They can’t always eat when they’re hungry, the number on the scale doesn’t tell the full picture and, no matter what, things will be OK. These and other hard-earned lessons spill freely from Toronto-based Nina Alhambra, whose four-year-old daughter has transitioned off her G-tube.

How did tube-feeding come into your life?

My daughter, Emily, was born with Treacher Collins syndrome and the characteristics that come with that, like a cleft palate and recessed jaw, made it very difficult to eat. She started on a nasogastric (NG) tube, which the doctors sold to us as ‘not permanent’.

Emily also drank from a specialised bottle that worked with her cleft palate at the time. There was hope that she’d be able to eat orally, but we were far from it. Emily hated the NG tube. She was pulling it out numerous times a day.

How did you deal with that? Did you learn how to put the tube in yourself, or were you in and out of hospital?

The medical team taught us how to place it. Mind you, it was awful. Emily was in the hospital for the first two months of her life. My husband worked for long periods, so I was by myself.

Having to insert that tube several times a day on my own was traumatising for both me and Emily. I was also completely obsessed with how much she was eating.

My sister, who has three children of her own, said, ‘if she’s taking a bottle and she doesn’t finish it, maybe she’s full’. I was really confused because everyone kept saying, ‘if she’s hungry, she’s going to eat’. But it was exhausting for her to eat.

Emily was born at a good weight but she declined so quickly. The skin was hanging off her bones. Her head looked so much bigger than her body and the amount of weight she was losing was really scary.

I was feeding her my breast milk through the NG tube and with the specialized bottle, and she just kept throwing up. I thought, is it my breast milk? Am I the reason why she’s not gaining weight?

Having your child wasting away in front of you while not knowing what’s wrong must have been terrifying.

It was awful. We had to go to the doctor’s office once a week to weigh her. I remember holding my breath every time and they’d say, “she lost weight again”. We had to get readmitted to the hospital because she was showing signs of dehydration.

We talked about the gastrostomy (G) tube at this point and for us it was really scary because she’d already been through a couple of major surgeries. Did she really need another one? And another hole in her body? She already has a tracheostomy tube.

Now in hindsight, I wish we had the G-tube from the beginning to avoid all of the hardships that came with the NG tube. But at the time it felt like we were taking a huge step backwards.

What happened once the G-tube went in?

Emily’s recovery was very quick, but then there were a ton of other complications that came after that. We were using a feeding pump and we started fortifying my breast milk – adding some formula to help her gain weight. Every single feed, she was still projectile vomiting.

We’d tried everything to prevent it, like feeding her in an upright position and elevating her bed. We were venting her as well and it just wasn’t working. We went to only formula because I was so stressed out that I couldn’t produce breast milk anymore. Even still, the vomiting just continued.

It wasn’t until she was six months old that I started hearing about blended feeds. I tried talking to my medical team about switching her and they were not supportive. They put her on medication to help with her reflux, but she was still vomiting every day.

Thankfully, I had a social worker and she made me feel really validated in my concerns. Using her connections she found another mum whose daughter was a couple of months older than Emily and had switched to a full blended diet.

My social worker said, “let me connect you to this mum and you guys can talk it out.” And we did. As wonderful as it is to meet people through social media, there’s just something about that in-person connection and having your children meet. It’s always really cool when kids discover that they have the same medical accessories.

This mum referred me to a wonderful dietitian who supported us in making the transition to blends. It’s something I had to hide from my medical team at the hospital.

Because you were breaking the rules, right?

Yes! I always felt like we had to ask for permission or get approval from someone who knew what the right answer was. And then I learnt that they were comparing Emily to a textbook where they got their information. The real resources are the parents who are doing it. That’s where the community has really helped us.

Our dietitian helped me slowly introduce blends into Emily’s formula, one ingredient at a time, and we quickly saw a decline in her vomiting. I was terrified to switch to syringe feeding, but once I did, we never went back to our feeding pump.

Then I started seeing dietitian Claire Kariya’s blend recipes on Instagram. I started really simple and blended Emily some toast with peanut butter and jam with milk. It felt so special to be able to do that. To not be so strict about having specific ingredients and food groups. To just pick meals that I know my nieces and nephews were having and feed her that way.

You say Emily’s vomiting decreased with the blends, what happened with her weight?

That’s still something I’m dealing with. Her medical team stresses me out about it, because they weigh her at each appointment. Their obsession with her weight gave me an obsession with her weight. The last in-person appointment we had with them was around two years ago now and she’d lost weight. At this point we’d weaned her off most of her tube feeds. Her cleft palate was repaired, which helped with her oral eating.

The doctors couldn’t understand her weight loss because her colour looked good. She was communicating really well, she was bright and expressive. She didn’t match that number on the scale. They were questioning it to the point that they were weighing themselves to make sure the scale wasn’t broken. They allocated us a dietitian who would come and see us every week and weigh her. They said that if she didn’t start gaining, we’d have to go back to the tube-feeds.

Thankfully, that dietitian was very supportive of us and our choices. I told him that we might have to start tube- feeding again and he said, “no, we will modify what she’s eating”. We’re not moving backwards, is what he said. That’s not what we’re going to do.

Nowadays I track Emily’s growth by how her clothes fit. Eventually I just told myself, don’t weigh her anymore. I still think about it a lot, but I don’t put her on the scale anymore.

That sounds like some solid sanity-preservation right there. So Emily is feeding orally now?

She is. We still have to make some adjustments – like cutting her food up really small – and she does take a long time to eat. But from the get-go, she has had a huge interest in eating. We do have the G-tube still placed for medication and vitamins. And if ever we’re thinking she didn’t eat enough and we need to supplement for that day, especially if she’s sick, we’ll use it as well. I’m kind of scared of the day coming when our team says she can get rid of it.

By the time this magazine comes out you’ll have welcomed your second child. How are you feeling about heading back into newborn territory?

Kind of terrified. I don’t know if our next child is going to have any medical needs, but in any case, I won’t know how to navigate being a new mum again because our first experience was so different.

Having said that, I can take what we’ve learnt over these last few years and I’ll know that everything will be OK. I just wish that I could go back in time and tell new-mum me that everything is going to work out, one way or another. It’s still really, really hard, but we’re happy. Emily’s happy.

A little (and very exciting) update from Nina since she was interviewed for this story: “Emily’s feeding tube broke and we didn’t have a spare so we made the decision to leave it out. Her doctor had been so happy with her progress that we felt comfortable making this decision. So far, she’s been doing well without it. And we had a baby boy!”

Tubie Truths