Fred's
First Year
Frederick Ryan Hogg was born at 7.34 pm on September 24th 2000, weighing 7lbs 2 oz. I started this diary very soon afterwards as a proud Dad and in order to keep family and friends in touch. When Fred was diagnosed with Pierre Robin Sequence, I looked around on the internet and frankly found some pretty disheartening stuff. I am glad that I kept this diary and I hope that anyone else who finds themselves in the same circumstances might find it of help. Please note that I've since reorganised the photos pages that I refer to in some of the entries.
A Diary
First Entry
It's been a pretty trying few days ... Fred was born by emergency Caesarian on Sunday night - he wasn't very happy with Mum's contractions. He stayed with Mum until the early hours of Tuesday morning. He was getting more and more agitated and hadn't fed. At four in the morning a doctor had a look at him and realised that Fred has a cleft palate - he has what's known as 'Pierre Robin Sequence'.. more of that later perhaps, basically a little chin and a cleft palate. Within an hour he had been fed through a tube through his nose and we handed him over to a nice lady on the neonatal unit to monitor his breathing which has been a little laboured and ragged. Seeing him in an incubator was the most heart breaking experience of my life.
He's stronger now that he's been fed a bit and moving around a lot. We're over the initial shock a bit now too. Once he's settled he'll be going to a ward where they specialise in cleft lip and palate and we'll learn how to care for Fred - he needs to be held and fed differently from most babies.. so he won't be home for a couple of weeks perhaps..
... phew.
Not forgetting Mum, she's recovered remarkably well considering all this and although I'm wheeling her around in wheelchair, she's feeling pretty 'normal' physically.
There's been a lot of tears and worry the last couple of days but we are both still really happy . It's true what they say about how you cannot be prepared for how you'll feel about our own child. By the way, the picture doesn't do him justice as he has huge blue eyes !
1st October (1 week)
We've pretty much lost all track of time and what day it is now. I know that's the case for every new parent. We're doing okay really, Jack has the hardest job at the moment as she's staying in hospital with him and she's coping with the whole baby blues hormone thing. I'm going backwards and forwards but at least I can get something like a decent nights sleep (I go to sleep hearing his little apnea alarm blipping away and gently rocking)
Fred's doing great considering.. he's got a really strong head, as in he turns his head over in bed and can hold it up pretty well when I'm holding him on my chest..not bad for seven days ! He's feeding like breastmilk's going out fashion, putting weight on. The only difficult things are balancing the feeds with his energy - he gets more tired than most babies just by sucking - we've also got to get used to handling the ng tube. He's supposed to be fed regularly at three hours but at the moment he's waking up after two, starving! He's really learning the sucking and has manged to take some milk from a squeezie bottle. I need to learn to relax more when he's on his back for changing poopy nappies.. he's not comfortable like that and sticks his tongue in his palate, making breathing difficult. As a consequence, I get a bit rushed. It's a shame because carrying him face down and lying him prone, it's hard to make eye contact and play.
The last week has been the longest, most trying seven days and I know that we have now swapped our old lives for new - we are now known as 'Fred's Mum and Dad' and I wouldn't have it any other way. I know - ask me that in a few weeks !I'll put some more pictures on soon - I'm off to bed now.
13th October
A brief note as time is short - we are home ! The fun starts here ! Fred's doing fine, all the 'normal' things that little babies do.. we are discovering the joys of 3-hourly feeds through the night. He's a bit more settled today (third day) but the first night was a real trial - he just didn't want to sleep at all. It's a big change from the hospital. Jack's passed another NG tube (stuck it up his nose into his tummy).. I'm official pinner-downer.
We've met a little girl today who had the same condition (Pierre Robin), just over a year old , a very happy 'normal' little girl - it's really nice to see the chin grown out and she's post-op - cleft fixed.
Thanks to you all for all the cards and presents and good wishes, much appreciated and Fred will write to you as soon as he has a moment.
Anyway, that's it for now. I hope to update the photos when we get some more.
5th November
Six weeks today. I'm conscious that I haven't been keeping the site up to date, but then I haven't been finishing a cup of coffee lately! Fred's doing really well, on Wednesday he weighed in at 9 lbs 7. He's a lot more alert for longer periods now - which is pretty tiring.. and on Friday we got our first smile.. he's ben practicing grinning in his sleep but we've not had another one yet.
He's been quite sicky over the last few days, so we're having to adjust the amounts he's having, it's quite a guessing game with the tube feeding because you don't know if he's had too much until he throws it back at you. He's very selective and generally chooses Dad to puke on!
The tube that he has in his nose is attached to his cheek using special tape and unfortunately he does seem to react to it, so he's always got a nasty red rash on his cheeks - shame. It's a nuisance too because the tape keeps piggling* off which means replacing either the tape or the tube - either way it's distress for him (and us).
