Dan has taken to calling them Dipety Doos

We are back to normality. Zack is so much better now and I have had a really good week with him, in fact he's been no trouble whatsoever.

I am starting to discover that Zack is very good at telling me what he doesn't like. He isn't yet smiling so his opinions move from comfortable and content to you'd better stop what you're doing right now and take your hands off me. Take for instance nappy changing, he has now discovered that having this done first thing in the morning isn't such a good idea and tries to push your hands away and kicks you in the stomach at the same time. In fact, he is starting to turn into a spoilt little boy. You know you're in trouble when the frown appears on his face followed by the bottom lip being pushed out. I hope over the next few months he can also express joy and laughter but I think we are a long way from that, so I'll be happy with the contented Zack.

His medication for his epilepsy has increased. It is having an affect but it hasn't cut out his seizures yet. We don't call them seizures in our house, we used to say episodes but now Dan has taken to calling them Dipety Doos, I don't know, maybe it makes them sound less threatening. Every day he comes home from work and asks how many Dipeties Zack's had, I give him a number which in turn gets a worried or an elated reaction depending on how high or low it is. I am starting to think we should use his Dipety Doo numbers as next week's lottery, you never know, we could be sitting on a small fortune.

Zack still isn't on his full dose of his medicine, in fact we are only half way toward the full dose. The epilepsy nurse seems to think that it's good that he is responding to the medicine and that the episodes are decreasing, however she wants him to be seizure free so we still have a way to go in getting them under control. The good news is we are heading in the right direction.

We went to the feeding clinic the other day. Zack had his usual way in and length measurements, I give up with being interested in the curve in the red book now, I am sick of looking at plots and graphs. Zack is putting on weight and he is growing and that's all that is important. Stuff the chart. We mentioned to the Speech and Language therapist that Zack has been a bit disinterested in his water of late. She suggested we leave him be with trying it for three months so he doesn't get an aversion to it all. Dan went on to tell her how he has been waking up for food and that when he was in hospital after his operation he was so thirsty that he sucked all the water off a gauze. She wasn't sure whether to send him for a video fluroscopy. This will show us where the fluid is going when Zack swallows so we can check it is going the right way and not into his lungs. By the end of the session we agreed that we would try him on solid food in 8 weeks time. I'm already doing that now, he has a bit of pureed apple here and there and loves it. I take what they say with a pinch of salt, over these past few months I have come to trust my own instinct with him. I know not to push him too hard and at the same time I know not to give up trying with him.

Zack's had a fitting for his hearing aids. It was all over in five minutes. They just squirted some putty in his ears to make a mould. This is then sent off and made into special Pant's hearing aids. They told me that they will test his hearing with his hearing aids in and keep re-testing his hearing without them to see if there is any improvement. We should get them in the next couple of weeks, I bet Zack can't wait for Lady GaGa!

We were due to have a physiotherapy session at home on Friday but the woman didn't turn up. When I called to find out where she was she said the session was at the clinic even though at the last one we discussed her coming to the house. Great. No physio for Zack. We rearranged and she made no apology for the mix up. I'm not too bothered that a mistake has been made it just annoys me when she didn't apologise. Mind you all she does is the same exercises I do with him every day, so he is not missing out on too much. I will see how we get on over the next few weeks and then may look at some other form of physiotherapy for Zack.

On a few positive notes, Zack is LOVING his Little Room. His Grandad Price has now bought him his very own one for keeps (told you he was spoilt). These aren't cheap to buy so we are very grateful to his Grandad as this is a really valuable piece of equipment. We have put some toys down the sides of it now. The other day Dan and I were in the kitchen when we heard some loud banging, Zack had discovered the rattle at the side of the box and was taking great delight in batting it with his hand. He can spend a good hour in that box and not get distressed, it's fantastic.

We are carrying on with his Scotson technique and it seems to be doing him some good. He is getting more relaxed and a lot more vocal ( this last benefit is not good for our ears). He opens his mouth a lot more when in full crying mode which is great as he never used to do that. We are due to go back there in October and I am very much looking forward to it.

Zack's ability to move his legs and arms is getting better. His feet are not as turned up as they used to be and it is easier to bend his legs which is something he does of his own accord. We do some baby massage after his bath each night which he quite likes now and this give us a good chance to get his feet moving and encourage him to stretch his muscles.

