gavin.

After losing a set of twins on our first try, we were thrilled when we got pregnant again... with twins!  Sadly, one twin did not make it and the remaining twin is our first son, Gavin.  
My pregnancy was complicated with lots of preterm labor and months of bedrest.  Shots to keep premature birth at bay and tons of ultrasounds.  Ultrasounds showed that Gavin had enlarged ventricles in his brain.  They kept an eye on them, but then decided this was a normal variant for Gavin. Despite all the issues during my pregnancy, we didn’t expect Gavin to have any issues!


Gavin was born on September 29th, 2007. He made his grand entrance three weeks early due to a dangerous spike of my blood pressure. The natural birth we had planned turned into a C-Section.  We were all smiles in the delivery room - still believing that everything would be fine.  Believe me when I say - there is nothing in this world worse than a silent delivery room.  Gavin wasn’t breathing when he was delivered... and needed assistance to breathe for several minutes. After a quick kiss he was whisked to the NICU where he spent the first thirty days of his life.
It was days before I held him.

Gavin has had low tone from day one.  He was on a feeding tube in the NICU because he was unable to suck. My breastfeeding plans turned into pumping exclusively for months. Once we brought him home it was time to exhale.  Finally we could settle into life and enjoy our little baby.

Unfortunately, God had other plans.  Our very well protected - almost sheltered - little baby contracted Respiratory Syncitial Virus, or RSV. Despite our best efforts, he did not improve and was admitted into our local hospital. 
After two weeks of sleeping in chairs and seeing our son deteriorate on a breathing tube - the hospital said he needed more serious intervention and set him up for a transfer to a large children’s hospital an hour away. They could not understand why he wasn’t getting better and thought he might need a ventilator.

Following an ambulance when you can see your first born infant child through the window in an incubator... well, that ranks up there with a silent delivery room.  Completely devastating.  I sobbed for the hour drive to A.I. DuPont Children’s Hospital in Wilmington, Delaware.   All I’ve ever wanted to “be” was a Mom.  This was not going as I had planned - losing twins, losing Gavin’s twin, difficult pregnancy, bed rest, C-Section, baby not breathing, pumping, feeding tube, RSV.  I was feeling completely defeated.  It was in the car at that moment when I remember making a clear choice.  I knew in my gut that something was very wrong. And as I collected more tears than miles on that drive, I made the choice to accept. Clearly my “Motherhood Fantasy” was not going to happen - but I had a little baby boy that needed me to put aside all of my expectations and just... be.  I needed to be his Mommy... just as he was.
We spent the next six weeks at DuPont. I lived on a metal cot next to his crib and Ed drove an hour to and from the hospital after work.  It was in this hospital that it was confirmed that Gavin had bilateral sensorineural hearing loss.  He had nerve damage, supposedly irreversible, in both ears and would require hearing aids.  
He continued to deteriorate and it was finally discovered that Gavin had somehow contracted Botulism.  By the time they discovered it, it was too late to treat it.  The Botulism practically paralyzed him.  He could barely move and needed a feeding tube once again. The two ways we know that you can contract Botulism are from honey (which we did not give him) or from soil, usually around construction sites. The only thing we suspect is that someone brought it into the NICU after he was born as the hospital was under construction.  Botulism has a long incubation period before it manifests in one’s body, so the timing matched up.  But - who knows? It will likely always be a mystery.

Gavin was finally discharged and we brought him home on a feeding tube and oxygen.  He turned six months old shortly thereafter which is when we found out we were pregnant again!

People thought we were crazy... but we knew just what we were doing.
He had been receiving therapy in the hospital on my request... but once we got home I immediately scheduled Early Intervention therapists to come out.  For the next 2 ½ years, he received Physical, Occupational and Speech/Feeding Therapy, a hearing teacher and a special instruction teacher.  These therapists made such a difference in Gavin... and became family to us.
Ed and I struggled to keep those itty bitty hearing aids in Gavin’s ear.  One day we decided to take him to the Saint Katharine Drexel Shrine not far from our house.  Saint Katharine was a nun who was canonized in 2000 not long after restoring a little girl’s hearing in 1993.

We took Gavin there to ask for a miracle.  

Less than six months later, much to the shock of his doctors, Gavin’s next sedated hearing test came back normal.  There was no reason to believe this was “supposed” to happen, medically... but there was every reason to believe this was MEANT to happen.

