Cleft Lip and/or Palette

Just a quick one...

He went ok - except he didn't seem to like the taste, so will try him on some veggies tomorrow!

And just for info - none came out the nose! Although I didn't load the spoon up much... :p

Where is everyone? Noone has posted for awhile...hope you are all ok and just busy!!!
xoxoxoxoxo

We had our first success tonight with solids. We baked a sweet potato in the oven & mushed it up. Then I put a bit on my finger & he happily stuck my finger in his mouth (whereas he hated the spoon). he loved the taste & kept coming back for more.

That was until he put my finger in too far and I think it hurt. He was tired anyway, so we gave up then. Will try more tomorrow.

He only had a little dribble of orange water come out his nose - so I call that a big success! I left my finger in as long as he liked, and I could feel what he was doing with it. He seemed to press it against his gum (which is complete) and use his tongue to get the food off! I think this will help him not get it in his nose!

PM - how you doing girl? Not long to the op, so I'm already thinking of you and sending you 'goodluck' and 'calming' vibes...;)

Am trying to upload some pics of Taj so you can finally see what he looks like!
Having a bit of trouble but I finally worked out how to get a ticker up so there is a small pic of him on there!!

Ok I now have photo's of Taj under my user name in the gallery!!:clap:
Just a few for now and will upload more as I go!!!!
He is 5 months old this wednesday! We are going to get a surgery date real soon for his lip repair!! YAY!!!!!! Still going every friday up to the royal childrens hospital but the plate they fitted has done wonders so it has been worth it!!!!:D
Where is everyone these days?? You must all be busy!!:lol:
xoxoxo

Hi all,

Hope all is going well with all your bubs! Finally got a confirmation for Taylor's cleft to be repaired....9th Dec so am glad it's all falling into place although am a bit nervous about it all...!

Have been giving Taylor solids and it was a bit hard to start with cos she kept getting it up her nose but then I found out why...she was storing it all in her mouth!! Ah well am learning now to wait a bit before I shove some mashed veggies in her mouth now! :lol:

Lots of Love xxx

Hi all....just wanted to let you know we got a date for Taj's lip repair surgery yesterday...11th Dec so only 6 weeks to go. He was born 11th of june so its 6 months exactly to the day!!
Very exciting but very scary now it's real!!!;)
Just wondering what you thought about me starting Taj on solids...do you think I should just wait till after his surgery or start him now ? (he is 5 months) Not sure what to do??:wall:

Leesha - He's gorgeous! Love the photos... :lol: I would let him decide. Do you think he needs the solids? Is he satisfied with milk? I reckon it would be easier on you if you waited as he'll only have to re-learn how to eat anyway. But I'd go with your gut instinct...

Wow - looks like it's all happening in December!! We've got a 'cleft clinic' appt on 1st Dec to decide the surgery date for Liam's cleft palate repair. Probably March 09.

Smx & Leesha - :hug: to you both! Courage and strength. At least we've got each other for support, hey?

Liam's doing really well. He's a bit on & off with solids. One day he'll really take to it and the next he can't be bothered. So we're going slowly there. Unfortunately he seems more interested in sweeter foods (banana) than the veggies.

Got to go.. he's making noise (and supposed to be asleep!!) :shhh:

Leesha - He is so cute. Yippee on getting a date, scary but a great step forward for you. Matilda is the same age as Taj and I have had her on solids for two weeks now as she was ready, is Taj showing any of the signs? If not it may b worth holding out until after the surgery as Nettie said.

As above I have started Matilda on solids 2 weeks ago, she was on rice cereal for 2 weeks and done really well and we are on our 3rd day of sweet potato and she loves it too! I was scared of it coming out of her nose, the first day she ate it all and then 10 minutes later I picked her up to change rooms and it all came out her nose, :lol: she must of stored it up there! But since then we have gone great, she eats it and swallows, no more out of her nose, except yesterday when she had a sneezing fit after a mouthful and she has sweet potato come out :p.

On the bottle vs tube feeding we are going ok, we haven't come off the tube yet, she takes about half and half, the morning feed she takes orally then the next 100mls oral 100mls tube, then she gets slacker and slacker! It must be tiring for the bubba girl!

