One day at a Time...

When Jayden was in the NICU at children's we met with a few genetic specialists. It is normal to run genetic testing on any baby born with a birth defect so they took our family history. No one on either side of our family has any history of any kind of genetic disorder so we were told it was very unlikely that they would discover any chromosomal problems. So we went on about our new lives worrying about Jayden's feeding a breathing and basically surviving! But in April I received a call from one of Jayden's geneticists. They found something... They called me as soon as something showed up but wasn't able to give my any info because they still had to run more tests. They discovered Jayden has a large portion of his 4th chromosome missing. This was so unexpected that we were in shock. Needless to say I was terrified and my mind was racing. How could this of happened? And why? Did I do something to cause this? What will Jayden's future be like? and what about our future children? So many questions and many are still unanswered. 

Michael and I raced to Children's to have our DNA tested for this same deletion. It took what felt like forever for the results to come back but turns out it didn't come from either of us. So the geneticist squeezed us in as soon as possible because they were very concerned. Jayden's deletion consists of 25 missing genes which is very large. Just to give you an idea there are kids who are missing one gene and suffer from severe seizures . There isn't anyone else that has the same deletion as Jayden but they were able to find a boy in Spain that shares roughly 75% of the same deletion as Jayden. After meeting with the team we felt a little better. They were so pleased with Jayden and how he is doing! So far we know his cleft palate and PRS( small chin, small tongue and an underdeveloped uvula) are a result of the deletion. Jayden also is very little ( 0 percentile for weight, 5th percentile for height an 25 percentile for head circ), has delayed head control, underdeveloped back muscles and has low muscle tone. We wont know if those things are a result of his deletion until he is older. Jayden isn't anywhere close to sitting up on his own, doesn't push up on his arms during tummy time and some of his reflexes aren't where they should be. BUT enough of the negative! Jayden went from struggling to eat every bottle and choking to being able to hold his own bottle and eat with no problems! Jayden rolled over from his belly to back at 3 months and is so close to rolling from back to belly. He has great head control and loves to sit and stand with the help of mommy or daddy. He has a constant eye on mommy all day long and just loves to play with his kitties and toys. He smiles so big and laughs all the time and he also got his first 2 teeth! He puts a smile on the face of everyone who meets him! A speech and physical therapist come to our house once a month to help keep Jayden on the right track and will continue to do so. We are hoping with therapy Jayden will live a normal life!

We are unsure of Jayden's future at this point. He will probably be behind other kids his own age and have to work harder for everything. And that's OK! But then again he may surprise everyone! But the important thing is Jayden is here and healthy and happy! He had a rough start but he is our little miracle baby!