Food, glorious food

I love food. I have always loved food. I love cooking and in my past life when I was able to travel I was happy to explore the culinary world (Yes to silk worms and tree ants in Cambodia. No to a mongoose in Ivory Coast, partly because it was still alive, happily digging a hole and looking very, very cute). I come from a family that loves food and we use food to celebrate, to commiserate, to show love, to socialise.  

So when I was expecting Freya I was already thinking of making my own baby food, introducing her to variety of world cuisines and initiating her to be a member of our food loving clan. I wanted to fully breastfeed in the beginning, so I knew I was jumping the gun a little bit planning my baby’s diet in utero, but, as it happens I am one of those people who are already planning their next meal when they put down the fork. A kind of a rotund bumblebee happily buzzing from one meal of a flower to another.

So Freya came along and it became very clear that this one did not like opening her mouth and could not feed through her mouth. So on her very first day on this earth the medical team put a nasogastric (NG) tube down her nose to feed her. NG tubes are these flimsy little plastic tubes that they stick up your nostril, down your throat to your belly. The milk is then pumped into the stomach either with a little electronic pump or a syringe. They are fairly straightforward to replace and altogether minor things as far as medical stuff is concerned, but I cannot imagine them being particularly comfortable. Nor did Freya think so as she developed variety of cunning techniques to get hers out (8 in a day was her record). 

As we got to know Freya better it became clear feeding orally was not going to be in the cards for some time. Freya had what is called very severe micrognathia (tiny little jaw) and opening special her mouth is neither a natural or a comfortable movement for her. No one even really knows how well does she swallow – with the little jaw there is not much space inside her mouth with her tongue being pushed back. It seems that last winter she had some serious issues dealing with secretions and in absence of a fully functioning swallow the spit and snot trickled down to her little lungs, causing some pretty dramatic dashes to intensive care.

In April this year Freya had a gastrostomy – a tube fitted directly to her stomach. Although drilling a hole to your baby’s stomach does not sound like the nicest thing we welcomed this new tube, after months and months of battling to keep the NG tube in and risking feeding her in her lungs in case it got dislodged.

As with many of these medically complex kiddos weight gain has been always an issue with Freya. She has been frequently ill, with no or reduced feeds, she vomits a lot and uses more calories than a normal baby just to keep breathing.  I expressed breastmilk for her for 14 months but she still needed extra calories, so early on we had dietician input in trying to get our baby nice and fat.

The official line here in the UK is that when your enterally fed baby needs extra nutrition the healthcare professionals will prescribe you medical formula.  There are countless variations from dairy free to amino acid feeds. I admit, I did not like the idea of feeding my child artificial formula so I did my research and from early on was interested in introducing “blended diet” to Freya. Basically you get food, put it in a blender and then push it down the gastrostomy or the NG tube.

Why? My reasoning was that I cannot believe there is a magic liquid that fully provides all our nutritional needs (though a good red wine comes close. I am now talking from personal experience J). Why would all health professionals otherwise bang on about varied diet and eating your veggies to us mouth eaters? Secondly, with a little bit of research I could already discover some pretty scary things about medical formula. The one Freya was given was basically made out of water, maltodextrin, oil and artificial vitamins. For those who have not come across maltodextrin it is basically a dried form of corn syrup, a white sugar derivative.  It has a higher glycaemic index score (indicating specific food’s effect on a person’s blood sugar levels) than sugar, and like white sugar is devoid of all nutrients.  Heavy use has been reported to kill of the good bacteria in your gut, causing variety of digestive disorders. Yum yum love in my tum tum? Not quite. And professionals wanted my sick baby to only eat this? No thank you.

As soon as I started mentioning the words blended and diet I got the distinct feeling I was not going to be making friends amongst the Freya’s dieticians. It appears that the party line is medical formula and the whole question of feeding your child real food is very controversial when we are talking about enterally fed kids or kids with feeding problems. I had my share of “how about if the tube gets blocked” (I have a good blender thank you very much) to “are you sure you will be able meet Freya’s nutritional needs if she is not on medical formula?” (Errr, yes. Have you seen what is in the crap you are proposing that I feed my child?). But overall I think I got off lightly – I have heard of parents who have had their dieticians threatening to report them to social services and for their kids to be taken into care if they insist on feeding them real food instead of medical formula.    

So we have been blending since we got home in July. This is first week of completely off the formula.  I spend hours reading and researching, making bone broths and probiotic pickles. Freya is by far the one who eats the healthiest in our household. Has it made a difference? I think so. She seems more energetic. There is less vomiting. She has more hair. For the first time she indicates she is hungry by bum shuffling over with a syringe in one hand and her gastrostomy in other. Has it been a magic cure to all ailments? No. it is trial and error. It has been harder than I thought. But we are getting there.

Lessons learnt? What you are told by professionals is not always the ultimate and only truth out there and certainly not always best for your child.  Do your reading, but have a healthy dose of scepticism when you do. Dare to go with your gut (it might just benefit your child’s one!).  But do not put unrealistic expectations on yourself or your child.  It is hard enough to have a medically complex child without guilt tripping yourself over feeding them formula or any other reasonable alternative.

…And remember- if the tube gets blocked try flushing it back and forth with water. That has always worked with us.

Are you interested in the blended diet? I am not an expert, but feel free to get in touch. I am happy to share our experience!

 

 

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