Cleft Lip and/or Palette

[Pretty Butterfly]

Ok hon, quick run down....

I let Ad take him in, I was already a blubbering mess... glad I did, Ad said its really upsetting watching them go out to it... so just be prepared....

took about 2 hrs, but we had another lip reapair and grommits....

when we got to see him, he was trying to scream, but his little voice was all hoarse, and it was very bloody all over his face....

he took his bottle straight away, and fell asleep on my chest for a while...



he was EXTREMELY clingy, couldn't put him down to change his nappy!!

I was warned he will probably throw up all the blood swallowed during surgery, and he did, heaps, and I cried again.... but he felt much better afterwards and settled well...

after 10 hrs we asked to get the drips out and give him morphine by mouth, and they did... no drips or cords or anything!!!

he wasn't interested in food, so had different liquids... sustagen, milo etc...

left after 24 hrs and drove 6 hrs home!!! He done so well, I cried the whole time and Ad was great!!

Took a few days to even get custard into him, and he lost 2 kilos in that week, but he eventually started back up, and within 2 weeks was back to eating heaps (soft stuff) and within 4 weeks back to normal diet!!

Had pain meds for about 2 weeks.... Make sure you get some scripts from the hossy... we had to take him back to our local hossy for pain meds, but they had to confer with Westmead and it was all a hassle... but he was great with the meds, and we just slowly took him off them....

Ill jump back on if I think of anything else..... gotta go... she's hungry again....

[Nettie]

Thanks Jodie - that's a big help.

It seems I'm taking him in to theatre, so I'll do some mental preparation... however you mentally prepare for these things!

I'll get DH to read all this too - the blood will probably be upsetting for all of us...

I just know life will never be the same again...

Got to go - he's stirring... thanks again everyone.

[leesha]

Toni.....bigs hugs for tomorrow!!

Will keep you in my thoughts and I know everything will be fine!!!

Let us know hen you have time and feel up to it how it all went!!

We will all be thinking of you!!

xoxoxoxoxoxox

[Nettie]

Thanks everyone for your fabulous support.

I'm beginning to feel trepidation, but I know there's nothing I can do that I haven't already done.

Thankfully the Nappy Hunt begins today so DH and I are going to spend some doing that this afternoon to keep our minds off it. If you don't know about the Nappy Hunt - go to diaperdecisions dot com - you hunt for icons on websites... good fun!

I've got some rescue remedy and valerian for myself and got the Brauer recovery tonic for Liam ... hopefully that'll keep things under wraps!

Will let you know the first chance I get near a computer how things went.

*mwah*

[Nettie]

*copied post*

Surgery went well. The Drs are pleased with how it all went so that's always good.

Me? Well, I'm home - alone - and not coping too well. I feel like I'm going slowly insane because I've left my boy in hospital (and my Husband) and this is the first time since he was born that I've spent the night away from him.

He's been quite clingly and dependent and neither of us got heaps of sleep last night (about 5 hours each - broken up) - as Liam will only sleep in our arms. So we took turns and switched every 2-3 hours. I feel REALLY awful that I've left DH there to deal with him while I'm home (have to go back to work in the morning) and I'm missing Liam like nothing I've ever experienced before.... haven't stopped sobbing since I left the ward!

I'll go back each night after work (around 1hour drive each way) and if I'm this unstable at work tomorrow, I might even be able to call in 'sick' to go early... I'll see what happens after a night's sleep.

On the upside (yes, there IS one!) - we got permission from the head Plastic Surgeon to use the haberman bottle to give Liam a feed around 6pm tonight. We tried to spoon or syringe feed him this afternoon (they don't want anything in his mouth) but it just really upset him as he's not used to it and didn't swallow reflexibly - so he panicked. He ate some pureed apples on a spoon, but the milk (formula) is what he really wanted. Also - the sucking action really comforted him. So we can now settle him easier and he has been playing and smiling as well as grizzling and crying!

Hopefully in the morning the pain management team will assess him not needing the morphine any more (he's on the minimum dose now) and we can remove the drip and oxygen and have him tangle free!

The splints on his arms are ticking him off a bit - but that's a small thing to deal with for now. They should come off in a few days.

Here's hoping DH has gotten him to sleep in the cot and is having some well earned sleep right now... Can I hear a 'Hell yeah!'??

Thanks again for everyone's support.

[Pretty Butterfly]

Oh honey...
You've done amazingly well!!!

I stayed with Kane, and sat there and cried and cried nearly the whole time too...

So glad he can have a bottle now!! Since Kane had the glue, he had it in the recovery room... I always wonder why there are so many different techniques around?? I think its done differently in qld too, and earlier...

