Cleft palate? When will my little boy get some luck?

[whistle]

Sorry to sign up just to have a rant. I've been reading the forum for a few weeks now, but today is just one of those bad days.

LO was born at 24+6, 800g, after a horrible 3 weeks of bleeding, surgery and bedrest. His twin brother fought hard but passed on at 8 hours old. Our eldest survived though, through sepsis, bleeding on the brain, bleeding in the lungs and an unclosed valve in his heart, along with all the usual troubles with his kidneys, more blood transfusions than I can remember etc etc.

He spent a month in intensive care and then moved up to HDU. He's 10 weeks old now and looks like a completely different person.

So at about 8 weeks old we *finally* get to try breastfeeding. This was something I've so been looking forward to since early pregnancy. I've been pumping every 3-6 hours for over 2 months now, despite wanting to throw the damn pump out the window 3 or 4 times a day.

Only now I've noticed a deep groove down the middle of his palate, and after a week and a half of trying, he's just not getting it. He sucks a finger really well, but just can't work out what to do with a boob.

I asked the doc today and he examines LO's mouth, mumbling cleft palate, and says that he thinks he's got a hole in the cartilage, but that the skin over the top is intact. He doesn't think it's a problem at the moment, and it shouldn't affect BF. The nurse though, later on, obviously trying to be nice says 'Sometimes babies have an abnormal palate and it's fine, it just means they can't breastfeed and have to have a bottle.'

I feel like crying. It's not 'just having a bottle'. I've been expressing for 10 weeks. I feel like I wasn't woman enough to carry my children to term, or save his brother from dying, but I thought I might have been able to just breastfeed for him. I'm going to speak to the BF nurse tomorrow, and I'm hoping the doctor is right and he'll be able to feed eventually, but I've been searching things and the latching problems of the last 2 weeks all fall into place with an abnormal palate.

Also, from what I can see, the palate forms early in pregnancy, so this has nothing to do with him being preterm. I know my little boy has been so lucky to survive so far, and he has worked really hard to get where he is, but I just wish he didn't have to struggle through so many hurdles to get there. I just wish life would throw him a break for once.

Some days I'll look back at all this and think it's all just part of life with a preemie and we'll all pick ourselves up and move on at his own pace, but some days I just feel so tired, and like the worst mother in the world.

 

[fola_e]

Congrats on the birth of your son, he sounds like a true little fighter

Sorry to hear about his brother, I'm sure he's always alongside his twin, encouraging him through all the tough times he's faced

I actually don't have any experience with cleft palates but didn't want to read and run

I can understand somewhat what you are going through, my LO is in the NICU right now, born at 26 weeks and is struggling with his breathing as his lungs are underdeveloped. It sounds like you have been through a hell of a lot more, so first off, give yourself a break. You are going through an enormous amount of stress and thinking have failed in anyway just isn't true.

Keep your head up, keep doing all you can for your bubba, he needs you to be strong for him.

Much love x

 

[bob2331]

First off, welcome and congratulations on the birth of your twins. I am sorry that your boy couldnt stay, i know only too well the pain you are going through. My twins were borrn at 21 weeks (Connor) and 24 weeks (Harry) Connor became an angel aged 2 hours old and Harry is now 13 months old.

Please dont feel like a bad mum, you done nothing wrong and none of this has been your fault, i know this wont really help because people say this to me but i still think differently..

I havent had any dealings with Cleft palate but hopefully the BF nurse will be able to reassure you and help you. I expressed for 13 weeks for Harry but i didnt cope very wel with everything and had to stop so i never got the chance to give him a proper BF until he was 8 months, he was put on a bottle with part breast milk and part formula and then when the breast milk run out, straight on to formula.

You have done a great job with the expressing and hopefully you will be able to carry on and you will be able to breast feed and i hope one of the mums on here can be off help with regards to the cleft palate, they really are a great bunch of mums and have helped me more then they will ever know.

If you ever want to talk or have someone to moan to, please PM me.

Take care and take each day as it comes, but rememeber, your not a bad mum, not at all and i look forward to hearing all about your little man getting stronger and becoming a boob boy xxx

 

[toothfairyx]

Hi, sorry to read the sad news and what a tough time you have been happening, but congratulations your son is doing well. We had no issue with cleft palate, but I know clinicians who deal with this in the area.
Cleft palate as you describe should hopefully be not too hard to deal with, and Oxford is an amazing centre for this. When he is a bit bigger an orthodontist can take an impression of the roof of his mouth and make something called an obturator to seal the hole and help with sucking prior to closing it. As it is just his palate it is a lot easier to deal with than if the cleft runs more through the lip.
Please don't be disheartened if you have to use a bottle - you can still fill them with breast milk so all the expressing you have done is not wasted. With hindsight, I wish I had opted to keep expressing and bottlefeed my baby as it would have been much easier on both of us.

 

[25weeker]

Hi

Congratulations on the birth of your boys and I am sorry to hear you lost one of your little boys.

I had twin girls at 25+2. Holly was 659g and rebecca was 640g so your lo was a great weight. Rebecca fought for 1 day but unfortunately her lungs were not developed enough. Holly had a grade IV ivh, sepsis at 4 weeks, a broken arm at birth due to being born breech. She is now 17 months /13 1/2momths corrected and doing great.

I don't have any experience with a cleft palate but my daughter has a very high one which I assumed was caused by ventilation. At the beginning I struggled to get her to latch so I used nipple shields. Without these we would never have mastered breastfeeding. I started weaning her off them around 6 weeks corrected which took a month. Have you tried a nipple shield?

