Meet Jacob our Children’s Miracle Network Kid

Mix 94.1 is gearing up for our Children's Miracle Network Radiothon  June 2nd and June 3rd.  Over the next few weeks we would like to introduce you to some of our CMN Kiddos who are near and dear to our heart.  This week we would like to introduce you to Jacob.

Jacob's Story courtesy of Amanda Shelton

Jacob Ryan Shelton was born June 30, 2009. Jacob was diagnosed with Cystic Fibrosis before he was born, during routine ultrasound followed by amniocentesis. Jacob’s birth was challenging. Because we knew ahead of time that Jacob had cystic fibrosis we had an outstanding team on hand. The team included the Cystic Fibrosis Pulmonologist, the Critical Care Pediatrician, and the Neonatal Intensive Care Unit (NICU) staff.

Jacob weighed 8lbs 11 oz but his abdomen measured a whopping 43cm, about the size of a small soccer ball. Because of this large tummy the respiratory therapist had to intubate Jacob right away because his stomach size made it difficult for him to breathe.

The first 24hours was distressing as he needed to have many tests completed. Not fun at any time, but for a newborn it was particularly distressing. The staff however kept us informed and was especially compassionate.

On day 2 Doctor Nirgiotis informed us that it was necessary for Jacob to have surgery in order to repair his bowel that was ruptured. He spent 2-3 hours in surgery and he was still less than 24 hours old.

After surgery Jacob required numerous antibiotics and continuous intravenous (IV) nutrition. Due to the difficult nature of Jacobs’s birth and because of his fragile state, the nurses initially provided him with 24 hour care and looked after him if he was their own.

They also took care of me because I was physically and emotionally overwhelmed despite the fact that I knew ahead of time, and I am also a registered nurse (RN). Jacobs’s recovery was long and eventful.One week after his birth Jacob’s bowel perforated again and he had to go back to surgery.

During this harrowing time, I held my precious angel in my arms as nurses

started more IV’s and prepared him for surgery. Sadly, Jacob’s bowel could not be reconnected and as a result Jacob had a temporary colostomy and ileostomy fashioned and the treatment lasted 6 weeks.

The outstanding NICU staff continued to take care of Jacob. They continued to let him swing and on a couple of occasions they took him to staff meetings. Jacob became one of them. Not sure how much he contributed to the proceedings but he was always center stage!

After a few weeks I returned to work but felt Blessed and secure in the knowledge that his “new mommies” were taking excellent care of him. The NICU staff were amazing in caring for my little miracle.

After several anxious weeks Jacob had another surgery to repair his bowel. His journey to recovery was just beginning. Jacob had to learn to eat, and eat enough of the right food to sustain him. Jacob’s Cystic Fibrosis had affected his bowel so much that because of the surgeries it was difficult to treat his lungs as aggressively as was needed.

Jacob developed a bacterial infection in his stomach because of the normal bacteria in his bowel and he also developed bad acid reflux which impacted his ability to maintain his nutritional status. Eventually we were allowed to go home but his journey to recovery continued.

Jacob developed a bacterial infection in his lungs which led us back to the hospital. This visit we stayed in the pediatric department and again the excellent staff made sure Jacob had toys and human interaction which met his developmental needs. Once again Jacob was the man of the hour and the nurses and all the pediatric staff loved him.

Jacob was hospital free from October 2009-February 2010.  In February Jacob had a two day stay for dehydration due to a stomach bug.  Jacob does not regulate his electrolytes like normal so he dehydrated too quickly.  Since this stay Dr Scott and I were much more in tune to Jacob’s electrolytes.

Jacob our miracle baby will be 2 in June! He is developing on target and is attending day care.  This is something were told would cause health concerns for Jacob, but he is thriving. Since February 2010 Jacob has been hospital free! Dr Scott was amazing in allowing me to care for my son instead of submitting all of us to hospital stays.  We now live in Midland TX and travel to Ft Worth to Cook’s Children’s hospital every 2 months for CF care. The CF Clinic has been amazing and a great attribute to Jacob’s health. Jacob is a normal boy he loves to swim, loves his animals and boy can he run! He is constantly on the move! He now puts his mask and vest on himself for treatments.  He takes his enzymes as if they were candy.  To watch this is truly amazing!

Jacob is one of the many children that has been helped by Children's Miracle Network Hospitals.  Join us on June 2nd and 3rd as we help raise money for this wonderful organization.  100% of the money we raise will stay here in Amarillo to help the children of the Texas Panhandle.  Open your hearts and get ready to meet some wonderful families as they tell their stories of how Children's Miracle Network has helped their children.

You can make your secure donation to CMN here.