The Dietitian

Having a dietitian can sometimes fell like butting heads a lot of the time, this is what it was like with me and Laura for the first few months but we eventually got there and our weekly up dates became more like chat's and a catch up with a friend.

When we left the hospital Ruaidhri had been on normal baby milk SMA gold, that wasn't to last for too  long while Laura tried to work out what was causing the sickness.  Because we would have to monitor Ruaidhri weight at the start 3 times a week it was becoming clear that he was loosing weight, the sickness was taken a lot out of him. So it was bye SMA hello infatrini high calorie milk.  It came in little glass bottles and looked like condensed milk, smelt much the same as normal baby milk.  So this would help him put back on the weight that he had been loosing. So weight gain was starting to happen sickness wasn't going, it was now every feed either during or after the feed.  So maybe it was reflux so Laura had suggested using baby gavinscone this would thicken his milk as well as settle his stomach, but after only a few days we had to knock that on the head as it had turn the milk too thick and it was taken double the time to go down his tube and would often block it up.

After two months it was time to change his milk again, Laura thought maybe he had an intolerance to milk so she changed it to Infatrini Peptisorb which stank.  It smelt like the bacon frazzles you get in the shops, but oooh my on the way up it melt like old chip fat, as far as the milks go that was probably the worst, and it you got it on your clothes you would have to change as you would smell it all day and as the day went on it would get stronger.  Sickness never improved time for a change after 6 weeks.

Time to say hello to Neocate, Laura was hopeful that this would work, it covered all allergies and was as broken down as baby milk could get, she had used it on other babies and it had worked.  Ruaidhri had other ideas on this.  Because it was so broken down it was like water, and would come up like water. Because it was too thin we would get a milk thickener which might work.  After 4 weeks he was loosing weight and still being sick.  We needed a new plan.

Laura would ring every Monday and we would ask about his weight and what volumes he was on what he was able to tolerate (which was nothing) how many vomits he had, had and we would try a new plan.  After changing milk 4 times it was time to stand my ground and tell her it was time to go back to Infatrini as it didn't matter what milk he was given or how many milk thickeners he was still going to be sick, but with this milk at least he would put weight on.  She agreed although there was an age limit on it and due to the changes of milk we wouldn't have too much longer on this.  It was ok though as there was an Infatrini that was for older babies, great I thought we are now getting somewhere.  The bigger he got the more calories he would need and the next stage milk had the same calories as the baby one so he would need a calorie powder to help with weight gain and calories.  This plan would work the only down side was it all had to be delivered and would come in boxes so again we would have storage problems, the older he got the milk went from little glass bottles, to bigger plastic ones to 500ml plastic bags.

Ruaidhri was at the age where had he been bottle fed we would be trying him in solids, so we thought why not.  What should have been a fun time experimenting with foods finding out what he liked and didn't like, which would have work should he actually want to hold the food.  He had no interest in holding food and would back away from it, yogurts where a no go as he would gag and make himself sick.  It was starting to stress me out, how can something so simple like feeding your child be so hard, he needed food to have energy and to help him grow, so if he had not interest in eating or drinking how was this going to happen.  He was too clever for his own good, you could give him a bottle empty and he would suck the top of it put a small amount of water in it and it would be chucked on the floor or at you. I think we must have tried everything to get him to try and eat, he would like to suck his sick blankets so I would dip them in yogurt and he would move it to a bit with no yogurt.  The more tricks we tried the more wise he came to them.  In the end we would just sit him in his high chair every meal time and give him what ever we would have. It took him until he was 11 months before he would touch food, and with that he was fussy about what food he would touch, jelly was a no go he would freak out if you gave him that he wouldn't play with it like other children might he would tip the jelly out and chew on the bowl.  I was really starting to think that he would never eat, then we got hit with the fact that it was looking like we would have to face the fact that he would be tube fed up to about the age of 4.  Wow we had gone from being told it was short term to long term, but we wouldn't give up.

The day he sucked the middle out of a chip you would have thought we had won the lottery, so straight on the phone to Laura, she was happy it was progress, so there was a new plan, the new plan was nothing just given him the same as poppy and if he touch it, licked it, swallowed it, it was still all good it didn't even have to be that healthy as long as he enjoyed it and took to it. Knowing this took the a lot of the stress out of meal times.  Some day's I could feel myself wanting to burst into tears and will him to eat something, this was a task that I had taken for granted.  I never thought feeding your child would ever be an issue why would it, it was his heart that was the problem.  Although that was true no one told us of all the other knock on effects that would come with this.

Once I had stopped stressing and just gave him the food and if he ate it he ate it, I stopped keeping notes of milk volumes, how many times he had been sick, how many times a day he would eat something or gag he started to enjoy food more as well.  It is true that they say kids pick up on stress, but once we had got into the frame of mind that we would let him lead it all seem to make life easier for everyone all round.  Even Poppy would share her food with him and she would sit next to him and show him that food was tasty and how to enjoy it.

I told Laura that we would keep in touch once a month to see how he was doing and we even agreed that his weight should be done once a month, this was a massive step and took the pressure off no end.  It really is amazing how easier you become hooked and obsessed with numbers and volumes, i kid you not I had a diary that I would write everything in and keep notes of everything, even down to how many dry and wet nappies he had, had.  I would take pictures of his sick when there was blood spots in it, should his poo change colour or for whatever reason was solid(which never happened very often) I would take notes and yes a photo.  You might think this is crazy behaviour but this is what you get told to do.  You make it a task that must be done right down to the letter or number.  It got so bad that I would try and measure how much he had been sick, the lengths you go to to make sure your child is where they should be and the weight that they need to be for surgery are unreal.

I once asked Laura why they all made such a big thing about weight and volume and it was simple they would have to be well and of a certain weight too be able to be ready to go for surgery as and when, yes we were given a rough time line but things change children change and we had to be ready and he had to be weight happy.  There has to be a way to get the message across to parents with out added to the crazy and adding the pressure.
  I would hate weight in day sometimes his weight wouldn't move and this was just as bad a a loss to me, it would mean that something needs to change so we would look back on how he had been had he had a growth spurt, had he been unwell was he more active, we were constantly trying to find reasons and answers.

Once Lee and I decided to not be so up tight about the volumes and weights and Laura was happy for us to do it our way it was better for us all round.  We started to enjoy our family meals times better and Poppy snack time, there had to be more to life than numbers....