From that moment, I decided not to believe anyone when they told me what they “knew” about my son.  I brushed off comments like, “Don’t get your hopes up...” and “Don’t expect miracles...” and “Just keep him happy...”  If anyone told me that Gavin “wouldn’t be able” to do something... that I was “chasing rainbows” believing that he would... it just made me more determined.
Once he was able to get rid of the hearing aids, I turned my focus on the feeding tube.  I so wanted Gavin to eat orally... but he struggled with gagging and low tone in his mouth.  

When a “G-Tube” was being pushed by professionals - I went 
into high gear.  I literally syringe fed Gavin all through the day - constantly putting things in his mouth.  He would still get most of his nutrition from the feeding tube, but I didn’t want him to forget what it felt like to have something... anything!... in his mouth.  I used a Nuk brush, a toothbrush, and syringes filled with formula.  Then, on the advice of a nutritional expert, I started making pureed food for him.  I would feed him like a little bird... and soon he was eating whole bowls.  


Pureed Yams... a vegetable stew that contained more than six different veggies... chicken... lentils... and even Quinoa, which admittedly I had never heard of.  It wasn’t long before Gavin started gaining weight, his eczema issues improved greatly and we were able to take him off the feeding tube entirely.
It was a great day.  Gavin continues to eat purees to this day, at 5 years old, and we continue to practice with solids. But getting him off that feeding tube will always be my greatest accomplishment.
Six days before Gavin's first birthday, he was diagnosed with Cerebral Palsy. Even though I knew in my heart I would hear that diagnosis, it was still a crushing blow. We want to try anything that has the possibility of healing our son.  We bought him a Kid Walk dynamic mobility system and he learned how to take steps.
Ed and I went nuts and bought a Hyperbaric Oxygen Chamber for our home.  I went in with Gavin for Oxygen therapy for an hour a day for over two years. We take him to an energy healer named Dr. Trish and he makes great strides after each visit.  We signed him up for therapeutic horseback riding and he developed confidence and increased trunk strength.
When Gavin turned three, it was time to end Early Intervention and start looking at schools.  I was not at all convinced that Gavin was ready. I couldn’t see putting this little boy on a bus and not be there to supervise and learn from his therapists. We were lucky to be assigned a coordinator that was supportive and understood my concerns.  
Our very fist IEP process was a breeze and soon Gavin was set up with all of his therapy at home.  He gets Physical, Occupational, Speech and Feeding Therapies... and he also has a Teacher.  His Hearing teacher still comes once a month to check on him, too!  

January 12th, 2011, Gavin went into the hospital for what should have been a simple surgery.

He has Ptosis, or droopy eyelids, on both eyes.  He was having both of his eyelids lifted.  Because of his low tone, he is at high risk when receiving anesthesia.  

He had a hard time breathing on his own in recovery and ended up in the Intensive Care Unit for three days. 
While he was in the ICU, he developed a corneal abrasion. The abrasion was so severe that his eye had to be sewn shut four different times over the next four months. We took him to three different hospitals for second opinions.  They all concurred that he was at risk of losing his eye if it didn’t heal.  


We applied ointment every two hours around the clock for several months... dealt with suturing his eye ourselves with steri strips... kept plastic shields over both eyes to keep him from ripping sutures out... and prayed.  

It was such a tough time.  But once again, our Superhero pulled through.  Not only did he pull through, but he shocked doctors with the minimal scarring on his cornea. 
What they told us would be a permanent, noticeable scar is barely visible.

This year, Gavin started school! Our local Kindergarten Center opened a brand new multiple disabilities preschool classroom very close to our home. Luckily, I was able to convince the powers that be that Gavin's current aide, Miss Sara, should go to school with him. That was a HUGE relief. They ride the bus to school - spend morning through lunch there while Gavin gets all of his therapy - and Brian and I pick them up at 1pm!

Gavin loves school and is really thriving there and at home. He's even starting to walk holding our hand - which is a dream come true!!
There is so much more I could tell you about our sweet Gavin.  He truly is our Superhero and amazes us with his spirit and determination every day.  
He’s a very laid back child, full of smiles and giggles.  He has favorite songs and favorite shows and he loves his little brother.  
 I hope you’ll follow along as I write about his daily adventures.  I know there are big things in store for this child.




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