So I thought I'd start off the entries with a topic that I always seem to be asked questions about... How do we feed Jakob and what do you feed him? Jakob's history of aspiration (fluid traveling in the lungs) and issues around feeding have meant that he has had a number of different medical interventions used to get the required fluids and food into his body. Today I've shared about the types of tube feeding he has had, how we came to have to use them and what the journey has been like for me. Keep in mind that I am not a doctor and this is my take (as Jakob's mum) on his experiences (and ours) with feeding. I hope that you find the post to be informative.
NG-Tube
 Going for a walk. The NG-tube tucked away so that he can't pull on it as easily | A Nasogastric tube ( NG-tube) is basically a tube that runs through the nostril, down the oesophagus and into the stomach. Jakob had one of these when he was first born as his suck reflex wasn't very strong. Then from about 3 months of age until about 11 months of age, he again used one. This was due to him being unable to swallow correctly, allowing the milk to travel into his lungs. It's a little unusual to have a NG-tube for that length of time but it worked for Jakob initially. By using the tube, it removed the need for swallowing/drinking, reducing the risk of aspiration and lung damage. I was taught to measure, insert and change the NG-tube so that it could be managed at home. The tube could easily be pulled out by Jakob, and this happened often! He was also allowed to have some food orally at different points, but no fluids. |
NJ- Tube
 Jakob connected to his feed pump and enjoying time with his dad | The Nasojejunal tube (NJ-tube) is very similar to the NG-tube however it travels through the stomach into the jejunum (the middle section of the the small intestine). The tube is quite long. This tube was used for Jakob for about 4-6 weeks , at 11 months of age while he was in hospital. The NJ-tube has to be inserted by medical professionals using the guidance of video equipment to make sure that the tip of the tube enters the correct part of the small intestine. As the tube travels through the stomach it travels through a sphincter (a circular part of muscle that constricts) preventing contents from returning into the stomach once it has reached the small intestine. For Jakob severe 'bottom-up' aspiration had also become an issue. He had reached a very critical point with his lungs not functioning and chronic lung disease being present. He had severe reflux, where the fluid would travel from the stomach back up into the oesophagus and then into his lungs, causing lots of damage. So by having an NJ-tube the milk would empty into the small intestine and not be able to travel back up into the stomach due to the sphincter, reducing possible 'bottom-up aspiration'. At this point all oral feeding was again stopped to prevent any possbile 'top-down' aspiration (the food traveling into his lungs while he was eating/swallowing). |
PEG Tube At 14 months of age Jakob had a procedure called a fundoplication and a percutaneous endoscopic gastrostomy (PEG) tube inserted. The fundoplication consists of wrapping the top upper right hand section of the stomach called the fundus around the base of the esophagus to create a wrap/tightening which aims to prevent stomach contents from traveling back up the oesophagus. The PEG tube is inserted through a hole made in the abdomen and into the stomach. The tube is held in place with a balloon or other device internally. Once healed, the tube can then be used to feed through. For Jakob the tube was taken out and a low profile MIC-KEY button was inserted. The button has a little tube and once inserted into the stomach a small balloon is inflated to keep it in place. This makes the tube less obvious under clothing. I have learned to change the MIC-KEY at home so that we don't have to make special trips to hospital to have it changed or in case it is pulled out accidentally. We still use this at present. |  Jakob enjoying Christmas day, about 6 weeks after the surgery for his fundoplication and PEG |
My experiences with tube feeding....
As Jakob's mum I spent a lot of time reading about the types of enteral (tube) feeding and trying to learn as much as I could to ensure we were making the right decisions for Jakob. Some of our experiences have been good, some not so good. At the beginning it was incredibly difficult to have a newborn who was being fed through a tube and to have to battle to get both breastfeeding and bottle feeding established. It is not part of the image you carry in your mind when you think about feeding your newborn and being a mum!
