Breastfeeding baby with cleft palate

[veepee]

Hi

My son has a cleft soft palate, and is unable to breastfeed. I'm expressing his milk and feeding him via a special squeezy bottle and using an SNS kit taped to the breasts. Has anyone had any success in expressing for long periods, as I am hoping to be able to actually breastfeed after his operation in 6 months time? I'm worried that the milk will dry up before this, though. I successfully breasffed dd until she was 15 months old, and am desperate to do so with ds.

Any help anyone can give would be much appreciated.

I'm trying Motherlove More Milk Plus to try and boost my milk supply as I've noticed it has been dwindling. Again, any feedback on this would be most appreciated.

Many thanks for any help anyone can give,

Vikki

Mummy to Ciara-Rose (22months) and Dylan (2 weeks)

There are a good few people on here who have successfully expressed for months. I'm sure someone will be along soon.

If you don't have an electric pump a friend of mine who is mainly ebm feeding swears by her Ameda Lactaline which is a double pump and quite quiet apparently.

Congratulations on the birth of Dylan!

HI there,a friend of mine did express for 21/2 years, she got some medication perscribed, that helped her milksupply...think kellymom website might have some info on this!

Thanks everyone for your replies.

I've been given a double pump, the lactina plus, by the local Cleft Team, which is fabulous. I've still noticed, though, that my milk supply is falling despite this, but reading 3easterbunniesandnomore's message re: friend expressing for 2 1/2yrs gives me hope. Fingers crossed that the pump and the More Milk Plus works!

Good luck to everyone, and if anyone else has any tips etc, please keep me posted.

Vikki

I will see if I can contact this friend to find out exactly what she did, or for her to get into contact wiht you....it s possible, just takes a lot of detremination....iykwim

There is a really good leaflet available from La Leche League called Breastfeeding a baby with a cleft palate - you can buy it the website www.lllgbbooks.co.uk or borrow it from your local group.

You need jabberwocky or Shivs. I think Shivs said that if she cluster-pumped in the evenings i.e every 2 hours her supply increased the next day. Also jabberwocky told me about breast compression. At the end of a pumping session you grab the breast at the back, near the base and press it hard between the fingers and thumb. It helps to empty them and you get a few more mls of milk. Both girls managed to express for 10 months or so IIRC.

vikki, congratulations on the birth of Dylan. You sound so positive and I'm sure you'll have the determination to carry on.
I don't have any specific advice, but just really wanted to wish you all the luck in the world

aarg - I just typed a really long message and then somehow managed to delete so forgive me as i'm now about to type a quick version of what I typed before!

I pumped full-time for 6 months here are my tips:

• good quality double pump - I had ameda lactaline with special adaptor so I could pump in the car using the cigarette lighter thingy..!
• buy extra sets of the collecting bits so you don't have to keep steralising all day long

-pump every two-three hours for the first couple of months, especially important at night in order to boost supply. -a special bra to hold the pump parts can help.

Here are some links: sorry this all sounds brusque, am so peed off with myself for losing long message!

hang in there, you are giving an amazing gift to your baby.

link{http://www.expressyourselfmums.co.uk/product.asp?group_id=2&affiliate_id=12+

link{http://www.breastfeeding.com/forum/postlist.php?Cat=0&Board=UBB4

the ivillage group was really helpful

can't even seem to get the bloody links in - what's going on? mind frazzled as dd2 up for the 5th time since going to bed..

\link{http://www.breastfeeding.com/forum/postlist.php?Cat=0&Board=UBB4}

www.expressyourselfmums.co.uk/product.asp?group_id=2&affiliate_id=12+

BTW vicky, you are a fab mum!

Hi,

I expressed for 4 months for my son who was born prematurely. I recommend:

High quality breastpump. I used Medela Lactina Electric Plus

Hands free bra for expressing. Got mine off ebay from lady in US called 'easy expression hands-free bustier bra'

Try not to worry about supply dwindling too much. Ask your doctor about prescribing you a course of domperidone (you can buy it over the counter as Motilium but is about £5 for 3 days' supply and you need to take for about ten days) which should boost your supply.