Mum and Dad are completely knackered. I'm back at work now and the transition between four hour feeding cycles and the nine-to-five is a killer.
That's it for now. We've got some more photos but to be honest they're not brilliant.. I'll have to sift through and scan some in. I'm off because the wind is REALLY picking up - (no I mean outside), and the lights keep flickering.
*To Piggle.. I don't know if this verb is in the dictionary but it is one of the best words in the English language.
18th November
Eight weeks tomorrow. We're doing pretty well. We seem to have got the feeding balance about right - a bit less sicking up. Fred's doing well on the bottle, usually managing to take about a third of his feed or more orally before we finish off with the tube. The biggest problem has been his reaction to the various tapes we've been trying out to keep his tube fixed to his cheek. It'll be lovely to see the back of that and see his cheeks not covered in red swellings. Hopefully we've got a working solution now in Steri strips (little tapes).
Positionally he's improving all the time - much happier on his back and now that he's taking notice of more he actually enjoys his mobile in his cot occassionally. We still have to keep a close eye on him o make sure he's not getting 'slurpy'.
We're getting quite a few smiles these days, usually just as I'm due to leave for work - a few late mornings! But it's lovely as he's got a really cheeky wide grin!
18th December
Things are looking good. Fred pulled out his tube three times in three days so we thought we'd try him without. So far he's really taken to it - he's actually taking more food in and being less sick. The downside is we're now feeding on demand.. so every two hours sometimes ! His cheeks are now not red and scabby - actually quite chubby - well, relatively speaking..I can't begin to describe how much better I feel for the tube going. We still have to keep a close eye that we don't get carried away with his success and put him under any strain.
Last night we had a real squeal of a giggle - lovely even though it was 1.30 in the morning (and at four).
Anyway, as soon as we have more pictures I shall post them - I keep pointing the camcorder at him instead which I suppose isn't very website friendly. I won't be updating before - so Merry Christmas and Happy New Year to you all!
7th January 2001
Fred is now 15 weeks old and over 11 lbs (not a huge baby). The dreaded tube has been out for about four weeks (4th December) now. We've started feeding Fred a little baby rice and he is LOVING it! I've posted a load of new pictures so you can see for yourself what he thinks of it.
We have a real laughing boy now.. he smiles and laughs quite readily, actually, while ever he's awake and not hungry or with a full pant, he's generally chuckling or rabbiting on about something. He has just started to reach for things and aim them roughly toward his mouth so we'll have to watch that. We've had a bit of excema too, which was a worrying rash at first (These things should come with an instruction book really).
As far as the rest of his 'condition' goes.. he spends nearly all his time either sitting up or on his back, he's okay now in a buggy too. The exception is when he's asleep, when he still lies on his front. He's trying to turn himself over already, so I don't know how much longer that will last! His breathing has really improved. It's been a gradual change and it was only when I watched some video of the first couple of weeks that I realised how much quieter he is now. We're still trying not to get to carried away and we have to watch for the signs but he really has come on so well lately.
We're seeing the surgeon in a week or so, so we're hoping that we'll have an indication about his operation then. Not something to look forward to, but we know it'll be over then and Fred won't remember anything about all this anyway.
8th February 2001
13lbs 5oz and 61 cm (actually 61.5cm !) Fred is doing very well. We ordered a high chair over the internet and it's great, it means that we can all sit at the table together and share pudding and rattles. (It's one designed to be used from birth so he's okay even though he can't really sit up properly yet.) Fred is incredibly good natured and seems to laugh and smile nearly all day - obviously there are exceptions such as when he's hungry or over-tired but he's generally a happy little soul.
We saw the surgeon who was pleased with Fred's progress but felt that his chin growth so far wasn't enough to go ahead with surgery. We might be looking at when he's around a year old. In the meantime, we've got another appointment in six months (well, May) to review. He also told us that we might have two operations rather than just one. We'll know more closer to the time.
We've been warned that Fred's voice, or at least his cry might change when he's had his op. that's a bit spooky.
Anyway - some new pictures to go on..
4th March 2001
Fred is 23 weeks old today. At his last weigh-in, he was 14,lbs 4oz (little chubber) He's got little chubby bits on his knees now -very cute! It's amazing how quickly he changes. He has learned to roll himself over and if he's on his front, he pushes himself up to get a good look around. We normally get a good session of gymnastics in bed in the morning at the weekends and I'm sure it won't be long before he's crawling.. he's certainly getting the idea. Which means I need to get those safety gates up pronto.
