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:
We were beyond excited to find out that we'd be having our second daughter. At our 20 week ultrasound our doctor told us that she wanted us to see a specialist in Ft. Collins because it looked like the diaphragm hadn't completely formed, but that they could see most of it. I wasn't really worried and didn't think much of it; my husband had reassured me that everything was fine. I wasn't too worried and didn't do any research. Only on the drive to the specialist did I start to worry. I can't describe it; I just had a bad feeling. When we went to do the ultrasound with the specialist, they quickly confirmed with us that our daughter's diaphragm hadn't fully formed and further explained that she had a congenital diaphragmatic hernia. I was shocked and in disbelief. They then referred us to Children's Hospital Colorado in Aurora. The next week we went to Aurora and had an MRI, fetal echo, amnio and meetings and more explanations from the doctors.
The rest of my pregnancy was filled with worry and unknown. At 34 weeks we repeated the MRI and fetal echo along with a birth plan for our daughter. We were to come and stay at the Ronald McDonald House near the hospital at 35 weeks because I had my first daughter at 36 weeks and because we lived three hours away. I was induced at 38 weeks. My labor was fairly uneventful. When she was ready to come, the room filled with nurses, doctors, and respiratory therapists.
Phoebe was born at 8:13 am on June 10. She came out blue and let out a soft squeal, they quickly rushed her away to intubate her. Then she was taken to the NICU which was located in the same hospital on the same floor.
The first few days were filled with trying to stabilize Phoebe. She was put on an oscillating breathing machine, had a blood transfusion, along with lots of medications, x-rays, tubes, and lines to help her. Looking back, this time was the most scary for us. There were so many ups and downs and worry for Phoebe. After a few days she seemed to somewhat stabilize and we could talk about setting up surgery for her repair.
At ten days old her repair surgery was performed and they were able to repair her diaphragm with muscle flap. She responded well to the surgery and stabilized in a couple days. Two days after surgery, with the help of lots of people, I got to hold Phoebe for the first time. A week later she was extubated, but having a hard time withdrawing from morphine. She was given small doses, until she was able to fully wean from it. As she stabilized and got better, we tried to feed her by mouth. For weeks she tried hard to eat, but her reflux and having been intubated made it very difficult.
At two months old she had surgery to have a g-tube and nissen. Five days after that we got to leave the NICU.
At home we worked on trying to eat and going to therapies. Quickly after coming home, she was able to get off oxygen. She was a great baby and slept through the night her first night home.
Finally, at age two she started to eat a substantial amount of food we could start weaning from tube feeding. Also, at age two she was diagnosed with severe scoliosis. Phoebe had to get a back brace and wear it 18 hours daily. Her brace is worn in hopes to make her curves not get any worse. She will most likely have to have surgery during adolescence.
At age three Phoebe suddenly became very sick and was throwing up a lot. Thinking she had a bowel obstruction, I took her to the ER. Our local ER couldn't figure out what was wrong with her, but knew she was very sick. They referred us to our closest children's hospital, which was two hours away. There they determined she had pancreatitis along with severe constipation.
Phoebe has developmental delays, speech delays, and sensory processing disorder. At age three she was diagnosed on the Autism spectrum.
Last year was a really rough year for Phoebe. She had strep throat, ear infections, pneumonia twice, and was hospitalized for RSV.
Phoebe still has a g-tube for supplemental weight gain, but eats food by mouth today. She goes to speech, occupational, and physical therapy twice a week. She is five years old and in kindergarten.
Despite Phoebe's challenges she's still a happy little girl who is pure joy to be around. We are forever grateful for Cherubs and their support and glad to have met some of the members over the years. We are so grateful and happy to have Phoebe in our lives. We call her Phoebe the Fighter because of her strength. CDH will be a part of our lives forever. Prayers and blessings to all the CDH children and their families.