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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FAQs

I was reading Little Mamma said‘s blog post about being asked questions about her son’s condition – well actually in this case she was asked outright ‘what’s wrong with him?’

I’ve been asked that about Sam. It was worse when he had his NG tube in because that was stuck on his face and impossible not to be seen. Now it is really when we are out and pump feeding him or when people (who we may know a little, or don’t know at all) stop and chat to us and notice something might be a bit different with Samuel.

I  know people don’t mean any harm or offense. We, as humans, are just terribly flawed when it comes to putting our foot in it. We say things without thinking. People essentially do mean well. If you are reading this thinking that you might have asked a daft question, please please don’t worry about it. But I do wonder though whether I should have a list ready of frequently asked questions to give to people before they come out with their questions.

An example could be, in no particular order:

Question/Comment: Gosh, isn’t he a big boy? My cousin has just had a big baby too. (This is said a lot, but it is because I have to hold Samuel as if he was a little baby because he is unable to support his own head and neck)  Answer: No, not really, he’s just right length and weight actually. He was only 6lb 4oz when he was born.

Question/Comment: Was he a premature baby? How early was he? Answer: He was full term, well one week short of being bang on full term.

Question/Comment: What’s that? (Said after spotting him being gastrostomy fed) Answer: He is having a feed via his gastrostomy button, it goes straight into his tummy.

Question/Comment: Oh, how bizarre (looking very confused), can’t he eat normally then? Answer: He hasn’t got a reliable swallow so all his feed and medicines go through his gastrostomy button.

Question/Comment: Was very sorry to hear about your baby. We’ve been thinking about you a lot but didn’t want to get in touch as didn’t want to bother you. Answer: No need to feel sorry for us, we have our child that we’ve always wanted and who we love very much. He has brought so much joy into our lives.

Question/Comment: What’s wrong with him?  Answer: He has a rare condition that affects the brain, causes severe epilepsy and global development delay. (It’s a funny question because with strangers or people I don’t know very well, how much detail do I go into? So I just mention the epilepsy and special needs in the hope that is enough to satisfy interest but not boring or scaring them with more info than perhaps they needed!)

Question/Comment: Will he grow out of it? Answer: No, unfortunately not.

Question/Comment: Would an operation help? Can they cure his condition. Answer: No unfortunately not. Samuel is missing a part of his brain & has lissencephaly which refers to the smoothness of his brain. This cannot be repaired or cured.

Question/Comment: I don’t think he likes me/is interested in what’s going on/he looks bored. (This is normally said when someone tries to interact with Sam, but Sam just ignores them)  Answer: (I’m never quite sure what to say here) He isn’t ignoring you really, he has special needs so doesn’t realise that you are chatting to him.

Question/Comment: I heard you were visiting the hospice. I didn’t realise things were that bad. Answer: There are a lot of unknowns with Sam’s condition, particularly as it is very rare. But we do know that he has a life limiting condition and that not only means that he is extremely limited in what he will be able to do, it does also mean that how long we have to enjoy him is very limited too. The hospice offers us great emotional and practical support and respite. They also have fantastic facilities and are great at looking after children like Samuel.

Question/Comment: So will you be having more children? Or when do you think you’ll start trying again for another one? Answer: Err, it’s not quite that straightforward and Sam is only 15 months so we will take our time.
Question/Comment: Does he sleep ok at night? Do you have to stay up with him all  night? Do you get to sleep? Answer: We are lucky in that Sam has a drug called Chloral Hydrate that helps him sleep at night. Doesn’t guarantee he will sleep straight through but helps him settle and gives him more of a night and day. He’s on a feeding pump for 10 hours overnight so is bound to do a massive wee nappy which can disturb him so often get up to do one nappy at night. Much like a lot of ‘normal’ parents I imagine.

Question/Comment: You are very brave. I don’t think my husband and I could cope with a disabled/special needs child.  Answer: Yes you could, you are a parent, you love your child and would do anything for them. You would move heaven and earth to help them. We are just like any other good parents who love their child.

Question/Comment: Is it ok to give him a cuddle? Do I need to hold him a special way? I wont hurt him will I? Answer: Cuddling Sam is just like cuddling a big baby. Just hold him close and if he has a seizure then just hold him tight.

Question/Comment: Oh is he having a little laugh? Answer: No, unfortunately he’s just about to have a seizure.

Maybe I should just give them a link to my blog post about how damn perfect my boy is.

Other random comments we get:

  • Oh my goodness aren’t his eyelashes amazing, why do boys always get stunning eyelashes?!
  • You would never tell anything was wrong with him when he is calm. He just looks so perfect.
  • My friends step-son has Downs Syndrome.
  • Could I have a cuddle with Sam please as I’ve had a stressful day and need a Samuel cuddle to relax me.
  • (Stranger looking at him snoozing or calm in his buggy, normally said when we are in a lift) Ah, sometimes you just want to keep them little like that. Enjoy the peace while you can as they grow up quick and will be running around causing havoc in no time. (My dream would be for Sam to be running around causing havoc!)
But one of my favourite things said to me recently by a stranger has to be, ‘I have to tell you that I think your baby is one of the most beautiful little creatures I’ve ever seen’.
If this post sounds all too familier to you, Kate from The life and Times of Team Kitchen blog wrote a great poem called Staring. Pop over and have a nosey.