You'll love it when the drip comes out... you can wander the halls with him and keep him occupied much more easily...

I'm sooo glad all is well... chin up babe, cry all you want, and wer'e always here hon....

[Nettie]

Thanks Jodie... I cried buckets yesterday and had a few teary moments this morning at work. Plus it's the 10th anniversary of my Mum's death today - just to top it all off!

He got the drip and oxygen off around lunchtime today and has been almost his normal self since. Playing, crawling and doing some sleeping!

He even slept a few hours at a time last night in the cot which is good because that meant DH could get some decent stretches of sleep in the bed. Yay!

Apparently the 'plastics' team (the surgical team overseeing his operation and recovery) are quite astonished at his recovery. They were even talking about discharging him tonight - but didn't get around to see him in time. Hopefully they will assess him tomorrow and all being well, I'll have my boys home tomorrow! Hooray!

However, tonight he was fussy with the bottle and then did some funny faces before spitting out a clump of what the nurse called 'packing and a stitch'. She said it happens all the time - but we were concerned that there's a problem - so we'll see what they say when they visit him tomorrow.

Well - best get to bed... another day of work and hopefully a pickup from hossy tomorrow! Keep your fingers crossed!

[Nettie]

HE'S HOME!!!

My little man's done an amazing job at recovering and he was discharged earlier this morning. Was home by 1.00 pm.

He's been a bit wingey and clingy - but that's all to be expected. You should have seen him in the car on the way home. Smiling and talking - he knew he was going home!

Am heading to bed now...

[leesha]

Ohh I am so glad to hear that it all went so well and best of all he is HOME!!! Yayyyyyyyyy
The hard part is over now hun!!!!

Just think no more food coming out of his nose!! Great stuff!!!!!

You guys have done soo well to get thru it all amd what a trooper being discharged already!! Aren't they stronger than we think?

Gotta Go Taj is playing up tonight and not wanting to stay asleep......first 2 teeth have come thru and he is crawling backwards so is forever sitting up in his cot.....Soo annoying!!

[leesha]

Toni just checking in to see how Liam is going??? And how you are both going also!!!

Hope everything is healing and life is getting back to normal!!!

Taj is finally crawling forwards...yayyy....now he is into everything!!

[Nettie]

Hi Leesha

He's doing great! He got a check-up with the surgeon last Thursday and got the splints off - which I reckon could've come off 2 days earlier...

Since then, he's been almost back to normal. Just getting the sleeping patterns settled down - which is the last thing to return to normailty..

We had a really rough night on the Friday night after we brought him home... reckon we had 2 hours (broken) sleep all night. Silly us - we decided to do it all together for support... so neither of us was human in the morning! We called on the in-laws on the Saturday to come & help and they looked after him while we had 3 hours kip... Yay for them!!

He's eating now which is fun! Mostly bread & some fruit... thinks it's a great game!

[lionsimone]

Hello everyone,

I just stumbled accross this website and wanted to join so i could introduce myself and share my story. My name is Simone and my son Aden was born on January 17th 2009, nothing had shown up on my scans but immediatly after my son was born one of the midwives noted that Aden has a soft palate cleft. He was fed with a feeding tube for the first 24hours after his birth but after an examination by a pediatrician we were able to try the Haberman bottle and he has taken to it just fine.
My understanding is in the scheme of things his 'hole' is not too bad and we have already met with many of the team at RCH Melbourne who have explained the surgery that will occur down the track. He has already developed fluid on his ears and will definetly need grommits, his hearing is also being monitored regularly at RCH and unless they deem it necessary to put the grommits in earlier they will do it at the same time as his cleft op. His hearing was fine at birth so we have been reassured that no long term damage should occur, its just that the fluid there now makes things sound muffled to him like he is underwater or on an aeroplane for example.

I have loved reading everyones stories on here and find it really comforting to know that other parents have the same worries and fears about their little bubs having to endure operations at such young ages.

So Aden is only 10 weeks old now so we certainly are not expecting anything to happen until at least near the end of the year but I really would love to hear about anyone elses experiences with the RCH, So far we have found all of our dealings with them excellent. Its also fantastic to hear your stories about starting solids, we have been so worried about how our little man will go and deal with the possibility of food coming out of his nose, But it really is amazing that they somehow realise to push it back into their throats, Once again I know thats still a fair way off too.

Anyway this is our story so far, really look foward to sharing more of the ups and downs. Thankyou all so much for sharing your stories its great for me as a first time mum to hear and be able to seek support and advice.

[leesha]

Just a quick Welcome lionsimone!!! You will find much needed support and advice in here!
Ask any questions you have and we will all endevour to help you out as best we can!!

I have been dealing with the RCH for the last 8 months and have nothing but praise for the team there...they are fantastic....you are all in good hands!!

Will chat later.......Taj is demanding attention and it's bath time!!!

[Nettie]

Welcome Simone!

Feel free to share in here - we're quite a supportive lot (as you might have read) and no question is silly...

We really haven't looked back since the op and my DS is happier than ever!

If you need some spare parts for your habermann - let me know. I have some collars, disks & membranes along with some of the bottle bases. No teats spare unfortunately!

Got to go.. he's stirring!

Good luck!

[lionsimone]

Thankyou Ladies for your kind welcome, It really is awesome. Im so glad that you guys have had really positive experiences with your babies ops.
We had another appointment at the RCH last week & are having another hearing test done next month, We have been advised that to help with Adens hearing it may be best to have him fitted with a headband that has a box at the back that allows sound to bypass his ears and send clear sound to him - have you guys ever heard of this or had it?? They like it to be fitted when bubs is around 5 months and keep until his palatte is repaired and grommits fitted, That way he wont miss any sounds and therefore help with speech later on. Will know more about it after the next hearing test.

Like you guys I think of my little man as absolutely perfect, I get a bit dismayed at the way some people take the news when I explain what Aden has..I get the oh you poor thing as a response at times and it really erks me, Seriously what is wrong with some people.

Nettie it would be great to take those Haberman spare parts of your hands, Let me know what you have and how much $$ you would like and i can transfer the money to you, that would be awesome.

Hope that your all having a wonderful easter with your babies and families. Xx

[Nettie]

LIonsimone: I tried to post this to you in a private message, but you're not able to receive them??? So here it is:

Hello!

All I have left is 2 collars (the rings that hold the teat onto the bottle), 3 disks with membranes (the thing that goes in the teat) and lots of bottle bases but no teats.

Let me know what you'd like and I'll send them to you (if you can give me your postal address!). All we ask is that you don't sell them for profit even when you're finished with them. We bought a bulk lot of a Mum in the US who asked us to promise not to sell them for profit, so we ask you too.

We won't charge you anything unless the postage is expensive. We're happy to pay basic postage and won't charge you anything for the bottle parts.

Look forward to hearing from you.

Regards

Toni (Nettie)

If you'd like to Email me, my email address is lewchips1@ozemail.com.au

[adele]

Hi Guys
It's been a while since i have been on here - busy busy ..... and ongoing network issues - Good to hear you are all doing well.

Welcome Simone - as everyone has said, this is a great place to find info and get support. It's great that Aden is doing well.

Toni - well done getting htrough everything - so happy that all is well for you guys. Liam is a champion Happy Birthday to Liam by the way too - thought of you guys on the 17th April when our boys turned one ..... they are growing up fast.

Jodie - I have wondered why the timing and technicalities vary so drastically from surgeon to surgeon let alone state to state too. Sometimes it seems like there is very little concensus on anything. the info and stats even vary from place to place. I am quite interested in this as it seems to make quite a difference to the 'difficulties', I am unclear if it makes alot of difference to the cosmetic outcomes??!!?? amoungst other things. Also interested in getting more involved in Cleft Awareness etc too as it seems that many people (around here at least) are still not sure about what clefts are or what they involve and cleftpals is based in brissy so not really a big influence. There are 3 of us up here with babies similarly aged and I have just made contact with another lady whose boy is older, but we have very much had to find our own way (and we are all using different surgeons (2 in Brissy, 1 in Townsville and one in Sydney)so if anyone has info or can point me in a direction to start helping others please do - that would be great.

Anyway guys gotta go - we are off to Brissy again in a few days for hearing tests, ENT checks and a speech assesment so lots to get organised.

Cheers

Del

[Nettie]

Hey there! Nice to hear from you!

Hope everyone is doing well.

It might sounds kinda funny, but Liam was being a bit of a goose in the bath tonight and was sort of 'cheering' at the ceiling and had his mouth open. I could see in and I noticed that the surgeons gave him a dangly bit at the back of his palate! I asked about this when we at 'cleft clinic' once and they said that it serves no purpose and that he wouldn't have one - so it surprised me!

He's just learnt to clap hands and is just so darn proud of himself he just has to applaud - and then check that we're applauding him too! Very cute!

He had his ENT follow up (from the grommits being put in during cleft repair surgery) and the fluid has all drained - yay! Anyone else have the issue of travelling for more than an hour (I know Jodie... ) then waiting for 40 minutes before getting into the appointment for five minutes before driving another hour and a bit home??? Couldn't someone local have peered in his ears??? Sheesh!