Maxley Russell Ferguson was born June 12th, 2018 at 11:56am. He was 2lbs 4oz and 14.25 inches long. He has a chromosomal abnormality called 12q14. It means he is missing a tiny piece on his 12th chromosome. It typically affects growth and development. (Find out more) He was born over 6 weeks early at 33 weeks and 5 days gestation.
He is named after his dad’s paternal grandfather. Maxley Ferguson was Scott’s grandfathers name. Scott and I decided about 6 years ago that boy or girl, our first born was going to be Maxley. We kept the secret the entire time and I just wish Scott could have been there to tell his dad the day he was born.
Russell was Scott’s middle name and I know he will be proud to have it.
He is a pretty fussy baby with an easy smile. He loves to be held and cuddled. He loves when anyone sings to him and he hates sleep. He has a sensory disorder which just adds to his complicated self.
He is 100% tube fed via a gjtube he has implanted into his tummy. He can eat orally but doesn’t like to. Lack of interest in food can be correlated with his genetic abnormality.
So far, I think he looks like me. He has my blond hair, my cleft chin and my expressive face. I think he will have his daddy’s green eyes. Maybe he will act like his daddy too.
We spent 99 days in the NICU/ICC right after he was born. We went home in September, 3 days after his daddy’s birthday. We spent 4 months at home cuddling, laughing, crying and not sleeping before coming back to the hospital for his open heart surgery on January 28th.
The surgery was a success but his lungs started failing after surgery. He has pulmonary hypertension and interstitial lung disease, both pretty severe. We are still in the hospital waiting for the day I can take him home again.