Any other questions feel free to ask!

Alice

Just seen this.....I expressed exclusively for dd1 for a year. My goal was a year and I was really pleased I made it - so it is possible, albeit with lots of hard work & determination. You sound like you're doing a fantastic job - and to be honest my life did seem like it was based around pumping & sterilising for the first 6 weeks. After this point, I found it much easier as I was in a routine.
I found the following book really helpful -= and called it my expressing bible :Exclusively Expressing Breast Milk by Stephanie Casemore. This suggests 2 ways of increasing your supply: power pumping and cluster pumping. Power pumping means frequent pumping throughout the day - pump every 2 hrs around the clock (ahhh!) for at least 2 days. It is trying to mimic a growth spurt. Apparently some women will spend a weekend power pumping and will get family etc to care for the baby so that they can focus on pumping frequently. Cluster pumping is pumping frequently but for shorter periods - eg pump every half and hr for ten mins. Do this for several hrs. The book also suggests a few reasons why your supply can appear to be decreasing but there are too many to mention here. To prove to you that it works I increased my pumping sessions from 5 to 6 over a week so that I would have enough milk to feed my daugher whilst I went on a hen weekend in Belfast. It was tough going fitting in another session but it worked. Hope this helps!
Let me know if you need any more info from the book....

Hi Shivs, was hoping you'd show up!

VP, I don't know if this would be any help to you but am cutting and pasting from the adiri breastbottle website.?m a lactation consultant at St. Joseph Medical Center. A couple weeks ago we had a newborn with sever unilateral cleft palate and lip. We were faced with quite a challenge on how we were going to be able to feed this baby. We first tried a couple special bottles for this type of defect but they were not working. Even though your bottle was not designed for this purpose, we decided to give it a try and it worked beautifully. We were able to get the baby to take an ounce with no problems. Your bottle design helped to fill up the baby?s palate and gave it a lip so that she could create suction. I wanted to let you know because I?m sure others who have contact with infants who have a cleft palate and/or lip are also finding it difficult to find a bottle that will continue to help the baby develop facial muscles while trying to get adequate calorie intake.

Deborah D. Leto CLE, IBCLC, RLC

It's a breast shaped bottle, one that we tried to get our bottle-refusing ds3 to take. He didn't! But just posting this in case it might work for you.

Hi ladies,

sorry for so long in reply. DS had a bit of a set back with a tummy bug and it's been manic here. He's much better now, although as luck would have it DD is now in tucks with the same stomach bug (never rains but it pours!)...

Thank you all so much for your messages, and kind words, particularly the info from Shivs1974, Jenkywoo and ChocChipMonkey (ooh, chocolate good, mmmm, chocolate good! ). It is so good to know that other mums have been successful. I'll def speak to the doc re: domperidone. The herbal supplement I've been taking has helped somewhat, but DS is such a hungry feeder (every 2 hours throughout the day and night) that I'm having problems keeping up...

I'll def check out out all the links posted, and will try to get hold of the book recommended by Shivs.

It's hard for me to try and get to grips with, as DS has other problems; he's been diagnosed with Stickler's Syndrome, and has problems with his eyesight and hearing as a result. Feeling a bit like I'm drowning at the mo, esp with DD being ill, too. All in all, it's making the whole bonding thing hard, as I found breastfeeding helped so much. Have tried holding him kangaroo style, so that we have skin-to-skin contact, but he's not so keen on it. Wriggly little so-and-so that he is...!

Anyways, it's that time of night again that means feed, express, feed, express, feed, express, so must dash.

Will try and log in again tomorrow.

Thank you all again,

Vikki

Oh, veepee, what a terrible time you're having! But at least you know breastmilk is great for tummy bugs, very gentle on the digestive system. Sorry to hear about your ds's other problems, am amazed you find any time to post at all!

Well done Veepee. My SIL didn't breastfeed her ds, who had cleft. She had enough problems just keeping milk in him. So I am mightily impressed. Well done you. Hope you get loads of support to help you - I'm sure you will here.

No advice, but just wanted to wish you good luck!

Sounds as though you're doing an amazing job