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…