Following their Lead

They say parenthood is a dance determined by our children. And once Grecian Martin started taking cues from her daughter, tube-feeding became the hero of their family’s story. Here, the Albany-based content creator and mother of four retraces their steps to success.

When and why did tube-feeding first come into your life?

So Riley, who is six, is my tubie. She’s a 25-week, twin premmie who was born at 515g. The first time we were introduced to tube-feeding was when Riley and her twin sister, Hanna, were in the NICU for the first few months of their lives.

Both of them did really well, coming home on full suck feeds. But as time went on, we noticed Riley was aspirating on her bottles. She had come home on thickened formula with thickener also added to it, but once she started drinking water, we were never told to thicken this.

When she was around two-and-a- half, we fought with the ENT [ear, nose and throat] department at the hospital to check her swallow. Instead, they tried putting Botox in one of the notches in her throat to see if that would help to close over the part that she was aspirating from. For the next two years we were consistently telling ENT that Riley was still aspirating and choking, but they said, “wait six months, wait six months”. It was always, “just wait”.

It wasn’t until our speech therapist picked up that her swallow didn’t sound right that she was put on at least level- one thickener for fluids. Meanwhile, Riley had a horrible winter and stopped eating and drinking altogether. The doctors told us to force water and food into her, which was just horrible, as you can imagine.

How did you get from here to Riley having an NG tube placed?

Our dietitian wrote us a letter to support us in taking her to hospital, in which explained that she was severely malnourished and severely dehydrated. So the NG was inserted then – and what a difference it made from day one. As scary as it was, it was the best decision. We had the NG for 10 months and over this time, ENT finally agreed to do a video fluoroscopy.

Those results were horrible, showing that Riley was silently aspirating on all levels of puree except at level seven. So they finally agreed that the PEG [percutaneous endoscopic gastrostomy] would be a definite thing for Riley and she was booked in. She got her G-tube in May 2023.

Your suspicions were right about Riley’s swallowing. What advice do you have for other parents getting told that force feeding is the solution?

I regret doing it as long as we did – you need to find someone that listens and supports you. Our dietitian told us, “No, don’t do that, because you’re going to create negative associations. You’re going to do more damage than good.”

We went into the hospital with that letter and if we didn’t have that letter, I don’t think they would have listened to us.

I think as parents we have a tendency to second-guess ourselves. Like, do I really need to go into hospital? Is she really that complex? But you know what, these children are that complex and you just need to trust them. Their body is telling you something.

We’re living day-to-day with our kids whereas, often, doctors only see them for those 10 minutes when they’re assessing them in the emergency department. So find someone that listens.

What does tube-feeding look like for Riley these days?

All of her medicines and hydration go through her tube because it’s unsafe for her to swallow liquids. For her first year of tube-feeding she was pretty much just formula fed, which did her wonders, but her oral eating really regressed – especially with the NG in. It’s taken time to get her love of food back and her oral intake varies from day to day.

We never force her to eat but we always offer her food. She mostly just nibbles here and there when she wants to. If she asks specifically for something we’ll make it for her even though she may just lick it or take one bite and then be done. It’s all about that positive exposure to food.

You’ve got four kids. How do you integrate Riley's tube-feeds into family meals?

Sometimes she has her feeds running while we’re all eating at the table. Other times, if she hasn’t eaten anything orally, she has it just after. Our youngest, Maisee, is two and loves helping with Riley’s feeds and meds. And we all sit together, even if Riley isn’t eating.

We’re lucky we can catch up on Riley’s feeds overnight if things don’t go to plan during the day. As long as she gets her calorie intake and hydration, it’s fine. We’ve learned to kind of go with the flow and adjust as we need.

I do hope we can get to the point where we’re on a blended diet instead of the commercial formula. I also hope that her love of food will keep growing. We’ve been told that due to her swallow being a neurological condition, she won’t outgrow it. We don’t think she’ll ever be able to drink water again or anything like that, but keeping that love of food there, that’s my biggest goal.

How do you tube-feed while out and about as a family?

Let me just laugh for a second because, first things first, we don’t really go out very much with four kids – it’s hectic! But occasionally we do try, because I do like having that sense of normality.

When we go out we have a designated bag for Riley with all of her tube-feeding bits, rescue meds for epilepsy, nappies, wipes and other pieces in it. Her backpack from Tubie Fun allows her to tube-feed on the go and we just feed her wherever – literally. Sometimes we’re feeding her in the car boot.

Having Riley’s pump ready to go – primed with the formula in it – is a big help. We always carry extra 60ml syringes as well, just in case the pump fails or Riley needs some water. When the other girls have a drink, she gets one too, so she doesn’t feel left out.

How have your feelings around tube-feeding changed throughout Riley’s journey?

So to start with, I was terrified. What did this mean? How long was it going to last? It brought back a lot of traumatic memories from NICU so, to start with, it was very emotional. Even though we knew it was coming and we knew that she needed it, it was still hard to see her cute little face with the NG taped on to it.

No parent wants to hear that their child is severely malnourished and dehydrated. It made me feel like it was my fault. Like, did I not do enough to prevent this from happening? But seeing how much she’s thriving with the tube, these feelings have changed.

That tube is a life-saver. Not only has she gained her weight back that she initially lost, she now has energy and her body can fight illnesses. She never had any body hair before – her body must have been saving everything to just survive – so now she’s got little hairs above her lip and hair on her arms and legs.

It sounds so funny trying to tell someone that I love the little moustache that she’s grown, but she didn’t have one before and it’s so cute!

We love that you share this kind of stuff with your social media following. How do people tend to react to your tube-feeding related content?

I get lots of messages saying things like “thank you for educating us, we weren’t aware of this whole other side of tube-feeding and the benefits of it”. Because I think it has that stigma where people think it’s just really sick kids – or kids that are severely unwell and are not going to make it – who use feeding tubes. It’s got those negative associations, so I like sharing how beneficial it is.

I’ve also had people reaching out saying that they are a tubie family and they love watching us to get that sense of normality and see that someone else is going through it. And that’s exactly why I started sharing our journey. If I can help one person feel not so alone, then I’ve done my job.

Much of what you post on social media is around body positivity. As Riley gets older, do you worry about how she might feel about her G-tube? Yes, but we just try to be positive about it and focus on why she has it. I was quite worried about bullying because she’s now at school, but her classmates have been really supportive. They’re really interested in it. However, I know this could change by the time she’s eight, her older sister Adelyn’s age.

Lots of kids have little nicknames for their G-tube or NG, which is really cute. Riley’s is called her ‘tummy tube’, and I think that helps.

You also shine a light on our community through your podcast, RAWR. What have you learned from conversations with other tube-feeding families?

That tube- feeding is nothing to be ashamed of. Initially that shock does throw you a bit, but it does become our new normality. Parents will always say that you need to be prepared for anything and everything. You will feed the bed, you will feed the backpack, you will forget to unclip the tube. Everyone does! It will become second nature, so just trust the process.

You’re never alone in this, even though some days it feels like it. It’s so important to find your support network and this may not be in-person support, as we have found. Family and friends won’t understand what you’re going through because they’re not living it every day. So lean on that online support – those families that do understand. Reach out to those who have been there, done this.

Hear more from Grecian on the Tubie Talks podcast, wherever you like to listen to your pods.