Nettie - I am holding off on the fruits for that reason, want her to like her vegies :) I love banana and I know once she gets that she won't want anything else.

PM - Not long now...! I'm excited for you.

Hello to everyone else...

Deanne.

HI All My name is Adele and I am from Cairns Qld. My son Alex was born with a complete cleft lip and palate. He had lip and hard palate repair at 3 .5 months and we are due for soft palate repair on 27th November. We have the ops in Brissy as they don't do them here. Seems there are MANY different opinions and ways of doing things with cleft repair, depending on where you go/who oyu see. Have any of you found that??

Nettie - thanks for putting me onto the site and for the 'spare parts'. I have not had a chance to get in and actually read/join up until now. Wish I had taken your advice and looked into this site sooner as you guys are all going through same as us. How are the solids going? Alex has been on solids since about 4.5 months. He loves them but did the same out the nose thing for about a month or so. Mostly not too bad now but does store up sometimes LOL.

Leesha - NOt sure if this helps but if you think Taj needs to start solids, maybe get him used to soup-like sloppy stuff . Not sure what your cleft pals recommend for the feeding but the 'witches hat' we used would allow for 'soupy' solids (runny custard or that type of consistency) . Alex was not on solids then and actually preferred runny milk but following Cleftpals advice we did try thickened formula and if he had liked it, feeding time may have been a little less messy :) They told me custard (or at least a bit in with the formula)is often a hit after the op and helps with sustinance as they do often cut back on feeds for a few days (Alex lost 1kg and he was a hungry baby).

If anyone has tips for the palate op please let me know.

Thanks

Del

Hi all.. welcome Adele, glad you found us!!!!
I have tried randomly to give taj solids ut is still not interested...booby milk must be too good!!!!
I have decided to wait until after his surgery which is in a week and 3 days!!!! Aggggghhhhhhhh...getting nervous now!!!
I did find Adele that different surgeons like to do things differently!! My surgeon does bilateral lip repairs at 6 months (no earlier) and in one operation where as some others do it in 2 stages!
Can't wait for christmas as my present will be a healthy little bubba boy with a new lip! He had his photo taken with santa the other day...didnt cry but wasn't too sure who the bearded man was!!!!

Hi Adele - welcome!

Leesha - how did Santa & the helpers go with Taj? Were they considerate? We don't tend to have any issues with anything because Liam's cleft isn't visable from the outside. I've had a few comments on the Habermann bottle we use ('That's a strange bottle!') but they soon shut up when I say he's got a cleft and it's a special needs bottle! ;)

We went to Cleft Clinic today and the hard & soft palate repair is set for 2 March 09. I really like our plastic surgeon who'll be doing the op (saw him when Liam was 3 days old and he's been guiding us through the whole way) and he's explained what he'll be doing and seems to think it'll be quite straightforward. I told him that I saw the back of Liam's mouth coming together when he yells and he said that was a good thing - it means the muscles there are developed so that's less work for him to have to do. Funny thing is I'm most worried about how Liam will go with his arms in splints (so he can't get to his mouth) - that will frustrate the &%$# out of him! DH & I will draw straws to see who will take him into theatre... got a few months before we have to make that decision yet. Sorry, but just thinking about that just made me start to cry :crying:

*sigh* better not think about it too much just yet..

Haa funny you said that Toni cos he santa did go very quiet and the helpers weren't sure what to say but hubby and I just ignore the wierd silences and looks and go on with things like he is a normal looking baby!! Very busy shopping centre tho and you can hear kids saying Mum look at that babies face...what's wrong with that baby etc...
I am so glad Taj doesn't know whats being said cos sometimes I feel so sad for him and other times I feel mad and wanna shout shut the f%6ck up...but kids are honest and it;s not there fault!!!
We also get strange looks and comments on the haberman feeder, I usually explain why when I can and people accept that!!
How exciting you have an Op date!! Remember it's not the journey but the destination that is important!!!:clap:
I am also concerned about the splints cos Taj is teething and exploring the world with his mouth and this will be like torture for him i'm sure!! I have shed many a tear over the last few weeks when I have thought about his operation!! Funny thing is the splints and the anesthetic are my main concerns...not the surgery!!:doh:
Funny how the mind works!!!
At least we all have each other on here to vent some of this concern....thank goodness!!
Why do bad things happen to good people has been my latest question....
You do have a little while to go so don't overthink things too much and worry..just enjoy christmas and the new year with loved ones!!!:kissing:
xoxoxoxoxoxo