Next week we have no appointments, not one hospital appointment or nurse appointment, nothing. I am really looking forward to it. I suppose for others you would call that normality for me I call it a treat.

We've finally decided

As I've mentioned Zack always had trouble with his suck and swallow since he was born, so he has been fed via a Nasogastric tube. This is inserted through his nose and down into his stomach, all his milk, medicine etc is given through this tube. A lot of prem babies are NG tube fed at first but then most do learn to breast feed or take a bottle. 

Zack was never able to do that. I can't tell you how difficult it was to watch other babies in the Special Care Baby Unit feeding normally. In some ways we thought if we can get him to do that then he'll be okay, he'll be just like all the other babies. 

Whilst in hospital Zack got to see a Speech Therapist, not to learn how to have a nice chat with his mum and dad, but to learn how to suck and swallow. And so we started the dummy training.  Every time we fed him we would have to encourage him to suck on his dummy so he would associate sucking with his tummy being full. Zack made very slow progress, in the end we were trained by the lovely nurses on the unit in how to insert an NG tube. I tried to avoid this for a while as the thought of the whole process was difficult, his dad was a little braver and managed it fine. After I did it once, it wasn't really that hard. Poor Zack has the short straw, whilst me and his dad hover above him with the little tube he's the one who is distressed for a couple of seconds as it hits the back of his throat. It breaks my heart every time we do this, I hate the thought of causing him any pain.

We brought Zack home NG tube fed, this also meant setting up a whole host of supplies which would arrive every month containing syringes, tubes, and ph strips. 

Zack's suck has greatly improved from those first few weeks in hospital.  From not holding his dummy in and doing virtually no sucks, he can now keep in his dummy and does lots of sucks. He just isn't very co-ordinated at it all. He can now drink tiny bits of water but it is nowhere near enough volume to maintain his ability to put on weight. So we were faced with the suggestion of taking Zack to have a Percutaneous Endoscopic Gastrostomy (PEG) fitted. This is where a flexible feeding tube will be fitted into his stomach. The operation is very short and we have been advised that to help Zack with his feeding, this will be better for the medium to long term. 

It has taken us a while to come to terms with the idea of having this operation done, but we've finally decided to go ahead with it. We know that once he can feed orally and sustain enough food to thrive the peg can be removed. We also know that it will be better for him as he won't be irritated by the NG tube down his throat, we won't be constantly battling with him to stop him pulling it out and we won't be terrified that every time we put it in it's going to go down the wrong tube and into his lungs. 

Believe me this decision has been difficult, most probably because psychologically all parents want to nurture their children by feeding them and what we are doing is completely abnormal. I know of parents who have children who have had a peg fitted and it has helped them immensely, I also know of children who have had one fitted and then removed not long after they have learnt to eat.

What I have come to terms with is that getting Zack to feed orally will be a long process but I know he will do it, I have a feeling that once we can get him on to pureed food he will find it easier to manage than liquid. 

We have recently been to an appointment at the feeding clinic at Alder Hey. They were all very helpful and went through the options of how we can get Zack to feed, there was no pressure on us to opt for the operation but I know it is the best option. They also explained that due to the damage within his brain he may struggle with using the muscles in his mouth hence why he has difficulty swallowing and sucking. I know he has the ability to do it but I also know how hard it is for him. Bless him, I am so proud of him when he tries at drinking his water, sometimes he looks at me as if to say, "yeah, what's all the fuss about give me some more" and other days when he coughs or gags on it, he looks at me with shock and it makes me feel so helpless.

Oh yeah, in case you are wondering why we can't just shove a bottle in and why we are so careful feeding him...well, if Zack can't control his swallow very well he could aspirate. Essentially he could take some liquid into his lungs and not into his stomach, this means a host of problems such as serious chest infections or as the speech therapist once mentioned, effectively cause him to drown. So that's enough to put me off ever trying too much before he is ready. See I told you he is teaching me patience.

We are going to make the appointment for Zack's operation tomorrow. I know I will make that phone call with trepidation, still thinking if I am doing the right thing, still part of me not wanting to do it. But I have to do what's right for him and hopefully we can then just focus on letting him enjoy nice things to do with food rather than the awful things such as ventilators, suction machines and tubes.

One good thing though, if anyone ever needs an NG tube putting in then I'm your girl!