27/10/07

Elis has been upgraded to the nursery today and is back in a swinging crib so has more room for his toys. It is lovely to have progressed but a bit sad to leave our High Care buddies behind - at least we are still allowed to visit them as we have a Halloween party planned for Wednesday (followed by lunch in a local pub for the mums)!

He has done better with his weight since his last weigh in and is now 3.257kg which is 7lb 2oz - some of his clothes are now getting too small!

25/10/07

Elis had been nice and stable this week. He's been taking it easy (only putting on 30g at Monday night's weigh in!) and as always, doing things in his own time. With the help of the physiotherapists, we tried him in his baby carrier and sling this week and he was a very happy boy in the carrier.

As for when he might be coming home, that is a little bit uncertain again now. Elis has a hernia (Little Ernie) which we always knew would need surgery but were under the impression that it would be some time after he came home. However, his consultant is now thinking that it might be better for him to have it done before he goes home. Because of his poor lungs, he will need a specialist surgeon and anaesthatist so will have to go to a different hospital in Cardiff for the operation and will also need increased steroids again (he only got down to his maintenance dose yesterday). If the operation is carried out before he is discharged, he can be transferred to The Heath's Neonatal Unit whereas if he comes home first, he'll have to go to the paediatric ward along with all the other winter bugs and germs that we are desperately trying to avoid him coming into contact with. Elis' consultant will discuss the situation with the specialists involved in actually doing the surgery and we'll be guided by their advice. We're absolutely dreading having to go through the whole ventilation scenario again but you do what you have to. We're trying not to think about him coming home too much now as once again it seems to have got so close only to disolve again.

21/10/07

We've had a lovely stable weekend and as Elis is spending most of the afternoon awake now, he's very entertaining!! Today I've been trying to teach him to hold onto his own dummy as I'm getting bored of sticking it back in his mouth each time he spits it out! He's doing pretty well though!

Thursday's weight was 6lb 12oz.

19/10/07

Elis had a lovely four-month birthday yesterday sitting in his chair and reading his books. His feeds are still going well and this morning he was weighed at 3.097kg (I'll check what that is in real money when I get to hospital later). As the sun is shining this morning, hopefully we'll go for another stroll outside this afternoon.

17/10/07

We're still heading in the right direction and Elis is making steady progress. He's put on another 77g since Thursday and is doing well with his bottle feeds, taking 4-5 full feeds a day orally. His oxygen requirements have increased a little bit to about one litre and his steroids are being reduced this evening so we'll have to wait to see what happens as the week progresses.

Elis' consultant has said that if they can reduce his steroids to the maintenance dose next week without significant changes to his condition then it is possible that he could be coming home in about three weeks. At least his bedroom is now ready but for a few finishing touches!

He's had a busy day today as we've been making the most of the sunshine by going for a little walk around the hospital and then Elis had another bath so he should sleep well tonight.

12/10/07

Elis has been a good boy this week. He's doing well with his bottle feeding and is still putting on weight at a good rate. He is now 2.9kg which is 6lb 6oz. His steroid dose has been reduced once more and his oxygen requirements have remained stable at 0.5 to 1 litre. Yesterday he was given his 12 week immunisations - 4 weeks late, but hey, who's counting?! He's been happy enough though, feeding well and having reasonable periods of alertness and interest in his surroundings. We're going to have to find him new toys for when he comes home!

The great news is that there are mutterings amongst the doctors about him coming home in the not too distant future, assuming he increases the number of feeds he can take orally and maintains his weight and respiratory progress.

The gutting news about Elis coming home is that we need to find a new home for Dookie dog in a hurry. We have to do everything possible to minimise the risk of infection and sadly having a dog isn't conducive to having a germ-free home. If anyone knows someone who could give Dookie a happy home, please let me know asap. What can I say? He is loyal, intelligent, well behaved (most of the time) and truly lovely but can be boisterous so wouldn't be suitable for a household with young children. Truly gutted.

7/10/07

Elis has had a good week and has remained infection free (as far as we can tell at the moment). He had us worried at the beginning of the week when his oxygen requirements went up, but that could be in response to his steroids being gradually reduced, thus having to work harder.

He's doing really well with learning how to bottle feed now and yesterday started on alternate bottle and tube feeds. They've even started talking about starting the discharge process again so if he can avoid infection and get rid of the tube feeds then he might be able to come home some time in November.

He's still putting on weight, checking in at 2.64kg (about 5lb 13oz) on Thursday night and has grown too big to be living in the cot so was upgraded yesterday into a swinging crib. It's beginning to look like his own private bedroom in the corner of High Care!

1/10/07

Elis has been doing ok again the last few days. He's had more blood cultures come back clear and had another Lumber Puncture on Friday which is also clear for infection, so hopefully they'll stop his antibiotics tomorrow and he can get on with the business of being a growing baby. He weighed in on Thursday night at 2.56kg (5lb 10oz) so is back to where he was before his stint back in ITU, which is good.

He's had a few visits from a physiotherapist to help with positioning and development, and also a Speech and Language Therapist came to see him today to advise on how we can help him now learn how to feed from a bottle. He needs to be able to have a more satisfying feed than via the tube when I'm not around (plus we have a freezer full of milk that he needs to learn how to drink!).

He's had a really 'nosey' day today, really interested in everything going on in the unit and was awake for hours. He should sleep well tonight!