By the time he reached the age of 3 months I couldn't wait to have that NG-tube back in, the feeling of relief was enormous. It was a complete turn around in my thinking. He had reached a point that he was so incredibly scary to feed via bottle and the distress it caused him was horrible. His dad had stopped wanting to do any bottle feeds (I completely understood why), the only other person that would attempt to feed him other than me was his grandmother. The tube was going to be my back up plan, a life line in case I couldn't get him to feed or it caused him too much distress when we got home again. However, after he had to be taken to the Royal Children's Hospital and eventually became more medically stable it was again extremely distressing to be told we couldn't bottle feed him at all for the time being. We had tried with the supervision and support of his speech pathologist but the doctors decided it was too dangerous. The feeling of being powerless in your child's care, and having decisions taken away as a mum is gut wrenching.
This experience probably set the tone for Jakob's next two years, trying constantly to get the balance right between safety and helping him to have normal childhood feeding experiences. We did manage to get Jakob onto pureed oral food for a number of months, it just couldn't be runny or too chewy. This fell apart when he became extremely unwell and his respiratory function became too poor. I had personally wanted to avoid the NJ-tube and fundoplication and Jakob's dad and I discussed the options a lot. We had agreed to just the PEG tube but when Jakob's lung partially collapsed, all other options went out the window. The conversation I had that day with the respiratory physician is still crystal clear in my mind and to be told if Jakob remained the way he was, he would eventually die because of his lungs was a sobering experience. I'm guessing I will probably never forgot that conversation. It was after this that all oral food or tastes were stopped and a NJ-tube was used in the weeks leading up to Jakob's surgery for his fundoplication and PEG. I had pretty mixed feelings about this and it was particularly hard because Jakob missed his food a lot and he was teething as well.
It has been a really hard and tiring journey with tube feeding. I am happy to say though that the last 6 months have been much better and he has made some pretty exciting progress. We have just had the go ahead from his team to move away from tube feeding and to focus on his oral foods and introducing fluids (for the first time since he was 3 months old)! I'll talk a bit more about this in my next post when I share with you information about the foods, formula and blended diet Jakob has used.
Thanks for reading and learning a bit about how Jakob has got to where he is today with his feeding, and about my experiences as his mum!
Dani x
By the time he reached the age of 3 months I couldn't wait to have that NG-tube back in, the feeling of relief was enormous. It was a complete turn around in my thinking. He had reached a point that he was so incredibly scary to feed via bottle and the distress it caused him was horrible. His dad had stopped wanting to do any bottle feeds (I completely understood why), the only other person that would attempt to feed him other than me was his grandmother. The tube was going to be my back up plan, a life line in case I couldn't get him to feed or it caused him too much distress when we got home again. However, after he had to be taken to the Royal Children's Hospital and eventually became more medically stable it was again extremely distressing to be told we couldn't bottle feed him at all for the time being. We had tried with the supervision and support of his speech pathologist but the doctors decided it was too dangerous. The feeling of being powerless in your child's care, and having decisions taken away as a mum is gut wrenching.
This experience probably set the tone for Jakob's next two years, trying constantly to get the balance right between safety and helping him to have normal childhood feeding experiences. We did manage to get Jakob onto pureed oral food for a number of months, it just couldn't be runny or too chewy. This fell apart when he became extremely unwell and his respiratory function became too poor. I had personally wanted to avoid the NJ-tube and fundoplication and Jakob's dad and I discussed the options a lot. We had agreed to just the PEG tube but when Jakob's lung partially collapsed, all other options went out the window. The conversation I had that day with the respiratory physician is still crystal clear in my mind and to be told if Jakob remained the way he was, he would eventually die because of his lungs was a sobering experience. I'm guessing I will probably never forgot that conversation. It was after this that all oral food or tastes were stopped and a NJ-tube was used in the weeks leading up to Jakob's surgery for his fundoplication and PEG. I had pretty mixed feelings about this and it was particularly hard because Jakob missed his food a lot and he was teething as well.
It has been a really hard and tiring journey with tube feeding. I am happy to say though that the last 6 months have been much better and he has made some pretty exciting progress. We have just had the go ahead from his team to move away from tube feeding and to focus on his oral foods and introducing fluids (for the first time since he was 3 months old)! I'll talk a bit more about this in my next post when I share with you information about the foods, formula and blended diet Jakob has used.
Thanks for reading and learning a bit about how Jakob has got to where he is today with his feeding, and about my experiences as his mum!
Dani x
RSS Feed
