once but twice and have two beautiful, healthy children. I am Dr R’s oldest and most challenging patient as well as my perinatologist’s first CDH case, pregnancy was rough on me and my babies. I was proud to make it to 34 weeks both pregnancies, with both my babies being diagnosed with IUGR. After our second baby we had three doctors tell us we have pressed our luck enough, it was a hard pill to swallow but makes me cherish each moment with my babies even more. 

In 27 years, I conquered 10 surgeries, 5 repairs, graduated with my RN, BSN, now working in a hospital, became a wife to an amazing husband and proud mama of two! 

Beating the odds one breath at a time!

 

 

News from CHERUBS

Featured Volunteer: Melanie Hensley

Volunteer Melanie Hensley is our volunteer of the week.  Melanie is a member of our Welcoming Committee and volunteers anywhere else we need help with.  We appreciate her so much and are so happy she is a part of our team.  Melanie is the mom to 4 beautiful girls. 

Melanie Hensley is the mother of two CDH babies, both of whom grew their wings.

Read more...

Featured Medical Staff: Dr. Kamlesh S. Macwan, MD, and RN’s Kristin Aigner and Lora Simonson

We would like to thank Dr. Kamlesh S. Macwan, MD, and RN’s Kristin Aigner and Lora Simonson with OSF Saint Francis Medical Center in Peoria, Illinois, for Bringing Hope Around the World to our CDH Families! This wonderful doctor and nurses were brought to our attention by Terry King German, mom to cherub Skylar, “we can NEVER thank these angels on earth enough for saving the life of our sweet miracle, Skylar!!!!”

Dr. Macwan was known to many as the “magician of ventilators and the Yoda of CDH.”  CDH families and various OSF Staff recently said goodbye to Dr. Macwan at the CDH Family Picnic in September and celebrated his retirement. 

Read more...

Featured Cherub: Chris Cavalier

Our featured cherub of the week is Chris Cavalier.  Chris is a 32 year old survivor of CDH.  His CDH story can be found on his family’s website at http://ecmosurvivor.com.  A book about him has also been published and is available through Amazon and in stores at Barnes and Noble, the title is "Alive by Grace: A Mother's Story with a Message of Hope from Christopher.”

Here is an excerpt of Christopher’s story, written by his mom, Suzanne Cavalier:

Read more...

 
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2017 - News from CHERUBS

Featured Volunteer: Melanie Hensley

Volunteer Melanie Hensley is our volunteer of the week.  Melanie is a member of our Welcoming Committee and volunteers anywhere else we need help with.  We appreciate her so much and are so happy she is a part of our team.  Melanie is the mom to 4 beautiful girls. 

Melanie Hensley is the mother of two CDH babies, both of whom grew their wings.

Read more...

Featured Medical Staff: Dr. Kamlesh S. Macwan, MD, and RN’s Kristin Aigner and Lora Simonson

We would like to thank Dr. Kamlesh S. Macwan, MD, and RN’s Kristin Aigner and Lora Simonson with OSF Saint Francis Medical Center in Peoria, Illinois, for Bringing Hope Around the World to our CDH Families! This wonderful doctor and nurses were brought to our attention by Terry King German, mom to cherub Skylar, “we can NEVER thank these angels on earth enough for saving the life of our sweet miracle, Skylar!!!!”

Dr. Macwan was known to many as the “magician of ventilators and the Yoda of CDH.”  CDH families and various OSF Staff recently said goodbye to Dr. Macwan at the CDH Family Picnic in September and celebrated his retirement. 

Read more...

Featured Cherub: Chris Cavalier

Our featured cherub of the week is Chris Cavalier.  Chris is a 32 year old survivor of CDH.  His CDH story can be found on his family’s website at http://ecmosurvivor.com.  A book about him has also been published and is available through Amazon and in stores at Barnes and Noble, the title is "Alive by Grace: A Mother's Story with a Message of Hope from Christopher.”

Here is an excerpt of Christopher’s story, written by his mom, Suzanne Cavalier:

Read more...