Dex's Birth Story
Mike and I decided a couple years after we were married that we were ready to start a family. We were so excited at the prospect of getting pregnant and having a sweet little baby. We soon found out that it would be very hard for us to conceive. After over a year of trying, we decided to see a fertility specialist and received a great recommendation from friends. It turned out the issue that was causing my infertility was something that could be fixed surgically. After two heartbreaking miscarriages and by only the grace of God, we were able to become pregnant again and this time he would make it to term....
At around 13 weeks, our doctors noticed some abnormalities with the growth of our new baby, but they weren't too concerned yet because he was growing well. Because of my age the time (32) lot's a risk factors came into play and talk of Down Syndrome was beginning. That was eventually ruled out however, my amniotic fluid amount was well above average at around 17 weeks. Each week, my belly would grow over 2x faster than average and by 24 weeks, I was measuring full term ( and still growing ) and started having contractions...
I was in an out of the hospital a few times to stop early labor and put on bed rest - during this time we still had no concrete diagnosis for our sweet little babe. Our doctor was able to keep Dex in until 37 weeks! We would soon find out how much of a blessing and a miracle that was. On December 9, 2012 - we would meet our first born...
When our sweet Declan ( or Dex as we call him) was born, we were absolutely over-joyed, but also concerned about the unknown. He was immediately intubated, on minimal oxygen, but still could not breathe on his own. His swallow was weak and he could not eat by mouth. His chest looked odd, his little tummy muscles were weak and we still didn't know what he sounded like. We didn't even know if he had Mike's dimples yet! After a couple of weeks of wondering, crying, lots of tests, more crying, waiting and waiting and waiting - we finally had a diagnosis: Uniparental Disomy 14/Paternal or Wang Syndrome...
UPD14 causes things such as -
* pre-mature birth* ( We experiencd pre-term labor at 24 weeks, 27 weeks, 30 weeks and 32 weeks - we were able to hold on until 37 weeks - he was already 8lbs by then- very rare in an already rare condition )
*Respiratory issues*
- Swallow issues which can cause silent aspiration ( We experienced this with dex )
* Hypotonia * ( Low Muscle tone - He still has this )
*Large Hernias* ( Dex had a very large hernia and has had a couple of surgeries to correct- it also proves to be an ongoing issue )
*Small / narrow rib cage *
Physical and developmental delays
And a handful of other issues...After a month's stay in the NICU, little babe went home with us - Along with a feeding tube, a suction machine and two new parents who had no idea what they were doing, ha!
The good news? At 8 years old, Dex is absolutely thriving ( not without challenges ) and has proven so many expectations wrong. We are incredibly proud of this kid and his drive. He works hard every single day and does it with a huge smile on his face. By the grace of God we can confidently say he'll have many, many more years to smile, laugh and make us the happiest parents in the world!