Cleft Lip and/or Palette

**Nettie** · February 14th, 2009, 05:55 PM

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?

**leesha** · February 14th, 2009, 08:53 PM

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

**leesha** · February 14th, 2009, 09:01 PM

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)

However post op(that night) he was very upset and restless having the splints on and the drip in his arm

...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!!

**adele** · February 15th, 2009, 09:29 AM

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

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'

- 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

**Nettie** · February 15th, 2009, 10:34 AM

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.

**adele** · February 15th, 2009, 01:46 PM

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.

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

**Nettie** · February 15th, 2009, 02:17 PM

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!

**adele** · February 15th, 2009, 04:29 PM

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

Have a good night

**Pretty Butterfly** · February 16th, 2009, 06:50 AM

Hi Toni, Its me!!!!

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

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..

!!)

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

**Nettie** · February 16th, 2009, 05:36 PM

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???

**adele** · February 17th, 2009, 06:30 AM

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

. 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

**leesha** · February 22nd, 2009, 07:36 PM

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!!!

**Nettie** · February 23rd, 2009, 07:21 PM

Thanks Leesha

Our pre-op appt is tomorrow afternoon - so I should know more then. Hopefully that will eliminate some of the 'unknown' factor...

He loves his books - sits there turning the pages like he's reading! Both DH & I are big readers and book lovers (I'm sitting in our library with probably more than a thousand books now), so he's bound to catch on! Most of the other toys he likes to put in his mouth...

He's developed a snuffle today so I'm hoping it's cleared by morning otherwise they may postpone surgery - which will put me on a rollercoaster of despair. So fingers crossed everyone!

I realise that we just have to grin & bear it for a while. Just hoping he's back to normal in a couple of weeks and we can get on with life. Be glad when he's recovered to be honest...

**adele** · February 23rd, 2009, 07:50 PM

Fingers crossed all goes well tomorrow afternoon Toni ... I am sure it will. We didn't do pre op or things like that as we had to travel so far - I am sure you will be relieved once over. Just looking at you photo at the bottom of your post - aren't htey getting big??!! Alex has just cut his fifth tooth (so far so good there as they told us to expect the unexpected) andhesays Mum (quietly happy about that)

Good luck and big hugs to Liam.
Del

**Nettie** · February 24th, 2009, 07:14 PM

Thanks everyone for your support.

Appt went well today - all my questions answered.

Surgery only takes an hour... the intern who interviewed me (best way to describe it really) pulled a funny face when I mentioned surgeon's glue! She'd never heard of it and said 'it's not used here'. So splints it is... for 3-4 days, they reckon. For most of that time he'll be pretty sedated or drowsy so hopefully it won't be a huge issue.

Had a tour of the ward - looks lovely. I have hope that DH will be looked after as he's staying in with Liam during his hossy visit. I have to go back to work on Wednesday but have the following week off for when he comes home.

One of us will get to hold him while they put him to sleep in theatre.. we haven't decided who yet. But I'm glad we've got the option.

He has to fast from 6am, so we'll get him up at 5am and feed him - at the hospital by 11am so we're kinda hoping that will distract him from being hungry... Apparently the surgery only takes an hour so it should be all over by evening.

I'm feeling a bit better now. Only nerves left to kick in over the weekend!