World of Color

We finally saw World of Color at Disneyland's California Adventure. Well, by "see it" I mean...from behind. It's this really great water show with movie clips projected on panels of water and tons of lights, fire, and amazing music.

We got there early to get our "FastPass" so we could see it from the front, but alas, tickets were gone within an hour of the park opening, and we didn't get to the park until 3:30. The show was at 8:15.

As you can see, it was quite bone-chilling at 60 degrees and we had to actually bundle-up. We went on Toy Story and then staked out our spot by making a barricade with blankets and the stroller around 5:00. After a nice dinner at StoryTellers Cafe, we hunkered down and waited an hour for the show to begin.

Disney knows how to put on a show...even from the back! We had a great time and can't wait to see it from the front.

I've dealt with enough vomit to last a lifetime!

As an infant and baby, we listened to the societal norm and had Ava on the standard formulas. When we realized that her intake was an issue, we tried every version of every formula on the market. Hundreds of dollars were spent trying to increase the palatability of the formulas and spark Ava’s interest in eating them. It was never an issue of Ava being able to tolerate the formula; we just couldn’t find a formulation that she wanted to eat.

In January 2009, everything changed…

Ava had had her NG tube (a tube that goes through her nose and down into her stomach allowing her to be fed) for about 3 months. Diagnosis was nowhere on the horizon. We’d spent 8 days at our local Children’s hospital, 4 days at one of the top hospitals in the country, and countless doctor’s visits, tests, and numerous urgent care visits to replace the NG tube.

Over the course of a few days, Ava started vomiting. It wasn’t the normal spitting-up that young children often experience; this was projectile, horrific, gut-wrenching vomiting. She would do it during a feeding or within 5-10 minutes of finishing a feeding. At the onset, it was only once or twice a day. We justified it a million ways…we fed her too fast…there were air bubbles in the syringe…the formula was too concentrated. We seemed to always be able to come up with a “reason”, so we weren’t horribly concerned when it first started.

Within a week, it became a problem with EVERY feeding. We tried everything. I tried to feed her only an ounce every 10 minutes, I tried lessening the concentration of the formula, I made sure she was sitting upright… but none of these things helped. It continued to worsen.

It became so bad that we would feed her sitting on a waterproof crib mattress so when she vomited it was easier to clean up. Most of the time, it seemed like she threw-up more than we put in. We couldn’t believe this tiny 7 month old could vomit as much volume as she did.

I got to the point where I dreaded feeding her. I would silently be crying as I pushed in 1cc, then another, and another…. Was she going to throw-up? I’d study her face for the telltale signs. Her lips would go pale, and her sweet little eyes would give me this horrified look as if to say, “Please stop feeding me!” She would even push the syringe away and start crying when she would see me come toward her with the feeding supplies.

Poor sweet Zoe would run screaming out of the room when Ava would start vomiting and would sit crying and sobbing uncontrollably on the floor. She’d be backing up as far as she could against the wall while she was shaking and almost hyperventilating…a look of horror in her eyes and terror in her screams. She became petrified of Ava’s feedings. She would start crying when it was time to hook Ava up to the tube. She became obsessed with vomiting and was constantly asking if various people in her life were going to “burp” (as she called it). The poor child’s life was so filled with vomit and her anxiety was so high that she got to a point where she couldn’t make it through an hour without some mention or concern about vomiting.

We woke up on a Saturday morning and Mike did Ava’s feeding. Within a few minutes, every single drop came up and flew about 5 feet. Past the waterproof crib mattress, under the couch, on a laptop that was on the other side of the room, and all over the wall. I’d had it…. I lost it…. I sobbed 5 months worth of tears….I was empty. This one act of vomiting finally broke me. My stress threshold had been reached. I just wanted to give-up. I wanted it all to go away. It just had to stop. My soul had been beaten and ripped apart. I was exhausted to the very core of my being.

We decided to take her to the ER at the hospital she was at the month before. She was admitted for dehydration. We stayed for 12 days with countless tests and they tried a million variations of formulas and feeding schedules. Her g-tube was surgically put in on the eighth day, and the feeding trials and vomiting continued.

By the twelfth day, her medical team came in the room and declared, “We don’t know why she’s vomiting, we can’t stop it, and we’re going to just send her home.” As thrilled as I was to be leaving (more on the hospitalization later) what was I going to do with her at home?

Mike started the long drive up to get us, I packed up our stuff and fed Ava one last time. We were sitting on the couch by the window when Mike wheeled in the stroller with the car seat and walked toward us. Ava started vomiting. It was the biggest round of vomiting she’d ever had. By the time she was done, she and I were sitting in a massive pool of vomit on the couch…literally a POOL. We called the nurse who told us that we fed her too fast and sent us on our way.

Mike and I left knowing they had given up on us. We were on our own. Ava was going home to die. How could they abandon us? How could they allow us to take home a child that was unable to be fed? We asked to be re-admitted as we were walking down the hallway by the nurses’ station and they said that her room had already been given to another child waiting in the ER. They sent us home because they needed her room…THEY NEEDED HER ROOM!...we were appalled.

We got home and the vomiting continued. On the third day out of the hospital, we went back for our “re-check”. We explained to the doctor that she was still vomiting and as he was writing in her chart with his head down, said, “OK, we’ll get her admitted and schedule her fundoplication.”

Of all the things we have done for Ava, I am really proud of what we HAVEN’T done. A fundoplication is a pretty radical treatment that seems to be done on every baby/child that has any kind of reflux or vomiting. It is drastic and carries life-long consequences. It is riddled with complications and doctors do them like they are the solution to everything. In a nutshell, the top of the stomach is wrapped around the base of the esophagus and tightened. By doing this, you prevent the child from vomiting and burping.

A dear friend of ours is a pediatric ICU nurse and told us, in no uncertain terms, to make sure that no one EVER “fundoed” her. She told us countless stories of these poor kids who spent hours upon hours retching and in excruciating pain from gas build-up with NO relief. The only way some of these kids were spared from the agony was passing out from exhaustion. She called it “torture”. Fundos have their place, and they are not inappropriate for every case, but the rate at which they are done to these small children is obscene!

So we refused the surgery. The doctor stood up and as he walked toward the door said, “ Then I’m sorry, I can no longer help you.” And out the door he went. We were officially on our own. We took Ava home and instead of doing what the doctors told us…which was to keep shoving the formula in (“If she vomits, just put more in.”) …we decided to fix her ourselves. The doctors weren’t going to help us. This was it…do we just keep doing what we’re doing and let our beautiful baby die, or do we fight?

We chose to fight…and it was (and still is) the hardest fight of our lives. It changed us and it changed the course of Ava’s life. We decided to take control. We decided to use some common sense. We decided that Ava’s nutritional status and brain development were the absolute most important things right now. She can always learn to eat. We can play the “withhold food and see if she gets hungry” game later. Right now, her brain needs to grow. Right now, her body needs to be nourished. Life could be permanently altered for Ava without the right nutrition. We weren’t willing to take that chance. To hell with the doctors! This was our daughter and it was time for us to stand up, fight, and be the parents she deserved.

So the real war began…

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 easy...it was fun...it 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 live...it 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 all...in 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!