You cannot force a child to eat. That about sums up the frustration of my life.
For those who have followed our story from the beginning, you know all about our food saga. I was prepared for challenges once I found out about Kiran’s heart defect, but I never expected us to still be in the trenches with it (or rather, perhaps, in the trenches once again).
Here’s our food story, in a nutshell.
The dream: I would be able to breastfeed primarily, even if he needed some formula to boost caloric intake. We would NOT go home with a feeding tube.
The reality: I barely even got a chance to try breastfeeding. I didn’t have much support with it (it was the weekend by the time we trialed), and the importance of calories and fortifying was already being pushed in my face. I was too scared – too meek – at the start of Kiran’s life, so I just allowed myself to be pulled in whatever direction the doctors were pointing. It is one of my bigger regrets, but I choose to not dwell on it. I pumped exclusively (and fortified with formula for calorie/volume needs) for the first six months of Kiran’s life, and then he went to formula. He did come home without a feeding tube, but we ended up placing one within a few days. Then we went a period of time (three months?) when he took his entire intake orally. Then came the feeding tube again (it was just too much work for his heart pre-surgery), the g-tube surgery, and here we are.
The dream: His oral intake would take off after open heart surgery, and we would be off the g-tube in no time.
The reality: He took off for a minute, and then he went back to bottle refusal. His skills at the time were way too far behind to safely take in everything by mouth, and we had to rely on the tube for his full nutrition, using oral eating as mere practice. We are now over two years post-op, and until the last month or so, this has been our reality.
Practice does make – well, not perfect in this case – but it makes progress! As I shared, his feeding team in Iowa City was really impressed with his skills acquisition in the last six months, and his weight gain was more than they want to see in that timeframe. He is now taking enough by mouth for it to start counting toward his calorie needs. It is a really big deal and a really big step to decrease calories through the tube – and it is also the start of a really big rollercoaster ride, with Kiran showing us how much he’s willing (and safely able) to do orally.
The dream: The reduction in calories will make every meal start going so much better, and he will love eating – and finally, finally, one big piece of our everyday life will become “normal”. We will be off the g-tube soon! (This one truly is a dream and, unlike the other two, I am stating this one a little tongue-in-cheek – I know a LOT more now.)
The reality: He is having some really good meals – more than he’s had ever – and it’s a very exciting time! He also has some really normal-for-him meals and some really total-refusal-type meals…and I am finding those to be more frustrating now. For the longest time, I was in a fairly good place in my head around eating, because we really weren’t chasing some giant goal. Now, I feel the pressure. I noticed today at lunch (one of the really good meals!) how much I am letting how mealtimes go affect my stress level and overall mood.
So, really, I’m just here to remind myself of our journey. It hasn’t been perfect, and it certainly hasn’t gone the way I wanted it to. But Kiran has always gotten the nutrition he needs, and he has grown big and strong because our food journey has been what it’s been. And we have come really far! His skills really have gotten so much stronger, and we are seeing an eagerness to open his mouth for foods we have never seen before!
This IS going to be a rollercoaster. It’s going to be a long-term process. We may never fully make it off the tube. I know these things. And I just want to remind myself to take the pressure off. I don’t want meals to become the stressor they have been in the past. I want to celebrate and enjoy the good meals and just let the bad or mediocre meals roll off my back. Because more good meals are around the corner for Kiran.