What it means to tube feed my child

Feeding Tube Awareness Week is February 6 – 10 so I thought I would write about my experience with tube feeding. I knew nothing about feeding tubes or that they ever existed until we had Piper.

Did you know there are five types of feeding tubes;

Nasogastric (NG) Tubes – These tubes enter the nose and feed into the stomach.

Nasoduodenal (ND) Tubes –  Like NG-tubes, ND-tubes enter through the nose, but they extend into the beginning of the small intestine, the duodenum.

Nasojejunal (NJ) Tubes –  NJ-tubes are almost identical to ND-tubes, except they extend a little bit further into the small intestine. Feedings end up in the jejunum.

Gastric or Gastrostomy (G) Tubes – G-tubes are the most common type of feeding tubes. They are placed surgically or endoscopically directly through the skin and into the stomach.

Gastrojejunal (GJ) or Transjejunal Tubes – GJ-tubes are very similar to G-tubes in that they enter the stomach directly through the skin using the same site or stoma as a G-tube. Most have two feeding ports, one into the stomach, and a second tube that extends into the small intestine. The longer internal tube allows feeding directly into the intestine for children and adults who cannot tolerate gastric feeds.

Jejunal (J) Tubes –  J-tubes are tubes that are directly placed into the small intestine.

In America tens of thousands of kids require feeding tubes for many medical reasons. I know in Western Australia where we live there are only around 30ish children that are PEG (Percutaneous endoscopic gastrostomy) fed, other types of NG tubes though but I don’t know how many.

By day 3 of life, our daughter Piper had her NG tube put in, before we were even aware of what was going on. This then continued for 9 months. Changing the tube every 1-2 weeks, peeling the tape off her soft little skin then sticking it back on.

Every time we connected her to the feeding pump or did a feed we had to lay her down, withdraw from the syringe to draw up tummy acid to then test with with a PH strip, check what colour it is and make sure its not black meaning the tube is in her lungs (this happened to us once, and it’s not a nice experience). Every time to make sure the placement is right.

After 9 months we transitioned to a G tube, surgery to insert a hole for a permanent one. This was held in for 3 months that we had to turn 3 times a day to help the hole stay open and then another surgery to replace it with a mickey button, which is now held in by an inflated balloon in her stomach. This can be pulled out and replaced. We have to check the water in the balloon regularly to make sure it has enough water in it, and we have changed the button over once ourselves (you can literally see into her tummy through the hole) It’s such a simple concept. It’s pretty amazing.

Having a feeding pump is a love hate relationship, the easiness of letting a pump feed her. But then being awoken sometimes several times a night by a beeping pump “feed error” “clog down the line” “hold error”.  Sometimes you go back to sleep with the beeping sound ringing in your ears, confused if it is actually going off or if it is all in your head? Making sure you remember to clamp the tube, then unclamp while you push the medicine down, then clamp it again, flush it, clamp again and definitely do not forget to unclamp again before you click run on the pump, because then its like an erupting volcano. On many occasions this has happened to us, and the pump has still run while the tube is clamped and the pressure has eventually pushed the tube out and it has now fed the bed and not Piper. I can assure you this is not a nice thing to go into in the middle of the night, it is not a nice smell, it is not a nice routine to clean up while your half dazed, not sure if it’s a dream or not.

When Piper started on the feeding pump at 6 weeks old she could only handle a volume rate of 25ml an hour and even this small amount she still severely refluxed throughout the day and night, requiring suctioning. Fast forward to now almost age 2 she can tolerate a volume of 180ml pushed through a syringe in one feed, and over 100ml an hour from the pump overnight for a few hours, an incredible improvement.

The G tube requires cleaning 2 times a day with cream. She now receives 6 feeds a day, “tubie time” we call it, each time priming the tube (using a syringe with water and fill the tube before connecting it to the stomach so air doesn’t go in), making the feed (we do a real food blended diet so we blend healthy food every second day), pushing it through, flushing with water after then detaching from the mickey button and then thoroughly cleaning it all when it’s finished. Repeat 6 times a day, 7 days a week.  I never thought I’d still be washing bottles 2 years later, and most likely for years to come.

The reason for Piper’s feeding tube is because she has 22q11.2 deletion syndrome, one of the characteristics that presented in Piper is her severe feeding difficulties known as dysphagia. She had a laryngeal cleft repaired at 5 weeks old and has an unrepaired sub mucous cleft in the roof of her mouth. Her whole airway and throat is abnormal. She has low muscle tone and a smaller jaw. Piper has difficulties with jaw stabilization in addition to difficulties coordinating lip and tongue movements for eating and drinking. She used to aspirate on everything (going into her lungs,) where now we are unsure if sometimes she still silently aspirates or doesn’t. So there are a lot of factors to why Piper is unable to eat and drink by mouth.

About 10 weeks ago we decided to make the decision to do a real food blenderised diet for Piper. Meaning using real food (vegetables, fruit, meat all the things we eat orally) and blend them up to put them through the tube. The thought of Piper being on formula for the rest of her life, well until she can eat via mouth is a scary feeling. There are so many factors to consider, especially when your medical team at the hospital do not support a blended diet, but the down side to formula, the sugar and bad toxins and so many other things. I mean if you had your child that can eat orally and gave them a diet on only formula I can assure you the results wouldn’t be good. So with lots of research we made the decision to wean Piper off formula. We saw some wonderful changes with Piper, her hair started growing, she gained more colour in her skin, she started sleeping through the night. Unfortunately, 8 weeks in and Piper lost a significant amount of weight. Despite the no support from our medical team we are in the process of adding more calories to her diet and are believing she will gain this weight back on.

Its such a hard battle when you have to consider all these things. We want the best possible outcome for her and help her grow and develop the best way she can but also in the safest way possible. I felt like such a horrible mum when she lost all this weight, you could see all her little ribs. I felt like I was doing the right thing by giving her this healthy diet yet she was shrinking away right before my eyes. But I stand firm on our decision and she is slowly starting to put the weight back on. I have read some wonderful reports of parents all over the world that are giving their tube fed children a blended diet and how greatly it has impacted them, and I know once we get the balance right Piper too will improve.

We never want Piper to be ashamed of her feeing tube, so we make it as normal as possible, whatever normal is.

I must admit, my biggest struggle is Piper’s feeding. You can’t really explain it to someone that has a child that drinks and eats. But it’s painful, it’s gut wrenching. The hardest part is when Piper’s eyes light up when we give her the small teaspoons of puree she’s allowed, and when she cracks it once we have to say all finished, or when she opens her mouth so wide as she watches us eat, all I want to do is hand her something.

When my friends and family have babies, I see them experience things that I never was able to do, everything I ever wanted, and a deep part of my heart aches so bad that I cry myself to sleep.

When I see other children eating at cafes, or parties, or church, or play dates, at gatherings or just around me wherever I go I’m forever reminded of what my daughter isn’t able to do.

When we are up at an unearthly hour every second day blending food. When each meal time we are pushing a syringe full of food into our daughter’s tummy. Wondering why we have to do this? Why is this our life?

But this feeding tube, even though I wish things were different, well it is keeping Piper alive. She wouldn’t survive without it and for that I’m forever thankful.

I’m thankful that my eyes have been opened to the many thousands of other mums that understand on some level how I feel and what I go through.

I’m thankful that this enables us to give Piper a really healthy diet that not many 2 year olds would have.

I’m thankful to be Piper’s mum.

But most of all, I’m thankful in the midst of all this suffering I have God.

“We are confident that as you share in our sufferings, you will also share in the comfort God gives us”
– 2 Corinthians 1:7