Kenasyn Rayne Recap

 Kenasyn Rayne Bird

So I have many new followers, especially on InstaGram.  I just wanted to give a quick overview of Kenasyn's story in her short little life.  (If you'd like the more detailed story, my first post on her is Febuary 2012)

When I was 25 weeks old, we had a "sex check" ultrasound to check if she was a boy or a girl. (Her 20 week u/s was inconclusive)

That was the day our life started to unravel!! We found out that day that our precious baby (still couldn't confirm what the sex was) had club foot and some spinal issues. And it all went down hill from there! We had ultrasound after ultrasound and with each one, there were more and more concern as to what exactly was going on. There was confirmation that her left tib/fib was short and that her left foot was deformed. But with all the u/s we had, nothing could prepare us for her Birthday! Kenasyn and I had a 2-vessel umbilical cord. So we went in knowing it was a high-risk delivery. And as soon as she was born, the nicu nurses (who were already in our room) wouldn't tell any of us (my hubby, sister and I) what was going on. They were all crowded around the warmer and talking softly. Soon, I demanded to see her since she wasn't leaving the room, and they informed us that there was something severely wrong with her lady region and that it appeared that she didn't have an anus. I was soon wheeled into surgery (since she was baby #5, we knew she was our last, and so I had my tubes tied). By the time I was out, they were preparing to life flight her to Salt Lake City's primary children's hospital. Our pediatrician came and discovered that she did have an anus (so luckily no flight to Utah), it was just right next to her vagina, basically she emptied her bowels into her vagina.  By the time she was 5 days old, she had already met 3 specialists and surgery was scheduled. By 2 weeks old we'd seen a total of 7 specialists and had a plethora of diagnoses.

She has :
Caudal Regression Syndrome/Sacral Agenisis (which is thought to have caused all of her other conditions and is 1 in 70 million)
Tibial Hemimelia (1 in 5 million)
Fibular Hemimelia (1 in 1 million)
Progressive infantile scoliosis
Club foot
Coxa Vera
Developmental Hip Dysplasia
Fused ribs
Fused vertebrae
Rotated (low functioning) right kidney (which has caused numerous UTI's and kidney infections)
Analrectal malformation with a vaginal fistula.

At 24 days old, she had her 1st surgery (a colostomy).  It seemed like the 1st year of her life, my life revolved around surgeries, hospitals, and doctor appointments. All of her specialists (at the time) were a 4 hour drive away. Not to mention I have a popular husband (in the special affects world and reality TV world) and 4 other children!

Her surgeries include:
A colostomy (24 days old)
A colostomy revision (25 days old)
An analrectaplasty (to fix her bum and lady parts) (3 months old)
A colostomy reversal (6 months old)
A tenotomy (to lengthen her Achilles' tendon) (8 months old)
Inguinal hernia repair (9 months old)
Open hip reduction (place her hip, followed by 2 months in a spica cast) (10 months old)
Amputation at her left knee (9 days after her 1st birthday)
Amputation infection clean out (13 months old)
Umbilical hernia repair (14 months old)

It's been a nice break for the last 6 months with no surgeries!  We call Kenasyn our warrior baby! She has been fighting to stay healthy from day one. She has the luck to catch everything that comes around! She's really tiny for her age. (20 months, 17 pounds. She did weigh more, but has since gotten sick and lost weight.)
She is incredible! She is so happy! She really hardly ever cries! She is our joy!

(Kenasyn's 2nd Socket 1-15-14)