Easier said than done but don't be too hard on yourself you are being strong for one twin while grieving for the other. There was times I didn't even want to get out of bed and wished I could just sleep for a day.

PM if you ever need to chat.

Good luck & take care xxx

 

[EmSmith1980]

Welcome and huge congratulations.

My daughter was born at 23+6 and was ventilated for 5.5 weeks, she has a deep groove and a very high palate because of this.

Sorry to hear it's causing problems with feeding. We never got that far. Anya was in hospital for almost 20 weeks and my milk started drying up after 13 weeks, so unfortunately I can't give any advice.

Having a baby in nicu is the hardest thing I've ever done. Take a day at a time. You will get there eventually.

The girlies here are so fab. We're always here if you fancy a wee chat. xx

 

[vermeil]

Hello and welcome! Congratulations on the birth of your twins! I'm very sorry that your smaller son lost the battle - it must be so heartwrenching to deal with, with everything else going on...

I understand what you mean, I felt the same way - like a bad mother for not carrying my baby to term, then for having trouble breastfeeding etc. There are no words to convey how much I loathed that breastpump!! Expressing like that all the time was soooo hard with everything else going on! I did it over 500 times and thought at times I was going bonkers it was so much work So a big huge kudos to you for sticking with it, it takes a LOT of strength and determination to do so.

Latching issues is very common and can in the majority of cases be worked out. Just remember your hard work is providing your little one the best possible nourishment - whether he is breastfed directly, drinks from a bottle or receives it by a tube. He's receiving precious antibodies, developping an immune system that only forms later in the womb. Just for that you're doing great!! preemies that receive breastmilk typically have shorter hospital stays, great motivation right there

I second the nipple shields, my baby wouldn't latch without one at the beginning, then eventually he was fine without it. I know some 'breastfeeding friendly' hospitals are against them (gah don't get me started on that) but insist on trying one - they're a few dollars at the pharmacy and can really help. If you can pick up a few sizes and a nurse can help you choose.

Please dont hesitate if you have any questions... It sounds like things are very hard right now but you're right, over time things will get easier and you'll have time to grieve

 

[whistle]

Thankyou so much.

Reading over these this morning has nearly made me cry for completely the opposite reasons to last night. I'm going to keep this thread saved somewhere so I can look at it on the crappy days.

Thankyou for all your advice. I know our situation is bad, but there are people going through all sorts of horrible situations, and I'm lucky in other ways to have a little bubba who's doing so well. I'm gonna talk to the breastfeeding lady, I'm gonna try me a nipple shield, and if it's all done and dusted after that, well we gave it our best shot and there are hundreds of millions of babies who've got on perfectly well with the bottle instead of the boob.

As for his palate, I'm sure it can't be that bad, it's certainly not bothering him at the moment, and we'll cross that bridge IF we come to it.

Seriously, thankyou so much.

 

[HCB]

Congratulations on the birth of your twins and I am so sorry you have had to go through the heartache of losing one of them. We know only too well what that is like as I gave birth to identical twin boys at 27+4 and we lost the smaller one 18 days later when he got an infection. We had had problems earlier on in the pregnancy so he was more like a 24 weeker and weighed the same as yours.

I also felt pretty useless because I hadn't been able to keep them inside me long enough or been able to do anything to prevent the death of Morgan. As well as this I had problems with my milk supply and found out 3 weeks post partum that I had retained placenta. Despite all this I expressed for the whole 3 months Lucas was in hospital because I was determined to breastfeed him.

It's been a little while since you posted so I don't know how things are going now but I hope you kept on trying because it looked like you had only just started at around 32/33 weeks. Babies don't get their sucking reflex until 34 weeks so try not to put pressure on yourself and just keep trying to help get him used to it. Don't try too many times in a row though as he may get worn out.

A couple of things we did was when Lucas went to the breast but didn't really do anything or didn't have much of a feed, he would be given a tube feed top-up but whilst he was still at the breast so that he could start to get the idea to associate a full belly with the breast and to also get a bit of a taste and smell of breast milk still. Also, when he had a tube feed, without a breast feed, he would have a dummy to suck on so that he would start to associate sucking with having a full belly.

We stuck with it and he became a really good feeder. Unfortunately, I never really ever got much milk so he has only ever had 1 or 2 breastfeeds a day and the rest bottles of formula. The breastfeeding also helped him be able to take a bottle well (we had been doing it for about 4 weeks before we introduced a bottle) and we watched other parents have a nightmare trying to get their babies to take a bottle (and hadn't breastfed). Unfortunately, bottle feeding isn't always a bed of roses either.

I hope things have got better for you. Please feel free to get in touch anytime.

Helen x

 

[whistle]

Hi Helen, and everyone else,

I was thinking I should update - but as you know it's a long old day getting to and from SCBU!

I was hoping that if someone else in a similar situation saw this they'd take hope from it! We kept trying and kept trying. The lactation nurse didn't suggest nipple shields, but just said give it time and lots of skin to skin contact, which we did. For some reason, one day, going through the same routine as before, a nurse showed me a different way of supporting LO when trying to feed and he came out with this BIG jaw and chomped on and fed without stopping until he was sick. (His Dad's a glutton too!) Since then we've gone from strength to strength, and the lactation nurse says he's a natural breastfeeder. I'm going in to attempt 3 feeds a day, and he's sometimes too tired to do that, but it's going good.

Of course there's other things to stress about now, but at least we've got the moments of calm when we're feeding to counterbalance that. It was just a case of him needing more time to grow and get the reflexes.

Thankyou all again for your help and kind words. x