About Me

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!)

2012-08-27 16.02.52

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.2012-08-29 20.06.53

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.2012-09-09 17.19.11 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!

13 Replies to “About Me”

  1. Wow. Thanks for writing this C and P. Y’all are amazing. Sending lots of love to all of you but especially to G.

  2. So glad to see how much progress Graham is making. To see how little he was and to see him now is so wonderful!

  3. So great to read about and see his progress! Keeping y’all and little G in our prayers…looking forward to hearing about the many miracles ahead. Thank you for sharing a little bit of his story with us 🙂

  4. P and C, we are pleased to hear the updates, and eating his first Banana yea, so glad he rolled over that must have been exciting and new to him. He is in our prayers and the miracles will come, just think how far he has come in these 6 months. We love you and you all are in our prayers daily.

  5. P & C – I admire your faith, courage and strength. Little Graham seems like an amazingly strong little guy and I can’t wait to meet him. My prayers are with all of you daily!! Thank you for sharing your story and keeping us updated on Graham’s progress. I love y’all!

  6. Our prayers will always be with you all and little Graham Simon.
    Love Peyton & Maggie
    God bless y’all!!!!

  7. Would love to chat sometime. Our little girl was just born (11-13) with agenesis of the corpus callosum and also a deletion and duplication on her chromosome 3. She is our second daughter. Our first daughter is healthy/no issues. I’m 38. My husband and I had our chromosomes analyzed, totally normal. So, I often wonder if it was just my age. 🙁 It would be interesting to compare notes. Email me and I’ll email you back my number if you wouldn’t mind talking. 🙂 Susan

  8. C, your blog is awesome. How lucky G is to have such a great set of parents and family! Will definitely add you all to the prayer list. Thanks so much for sharing this message! God Bless!
    -Mandy

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