He's grabbing everything in sight at the moment too, most of it heads towards his mouth.. he's just about getting to grips with his two handled beaker/bottle thing too..alternately drinking from it and throwing it on the floor for Daddy to pick up for him. (I am not playing that game. No, I will not play that game, I know how it works.. ooh, you little bugger..)
Basically all round he is exceptionally cute.
18th March 2001
Just a quick note - I'm uploading some new pictures today. Fred is now a one-toothed baby! (And it's a sharp one) He is also starting to sit up on his own.. it's amazing how quickly everything happens. We are also moving him into his own room tonight, so we'll see how that goes. In view of his increased mobility I have finally put up the stairgate too!
I was looking at him today and thought how easy it is to forget about the Pierre Robin.. but from certain angles you can tell his chin is small.
The photos really don't do him justice as he smiles and laughs nearly all the time, but the moment he sees a camera he stops. (Little bugger)
14th April 2001
Two teeth now. Sitting is pretty straight forward stuff and crawling is imminent! He's had his first cold, very snuffly and sorry for himself (Mum's got it now - yes, and she is too!). We don't know how much difference the cleft makes.. I suppose that there's less nasal passage for all the gloop.. hmm, nice topic eh?
I caught a big sick today too, had a pool in the palm of my hand, isn't it odd how that sort of thing doesn't matter so much when it's your baby? (I'm not saying it was nice or anything).
Fred's very vocal at the moment, he's starting really working his jaw and does a funny mmammawamma noise, it cracks us up every time!
He's settled in his room very well, occasionally in bed with us by the early hours but generally okay, it's quite a relief really.
Right, more when I update photos..
2nd June 2001
Crawling? We left things at ground level alone for a while to see how he'd be, but Fred is into everything! He motors about at a frightening speed, always heading straight for electrical sockets, vases, dirty pramwheels.. anything away from his toys ! Not only is he sitting and crawling but he also dragged himself up to a standing position on his own last week.. it's the new thing and he's trying it all the time. He's 'walking' pretty instinctively too. The sound of the last couple of weeks has been 'gah'. No new teeth yet, though someone's left the tap on and he's still dribbling over everything.
Overall, he's doing very well. Very happy and smiley, laughing at everyone.
Big news is that we saw the consultant and we've got a date for his operation - 5th September. He was really pleased with his progress generally and his chin has come on enough fo him to go ahead. Scary stuff.
More photos scanned in!
11th August 2001
Obviously been a while since the last upload. The date for Fred's op is now the 6th September.. not long at all and we're getting a little nervous. It's a big help knowing where we're going, we're familiar with the staff and we've known since he was a day old that this was going to happen. still..
It will be his first birthday soon after, it's hard to believe that it's been a year already. Having said that, he is a real lttle boy now and less of a baby every day.
Fred's got a fine collection of top teeth now and he loves flashing them ! He's been doing a really funny cheesy grin lately, all teeth and squinty eyes with his head thrown back, it makes me chuckle just thinking about it! We haven't quite started walking yet, any time now, but we've sussed out clapping hands (which we do when we've been caught doing something we shouldn't) and almost sort of waving (if the mood's right). Other things he's doing include 'talking' a lot, lots of kissing (aah) and sometimes putting cups inside each other rather than just hammering them!
Although he's still a happy boy, the last couple of weeks have been pretty trying, he is very clingy to Mum and shouts at the top of voice from when he gets up until bedtime. We've also been trying 'controlled crying' at night. Unsuccesfully, he ends up with us most nights. I'm a bit wary of trying to force him to sleep alone until he's over the op.. we're bound to be a bit soft then and let hm sleep with us all the time anyway.
I'm adding pictures today from our first family holiday - we went to Pembrokeshire for a week at the end of June. Mum was there too, honest, she was just mostly pointing the camera rather than being infront of it.
10th September 2001 ...The Operation
Well, the big day has been and gone, Fred had his palate repair operation on Thursday at the City Hospital. It's been a long few days but the amazing thing is that we're back home and you really wouldn't believe that Fred has just had such a big operation, the way he's laughing and playing around.
We went in on Wednesday last week to be admitted and spent the day waiting to be seen by various people before coming home to spend the night in our own beds.. er, make that bed. (We only live five minutes away from the hospital).
On Thursday morning we had an early start, there for quarter past seven. Fred wasn't allowed anything to eat but was surprisingly happy considering. (As he was being starved we skipped breakfast too).The next couple of hours were horrible, waiting to take him down to theatre..pacing around nervously and being cheerful. Mum couldn't go the last bit and I took him into the anaesthetist. He was good as gold and it was nice that I was able to hold him on my lap as he was put under.
The next three hours were not much fun, but I already felt some relief, he was in safe hands and the worst wait was over. We both managed to get some breakfast.