Leesha - that's sad that you get comments... I think he's beautiful. Isn't it reassuring to know how far they've come with surgery and it will probably not be an issue for him as he gets older...

With regard to the 'bad things happening to good people' thing - I don't know what your faith is, but I strongly believe that 'bad things' that happen are paying your karmic debt. I believe in reincarnation and that people get paid back for the things they do - good & bad. Not always in the life they do the things, but in the next as well. It helps me sleep at night and fills me with reassurance that it will all work out in the end.

Don't know if that helps you or not - or indeed if it goes against your beliefs (in which case I'm sorry for any offence). Just my own faith that I wanted to share...

Toni...those words of belief are great! I have no religon and I am not christened, when we found out about Taj's cleft I started to think that maybe that was why it happened...because I din't belive in god or any religon!:pray:
However I do believe in Karma and that all make sense to me!! I also have always beieved that things happen for a reason even if you never know what that reason is!! Although one mum posted that special babies are sent to special mums and I loved that!!!!!

Only 3 sleeps to go ladies so I may not be around here for a bit or I maybe on here constantly looking for some reassurance!!!;)

Hope everyone is well and ready for the silly season!!!
:kissing:

xoxoxoxoxo
Leesha

Leesha - glad to know my words comforted you. I like the special babies comment too!

All the best for surgery. I'll be thinking of you! :hug:

HI Guys

Leesha - Good Luck. Stay Strong and just know everything will be fine. You might miss the 'old look' for a while - we did - but it is also so lovely looking at them and for them (for all the reasons you commented on above) to have a great look after the op.
Toni I agree with you about the Karma .. learning a lesson etc and I feel this has taught me HEAPS - another thing that was said to me that I truely appreciated, is that special children are given to special mothers and I do believe that. Even if it is just that we can give them the love and attention that they need - and not sure if I am harping now but as much as I wish no child had to go through this - I would not change him for the world.

We just came back from Brissy where we had our second op - soft palate repair. Honestly, all the hard work, frustration (for us all) and heartache was rewarded when Alex started sucking from a sippy cup attatchment for the first time - I cannot describe how excited and proud I was of him. The arm splints were a b^&%& but we got through it .... he is a little spoilt now but he deserves extra cuddles etc anyway :lol: Cleft pals here said to put splints on prior to op but I just couldn't do it to him - and I don't know that he would have liked them anymore anyway. He also decided to REALY teeth on the day of the op so no sucking or chewing was a real you know what but we got through it and exactly 2 weeks after he is now the happy baby I have always had ..... only he can eat and drink like everyone else - what a great Chrissy present and really not a long time (just have to wean him off the custard in the formula which he has taken WAY too much of a liking to ..... although it was a God send .. for swallowing in first week or so after op.)

CHeers

Adele

Hey ladies...just a quick one to let you know Taj is home and doing relly well!! Only stayed overnight as vital signs were soo strong and fed straight away!!!
He looks like a different little man but still the same....if that makes sense! I will post some photos over the next few days!!
Thanks for all the kind thoughts and messages!!!!

xoxoxoxoLeash and Taj!!

Leesha - yay! So glad for you. What a clever little man! I'll look forward to seeing the pics!

Well done Leesha and Taj

Hey everyone,

Hope you all have a wonderful christmas and the new year is a happy and healthy one for all!!!

I have posted some pics of Taj and he is doing so well...he looks so good!!! I am missing his big smile tho!!!!:o

Alisha
xoxoxoxoxo

Havn't popped my head into this thread since before chrissy and noticed noone has posted anything!
Hope you are all well and the little one's are doing great!

