August 23, 2012. A joyous, yet terrifying day. Daddy P and I were so excited to welcome our sweet baby boy, and Little C couldn’t be more excited to meet her baby brother. Little did we know what a special baby he would be, and how he would change our lives forever (as I suppose all babies do!)
By the grace of God, G was sent to the NICU for respiratory distress, not totally uncommon for babies born 3 weeks early. Had that never happened, who knows when we would have found out the real story: G was born with Agenesis of the Corpus Collosum, an important structure of the brain that transmits messages between the right and left hemispheres. From that, we did genetic testing to discover he is missing 126 genes from his third chromosome.
The nitty gritty: We were blessed with an easy delivery, although G was immediately taken to NICU to monitor his breathing – told this is somewhat common for baby boys born 3 weeks early, and he will be there a few days and come right home…
He was born at 11:30 am. My parents were at the hospital shortly thereafter, Little C came to meet her brother, and yet, despite trying to smile, laugh, and be optimistic, we had no baby to hold. No brother to meet. Daddy P mentioned to the neonatologist we had a follow up scheduled the next day with a high risk doctor regarding some abnormalities from the ultrasound – all along we had been told what they were seeing is really nothing and there was no need to worry about a thing. With that bit of information, the doctor performed an ultrasound of G’s brain and our world changed.
After being at his bedside all night, praying his struggling lungs would catch on, we got the call at 8:30 a.m. on Friday. All I heard was that he was missing a part of his brain and being taken immediately by ambulance to a higher level NICU. Thankfully I was able to be released from the hospital to go with him.
The next few weeks were a blur – I know it was 48 hours, after begging, crying, pleading, that an angel named Carol let me finally hold that sweet baby. Leaving the hospital every night without a baby, trying to be positive around Little C, and leaving every night to be back at the NICU with G – the great balancing act. Exhausting. Pumping every 2 hours, trying to be the mother he needed, all the while being discouraged by doctors, therapists, lactation consultants, and nurses all along the way. He couldn’t take a bottle, there was no suck, swallow, breathe reflex.
There was so much “maybe it’s this, maybe it’s that”. Finally, the neurologist confirmed Agenesis of the Corpus Collosum. He can’t tell us exactly what it will mean for G, but his brain can’t process messages between the right and left sides of his brain; he could be anything from totally normal to moderately retarded. We moved on with that info and prepared for what that would mean.
Then, they performed genetic testing, just to be sure there is nothing else. That was the big one: Deletion on the 3rd chromosome. Again, no one can tell us what that will mean. Most of those kids are missing a few genes, G is missing 126. It is a de novo mutation, a random occurrence. There are only 28 other documented cases of a deletion in a similar segment of the chromosome (3q), but of those, most are missing a few genes.
Now that we had our “answers”, we just wanted to bring that baby boy home! There were so many hurdles, and nothing but roadblocks to get him out – different doctors every day with a different opinion. Ten days in, and he could still only take a few sips by bottle before wearing himself out. The doctors wanted to send him home with a g-tube, so we could feed him by tube at home.Finally, I convinced a doctor to let me try breastfeeding him 8 times a day, like he was born to do..just see if he can do it…and yes, he did!! They let us “room-in” at the hospital, and after 24 hours, G still gained weight. We still had to convince his team that we wouldn’t let him whither away, we would follow up diligently, but he needed to get home to his big sister. And thank the Lord, on day 17, they let us go!! Alleluia!!
The challenges won’t end. The little guy works SO hard and amazes us every day. The little things we take for granted, are such huge achievements for G. Thankfully he gives us lots of smiles these days, which make it all worth it! This blog is intended to keep our friends and family up to date with his latest news, so stay tuned for the miracles to come!