Jack’s Feeding Issues

Jack was born on 23/12/08 and from that moment till now we have had ongoing feeding issues.

Due to severe problems at birth jack was taken straight to the neonatal unit and ventilated therefore he was put onto T.P.N. (total parenteral nutrition) and was fed intravenously, bypassing the usual process of eating and digestion. He received all his nutritional nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals this way for a few weeks. I’d been expressing my own milk for a few weeks so at 2weeks they decided to start feeding jack this. They started off by giving him half a ml every hour  but this was proving to be hard as he couldn’t digest so every hour they put it in and an hour later they took it back out again and replaced it with another half ml.  This went on for another week till finally he started to absorb the milk, it was a slow process and slowly as he managed to take more of my milk they reduced the T.P.N.

At 5 weeks jack came off the ventilator onto nasal oxygen and continued to be tube fed. We tried with a bottle and it was a no go as he just choked constantly. Jack was moved to another neonatal unit where we were introduced to speech therapist who helped with jack’s bottle feeding by showing me how to rub his cheeks as i was feeding to help him use his oral muscles. I was trained how to use a feeding pump and how to place his NG feeding tube,  finally after 13 wks jack was allowed home.

Jack was fed every four hours by pump and i continued with the bottle feeding. It was proofing to be so difficult as jack had severe reflux. We changed milks, added thickeners, gave losec, gaviscon and he still continued to throw up all his feeds.  Alongside this he had mastered the art of pulling out his N.G. tube which his dad and i had to keep replacing. It was a nightmare and the bottle feeding was so distressing to both him and me. I felt like we were going round in circles and nobody would listen. We were tripping back and forth to hospitals seeing consultants and dietitians until finally they realized jack might benefit from a gastrostomy tube and hopefully this might cure his bouts of tonsillitis that they reckoned was being caused by his severe reflux!!!

Finally we got a date to get our gastrostomy tube, 24/02/10 almost a year after he was discharged. The operation went well and jack got home after 2 nights, reflux was cured at last no more boking, cleaning up, changing clothes,  we went back 6 weeks later to get our mini button.

Well days later there it was the reflux was back in full force and the poor child was worse than ever again we were tripping back to dieticians and gp and consultants again for another 6mts until we were seen by the surgeon who said jack was in need of a fundoplication, this is an operation where they tie the top of the stomach around it to stop reflux, the waiting list was quite long???

Jack was admitted to Musgrave to have his cast fitted for his scoliosis in dec 2010.  They found this quite challenging as jacks gastrostomy button was placed so high up his body, so they had to adjust it to suit. He was in theatre for 4hrs, it went well and he was allowed home the next day.

We just got on with dealing with jacks reflux until he was admitted to the royal for his fundoplication  on 01/03/2011.   Surgery went well and they managed to move his button further down to allow more room for his cast again.

We stayed in hospital for 5 nights and he was at last free reflux although he had problems with wind so our community nurses set us up with Farrell bags that was attached to his giving sets to allow the wind to flow out with ease into the bag. This seemed to help.

6 weeks after surgery  just when we thought things were turning the corner jack started to wretch and gag. He was having cold sweats and being so distressed.

This went on for days and into weeks, we were beside ourselves with worry.  He was admitted to hospital for monitoring and had bloods done every 10 mins. Jack had got rid of his reflux and in its place came dumping syndrome. His stomach contents were emptying to quickly into his bowel and that was making his sugar levels drop significantly low.  His feeds were changed yet again and his volume levels reduced to 50 ml/ph and extra fats added. This was great and we ploughed on.

Jack has failed to gain any weight in 18mts due to all this and still remains a problem. Things have finally settled although he’s still not getting the required amount, he just can’t tolerate it.

We have started with tasters and they are going well. I sit faithfully every 2hrs and do this and so far it has paid off.  Jack is now able to take a full pot of petite filous. He still pushes my hand away when he sees the spoon coming towards him but through time fingers crossed we hope he will improve. We have an appointment next month to see a gastroenterologist so hopefully he will be able to give us some answers as to why jack remains to have so many feeding problems……