by her mom, Kati
This is Paiton’s story told by me, her mom, Kati! Paiton Reese came into the world on August 05, 2004 weighing 12.6 ounces and 7 inches long, along with her late twin sister Paris Isabella who weighed 10.8 ounces and 6 inches long. They were taken at 25 weeks for reasons still unknown that I still struggle with everyday. Paiton spent 7 long months in the NICU having PPH episodes that kept being misdiagnosed as Chronic Lung Disease. She finally got to come home and be with us on March 02, 2005. She came home on oxygen and something kept telling me and her dad that other things were going on. We had no cardiology follow ups so we thought her heart was fine, her lungs were the only sick and she would overcome.
One night Paiton was put in her crib for the night and out of no where on the baby monitor we heard the most horrible sound ever. It was my miracle gasping to breath. She was so limp and blue when we picked her up, I thought we had lost her. Dad gave rescue breaths and the ambulance arrived but Paiton was normal again. The same thing occurred the next day. We went to the ER and she was sent home with an increase in Lasix and Oxygen requirements. The next day we were back in the ER and admitted into the PICU. We were not allowed to go back and the doctor came out and explained to us that Paiton was once again on the ventilator and she was a minute to minute situation. An echo was performed and we were told that her diagnosis was Pulmonary Hypertension and we did not have many options.
We chose to have a second opinion so we went to a larger hospital. They were performing a sleep study and Paiton had a spell. She was normal again when the entire hospital arrived in her room because of a code blue. It was very scary but we thought she would be okay. Little did we know that was the last time we were to hold or see our little girl awake for 12 weeks. 12 weeks she lay in the bed on the ventilator without being held and loved the way every baby deserves. Another echo was performed and Paiton had congenital heart defects that had been left untreated which lead to her PPH diagnoses. Every drug available was thrown at her- Flolan, Bosentan, Viagra and Nitric Oxide- all started in a 24 hour period. I was overwhelmed to say the least! I had no idea what to do, where to go, what was up, what was down. We were told to call our family because once again Paiton was not expected to make through the night. Our families made the 3 hour drive at one o’clock in the morning thinking we were saying good-bye. It was horrible, we had already lost one baby, an identical twin 7 weeks into her life and now we thought we were going to loose all we had left because of a misdiagnosed disease that could be controlled with medicine, if caught in the early stages.
Frustration, anger, resentment, you name it I was experiencing it. She fought and she made it through the night. The treatment options were so vague that time. I did not know any different but 9 weeks in the PICU at the same hospital where no progress had been made we requested a meeting with everyone involved in her care. At the meeting we were told that there was nothing else they could do and they were waiting on nature to take its course. I went crazy and we were transferred to an even larger hospital with actual PPH experience the next day. If Paiton were to die I was to do everything and anything in my power to give her a chance. When we arrived at the new hospital the medicine regiment was changed and Paiton was on Flolan and Viagra only to treat her PH. 3 weeks later my baby was in my arms again and things were looking better. No I don’t like the Flolan routine but if I had just one more day with her I would do it.
Over the course of the next year we had no serious complications due to the PH just the central line. She pulled it out, it got infected, it was placed incorrectly, and infected once again. We had 4 lines in 3 months!! We had a heart cath in July 2006 and the pressures where still high so we felt we were starting over. Although Paiton showed no symptoms the cath indicated she had a severe case of PH and they chose to not close her ASD at the time.
Today, February 21, 2007, we are on the same dose of Flolan, had the same line for 7 months, and have another cath in March at a recognized PH hospital. We are hoping for the best and that her ASD can be repaired so we may really be able to “out grow” the PH. She has learned to walk with her backpack, scream when she sees the dressing change kit come out, and function like a 2 year old. She is an amazing little girl that has been fighting since day one. She melts everyone’s heart that she meets just with her smile and vivid personality!!