We went to collect Fred from the recovery room around mid-day and although everything had gone well and they were all happy with him, seeing his little swollen face and hearing his tiny little whimper was hard.
The next 48 hours was a period of steady recovery. Fred had an ng tube in his nose again, a tongue stitch (probably the most unpleasant bit) and morphine and fluids on a drip. To start with he was a bit bloody and not settling until the pain relief kicked in, but as each 'stage' was reached, you could see visible improvement, by the end of Friday he had tried to smile already. Mum stayed at his side overnight and found that we found that he would only settle on our shoulders. In fact, the first time he was put down was on Friday night around 11.30.
We were allowed home on Saturday afternoon and we've tried to keep a quiet house this weekend so that we can all try and catch up a little. Fred took sloppy food from a spoon almost immediately, but we haven't yet had any success with the old squeezie milk bottle. We don't know if it's the bottle or just the taste of milk. We are compensating by giving him lots of milky food like ready brek and he's eating baby yoghurts like they're going out of fashion! Apparently we can start re-introducing more solid food about now but obviously we need to take care. Fred also has splints on his arms to prevent him from sticking his fingers in his mouth. I thought that they'd really irritate him but he is very adaptable (He's even tried to get a cup to his mouth with them on.. sad but comical). They will have to stay on for around thre weeks, although we can give him breaks for as long as we like, as long as we're watching him.
I think the hardest things at the moment are trying to get him to sleep.. he was very attached to his dummy, so we're doing 'cold turkey' at the moment.. and watching him all the time, I got so used to seeing him with a finger in his mouth (he's teething) that I have to remind myself that that's a bad thing now.
Overall, it hasn't been pleasant, and we've got a way to go, but it could have been much harder. We're very lucky that Fred hopefully will only need this one trip, unlike some children, and that he's such a happy, confident little boy. We're also lucky to live where we do, on the doorstep of the City Hospital. The staff on Millard Ward have been absolutely brilliant. Because we spent some time there when he was born, and we've kept in touch since, we really felt as if we were being helped by people who cared about Fred and us. Being in hospital with your child is never going to be a pleasant experience but they have made it so much easier for us, we can't thank them enough.
Anyway, we're now listening carefully to Fred's every sound as we swear that he's used his new mouth already to say 'hello' and 'no' ! He is making a lot of new noises. He is also kicking like a mule.. I think it's to compensate for the arm splints. (Which by the way are excellent clubs for smacking Dad around the head with at in the morning)
17th September 2001
Fred is definitely back to 'normal' - full of energy and NOISY! He's still got the splints and although he's okay with mushy food like banana and white bread we still have to watch out. When we take the splints off we really have to remind ourselves that the finger does not go in the mouth.
He seems to have really taken to music this last week or so.. bouncing and clapping his hands. Today he was dancing in front of the telly to the 'Tweenies', it was really funny, little wiggling bum!
He hasn't returned to milk at all.. we've tried sneaking it on him but he just really doesn't like it at all. Strange, but we are assured by some friends that their kids did the same around a year old. The good thing is that we very much doubt that we'll need the dummy again.. he's obviously adjusted to life without it, he's almost sleeping better, so there doesn't seem to be any point in reintroducing it.
Every time I look at him at the moment I'm really struck by how much he's grown up - he is a real little boy now!
27th September 2001
Monday was Fred's First birthday!! He had a lovely day and obviously enjoyed all the balloons and presents. We bought him a little car that he can sit on or walk along pushing.. and he loves it! I think one of my lasting memories will be Fred at 7.30 on Monday morning, racing along pushing his car in his sleep suit, straight legs and laughing his head off.. priceless. (Or me at 8 o'clock bent over pushing him from one room to the other, making engine noises and out of breath) We had a big birthday tea with the grand parents and although he obviously had no idea what al the fuss was about, he loved it.
On Wednesday we went to Twycross Zoo, which was a hit too. We figured that he might enjoy it, even if he doesn't remember it, and he certainly took everything in. (Right at home, little monkey!) I have been off this week and I have to say it's been lovely having a family week but I am sick to death of the Tweenies!
He still has his arm splints and we've popped back to the ward because we were a bit worried about the palate repair.. well, worried is a bit strong. There seemed to be a bit of a gap. It's clean and he's fine but we needed someone to look and tell us if it was supposed to look like that. It seems that one of the stitches may have come out, but it's only the oral layer that's affected, so it will just heal with a bit of a groove and shouldn't cause him any problems.
Hopefully we can get the splints off soon, they're really more of a pain to us than they are to him. Still no dummy or milk, and still not sleeping through.
This will be my last regular diary entry on this page as I am reorganising things a little. I'll still post pictures of Fred occasionally and a little update too. Thanks for your emails and all your support this year.
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