“Today we celebrate 22 amazing months with our little princess and pray for many more.”
Kylie Howe, Trisomy 13, 1/17/2012, Waller TX
Please consider following Kylies journey on her Facebook page: Team Kylie T13 Princess.
At 18 weeks pregnant, we found out our 2nd child was a girl!! We were very excited. (our son, Riley, was 5, now 7) A few days after our ultrasound, the Dr. called me with concerns about her heart and sent me to a specialist. At this visit, we learned that Kylie’s heart looked ok, however, the specialist saw some concerns of her own. A cleft lip and palate were visible along with 4 other “bright”spots on the U/S. An amnio was administered confirming a “problem”. Kylie had Trisomy 13. We were truly crushed, confused, mad and just plain terrified. We were strongly urged to abort. I knew in my heart, I would never be ok with that option, so we continued, one day at a time.
Kylie was born at 39 weeks and 1 day! She weighed 6lbs 15oz and was 21 inches long! We couldnt believe it!! We soaked in every second we could, not know what the next second would bring. I am pretty sure Kylie met her entire family that day.
Kylie was discharged at 1 week old and sent home on hospice, but, We were heading home!!
We spent a wonderful week at home with both our babies, then our life kind of stopped for a second. Kylie had quit breathing and was turning blue.her dad grabbed the oxygen (supplied by hospice) as I called 911. Kylie was taken to Texas Children’s Hospital and was determined that she had aspiration pneumonia. This earned Kylie a 10 day stay in the Nicu. During this stay, we met with the genetics team and blood work was done on Kylie, confirming the prenatal diagnosis of Trisomy 13. After a 10 day round of antibiotics, we were once again heading home!
Kylie had 4 cases of aspiration pneumonia in her first 6 months. Each one earning yet another trip to Texas Children’s. Her worse case was in June 2012. Kylie had to be intubated. This was always our worst fear. She was really sick. Kylie stayed on the machines for 3 weeks. At this point, it was time for a family meeting with the doctors. We had a choice to make and we knew it would not be easy.
The day was there, June 27th. The day that would change ALL our lives, even the hospital staff.
We took Kylie off the vent and prayed. After 6 hours of holdings and praying, Kylie opened her eyes! She was still with us!! We spent the night in the PICU and the next day, we were sent to a floor room where we lived for the next 3 weeks. At that time, we were homeward bound!
Kylie was hospitalized a few more times, but none as severe as the last. We celebrated all holidays at home with BOTH kids!! The most important celebration? Kylie’s 1st Birthday!!!
2013 brought more changes, more learning and more celebrating!
In March, after 15 months, Kylie was discharged from hospice. In April, Kylie had surgery to repair her cleft lip, and in August, her palate. Kylie has Pt once a week, OT three times a week and speech twice a week. Kylie is now able to eat baby food by mouth, and pending a follow up swallow function study, maybe even liquid by mouth!
Today we celebrate 22 amazing months with our little princess and pray for many more.