new born with cleft palate.Need a little advice

[ledkr]

Hi,i hope i dont offend anyone on here as i appreciate my dd problems are very minor compared to some of the brave children on here.I wasnt getting much respnse on the other threads.
i had my dd 6 days ago by section,whilst in hospital i pointed out to the mw that her throat seemed "too open" i was fobbed off,she also wouldnt feed well and sucked and sucked for ages but hardly made a dent on the milk level.We left when 3 days old and she was still taking a max of 30mls per feed and was drowsy.Next day the community mw picked up the cleft in the soft palate and sent us back in as she was also very jaundiced by now.She had photo therapy and we had the specialist nurse in to bring us the mam bottles and teats.We have a specialist appointment on the 18th.
We are still in shock but gratefull its not more serious,she is beautifull.Is feeding better but still drowsy and will not take it if she doesnt want to.Shre has gained a little weight and her jundice levels are still below the treatment line.
I just wondered if others with similar experience could offer us a little advice.I have noticed her mouth often looks mucousy and dry and she has a raspy sound in her throart and often coughs,i presume this is the milk catching in the cleft and have read about offering a little water after the feed.Little things like this would be in valuable to us at this time,thanks.
ps i went on the forum but im not ready for it,hearing aids etc need to get her thriving first.

Hi, I don't really have much advice as my little boy, who had a cleft in the soft palate has been tube fed since birth due to other issues he has.

Just wanted to say not to get too worried by what you are reading. My little man did have grommets put in when they fixed his cleft at 9months old, but his hearing has been absolutely fine so far. Try just to take each day as it comes and love and enjoy your little one as much as you can.

Here's to a happy healthy future for you both. xx

First of all congratulations on the birth of your baby.

You have come to the right place for friendly advice and although I can't offer you any I am sure someone will be along in a bit who can.

Everyone on here is really friendly and loads of people have experience in many areas.

I hope you get some advice and that your baby does well.

Good luck

Oh Ledkr, congratulations on your new baby. How did the section go? More calmer then an EMCS I hope?

No advice about the cleft I'm afraid, but my DS3 was drowsy for a good 7 days after he was born by ELCS.

went ok thanks the worst thing was trying to get the cannular into my arm 5 times ouch.
Very positive experience but defo the last

Hi my DS2 was born with complete cleft lip and palate. We were offered surgery for his lip initially at 11 weeks old and he had the rest of his repair at I think 19 weeks (he has other complex difficulties, so sorry for being a bit vague). Our local children's hospital has a cleft team made up of plastic surgeon, specialist cleft nurses, SALT who specialises in feeding difficulties for children with clefts as well as CLAPA staff who helped us to find a range of bottles, cups etc to buy. All were so helpful. He did have surgery at a later stage to have gromets inserted as his hearing was a bit down but this worked very well and his hearing is now absolutely normal. All the best and congratulations!!

Hi and congratulations.
My DD has a cleft palate too that wasn't discovered until she was born. Its a bit shocking that it took your professionals 3 days to pick it up though.

Anyway, here are some practical ideas: Get her cot elevated at the head end. We put fat hardback books under. Sleep her on her side. Your cleft nurse will have said this I'm guessing, but it helps with the raspy breathing. If raspy breathing continues, ask the nurse about saline drops. We used them a lot - a drop down each nostril when asleep - and it helped clear everything out for better sleep.
Tickle her toes to keep her awake during feeds. Keep the house fairly cool and don't over dress her during feed time. If she is taking ages (1 hr) each feed then get on the phone to the cleft nurse now, don't wait for the visit.
Make sure you put lots of effort into winding her. Cleft babies have a tendency so swallow loads of air and are also prone to reflux. Try and feed her as upright as you can and keep her upright a while after the feed to keep the milk down.

Tried to keep it short (I'm sure your tired). Don't worry it'll all be fine in the long run. My DD is 3 and is ace. If you want to join a forum in the future, FaceForward is really friendly and seems to be used more than CLAPA.
Just shout if you need anything.
x

Hi, My son was also born with a cleft which was not picked up until he was three days old. I take it that you have been put in touch with the cleft palate team in your local area, and they in turn have let you know about clapa? Once you have a bit of practice with the bottles it becomes second nature, after the op I found feeding my son with normal bottles really weird. Don't worry about the op it's ok and not fit a while yet. Anything else please ask or pm me, I know how good it is to talk to someone in the same boat!

boboma thanks that is precisely the info i am after,not met cleft nurse yet was presuming her number will be with the appointment info.Shall i go ahead with the tilting and side sleeping now?Also her little mouth looks so gunky when she wakes,i did try the water but am frightned to fill up her litle tummy as she only takes 50mls per feed and we need to clear the jaundice.

boohoohoo i was searching for you cos have seen your posts,my baby brain has not allowed me to recall how to pm someone.

I have a feeling i will need you two in the coming months,we are ok and know its not the end of the world but there is stil this underlying sadness that something is wrong with her.did you feel like that,its particularly hard as you are emotional and tired after birth anyway.

I had breast cancer when i was very young (26) and spend a lot of time with other young sufferers so i know it really is nice to speak to people in similar situations.

She'll be alright. Its ok. It will get sorted. Cotton wool balls in cold water for the drowsiness worked with my very sleepy newborn.

