Friday, February 28, 2014

Ava turned 3 and thoughts about Rare Disease Day

February 24, 2014 marked Ava's third birthday.  I can hardly believe that our little girl is 3 years old. It seems like just yesterday that she looked like this:

Leaving the hospital

Mason and Ava on her first day home

Maddi and Ava - sisterly love
In typical third child fashion I did not get any good pictures of her small family birthday gathering.  So, this phone picture will have to do:

Ava getting ready for her cake
Ava has had quite an adventurous first 3 years.  She has opened eyes and captured hearts.  We love you, baby girl, and can't wait to see what this year brings.

Family beach trip in July 2013
Photo Credit:  Chad Button

Today, February 28th, is Rare Disease Day.  I don't often consider what Ava "has" to be a "disease", but rather more of a chromosome "change", because Ava does not have a named diagnosis other than a "partial trisomy of the 1q".  It may also be because the word "disease" scares me.  Statistics indicate that 30% of children with rare diseases will not live to celebrate their 5th birthday.  This is terrifying, heartbreaking, and too close to home.  We have no reason to believe that Ava would not celebrate her 5th birthday, but there are many children with rare diseases who may become or are part of that 30% statistic. As I wrap my brain around the enormity of rare disease I will be looking to National Organization for Rare Disorders (NORD) and other non-profits for guidance and education.  I want to be educated about as many rare diseases as possible so that I can best support the many families living with and through rare diseases.  For more information about Rare Disease Day visit

Tuesday, February 11, 2014

Feeding Tube Awareness Week 2014: Nothing Can Hold Us Back

1008 Days Ago.

1008 days ago, it was a typical day with our family at home juggling care for a newborn and her older siblings; Mason was three years old and Maddi was two years old.  We knew that Ava was not gaining weight well, but we had no idea what was preventing appropriate weight gain or what was in store for us.  Late in the night on May 10, 2011, Ava developed a high fever and we rushed her to the emergency department.  Ava’s oxygen saturation was low and they admitted us for flu observation and oxygen support.  Six days later, Ava would fail her first swallow study, we would discover she had aspiration pneumonia - not the flu, she would receive her first NG tube to prevent aspiration, start genetic testing, and not eat or drink by mouth until December 19, 2011 when she was cleared for nectar thick foods and liquids. 

Ava all dressed up for the Royal wedding, 11 days before admission, this dress was swimming on her! - April 2011
1002 Days Ago…
Is when life, as we knew it, changed and we entered the world of tube-feeding with all of the struggles and blessings it holds.  1002 days ago, Ava had been in the hospital for six days while the doctors and nurses tried to figure out why this tiny ten-week old baby girl was not gaining weight and needed oxygen to keep her breathing at a normal level.

Ava after 4 days of NG feeds - May 2011
2 years, 8 months, and 26 days...
Is a long time to live with a feeding tube and to parent a child who is fed with a tube.  Especially when the initial assessment was that she would have an NG tube for one week and then reassess (which in my mind meant she would pass the reassessment and we would be tube-free in seven days).  It is also a long time to emotionally grow and thrive as parents, while our child physically grew and thrived with her tube feeds.

Maddi and Ava in May 2013
Photo Credit: Jenn Clark Photography
I remember feeling fearful when Ava first received her NG tube in the hospital.  Not fearful of what people would think or that she would have it forever because we initially thought it would only be for seven days. I was fearful of the discomfort it would cause her and of learning how to put it in.  I hated the tape on her face that irritated her delicate skin.  However, learning to feed Ava with the tube was easier than I anticipated.  Ava was continuously fed small amounts of food for 24 hours a day to prevent aspiration.  That meant that we not only carried Ava everywhere we went, but also her feeding bag, and for several weeks upon discharge, her oxygen tank.
Annual visit to the peony garden, June 2011, shortly after discharge
Super Daddy with Ava, the feeding pump, and oxygen tank - June 2011
For the two weeks that Ava was inpatient, we kept Mason and Maddi at home and in daycare to keep their daily lives as normal as possible.  I primarily stayed in the hospital with Ava since it was the end of my maternity leave, while my husband juggled work and Mason and Maddi.  We switched places a couple times during those two weeks to give each other a break and for each of us to see the other children. 
After two weeks in the hospital, we went home with Ava still using oxygen 24 hours a day and still feeding through her NG tube 24 hours a day.  I remember the day we went home like it was yesterday.  Mason and Maddi had not come to the hospital and so they had not seen Ava with her NG tube and oxygen cannula.  I was worried about what they might think or say; sometimes kids have a way of being very innocent and honest, but say things that adults may not be ready to hear.  I was sitting on the couch with Ava in my lap and just staring at her tubes…at her tubes…not at her. 
Mason, in his three year old wisdom, came over and lovingly patted Ava’s head and said in his sweet little voice, “awweeee….she’s so cute”, and walked away.  I froze...and realized that my heart was pounding because I was afraid he would say something about her tubes and I hadn’t yet figured out how I felt about them, much less how I would explain them to a three year old little boy.  But in that moment, seeing Ava through Mason’s eyes, I was forever changed.  I no longer saw the tubes on Ava’s face…I only saw Ava.  And I knew that Nothing Would Hold Us Back.
Mason and Ava in May 2011
That is when our lives changed again.  From that day forward, the way I felt about and viewed tube feeding was in a positive way and not with fear.  Tube feeding does not define Ava, it is merely the way she receives her nutrition.
Ava on the beach, July 2011
Photo Credit: Chad Button
Where are we 1002 days after May 16, 2011?  Ava now has a g-tube and is successfully fed a blenderized diet over four meals a day.  She is also cleared to eat or drink all consistencies of food and liquid.  Ava’s oral muscles are still weaker and so she is primarily fed via g-tube, but she enjoys oral eating and is orally eating more and more.  Mason and Maddi help carry Ava’s food backpack and have still never questioned Ava’s feeding tube.  If people ask about it they simply say that’s how Ava gets her food.  Ava has played in the ocean and swims in pools.  We bike, camp, hike, run, and enjoy all the activities in life we can handle with three children aged six and under.  One just happens to be primarily fed through a tube.   
Ava and the kids hiking in the Hocking Hills.  Ava was simultaneously tube feeding and hiking.  The Danger was for the cliffs, not for the tube feeding! - August 2013
Photo Credit: Stacey Thomson

How do we feel about our child having a feeding tube?  Thankful.  The feeding tube not only SAVED Ava’s life, but it allows us to LIVE life.  Without her feeding tube, Ava would not be here.  I don’t say that dramatically, but rather factually.  Ava aspirated fluid into her lungs.  If we had to continue feeding her orally before her muscles were ready, she would not have survived.

Photo Credit: Renee Tarmoom
Before Ava had a feeding tube I am not sure if I truly paid attention to other children or adults who had them.  After Ava received her feeding tube I wanted to run up to every family I saw in public or in the hospital and yell, “MY daughter has a feeding tube, I’m part of the club!!”…but that would be creepy and stalkerish.  So, now I politely smile and wave to the kids or smile and nod to the adults.  I don’t have a sign on my forehead that says, “I’m a tube feeding mom”, but I am ordering an “I heart a Tubie” button from the Feeding Tube Awareness Foundation store and will wear it with pride!

Feeding Tube Awareness Store

Feeding Tube Awareness Week 2014 Video:

For more information about tubefeeding awareness, please visit