Thursday, November 4, 2010

Having a tubie does have some positives...

It's funny when I stop to think about how much Ava's tubie has changed our lives.
I was SO strict with Zoe's diet as a baby and toddler. She didn't eat ice cream or chocolate until she was 3. In fact, I use to make her "green" pizza. It was one of her favorite meals and she would often ask for it. I found all the green veggies I could, steam them, and then put them through a food processor. I included kale, brussel sprouts, asparagus, broccoli, green beans, peas, spinach...the recipe changed each time I made it, but the batches were big and I froze it in single serving sizes. It became a little joke with me to see how many crazy things I could put in the puree and still have Zoe eat it. A slice of bread, spread on the green "sauce", and melt a bunch of cheese on top. She ate it like it was candy...three times a week at a minimum! And so was always the way with Zoe. She was a great eater, ate EVERYTHING I gave her, and happily indulged in lots of fruits and veggies. She was was made me feel good to have her eat this way...I felt like I was a good mom...and people marveled at her diet.
Looking back, I do laugh a little at myself. But I do not, nor will I ever, regret how I handled Zoe's diet. I wouldn't change a thing. She got her VERY FIRST cold when she went to pre-school. She was, and still is, a healthy and smart young girl with a strong desire to eat "brain" foods. She likes treats but doesn't over-indulge and understands the concept of eating healthy foods first and having a sweet after. Like me, she LOVES desert, but (unlike me!) will happily eat a good meal before having it.
Then Ava came along. Everything I believed about eating and foods changed. My self-worth and confidence plummeted. Of all people to mother Ava...who thought it wise to choose me? I'm insanely type-A and controlling, I believe that nutrition in early childhood can shape our entire lives, and I'm all about food and how it relates to children's growth and development. So I struggled with my own self-doubt and tried to grasp the reality that I was unable to feed my child...while at the same time, living in fear...real FEAR...every day, that my baby was going to die. Mike and I would stand outside her bedroom in the morning and fight over who would go in and wake her. I would beg him to go in. I didn't want to be the one to find her dead in her crib. I mean, if we lost her, I'm not sure how life goes on...but if I was the one who found her... So we lived with that constant fear looming over our heads for almost 2 years...and we would have the same fight every morning...and it took it's toll.
So how do I get this child that refuses to eat? How do I possibly manage to have a child that will happily starve herself into the grave?
The g-tube has not only saved Ava's life, but it has saved me as well. It has allowed me the freedom to give her all the nutrition she needs without the bargaining, cajoling, and fighting involved with poor eaters who don't have this life-line. I CAN'T and WON'T turn food into a constant battle. I have another daughter to be concerned about, and food is the last issue I need my girls to worry about.
In our house, food is something we eat to is put on everyone's plate and life goes on. Conversations are had, we laugh, we goof around, and I covertly watch as the plates slowly empty. I sit next to Ava and I silently watch as her food becomes cold. Most of the time she doesn't even pick-up the food she has on her plate, but on a very rare occasion, she might dare to put a little bite in her mouth. We don't rejoice, we don't scream and clap and cheer. This isn't a behavioral issue that can be modified with positive reinforcement or bribery. This is some sort of medical disorder...
After the meal, the plates are cleared and Ava comes into the kitchen to get tubied. It's quick and easy and really not a big deal. Within a few minutes, she's on her way...back to playing or torturing Zoe.
We believe we have passed the "life and death" stage and we are now in the "wait and see" phase. Doctors are stumped and Ava doesn't qualify for any therapy because she knows HOW to eat. Every test imaginable has been run, and in many cases, re-run. We still keep our eyes and ears open for possible answers, but the days of scouring the internet, endless doctors' appointments, and running test after test are over. Life has settled into some normalcy. Life has trudged on.
So we wait.
I've come to a time of quiet acceptance. It is what it is...and it's OK. Mike and I took charge of her care 18 months ago (more about that in another post) and we do what WE know is right for her. In doing so, I regained my confidence as a mother to this unique child. No longer was I helpless...I was truly empowered. She is the child she is because of our perseverance and dedication. I credit the doctors with doing more harm than good at this point and I believe this will be our life for many years to come.
So Ava's tubie has saved us many more ways than I can say. She may, one day, choose to tube-feed herself for the rest of her life. I'm OK with that. I know that I have done EVERYTHING in my power to provide her with the best medical care possible, the best nutritional support available and I have worked hard at keeping her childhood normal.
I have no regrets. I don't feel like I have failed in some way. I feel confident we have made the right choices (many times, against medical advice). Ava is our miracle. She's done everything the doctors' said she wouldn't. She's alive. She's happy. She's funny. She's smart. She's our sweet Avie!

1 comment:

  1. I started to read your blog entries tonight and I could not stop before I had read it all -twice. Thank you for sharing your experience with us. As I look at the happy picture on top of your page of Ava next to her sister, I know that she will grow up to become a healthy and beautiful woman. She will be strong like her Mom and the adversity she must endure growing up will make her even stronger.
    Stephanie, you are an amazing woman with an equally amazing husband. The two of you are giving the gift of life to a lovely girl who only a few years ago would be destined to live a very short life.
    Thank you so much for including us in your daily struggles and successes by giving us this blog.