Last month I wrote a little about how we feed Jakob. Today I thought I'd share about what we feed Jakob. What a child eats seems like a pretty simple concept but when you are tube feeding and looking after a child who's body doesn't function in the same way as other children, the process is not so simple.

Ensuring Jakob gets just the right amount of energy into his body has been tricky at times. Jakob is small, he doesn't grow at a typical rate but on the other hand his body, at times, works extremely hard to perform functions we take for granted, like breathing. He has also had issues with tolerating larger volumes in his stomach, which has lead to vomiting and possible aspiration (which I spoke about in my last entry). So what formula/food we give him has had to be small in volume, high in energy (or calorie content) and high in nutritional value.

Jakob spent a long time using formula. As a newborn I tried desperately to breastfeed him. He didn't feed well, taking little breast milk but he did enjoy it. He was supplemented with formula and a little bit of expressed breast milk via the bottle. I struggled with my milk coming in and never had large quantities to express. It was an extremely frustrating experience, one that led to me feeling very much like a failure, even though at a logical level I knew I had done everything in my power to allow Jakob to be breastfed.  I persisted for three months, until he went into hospital for the first time.

At the beginning we used a normal supermarket brand of formula but made it up in slightly different water to formula portions to ensure a higher calorie content and less volume. Initially this was because he was a little premature and small for gestation, then it became about lowering volumes and thinking about the way his body was working. As Jakob reached the normal age for introducing solids, we attempted to introduce thickened purees. A special additional thickener was added to reduce the risk of aspiration. Jakob loved eating and it was disappointing when this had to be stopped. It was at about this point in time hat his formula was also changed to a more specialised formula,  called Nutrini, which ismade by the company Nutricia. This is formula that has been designed to meet all the nutritional needs of children who receive their sole nutritional input through tube feeding. I could spend a long time talking about what I don't like about this formula, but I won't as it has it's purpose and is important, for some it is the only option they have to receive their required nutrition and in many parts of the world it would not even be available, the child would instead die.

Following Jakob's operation for the PEG and fundoplication, we saw a distinct negative change in Jakob's mood, his overall comfort and his interest in oral exploration and taste. He experienced a lot of dry retching, more issues with bowel movements and eventually he began to vomit again, something that the fundoplication was supposed to stop (it isn't uncommon for this to happen, the wrap which is created begins to loosen). The reasons for this are complex and are due to many things, I however personally felt that the fundoplication and formula were the probable cause. By this time I had stumbled across the concept of the blended diet, something that isn't medically supported in Australia but it used by families here, and is used a lot in the U.S.A. It is basically blending foods/ingredients into a fluid like consistency so that is can be pushed down the feeding tube. I read up a lot, explored online communities where other families shared information about how they went about using this a blended diet. A lot of people shared their experiences both negative and positive, but the positive far outweighed the negative. We decided that this is what we were going to try with Jakob. One by one I let Jakob's medical team know (the dietician, the paediatrician, the clinical nutrition doctor, the surgeon, the respiratory physician etc) what our plan was , a little scared of what their responses would be. Although none could officially support me or give advice, none were negative about it and they all respected my decision. With the support of one of his case manager's we were able to gain a financial grant through the SMILE Foundation to purchase the specialised blender we would need. We chose the Blendtec after doing lots of research. They are not cheap and without the grant it wouldn't have been possible to purchase this. We then began blending!

I knew approximately how many calories Jakob needed per day, what volumes he could tolerate and how much fluid he needed for hydration, and I used this to guide what would go into his blends. We included various food types and learned about things that we could add to increase calories or that would help with certain aspects of his body functions. The foods used were endless. We experimented with items like weetbix, quinoa, rice, salmon, tuna, chicken, lentils, chickpeas, various beans, kale, spinach, broccoli, carrot, cauliflower,  strawberries, apples, banana, oranges, macadamia oil, avocado oil, coconut oil, pine nuts, walnuts, cashews, chia seeds, for example. I spoke with his dietician to think about the food groups and particular vitamins that he needed. It was a trial and error process and I quickly learned what worked and didn't work for Jakob's body, what was too hard to blend and what made the blends too thick. We quickly increased the amount of blended food he was having and reduced the formula. In the end he was having 3 blended feeds pushed down the tube each day (using a a large syringe) and a feed of formula in the evening run through his feed pump. We saw huge improvements in Jakob once the blended diet was started. The dry retching ceased. The vomiting ceased. His bowel movements became regular and we could reduce some of the medications he used to assist with this. His skin colour improved. His energy levels increased. Most importantly he was much happier. It was after this diet was started that we saw him become much more medically stable, and more developmental progress made.

One of the most exciting changes we saw was Jakob's interest in food returning. What I mean by this is that he started to explore objects with his mouth again , he enjoyed have different tastes on his dummy and eventually he was interested in what others were eating. When he started to show these signs I began to reintroduce some thickened purees orally, at first it was home made custard. I remember crying with excitement the first time he ate a mouthful of custard again! It had been nearly 12 months since he had had any food orally, and I was very scared that we would be facing a very big uphill battle to get him eating again. I quickly contacted his medical team to let them know what was happening, we always have to proceed with caution with feeding, I got the go ahead to re-introduce tastes using a   spoon, a few mouthfuls here and there throughout the day.

For the last 4 months we have worked very hard on Jakob's eating. Increasing those mouthfuls to small meals, and eventually getting to the point where we could reduce some of the blended diet he was having down the tube. Last month we got the go ahead from his speech pathologist, paediatrician and respiratory physician to move away from using the tube feeds. Jakob can begin to have all his nutritional needs met through him eating! We are so close to this happening. Today he is having 3-4 meals a day which he eats and we are just weaning him off the nighttime formula feed through the pump. He is having lots of textured purees and he is starting to try finger foods (another huge step forward), with signs that he is trying to chew and use his fingers to manipulate the food. Most excitingly we are allowed to introduce fluids, something that he hasn't had orally since he was three months old. He is having little spoonfuls of water after he eats and we are also trying to help him with sipping water. He is still quite unsure about the cup and sipping, but is improving little by little. So for the time being most of the fluids he needs, water and medications, are still being given through his feeding tube, but that's O.K as the steps forward in the last few months have been huge.

If anyone is interested in learning more about the blenderised diet, there is a great website called www.foodfortubies.org and a Facebook page called Blenderized Food For Tubies. You can use the links below.

Thanks for reading! Please remember this is my personal view  and not medical advice.

Dani xx

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.

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