Tuesday, August 9, 2011

"Bee"-ography Monday

This week's Bee-ography, though a day late, comes from Mason's mommy Sue. 

Mason Josiah Quaid
December 5, 2001
7lbs 2 oz, 20 inches long

When we were contacted about a Birth Mom expecting a baby boy with HPE (later found to be hydranencephaly) we didn't think twice before saying "YES!". As the parents of an amazing son with hydran we were not only prepared but excited! Our first Bee, our hero ^Sky^, had taught us so much about the sweet blessings of parenting children with what others would call "severe disabilities".  

As it turned out Rhonda had been planning on placing her baby with a wealthy family on the east coast. When he was found to have issues they backed out. Rhonda was then referred to a place where she could obtain a late term abortion. Thankfully the attorney working with her called an Adopt America Rep who in turn called us. Six weeks later our precious son was born!
We flew Rhonda to Utah for the birth. We feared that if he needed a NICU we would be to far away to advocate and care for him. After she arrived Rhonda actually had several tests including a prenatal MRI to try to nail down a diagnosis. Nothing was conclusive but we were given several possibilities. All of them were very serious, none of them was hydran???

For the first, and last, time ever I was present for the birth of one of our adopted kids! It was amazing!!! Of course we got "the talk". What do you want us to do if he doesn't start breathing on his own, yada yada...... I thought that was a pretty dumb question because at that point we didn't even know for sure what we were dealing with. Also a resident, who happened to know me from our Children's hospital, ran into me in the hall outside labor and delivery. She informed me that the doctors and nurses felt that I didn't know what I was getting into and that I was expecting a "normal" baby! That still makes my blood boil! Like a "normal" baby would be more worthy of excitement like I was expressing! Like I, the mom of a little guy with hydran and a multitude of other anomalies, didn't know what I was getting into?!?! I knew quite intimately the blessing about to enter our lives!!!
Shortly before Mason was born we were moved to an operating room where c-sections were usually done. We were taken there because it had a window through which babies were passed to the NICU. Turns out Masey did need a NICU! Just long enough to prove to everyone he could do this! We had the most adorable guy nurse there. He would come back to the window every few minutes and say "he is doing great"! He was so bubbly and excited to bring us the news each time! One of my favorite memories! By the time Rhonda was stitched up and back in her room Masey had been transferred to the well baby nursery and was ready for a visit!
 He was the most BEAUTIFUL baby. What he lacked on the inside of that little head he made up for on the outside! He had the most amazing head full of hair I have ever seen! The nurses and I joked that he had his hair highlighted for his birthday. It was beautiful shades of light and dark blonde.
Masey went home from the hospital at 3 days old. He had to stay an extra day due to jaundice. For the first month or so he was a perfect baby. He ate, slept, fussed, and cuddled like any newborn. After that he got increasingly fussy. He was diagnosed with reflux, which we treated, and we began tranxene for neurological irritability. While treatment helped he remained a VERY fussy guy! Many days I felt like I was sitting on the edge of my seat just waiting to go to the ER. I couldn't imagine him being that fussy and not having something terribly wrong. 

Then around his first birthday the fussiness stopped. Now a days there isn't a happier more peaceful little guy anywhere! ( Little??? He is 9 1/2 and weighs 80 lbs! ) In fact he goes years at a time with out crying at all! Smiles however are plentiful!

At about six months Masey seemed to be forgetting how to suck. Each feeding we would do a series of sucking, forgetting, oral stim, sucking a bit and then forgetting again and repeat. We found a haberman feeding system that helped for a while. The nipple was longer and the increased contact with more areas of his mouth seemed to help him remember to suck. He lost the ability to suck on a binki but I could get him to suck my finger. Whenever he would forget how I would stroke the roof of his mouth from back to front and he would usually start to suck again. I know I looked pretty goofy with him sucking on my finger but it calmed him tremendously! We finally made the decision to place a feeding tube. Even thou we were able to keep him growing and gaining we spent all of our time feeding. He, and we, did little else. He had a nissen at the same time which fixed his severe reflux. Soon he began to aspirate on everything so we went to using the feeding tube full time. It was such a blessing and saved so much stress while keeping him healthy at the same time!

At about 8 months it became evident that his head was becoming huge! His growth chart for his head looked like a mountain peak. I took him in for a neuro surgery consult. They did testing that showed no pressure from his hydrocephalus. The refused to give him a shunt. I was convinced that even though there wasn't pressure his quality of life would be very affected by his uncontrolled head growth. I adressed this several times with the neuro surgeon, but to no avail. Finally I went to another doctor who agreed and a shunt was placed! It has worked beautifully ever since!

About the same time Masey had his first seizure. We happened to be in the hospital for another appointment. When the seizure began I went next door to neurology and grabbed the nurse. She confirmed that it was a seizure. Over the next few months the seizures increased and he was started on phenobarb, then topamax, and eventually lamictal and keppra. Over all his seizures have been more irratating and interrupting than dangerous.

Just as Masey was approaching his first birthday it became more and more evident that he was having airway issues. We took him to ENT who scoped his airway and told us it was collapsing as he breathed. Two days after his first birthday he had surgery to place a trach. Since ^Sky^ already had a trach it took a lot of the apprehension out of this procedure. I knew what a blessing breathing is, no matter the route :)! About six months later Masey needed to be placed on a ventilator to help him fully inflate his lungs. After several episodes of respiratory distress and pneumonia the vent was a HUGE blessing! His lungs have remained clear and he has never had another bout of pneumonia or any lung problems!!!

At age 4 he got his first baclofen pump. It worked sooooo well up until last May when the catheter plugged and he had it replaced. The new catheter wasn't in place correctly and he just had surgery to correct that. As of today he seems to be back to his healthy happy self!

I knew after we adopted ^Sky^ what sweet spirits kids with hydran posses. But to be blessed twice by that overflowing amount of hydran sweetness is amazing! Masey is following his brother ^Sky's^ example. He is so brave and tolerates his challenges in such am amazing way! We continue to count our blessings and enjoy each precious day! He is truly our 2nd hero!!!

1 comment:

  1. What a beautiful story from a beautiful loving family. God bless all of you.


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