Back to Stories
Gavin's Story
"My daughter gave birth to Gavin when she was 15..."
At 4 months pregnant, ecogenic bowel on the baby showed up. The doctor sent my daughter Baylea to a specialist a couple hours from where we live. Baylea saw this specialist every 2 weeks through out the remainder of her pregnancy. Early on, when the ecogenic bowel showed up on ultra sound, doctors told us that it could be one of 4 things or it could be nothing. She was tested for cmv but it came up negative so we chose not to do amnio. I researched cmv and was horrified that they had suspected it could have been that. I was like, "God, please do not let it be cmv!" I remember slamming my computer shut...crying my eyes out.
We kind of put it in the back of our mind when she tested negative. The baby never really gained weight. They kept moving her due date because Gav was so small in utero. On September 21, 2006, at 39 weeks gestation, he was born weighing 3.9 lbs, with petichia, and low 02 levels. He was so tiny. Our hometown hospital called in an ambulance to take him to a Childrens Hospital in OKC (2 hours away). We still had no clue it was cmv. Bay had to stay and recover in Duncan for a couple of days and she sent me and my husband to OKC to be with Gav. Gavin's dad, Chase, and his parents stayed with Gav too, while in NICU. Gav's dad has stayed involved and never fails to see Gav every other weekend. (Gav is crazy about his daddy.) Bay would join us a couple days later at OU. When we got to OU Childrens Hospital, they were hooking him up to all kinds of machines, still not knowing what it could be. After he was about 24 hours old, I was having a conversation with his nurse and I reminded her that when he was 4 months gestation they thought it could be cmv but ruled it out. All of the sudden things started to happen. He was immediately tested and was positive with low platelets, enlarged liver, calcifications in the brain, etc etc etc. We were immediately PUSHED into giving him ganciclovir (a drug that was supposed to stop the virus from attacking the brain and possibly save Gavin's hearing). That was a horrifying decision since the only thing it would be proven to do was save his hearing, but side effects were cancer, sterility, and death. How do you decide to give a child something with such horrible side effects??? Then what if we did not give it??? Would his brain continued to be damaged further?? We had to. It was the only choice.
He was sent home after 2-3 weeks in NICU, still on the ganciclovir. We had home health care, but my husband and I were mainly responsible for giving the ganciclovir thru a picc line (and blood thinner). That was a nightmare. His nursery looked like a sterile hospital room. There was a NO Visitor sign on our front door of our home for months. His immune system could not handle sickness of any kind. Nurses in and out. Gloves and gowns and masks strewn about the house. Therapists in and out of our home.
He barely gained any weight his first year, failed vision and hearing, and had constant feeding issues. Doctors told us not to expect much from his life. SSI sent us to a psychologist to do an intelligence test on him at 11 months old while trying to get him on SSI. My husband, Gavin and I drove 3 and a half hours for this test that we really thought was ridiculous. It was obvious from his medical records and all of his Doctor reports that he was disabled, but they sent him for this test anyway. The psychologist cried as she gave him the test. He never once passed the simplest of tests that day. He wasn't walking, crawling, barely holding his head up, diagnosed with Cerebral Palsy, couldn't really grasp anything. Our family kept praying and worrying and taking him to a million specialists and working with him everyday, every hour. We were so scared that first year that a lot of joy was taken away and replaced with WORRY and FRET and sadness. But one day we decided, as a family, to stop worrying so much, and try to just enjoy each day. Stop worrying about tomorrow and focus on one day at a time. As a family, we were suffering. Our lives had forever changed.
I am not sure what happened (other than God's hands touching our child). No medical explanation but at 13 months Gavin started doing amazing things (still not age appropriate), but a MIRACLE. Soon he was crawling, then walking, and then out of no where at his eye appointment (mind you he was diagnosed Cortically blind), he PASSED his vision test! The doctor who was his pediatric opthmalogist took our hands and prayed with us and we gave thanks to Jesus that day. It was so precious.
At 4 and 1/2, he is living with his mommy and attending a special needs school where he gets all of his therapies, even pet therapy and the teachers are shocked at how he knows all of his letters, numbers, all of his colors and can play any game on a computer. (He loves facebook games, mickeymouseclubhouse.com, sproutonline and YOUTUBE!!!!) They are calling him a genius on the computer (so do I). But he is non verbal and seems autistic though un-diagonosed. He prefers computers or video games over most people or other children. He likes adults and loves to watch other children play, he just doesn't like it when they focus too much attention on him. (He prefers mommy, me, or his daddy over anyone). He has mild CP and will be fitted for braces soon but walks decent. He still doesn't run and recently has learned to throw a ball. He still can't kick yet.
He has severe eczema and mild to moderate asthma and he still sucks a bottle due to serious oral aversion. But he communicates by some sign and taking you by the hand and showing you what he wants. If he is hungry, he will take you to the fridge and show you what to put in his bottle( sometimes he doesn't get to choose). He knows the letters on a keyboard and can type letters in the "search" which takes him to YOUTUBE videos he loves.
I have videos of him on my facebook and tons of pics. His mommy has done a wonderful job with him and she is going to school to be a Spec Ed Teacher! We are so proud of her for all that she has accomplished while dealing with a child with special needs and so very young herself. She is in her 3rd year of college and will graduate in less than 2 years. She is so precious and sweet.
Gavin is 4 1/2 now and she is 20. She moved out to go to college when she was 18 1/2. Gavin and his mommy stayed here with me in my home for the most part from his birth until she moved to college, and then he was back and forth between me and his mom and dad while Bay attended college. Baylea, my daughter, was always staying very active and involved whether he was here with me or with her. She is a wonderful mother. He was with me from May of last year until January of this year when Baylea and Gavin moved into their own apartment 2 hours away from me (pout). It was so hard letting my little angel and best friend (my Gavin) leave. I feel more like his mommy than his gramma based on the love I feel for him! But, I know I had to let him go to give her the opportunity to be his mommy, for the first time, in her own home, without an over-looking mother. They are doing good! My daughter is a wonderful mommy and I am so proud of her for all that she does for Gav and how she takes such great care of all of his health issues/needs. Of course, no one spoils him like gramma! I miss him so bad that, somedays, it's all that I can do to fight depression.
I know there is 4 years of stuff I left out telling you, but I have to tell you that his brain is REROUTING. Things are starting to all of the sudden work. Not perfect, but nevertheless, we are so thankful to GOD! We still have many obstacles, so please keep my family and Gavin in your prayers.
God Bless...
A gramma to an amazing cmv grandchild and blessed beyond belief.
- Shared by his grandmother, Lisa