Taj is now fully healed and eating soilds! Sittting up by himself but not yet crawling! Saying what sounds like Dadda but I'm not convinced it is that! Not fair we do all the hard work and they say dad first!!!! He is now 7 months old and can't believe it has been 7 months since I made my first post in here looking for support! Where does the time go!!!

Im keen to know how everyone is going and if there is anyone new lurking around wanting to have a chat with us!!!!

xoxoxoxo

Hi all, thought I'd add my little message to say hello and that Taylor's op went well in Dec although it was an unpleasant overnight in the hospital seeing poor Taylor in a bit of pain but she made a quick recovery and went home the next day! She learned to swallow almost immediately after her op...have no idea if this is the norm but it was just a blessing to watch! It probably took her 4 weeks to be completely herself again (we had to take her dummy off her cold turkey after her op as well) but is doing fantastic! How are all the mums out there and hope you all had a wonderful christmas!! xx

Hey-ya everyone!

We're doing great. Had a fabbo Christmas. We flew to Brisbane on boxing day and Liam did fabulously. No problems with the pressure of the airplane - just bit annoyed at being cooped up! Slept through one landing & one take off...

Our op is in 6 weeks (2 March) but I'm trying not to think about it too much. I'll worry about it in a few weeks!

I was talking to someone I've known for many years yesterday and I discovered that she & her family sponsored a Mum & daughter to come over from Indonesia to have a cleft repair done at the Cranio Facial Unit in Adelaide. They did the fundraising and have had them staying at their house while it went on. The daughter is 2 years old and has a complete cleft everything (pretty much a big hole in the middle of her face). Even her nose was almost non-existent. The girl is still recovering from surgery which only took place about 2 weeks ago.

I'm so proud of her (and I told her so!) - the family she helped is a very poor family in a very poor village without access to ANY healthcare.

Aren't we all VERY fortunate??

Hope your bubbas are great. I'm really looking forward to Liam eating proper food as he's so ready in every sense except the cleft. He seems frustrated sometimes and it's the only part of his development to be slowed.

Toni isn't it great when you hear those lovely stories of people helping others! They are so fortunate to be able to come over here, have an operation and a chance at a better life!! Taj's surgeon is always on "smile missions" overseas working for free to repair clefts on kids...I take my hat off to him..

Well not long now till the surgery but everything will be fine! I know it's hard not to worry.. I took Taj in while they gave him the anesthetic for his big operation but when he had to go back the following week to have stitches out I let my hubby take him in..it was too heartbreaking for me to do it again..So my thought is maybe you should let your hubby take Liam in.

I was curious to see what it was like but it just made me cry as soon as I walked out of there! However he came out trumps like a little trooper..they are so strong our bubba's! Positive thoughts coming your way!!

Will be great when he can finally eat properly..he will be a new little eating machine!!!!

Thanks Leesha.

I'm starting to get a bit nervous about the surgery now so any words of encouragement are welcome! I think I need it...

DH is more sensitive than I am, so I may need to be the strong one and take him in. We haven't fully discussed it yet. Leave that for another week or so...

*bump*

Surgery is now just over 2 weeks away and I'm getting nervous.

I would REALLY appreciate some suggestions or words of advice to help me prepare...