Hi, it is a shock I know, but all I could see was my gorgeous little boy. He slept on his side cos it's safer for them (presume that's the same advice in all areas, we are under the south Thames cleft services) we were given a machine to listen to his breathing(so sorry can't remember what actual name is!) which reassured us. We were also told a very small amount of water after feeds might help but didn't find we needed it. I think within a couple of weeks this will become so normal for you so don't worry. I'll pm you my email because as the weeks go by you will have lots more questions! One thing I'll say is how fantastic the clinic is, my son is only two, they know him and us and it's very welcoming when we go. He will be seeing them until he's 18 or 20 and there are quite a few different professionals involved. It's amazing how many children are born each year with a cleft but my mw and hv had never met any! Me neither!

Hi ledkr and so many congratulations to you!

My DS' story is a little different but as part of his issues he has Pierre Robin sequence (non cleft) which means amongst others he is under the care of our excellent cleft pallet team (they really are amazing).

He has slept side to side since his birth 10 months ago and a baby sleeping bag has seemed to help him keep still(er) at night.

There are also lots of reflux medicines and even an amazing minor op that can help if necessary - don't worry about them now, but be aware that your medical guys will keep an eye on it all and will help dd as necessary.

We have also been constantly advised about keeping the cot mattress on a slant, so would go with that.

You just rest up after your op and enjoy your little one :)

I'll PM you with my email address too...

Hi there - did answer your other thread but just in case you don't see it...

My DS was born with a unilateral cleft lip and palate that was picked up at my 20 week scan. He is now a very happy healthy 7 year old, and the results of the repairs have been great. Our cleft team has been brilliant and really supported us over the years - the cleft nurses especially are a great source of help and support about feeding. In the early days I focused on feeding little and often as DS had to work that bit harder to feed and got pretty tired out. Also enlisted my mums help, who was great at preservering with him when I was tired out. Try also not to get to stressed out about weight/ centiles etc. - easier said then done I know! :-)

hi all,been back in hospital since Wed as Delilah developed a cough and breathing probs.turned out it is aspiration pneumonia ie.fluid on the lungs.cause unknown but could be reflux or simply from inhaling a little milk.Is on iv anti biotics and is beinf tube fed untll Monday when the salt team are going to come and observe a feed.Also being treated for reflux.
Terrible to see her so poorly,i am gutted have cried for 2 days,am 8 days post section and hospital only give you meals if breast feeding but provide not even a kettle for drinks or a microwave to heat food.Nearest resturant is a good 10 min walk,get no parking permit i think its disgusting tbh.
Have come home for the rest tonight and dh is with her.Has anyone else had this at all or can anyone reading this offer me any advice.I have come home to her pram and steriliser etc.i feel utterly devastated and cant bear to watch her suffer so much.

ledkr have been lurking.

I'm really sorry all seems a bit dark for you now.

I've no experience of CP like the others, but just want to remind you that you have both been through one heck of a lot in the past VERY FEW days, not surprised you have hit a brick wall now.

it's night time, it's horrible weather, it's February, you have been through the equivalent of a nasty car accident, I feel for you

DH is looking after little one, and if she's roaring and unhappy now, she's at least safe & at home i nthe warm with her family, you are doing your absolute best for her

please, look after yourself, it won't be so bad in the morning, lots of sympathy

Just wanted to say Ledkr, hang in there.

This is just so much for a new mum to deal with and it's so hard to watch your little one suffer, especially when your life is made so much harder by not having facilities near etc when you need to be strong. Take advantage of any offers of help. Get friends or family to make you packed lunches (I used to take a cool bag and flask to hospital) or even keep the house tidy so it's a nice place to be when you're at home.

Having done the 16 weeks in scbu thing and going home every night without my son (you feel like you're leading two separate lives don't you!) your grief will fade as you get to know your wonderful daughter. Whilst this is an incredibly difficult time and will never leave your memory, it will fade and your daughter won't remember any of it.

I honestly felt talking to other mums at the hospital was the greatest help. Even if their children had different issues you were talking to people who understood exactly how unfair it all is and how you are leading a parallel life to other mums. You must take time out. Watch crap tv, anything. Will stop rambling now....

I am thinking of Delilah and you and your DH...and of course of your older DD. I will be sending positive thoughts to you all.

I hope Delilah is feeling a bit better tomorrow...so sorry you're having all this.

I hope you're asleep now...look after yourself as best you can.

Hi,
I am so sorry to hear that Delilah has developed pneumonia. I didn't want to say in my other posts that my little girl has had pneumonias (she was older though)and also had to be tube fed until 7 months old. With Delilah's diagnosis being delayed I guess that there was a chance that she aspirated some milk in her early days. You must be in a really dark place at the moment and all that I can do is send virtual hugs and send positive vibes your way.
I'm reassured to hear that the cleft team are visiting tomorrow. They will make sure that she is feeding safely by whatever means necessary and that is so important. The fact that she is being treated for reflux is also good. I know how scary it is seeing them ill though....
As others have said, lean on whoever you can to get through this. I am shocked that the hospital aren't taking better care of you :-(

Please let me know if you want to talk about anything - I really do sympathise.
Take care x

Just wanted to say, still thinking of you, Delilah and your family, hoping each day is bringing you better news and the help you deserve.

hi I was wondering if I could get some advice. I was told my newborn had a cleft palette to the back of his throat. we met with the specialist and she suggested for us to use the drop brown'sugar bottles which have a special valve to help with feeding however his issue is he aspirates if he takes too much milk. he's being tube fed at the mo so he is still getting fed but I was wondering if there was any advice antone can give me to stop him from aspirating when he takes a bottle. I am yet to try the MAM bottles