Braeton (aka Bug) – Born 12 December 2008
To tell the story of Braeton, my
Pierre-Robin rock star, I have to back up a little bit and share about
the miracles I had and lost that brought him here. You see, he is an
only child, but has 3 siblings in Heaven.
2 were miscarriages & the guardian angel brother we lost the same year he was born, Alex was born at 24wks. He weighed 1lb 10oz and blessed us with almost 4mths in the NICU. Alex gave me dreams of Braeton as well as his unique name (pronounced Bray-ton) He was a surprise and not planned as I found out I was expecting just 5mths after Alex passed.
I was finally considered “high-risk” and monitored closely throughout my pregnancy. I went in for the anatomy scan & after 2hrs on the table I knew something was wrong. The Dr. had a very cold bedside manor & jumped right to my “options to terminate” His guess was the “foetus” would be born with Down syndrome. He was not my regular Dr. I left crying, but knowing I WAS going to have this baby no matter what.
Braeton was always facing inward, so they never got a clear shot at face/jaw, etc. I was doing the progesterone injections & weekly scans as they knew the possibility of me going into pre-term labor again were very high. At 34wks, I went in for a scan & it showed I had been leaking amniotic fluids & the foetal movement was low. I was rushed to L&D where Braeton was born weighing 4lbs 5oz. I got to hear him cry & hold him for a few seconds before he was rushed away due to going into respiratory distress. He was flown to Children’s Hospital where we were all too familiar with. I would not hear the diagnoses till I arrived later as I went into cardiac problems & was in ICU. I was reunited with him after about 1wk. By then, all we knew was he had trouble getting air thru his airway & Dr’s positioned him just so.
Finally, we opted for jaw distraction at 3wks. He received his firs tracheotomy during that time as they explained his oesophagus/airway is not a straight shot-it is more like a drain pipe & s shaped making intubation thru mouth almost impossible & life threatening. We also got a diagnoses of Co-arctation of the aorta, and he was scheduled for his first heart surgery after the jaw distraction pins were removed 11 days later. We also got our first decannulation from the trach & all seemed well. But it was not. He started having trouble eating by mouth, his heart was working too hard & they said he was not getting enough nutrition by mouth -they called it failure to thrive and we were put on npo orders as his Cardio Dr. did not want him stressing his newly repaired heart.
He came home 4mths & dozens of surgeries later & ng tube fed, till we quickly headed back up to hospital for a g-tube placement. He was going in for a cleft palate repair 3yrs ago & at the beginning of surgery ran into problems & sats dropped. The surgeon pulled out & called off surgery as he said “something just told him to stop -it was too risky” and never in his career did he stop a surgery.
We were scheduled for a sleep study -thankfully! I just thought it was his heart as we also got news he needed a 2nd co arc repair. The sleep study showed he obstructed 96 times in 4hrs his SATs were in the 70 & 80s and we were sent to ICU and told he needed a 2nd trach immediately. We were terrified, but one look at him & we knew that was our only option.
As soon as we were reunited, I had my Bug back in my arms & nothing else mattered. We were going to tackle whatever came our way together. He has mild hearing loss, glacoma & lentaconis of the eyes (4 surgeries) severe reflux, sensory issues, developmental delay, autism spectrum (high functioning) and kidney issues. We are doing genetics (again) in a few weeks to see if there is anything else related to the cleft palate.
He just had a sleep study & again
showed obstruction and central apnea (where his brain forgets to send
signals to breathe). We probably will be on the trach for a few more
years, but that is ok-all in time. At 4 1/2 years old this kid is my
strength, motivation, rock & teacher. He is always happy & has a
silly, playful attitude.
He is non-verbal, but I understand everything-he has such a love for life. He loves music, books, outdoors & horse riding therapy. He was student of the month at school just before summer break and I know he is going to be my little scholar! I am a single Mom & thankful for 2 home Rns that help during the week so I can work part-time & then 3 nights a week. I am so blessed I found this group as I felt so alone…I never heard of PRS till it blessed me and not many around me have either. So those who “get it” are such a God send.