HI Toni It is nerve wracking but all worth it . They didn't let me go in with Alex with either op so I handed him to a lovely nurse in the pre-theatre prep room. He was more than happy to go with her as she had a lovely coloured hat to play with and he didn't seem to miss me at all -that is all I saw - they told me the rest went well. Alex did really well with this op recovery - he seemed totally back to normal in less than 2 weeks all up. He liked the 'stoned' feeling he had and seemed reasonably happy most of the time - considering (he had a morphine drip for a few days and they kept the panadol up every 4 hours. He was off all drugs inc panadol - which I started to gradually decreased when we got home on day 5 - by day 10). He went through a stage where he wanted mainly only pureed solids for nearly the first 5 days and then just bottle for about the next 3. We just made sure some solid food was high liquid food (like pear etc) and kept offering water and milk which he woudl take in dribs and drabs. He also LOVED the milk/custard mix as it seemed easier for him to swallow - I was worried about him having too much sugar etc but they said it woudl be fine ... and it was - by day 10 he was back to normal formula only. He was still a big eater from about day 2 on, so the mix was about 80ml custard to 150 milk. We practised with the new type of feeding top they wanted him to use but come the op he seemed to have to just have to get used to it with 'the new mouth' but by day 2 he was a pro. Now feeding is soo much easier:clap: and he can suck on things like any other bub now. Oh I was soooooo proud the first time he sucked his bottle 'normally', I still get a little emotional just thinking about it. Don't be too nervous if you can help it - being so little they bounce back so well (esp with your love and positive support), it is all worth while and such a small amount of challenging moments in the long run ..... for the best end result . I am sure you will ALL be FINE :) Sending lots of positive thoughts your way. Del
PS Not sure if this is a no brainer but the little suits that have the easiest access to the armpit (like singlets or the all in ones with the front that pulls down a way) are best so they can take temp every few hours in hosp - if Liam is asleep you may get lucky and not disturb him as much ... some nurses insist on the armpit temp check as opposed to the ear .. and it was ALWAYS when ALex was finally asleep :)

Thank you Del. That makes me feel better actually!

How old was Alex when he had the op?

Our boy is so active and independent that we're quite worried about having him attached to drips and having his arms splinted (to stop him putting anything in his mouth). How did Alex go with that - if he had it done?

Hey Toni!!!

It is getting close now~Words of advice would be to just stay positive and strong!!!!! You know deep down Liam will pull throught this just fine! I know it's easy to say but seriously Taj pulled through like he had done this before,,,I was the one who had to pull my head in and focus! Although I have no experience in the Palate Op I know that we are both going through the same emotional experience!!! Adele's post will fill you in more on what you are wanting to know!

Suggestions: Definately easy button up suits and nothing that has to go over the head... Take your bottles with you and if you are expressing take your pump just incase they don't have the facilities! Take nappies just incase!! I know Liam is a cloth bottom boy like Taj but Sposies may be easier in this situation!!!
A good book or trashie mag for you to read or think you are reading while he is in theatre....
And just positive thoughts all round............................................. ..........................

What date is Liam's OP? I want to keep him in my thoughts!!
XOXXOXOXOXO

I forgot to mention that Taj only had the splints on for 2 weeks as they stopped him from doing the most basic of activities...Once he was used to the nasal stents and dissolvable stitches he was fine! (He hasn't worn the splints for nearly 7 weeks post op):p

However post op(that night) he was very upset and restless having the splints on and the drip in his arm:doh:...but they medicate them so they don't worry too much about it until the next day when everything starts to become more real to them and they lessen the pain medicaton!! But they are so resilient that he will be fine..I just know he will!!:dance:

Hi Toni

Alex was 7 1/2 months when he had the soft palate op (3 1/2 mth for the lip and anterior palate). He had splints both times that had to stay on for 10 days. I found them to be a bit of a pain to be honest - we both just couldn't wait to get rid of them - but DEFINATELY WORTH IT as Alex just so wanted to put his hand in his mouth and explore. I know there are different thoughts on the splints but I am glad we used them. I found they slipped off with Alex being so mobile (or trying to be) so I used to put elastic 'socking' over them which kept them in place really well (can't remember what it is called but you get it from the chemist - it is like what you woudl use to cover a bandage, the chemist knew exactly what I meant when I first went searching so shoudl be easy - and you can get a small roll so you just cut off what you want as you need it which is good as it mayget a bit dirty).
Last op was a little difficult as Alex was trying to crawl but was not quite there, so he and I spent ALOT of time playing together. Leesha's suggestions are great and also plenty of toys for Liam to make him feel at home and also entertained. Also if you have a blemder or stick mix - I found it necessary to reblend the suppossed 'pureed' food as it was too lumpy or what I wanted to feed him didn't come pureed so the DIY approach was much easier. I also took some pre prep pureed vege with me which I am glad I did as our meal ordering didn't get through prop until day 3.

Alex was the same as Taj with regard to drips and splints etc. Alex had a drip for 4 days as well as a heart monitor thingy (BOTH of which kept packing it in :doh: but it really wasn't too big an issue as medication worked and nurses are just so good withthe bubs). He was in quite a bit of pain for about the first 4 days and slept heaps (which is not at all like him) but I felt it was not 'as bad' as the pain from teh lip op.
Alex found plenty of ways to play with toys etc and entertained himself by the end of his 'splint stint' :clap: - even as medication stopped and splints were still on- and I think?? if he was able to actualy crawl it might??have been even easier so I think Liam should be fine. Have you 'practised' with the splints on? I didn't do it but I know some people do and they say it helps bub get used to it and not associate it 'just' with restriction and op.

Stay positive and strong - my thoughts are with you and I just know you will be fine. I found it to be one of those things that was stressfull in the anticipation and demanding and stressful during (for the 10 days they are recovering) but then one morning (day 11 or 12) everything was SOOO GOOD and all the hard times seemed so far away as I was just so happy that Alex was just so happy and he was back to his old self like it hadn't even happened - except he foundeating and drinking MUCH easier :)

Sorry this is so long - I am a chatter box

Thinking of you all
Del

Thanks guys - your words are a help to both me and DH.

Splints for 2 weeks??? Yikes! I thought it was only for 2 days or so... He's going to HATE that. He's so strong and curious - I'm so worried he'll pull out the drip or something.

How did your bubs sleep during recovery?

Leesha - Op is Monday March 2nd. He needs to be at the hospital by 11am, so I guess surgery's in the afternoon? How did you guys go with fasting prior to surgery? How do you explain to a baby that they can't eat or drink??

Sorry - can't think what else to say. I've started myself bawling now... will check again later.

Pre warn you - this is a novel - Wanted to share as I thought it might help??!! Hope it isn't too full on or boring. :redface:

It really is quite an emotional time isn't it .... please don't take this the wrong way but try to be strong & happy that the time is nearly here for this exciting event - it really is a big milestone for our little guys. I think while you definately need to be prepared (wish I was as it is the little things that make everything so much simpler), don't think too much about it or doubt yourself - you are COMPLETELY on the right track & doing all the right things so you will make all the difference to Liam's procedure and recovery . I hated how an 'experienced' mother discounted things and tried to sugar coat for me so I will say you do have a bit to get through (I know every situation is different but) if you find the experience similar to me ..... it will definately have its challenging moments. You know what though - it is ALL SO WORTH IT and our little guys just take it all in their stride (I think it is sometimes hard for us because we put 'adult' thought to it). To be fair - I think the mother was right in the sense that the 'unknown' is the worst part. Not to get heavy but I found this time to be quite an unexpected 'experience' and above all the challenges etc it was very positive in many ways for us. Look at it this way - At the very least we get extra time to get to know our little men in a way other mums don't have the opportunity to do - that is special!!!

As for sleep - In hospital Alex basically sleept for small periods frequently (24/7) for the first 4 - 5 days but then basically back to normal but it was unsettled sleep so he ocassionally woudl wake and need a hug and then be happy to go straight back to sleep. He turns alot in his sleep and the arm splints would restrict that so that was a pain. He woudl get frustrated and wake up grumpy, but again, he took it in his stride and he kind of had them sorted by the end He was a little irritable in general (understandable) but dealt very well with the whole thing. By day 6 he was sucking (he was allowed - just check with your doc if you need to stop him doing this though as some cases need them to not suck apparently) and by day 8, although he was still on panadol, he was almost my normal little man. By day 10 the splints were off he was happy as and eating like a machine. He had a GREAT sleep that night (no splints YAY) and has really never looked back.

The no food is a tough one. As Alex was littler, it may have been a bit easier than what it would be now - not sure. I made sure I gave him food and then clear fluids (I assume you have the two seperate times) at the last avail opportunity even though he was not on schedule and not overly interested - at least he took some and had a bit extra in his belly. Then in was just play play play to keep him entertained and try not to think about it. Not easy, but I don't know what else we could do??!!

