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Naso-gastric feeding comes to an end
Baby Food Hints/Tips
Member Name: CrazyEgg
Baby Food Hints/Tips
Thank you to all those Dooyooers who sent positive vibes to Baby CrazyEgg over the Christmas period! This is a little update for you. If however, your baby is fed by nasogastric tube and you have found this page in a search for an experience similar to your own, then I hope this helps in some way.
For those of you who do not know what I am talking about, Baby CrazyEgg embarked on a great experiment on 11th December 2012. She had been fed via nasogastric tube since her premature birth in May 2011 at 26 weeks, when she weighed 599g, or 1lb 5oz. From the time she came home in December 2011 she continued to be fed by nasogastric tube, and with the support of a dietitian and speech therapist we worked toward the goal of feeding orally- 'normally' I suppose I should say. On 11th December Baby CrazyEgg pulled her NG tube out for the final time, and after a few bumpy, anxious days began feeding herself sufficiently: the tube is gone, never to return, and I have spent this morning packing up our remaining supplies of nasogastric tubes, syringes, tape, pH strips etc so that they can be used elsewhere.
So, there can be an end to nasogastric feeding. And gastrostomy can be avoided, although I understand that in some cases it may be the best option. It was muted last year as something we "might perhaps have to discuss if no progress is made in the next few months". I was very thankful that Baby CrazyEgg did make progress and so avoided having this operation. And I learned that different parts of the country have different policies concerning gastrostomy, and had we lived elsewhere would most likely have been advised to have this procedure after 16 weeks of tube feeding. Presumably there are good reasons for this, NG tubes can cause stomach irritation, they can promote reflux, they come out, they are a nuisance! Nevertheless, it does make me a bit twitchy knowing that this could have been the case, when Baby has now shown that she can eat and drink for herself.
Baby CrazyEgg did not really understand what was going on the day the tube came out for the last time. I explained that we were going to try without it of course, but I don't think it meant much. By this time Baby CrazyEgg had demonstrated that she could eat and drink safely. After she had eaten puree or porridge we would do a tube feed of her formula. Initially this was Neocate, as she had a suspected intolerance of cow's milk protein and then latterly it changed to Paediasure Peptide, as she seemed to be developing tolerance. This was fortuitous since Neocate tastes disgusting and Paediasure Peptide is much more palatable. I had expressed concern that if we tried to get Baby to drink Neocate we would undo all our progress: one of the setbacks we had last year was after we were advised to let her suck the formula off our fingers. Pursed lips and retching followed, and once I had a taste of it I could empathise.
Under the dietician's guidance we had steadily reduced the formula to encourage Baby to eat more. It had seemed to work, but there was little drinking going on. In order to encourage this we felt it was time to take the plunge and see if Baby would drink for herself if formula was not pumped into her stomach every few hours.
By the end of the first day I knew that Baby CrazyEgg had not eaten or drunk nearly enough. She was very tired the next morning and out of sorts. With encouragement however she drank 50mls of her formula from a cup. This was the greatest amount she had ever drunk, her previous record being 20mls. During the rest of the day she ate well, but drank little. We had an aim of 660 calories to be ingested, and this was not quite met but we were not far off. Nappies had been wet quite regularly up to this point, but not to their normal extent. We had been advised to keep a check on nappies in case Baby was getting dehydrated. By the end of the second day a lack of wee was my main concern, and this was heightened by an only very slightly wet nappy on the third morning. This third morning brought other concerns as Baby started with a cold. It seemed that the tube would have to go back. I resolved to make a decision at lunch time. Rather than waiting to offer Baby a drink at a set time I had a cup within reach whilst she played during the morning. Amazingly, she crawled over and sipped from the cup many times during the morning, drinking a total of 80mls. So I held off on the tube going back.
Over the weekend Baby's cold developed with us having to call the Rapid Response physiotherapist for advice and then a visit. This was a service we had only just been signed up for, and it is fantastic. The aim is to keep Baby out of hospital, and to manage respiratory problems at home. We ended up having one night in hospital as a precaution, and it was very nerve-wracking at home listening for 'wheezes' and 'rattles' in her chest and wondering if she was getting better or worse, but I am more confident now. Anyway, despite the cold Baby continued to eat well and drink well provided a drink was always available for multiple tiny sips.
After 5 days, with the tube out and as a result of the illness, Baby CrazyEgg had lost 300g. She is tiny anyway and this was a noticeable weight loss with her ribs beginning to be clearly visible. As you can imagine, we were concerned and discussed this with the dietitian. We had kept a food diary which the dietitian analysed and on the basis of this advised us to continue. The weight loss was within the expected parameter. So we continued, and with the cold ebbing away and her appetite increasing Baby CrazyEgg has shown herself to have a very healthy love of food, still puree, but real food nonetheless: porridge, fruit, casserole, Sunday roasts, chocolate pudding and even some dairy foods have gone down well with no adverse reaction!
The next weighing is Thursday, but it is apparent from looking at her that she has put on weight. Her ribs are no longer so obvious, her thighs are chunkier, her cheeks chubbier. AND she has a few more teeth with which to chew. Yum! Yum!
Thank you again for all your support!
Summary: Nasogastric feeding can be a temporary situation