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

Featured Volunteer: Josh Hensley

Josh Hensley is the father of two CDH babies, both of whom grew their wings.  It is hard to put into words how important this person is to the charity. Back in October 2010, this individual sent CHERUBS an email interested in being a volunteer with CHERUBS. Having lost two children to CDH, this member wrote in this email that he felt immense responsibility to “wage war” on CDH. His wife and he wanted to set up a CDH awareness tree at the festival of trees for Primary Children’s Hospital that year and wanted CHERUBS to be a part of it. From there, the rest is history. Josh Hensley is currently the Research Director at CDHi and has held many volunteer positions at CHERUBS since late 2010. He has traveled the world raising awareness and continues to wage war against CDH and we know he will not quit until that war is won. He has been a voice of reason throughout the years, for we don’t get much Dad point of views on our volunteer team. He is a one of kind man, has a big heart and is out there in the trenches fighting to put an end to CDH. Josh and his wife Melanie are the proud parents of 4 girls. Today, we thank Josh for all he does for CDH International and CHERUBS, his passion in wanting to wage war on CDH and his desire to help all families that are affected by CDH.

Read more...

Featured Cherub: Phoebe Kleensang

Featured cherub of the week is 5 year old Phoebe Kleensang.  Phoebe is the daughter of Megan and Aaron Kleensang.  Cherub Phoebe is a fighter and such an inspiration to many!

This is Phoebe’s story, written by her mom Megan:

Read more...

New Product in Online Store: CDHi’s “Merry Christmas Around the World” Ornament

Spread CDH Awareness with holiday cheer with one of our official CDHi Christmas ornaments! These ceramic ornaments attach securely to the tree to ensure that they’re both cat and child-proof.

.: One-sided printing
.: Golden string included for hanging
.: White ceramic

 

 
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2017 - News from CHERUBS

Featured Volunteer: Josh Hensley

Josh Hensley is the father of two CDH babies, both of whom grew their wings.  It is hard to put into words how important this person is to the charity. Back in October 2010, this individual sent CHERUBS an email interested in being a volunteer with CHERUBS. Having lost two children to CDH, this member wrote in this email that he felt immense responsibility to “wage war” on CDH. His wife and he wanted to set up a CDH awareness tree at the festival of trees for Primary Children’s Hospital that year and wanted CHERUBS to be a part of it. From there, the rest is history. Josh Hensley is currently the Research Director at CDHi and has held many volunteer positions at CHERUBS since late 2010. He has traveled the world raising awareness and continues to wage war against CDH and we know he will not quit until that war is won. He has been a voice of reason throughout the years, for we don’t get much Dad point of views on our volunteer team. He is a one of kind man, has a big heart and is out there in the trenches fighting to put an end to CDH. Josh and his wife Melanie are the proud parents of 4 girls. Today, we thank Josh for all he does for CDH International and CHERUBS, his passion in wanting to wage war on CDH and his desire to help all families that are affected by CDH.

Read more...

Featured Cherub: Phoebe Kleensang

Featured cherub of the week is 5 year old Phoebe Kleensang.  Phoebe is the daughter of Megan and Aaron Kleensang.  Cherub Phoebe is a fighter and such an inspiration to many!

This is Phoebe’s story, written by her mom Megan:

Read more...

New Product in Online Store: CDHi’s “Merry Christmas Around the World” Ornament

Spread CDH Awareness with holiday cheer with one of our official CDHi Christmas ornaments! These ceramic ornaments attach securely to the tree to ensure that they’re both cat and child-proof.

.: One-sided printing
.: Golden string included for hanging
.: White ceramic