How Did We Ever Make It Through The First Year?

Leaving the hospital was both a blessing and a curse.  Up to this point,  Jesse and I felt robbed of all the "normal" things most first time parents get to experience.  Bringing Gwen home, was our first step to healing. 

We settled in, but soon began to miss the "luxuries" of the hospital.  There were no more doctors.  There were no more nurses.  There were no more beeping machines to monitor Gwen's stats.  


We became the "medical professionals".  We administered the medications.  We figured out Gwen's feeds with the Joey Pump.  We hovered over her while she slept to make sure she was still breathing.  I guess you can say......we were finally parenting.

Life didn't slow down.  Most days were spent going to the pediatrician, the neurologist, the gastroenterologist, the optomologist,  and any 

other -gist you can think of.  If we weren't driving to an appointment, the doorbell rang constantly.  For the first few weeks we had nurses visit daily to check Gwen's vitals, weight, etc. 


Due to the complications and outcomes Gwen experienced, she was eligible for the Arizona Early Intervention Program (AZEIP).  This program is set up to provide immediate assistance for children, ages 0-3, in need of  rehabilitative services including: physical therapy (PT), occupational therapy (OT), and speech therapy (ST) to help them flourish and thrive.  

When it seemed things couldn't get anymore stressful, they did.  We noticed Gwen begin to roll her eyes towards the back of her head frequently.  Anytime we went from a light environment to a dark environment or vice versa she would arch and extend.  For sure I thought she starting seizing again.  


After an EEG produced no seizure activity, the optomologist confirmed she had cortical blindness (the total or partial loss of vision in a normal-appearing eye caused by damage to the visual area in the brain's occipital cortex. This damage is most often caused by loss of blood flow to the occipital cortex).  Of course all I heard was "blind".  I left the doctors office hysterical!  I remember calling Jesse sobbing, "she's blind, she's blind"!  Why God?!?  Why?!?  


Grandma Linda (Jesse's mom), had a connection to the Foundation for Blind Children and we started getting "vision therapy" once a week.  We learned Gwen is not blind.  Her eyes are perfect and in good health, but the damage to the visual center of the brain (occipital cortex) makes it challenging for Gwen to process what she sees.   


We had no choice but to get Gwen the services she desperately needed and that meant a lot of travel time.  This wouldn't be such a big deal, but Gwen HATES the car seat. Whether it is a five minute drive or an hour drive, it involved lot of screaming, a lot of gagging, a lot of choking, and a lot of vomiting.  After enough instances of turning blue, we now carry around a portable suction machine to keep Gwen from aspirating on her vomit and keep her airway clear.

After 6 months, anxiety got the best of us and we reached a breaking point.  We were mentally, emotionally, and physically drained.  We needed to be closer to our family.  We needed to be closer to our support system.   Due to the economy, we weren't in any position to purchase another home, so we moved in with my parents 4th of July weekend and placed our house up for sale.  (I don't think they were too upset about it :)). 

August 7, 2009 ~ Gwen took a turn for the worse. 

After months of medicinal treatment, Gwen's reflux had become so bad she was admitted to the hospital for dehydration.  The doctors monitored her for a week and decided it be best she have a nissen fundoplication.  (A surgical procedure to treat gastro-esophageal reflux disease and hiatus hernia, usually performed when medical therapy has failed.  The upper part of the stomach is wrapped around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter).  During the same surgery, the doctors also repositioned her G-tube to a new location.  The original  placement of her first G-tube had migrated underneath her rib cage.  A few days of recovery and we were back home.

September - December, 2009 ~ Football Season and the Holidays!

 

January 02, 2010 ~ Gwen's Baptism (#2).

Since we had the emergency baptism for Gwen in the NICU, it was very important for Jesse and I to experience a formal baptism.  Almost 1 year later, surrounded by Gwen's Godparents, Aunt Kelly and Uncle Jon, our family, and our friends, Gwen was baptized at Saint Mary Magdalene. 

      

January 17, 2010 ~ I can't believe we have a 1 year old!

Quick back story: Uncle Jon and Uncle Kevin thought it would be hilarious to give Grandma Linda a 400 pound billy goat and 200 pound black sheep for her birthday a couple months prior.   Since Grandpa Merle already had his collection of chickens and bunnies, we took full advantage of the live props and threw Gwen an "Old McDonald" themed party complete with petting zoo!  


Sheep cake courtesy of Grandma Becky!