Chapter 19: Losing their Appetites

Sometimes I meet people for whom food is just not a big deal.  They eat to feel full, they give little thought to planning meals and they approach shopping lists with a pragmatism and frugality that is admirable, if not completely confusing to me.  We are not those people.  We are food people.  Not fat people as we force restraint and refuse to completely indulge our food fantasies.  But we love food.  We are the family that starts talking about the next meal soon after finishing the last one.  A good vacation is one with delicious novelty food.  Holiday traditions all include beloved recipes.  And so when we imagined having a family, we imagined all the food traditions we would establish with our kids.  They would bake cookies with Nana, go for Saturday morning doughnut trips with Dad, and develop a taste for Australian vegemite and American peanut butter.  It has therefore been a big adjustment instead having children that do not eat.  When we tell people that the kids do not eat they look at me confused.  Like surely you don't mean they never eat.  You must been they are picky and only eat chicken nuggets and Mac and Cheese.  Oh if only! Nope, they don't eat anything.  But once upon a time they did.  Dialysis, though, would change that.

As small nearly four pound preemies, Max and Addie could not yet eat, as was to be expected, so they had small NG tubes that went through their nose and into their stomachs to deliver food.  The feeding tubes were so expected that they did not really bother me but I was very determined to get rid of them.  Addie was healthiest so my energy was quickly poured into trying to get her to eat.  I breastfed her for a couple of weeks until the number of supplements we needed to add to their feeds and their other medical issues made bottle feeding more sensible.  So I continued to pump milk for them for months, pour tons of medications into it and devote time to trying to get them to drink the milk.  And it was never easy.  They were always reluctant feeders, but with perseverance Addie was drinking all her bottles, which included all of her medications, by early February, well before her due date, and we able to pull out her feeding tube for good.  I rejoiced in being able to take pictures of her face, without the tape and tubes that seemed to take up her whole face previously.   

Max was an even greater challenge because he seemed to have a weak swallow.  We started working on feeding with him later due to his lung bleed slowing everything down initially.  Then when we started, it seemed to go badly with him acting distressed and disgusted by the milk.  More concerning, the doctors were afraid he was choking on the milk and it could be getting into his lungs.  After a swallow study, it was decided he could only drink milk if we had thickened it.  So in addition to adding all of his meds to his milk, we now poured powder into it.  It looked like thick sludge and smelled like iron and antibiotic.  I was, and remain, completely shocked he actually drank it.  But slowly but surely he mastered drinking his sludge and his tube too was pulled.  Two babies with tube less faces!!! So many pictures!!! They looked healthy to me without the tubes and at that point, it seemed so important to me that my sick kids still appeared healthy.  This was not to say they had become amazing eaters.  On the contrary, each meal seemed to be a challenge and the nurses, therapists and all of us worked very hard to get those bottles emptied.  I spent hours thinking about how they were eating, worrying about if they were gaining weight and buying different bottles with varied nipples.  And because it was a challenge, I found myself filled with pride that they did eat and counted each ounce they gained as a personal accomplishment. 

As soon as we started talking about dialysis though, the warnings started.  Kids on dialysis do not tend to eat well.  They usually need feeding tubes.  Their bellies are so full of the sugar water that they feel full all the time.  The electrolyte swings remove their appetite and taste for food.  They tend to lose any desire to eat.  There was even a discussion about whether we wanted to go ahead and put a g tube, a permanent feeding tube surgically placed into the stomach, in before they started dialysis. Although these discussions were perfectly reasonable and I recognized that they were trying to prepare me, I was nonetheless convinced that this would not happen to Max and Addie.  They were going to eat even on dialysis.  They had been eating on their own for months now and I knew how to get them to eat even when it was hard.  So I told the doctors I wasn't worried because MY kids would eat.  The whole dialysis causing them to lose their appetite and not eat was never going to happen to them because I was the master baby feeder.  It was a combination of pride (which does, of course, always come before the fall) and stubbornness and innocent optimism.   

Once I had declared that my babies would continue to eat and that we would not be returning to feeding tubes, I then had made it my personal mission to ensure that ended up being the case.  Those initial days on dialysis, I was there every feed, using all my best tricks to get the bottles down.  The bottles had unfortunately become even more disgusting as we now had to add a lot of sodium into their food due to the dialysis.  The milk now stank of salty iron and medicine and I actually felt guilty feeding it to them.  But I continued to because we would not need feeding tubes.  Other than when Addie was so sick, we did manage to get them to drink their bottles initially and I was so excited, I pretty much wore a permanent smug supermom smile.  However, with each day the challenge became harder.  By three weeks after their surgery it was taking so long to get their bottles done that it would nearly be time for the next one by the time they finished.  I was essentially feeding one of them around the clock.  It was emotionally exhausting because I felt so anxious about each bottle being finished and I was trying to still seem calm and relaxed to them.  Feeding had become a huge ordeal but they were still eating so while my smug smile had vanished, I was still convinced it was doable and that I could avoid the feeding tubes.

Another week later and they were not drinking their milk well at all.  The occupational therapist was doing everything she could to help them, even facing them in the corner so they could not be distracted while rocking them and using every fancy trick they could think of.  It was not working.  Bottles were going unfinished.  An hour would be spent for them to get a couple of sips down.  Everyone was frustrated and the daily weight checks were getting more concerning as they failed to gain weight.  I knew I was losing this battle so eventually a full month after they started dialysis, I had no choice but to let the feeding tubes come back.  Tiny cheeks covered in tape to hold a tube down.  Little button noses with a tube wedged into it.  Sick babies actually looking sick.  It made me very sad.  I hated the feeding tubes.  But I also knew they had to get enough food and get all their medicines in order to get well enough to come home.  So I accepted my defeat but not happily.  It had been a mistake to insist that I could make them eat because it set me up to see their not eating as a personal failure.  It made something that should not have been particularly emotional in comparison to all we had been through, seem like a defeating blow. 

I did not give up even after the feeding tubes came back.  We continued for months to offer bottles, try baby foods and experiment with new ideas.  None of which proved successful.  But we continued to try.  And I continued to hate the nose feeding tubes with a passion.  In fact, I would not really feel acceptance of their tube feeding until we finally did get g tubes in their stomachs and the reminder on their face went away.  By that point, I had accepted it, even if I still could not totally understand it.

At three and a half, Max and Addie both still rely on their feeding tubes for their nutrition.  And I am still coming up with new experimental ideas and they are still not very successful.  I will offer Addie her own bag of donut holes and she will take it like a treasure and excitedly take out each little hole.  She will play with them, squish them, maybe feed one to Elmo, and then return them to their small white bag uneaten.  And I always look at her completely stumped and intrigued.  We are a family of food lovers.  How do my kids not love food?  How can they make a disgusted face at ice cream?  It is hard to truly understand.  But, I do accept that it is neither my fault nor theirs.  It is just a side effect of dialysis and everything they have had to go through.  It isn't a defeat, it's just a cost of a victory.  Dialysis saved their lives, it just killed their appetites in the meantime.  And when I look at it that way, the fact that they get their food through a tube rather than in their mouth really does not seem like a big deal at all.   Plus, it just means there is more food left for the rest of us food lovers...