New here and looking for support

[chunkymum]

Hi,

I'm new to mumsnet and am hoping to get some support from this board. I apologise in advance for the essay!

I am mum to two 27 weekers. My ds is 3 and my dd is 22 weeks old (9 weeks corrected).

Ds has very mild spastic diplegia cp. He has just started at ms nursery and we are currently going through the statementing process. Ds is loving nursery and is a very happy little boy.

Dd has been out of hospital for 12 weeks now. We had her paed appointment on tuesday and it didn't go very well. Dd's growth is very poor. