Ian's Story

I have never met Becky or Olga in person, but they will forever be remembered in my family for being the people who helped my son, Ian, eat. Ian was born with congenital heart disease and laryngomalacia and had a NG tube placed when he was diagnosed at a month old. At the time, we were full of hope that he would get off the tube when he had his heart surgery. It was a huge disappointment then when he had the surgery at four months and wasn’t increasing his oral intake. He then had a supraglottoplasty done for his airway issues at five months and again, there was the disappointment of no improvement.

We did everything we could think of to help Ian to eat. We offered him the bottle before each and every feed. I bought every sippy cup I could find. We took him to see the speech language pathologist regularly and followed the dietician’s advice to the letter. All of these things helped Ian to gain weight, to go from not being on the growth curve to being at the 35th percentile, but it did not help him eat.

I started googling, joking to my family that I was turning to the “internet people” for help. I read about how some babies didn’t eat when then received full calories through the tube and that cutting back on the calories through the tube could help. I asked our SLP, she said that wasn’t her area, ask the dietician. The dietician said we needed to continue offering the bottle, then tubing the remainder and only when he was taking 80-90% of his calculated needs could we pull the tube. Ian was no where close to this, despite offering him the bottle for every single awake feed for seven months, he would take in about 15-30ml at a time, a far cry from the 880ml she wanted.

So I turned to the “internet people” for help. Ian was assessed by Skype by a well-known expert in the area of tube weaning who was knowledgeable but didn’t feel like the right fit. We went through the introductory Skype session with NoTube, but couldn’t bring ourselves to put thousands of dollars down when we hadn’t tried weaning on our own.

Finally, I tried to track down another expert through Olga. She provided me with the contact info, but more than that, she wrote me about her experience and paid attention to our story. When that expert didn’t respond to multiple attempts at contact, I emailed her again, desperate for another name. She told me about Becky.

The first time I talked to Becky was amazing. As the mom of a critically ill child, so many professionals cycle through your life. Most of them read reports and think they know what has happened and who your child is. Becky was one of a very small handful of people who listened. She listened for an hour and a half. She was someone who understood that having a baby with a NG was affecting every area of our life, that we needed help, that we couldn’t go on just offering the bottle. She listened to me as I talked about what it did to me to have Ian reject the bottle every day, many times a day. She had helped babies like mine. She knew babies with his problems, she knew where to start. I didn’t know it then, but that conversation was the beginning of Ian becoming tube free.

It took more time, of course. Within about a month of that first conversation, we started a wean. Becky looked at our plan and thought it was good. For those first few weeks of the wean, we texted every day. She was the voice of reason, telling us to keep going, reminding us of what we had read, that it takes time, that some weight loss is normal. That it takes time for weight gain.

I can’t overstate how much it helped to have her there, experienced, able to answer questions, knowing that she had done this before. I look back on how Ian did through the wean and honestly, he was a champ. He did great. But I didn’t know it! I was obsessed and anxious about every calorie he did or didn’t eat. I didn’t know how to cope with him not getting in the exact amount of food every day. I was scared and it didn’t help that my local professionals were telling me that he needed more, more calories, more fluids. I couldn’t trust myself to look at my son and know he was okay- after all, I had told myself that he was okay when he was getting sicker and sicker before his heart diagnosis. I was so scared. But I could trust Becky, she had done this before.

And Ian ate. Interestingly, never as much as the nutritionist calculated he needed to eat, not one single day, but he is growing and gaining and doing great. He has been tube free for about two months now and it is amazing. He is gaining weight and gaining milestones and those days of trying to keep the tube in and trying to put it back in when he pulled it out and trying to tape it well and trying to keep his skin from breaking down and trying, trying, trying all the time to get him to eat- those days feel like a bad dream. It has faded faster than I could have imagined at the time.

All of this to say, if you’re thinking about enlisting Olga and Becky to help you with your tube fed child, I think you should do it. They changed our life with their kindness and expertise and common sense and help. We will always, always be grateful. Please feel free to message me to ask me more about our experience if that would help you make your decision. All the best to you and your family.