Meal times

A friend of Samuel’s, Little H (his mum blogs at Little Mamma Said), will be having his gastrostomy operation tomorrow and it got me thinking about when Samuel had his operation and was finally able to get rid of the NG tube.

Samuel has never taken food orally. On his first day of life we were in postnatal with the scarily enthusiastic midwives thrusting him on my breast every five minutes. Samuel wasn’t having any of it. Literally. He would either get agitated and upset or go to sleep. Then on his second day of life we found ourselves in NICU. The (male) Consultants (who were lovely I must add) would say, ‘lets try him on the breast today’. We’d try but have the usual result. Sleep or agitated and crying. But then as days passed and they realised that his seizures were more serious than they’d thought, they started to sedate him more and I was just left to express milk.

As time went on Samuel continued to be sedated so breast-feeding, any kind of feeding other than NG tube feeding, was a no no. He was finally brought out of sedation and I started to ask about whether we could try oral feeding again. Problem was, by this time they needed the Speech and Language Therapist to come over and assess him before they gave him anything orally. But she was the only person in that role and she worked part-time. So we had to wait several days for her to come over and when she did, more often than not, Sam was sleeping, having a seizure or just not performing with his dummy.

The ridiculous thing is on his notes it says something like that he has a poor swallow. But that is simply not the case. Samuel has never once needed suction because of a poor swallow and excess saliva. He has always swallowed his saliva. He only dribbles very occasionally when he is teething or had a big seizure.

But we carried on feeding him via his NG tube and was delighted when in June last year (2011) he had an operation to have a gastrostomy button put in. It was the first operation he had ever had and he was absolutely miserable when he came around from the anesthetic. He was very sore and uncomfortable and he was having increased seizure activity, so our old friend Midazolam did make an appearance. I was also nervous about picking up him to cuddle him as I was so afraid of knocking his new button. But within a few days I was much more confident and before long he was back to having lots of tummy time.

Having the gastrostomy and getting rid of Samuel’s NG tube had so many benefits. I no longer had to pass a tube up his nose and down his throat which wasn’t pleasant for either Sam or I. The tube would be pulled out accidentally a number of times. The tape we had to use to stick the tube to the side of his face, would really aggravate his skin and he would always have a big sore red patch on his face when I’d removed the tape. We also of course got looks and questions too when out in public (by strangers). We were often asked how premature he was (he wasn’t, he was born full-term).

All medicines are given via syringe through Sam’s gastrostomy button on his tummy

Having the gastrostomy button now meant we could feed Samuel by a pump which was fantastic. I hated bolus feeding. With bolus feeding, you fill a syringe with feed or water, connect it to the NG tube and gravity takes the liquid down through the tube. However, hold the syringe too high and the fluid goes down too fas. If he gets agitated, cries, has a seizure, the fluid comes all the way back up the tube and syringe. I wasn’t very good at it!

We noticed quite early on that it was much easier to discreetly feed him when out in public (The pump is really simple to use and we have a specially designed bag that we can put the pump and feed in to take out and about and we use it everywhere!). We’d just hook him up to the pump and it takes care of itself. We only really get attention when the pump beeps or when we are attaching or removing the tubes.

I’m not sure whether we will ever get Samuel eating orally. I really wish that in the early days of NICU I’d insisted that we tried him with a bottle instead of trying to breast feed him. He may have had a better chance. Although in the past we have tried him with tasters, it has only been very tiny amounts of food and has been more for sensory than anything else. I’m hoping that once things are more settled with his new diet we can start the sensory tasters again. I’d love him to have that experience in his mouth. When we have to give him Calpol I always give him the syringe afterwards to suck and he does seem to like it. Perhaps because of his global development delay, he may never get the coordination right or not instinctively know what to do, but I’d like us to give it a good try.

This post has been included in the the #definenormal blogging challenge. Pop over to Just Bring The Chocolate to find out more and read other #definenormal posts.

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3 thoughts on “Meal times

  1. Having the gastrostomy made a huge difference to our lives too, no more stares or questions about cancer, and no more pining him down to repass it. Dominic’s gone from being food adversive to having small tastes, so you never know x

  2. My little girl is nearly 14 months old and has had an ng tube since birth. They have now booked her in for a PEG in August. The difference for me is that she can eat orally, just won’t eat enough. She can also take some fluids although she is not efficient and a lot comes out again. The PEG will mean her beautiful face can heal and she can look like other kids. It doesn’t mean I have given up though. We will still be trying to feed orally, and I am hopeful that she will eventually have the PEG removed!

  3. Pingback: Meeting with Dr H | Tricky Customer

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