I do hope there is some help in my big ramble here. There is just so many things that I think of that I woudl like to have known - if that makes sense. Every experience and clefty is different but stay positive and just know that you are prepared and things will be fine. Alex's op went better than anticipated and I am sure Liam's will be fine too - these surgeons are really talented and our kids amazingly special - what a great combo . Thinking of you.
Del :D

Thank you Del. You've helped more than you can know.

I know I can't prepare fully for what's to come, but I'm a control freak who likes to have organisation and structure (typical Capricorn). I'm struggling with the 'unknown' - like you said.

Can't say any more right now or I'll spiral into crying again! No idea what's gotten into me today! :redface:

No Probs Toni. Structure and organisation are definately a good thing in this case.... and some days you've just got to let go :lol: Have a good night

Hi Toni, Its me!!!!;);)

Kane's story is here somewhere if you want to read it.....:D

Umm, some tips....
Take him easy clothes, but old ones... they get a little bloody....

They put Kanes drip in his foot instead of his arm... It was great!! I could freely hold him and carry him with no cords and tubes.... for the lip op it was in his arm and a pain in the butt!!

If he is only having palate, no lip, ask if they will put sugeons glue over the stitches like Kane had. No splints, and they cant get to the stitches. Kane wouldn't put his hands anywhere near his mouth, it was too sore to touch... it was awesome not using splints...They dont use them much at all in America anymore, My surgeon goes over there to train up all the time... ;)

Try to stay calm... (like I did..:rolleyes:!!)

He will be fine babe.... all the best and I'll be thinking of you both....:D

Thanks me! ;) I'll definitely ask about the surgeon's glue and the drip in the foot. We see the hossy next Tuesday (24th) for the pre-op stuff.

Went to the ENT Dr & Audiologist today and he'll definitely need gromits in his ears. They'll do it while he's under for the palate repair which is good. He still has fluid in his ears (had it since birth) so it will be good to get that sorted too. Then we might be able to establish what (if any) hearing loss he's got. He seems to hear us fine - so I'm not really worried about that.

We're starting to have a think about what clothes to pack. I'll get an idea next week (I'm asking for a tour of the ward) of how cold/warm it is in there so I'll know what sort of clothes to pack. We've already decided not to push the cloth issue and just go with sposies while we're in there.

We're already trying to think of toys to take to keep him entertained (but I'm worried because his favourite passtime is to put things in his mouth. ie: shape-o bits, blocks, etc) We'll take some books because he doesn't suck on them and can play with splints on ??? probably?? NFI really! Other than that - I'm stuck on what to take to keep him occupied!

Thanks for your support guys. It's truly valued here (DH has been reading this thread too).

Jodie - BB have had a clean-up and Kane's story seems to have gone! :( any chance of a re-write???

hi Toni

Alex had drip in foot too - it is definately better than hand. Alex is into everything getting a taste too. The surgery didn't seem to stop this for him (ie he was twice as curious as to what was going on in there even if it did hurt) so I guess that was my main reason for liking the splints (even though they were a pain, Our surgeon is a 'splint guy' so we had no choice there anyway). I took soft toys and things we could hang (mobile and toys we could hang off the side of the cot) - also he seemed to like playing with his bottle :D. I know Alex was a little smaller but it is really just to get their attention and keep them entertained??! Hope that is of some help. Good luckwith it all.
Cheers
Del

PS you will probably notice a HUGE difference with the grommits - YAY

Toni the fasting was hard as we had to be at the hospital by 12pm for a 2.30pm op...had to fast him from 10am. He got grumpy about 1 ish so I just got him to sleep and he was ok! He wasn't on solids yet then so that may have made it easier!!

As for the sleeping in recovery he was out of it from recovery right through until the next morning as they keep them pretty doped up on pain medication!! He did wake twice for a feed...finished the bottle and went straight back to sleep...actually I think he was half asleep while feeding!! His surgery was 3 and half hours so they knock them out pretty good!!!

He will be able to play with splints on but just won't be able to put things near his mouth!! Books and things he can shake or bang will keep him occupied!! Mobiles are a good idea too!!

The unknown is the worst and there is nothing we can say that will take that fear away...just know that we all had that unknown fear and we all came through it fine!! You will be fine too!!!