Cleft Lip and/or Palette

[leesha]

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!!!!

[Nettie]

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

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

[leesha]

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!!!
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!!
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!!!
xoxoxoxoxoxo

[Nettie]

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...

[leesha]

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!
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!!!


xoxoxoxoxo
Leesha

[Nettie]

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!

[adele]

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 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

[leesha]

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!!

[Nettie]

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

[adele]

Well done Leesha and Taj

[leesha]

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!!!!

Alisha
xoxoxoxoxo

[leesha]

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

[Smx83]

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

[Nettie]

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.

[leesha]

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!!!!

[Nettie]

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...

[Nettie]

*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...

[adele]

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 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