Featured Cherub: Daniel Rosamonda

CDH Journey written by Marcy Rosamonda, cherub Daniel’s mom:

"From day one Daniel had to fight to live but the surgeon thought he had a small hole because he was stable for surgery when he was 4 days old. When they got in there they discovered that not only was half of his diaphragm missing, he had 1/3 of his liver up, as well as all of his bowels and stomach. The surgeon used a goretex patch to repair the hole. He was 12 days old when we finally got to hold him, only because dad had to go back to work and we had traveled from Idaho to Portland, Oregon, to have Daniel. In total, he spent 59 days in the NICU, and while there he got a gtube placed to drain his stomach because he had pyloric stenosis.

Upon getting home, his gtube site started looking bad and his pediatrician tested it and it turned out it was MRSA.  So 10 days after coming home, Daniel was hospitalized in the Children’s hospital in Boise, Idaho, for MRSA. We spent a week there and got to come home again, on oxygen due to the change in elevation.

Then in February, the Portland surgeon placed a JG tube which meant Daniel only had oxygen on his face! After that surgery, he started to vomit and the resident said that was normal because they had just manipulated his stomach. So we only stayed overnight in Portland and got to come home the next day. As time passed, the vomiting just got worse and worse to the point he was vomiting 10-20x a day. The resident at Portland said he talked with the surgeon and that it was normal. Three weeks passed and Daniel was miserable so we got a second opinion from a local surgeon. Turns out Daniel had a hiatal hernia, so we decided to switch care over to Boise and have the repair done close to home.

We met with the surgeon before surgery and she said she might be able to open his pylorus and that she would check on the patch and also check for malrotation while she was inside him. It was a five hour surgery, but she not only fixed the hiatal hernia, but fixed a malrotation and opened his pylorus and put more patch in his diaphragm, as well as doing a nissen.

He was in the PICU for a few days when they did a CT to check on the internal stitches and see why his left lung had never shown on X-ray but you could hear it. The CT showed he was healing good and also that the left lung was collapsed and the right lung had overinflated to compensate. They then scheduled a bronchoscopy for later that week to check how stable his airway was.

The morning of the bronchoscopy his airway collapsed and he ended up needing CPR so when they did the bronchoscopy they moved the ventilator tube down past the part that was collapsing so they had time to come up with a plan. Week and a half after the first surgery he had another surgery to place cervical balloons in his chest, one held up his heart and the other pushed the right lung back where it should go which allowed the left lung to open. He also grew an inch during that surgery because turns out he had scoliosis and the balloons helped straighten his back!

He spent a total of 3 weeks in the PICU and another week on the pediatric floor and got to come home again.

Due to the balloon site needing sterile changes each week he got private duty nursing hours so I got to have some help (my husband is a long haul truck driver)!  Daniel came home on April 20th and on May 18th we finally found a nurse. In June, he spent 3 days in the hospital for parainfluenza, but the rest of that summer he started thriving. He started to tolerate bolus feeds so he was no longer on continuous feeds. He was also eating by mouth so we were able to drop a feed! He no longer needed continuous monitoring by the pulse oximeter, so now he gets that just at night. In October when he was about a year old, he no longer needed oxygen!

He is now 22 months old and has a brace for scoliosis. He has had 6 surgeries (6th surgery was for tonsils and adenoids in July) and will have another one next month because he has reherniated,  so he’s back on continuous feeds.

He loves running everywhere and doesn’t talk yet but he does do baby sign!"

Thank you Marcy Rosamonda for raising CDH Awareness and sharing more about Daniel's journey with CDH. 

News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

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! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...

 
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2017 - News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

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! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...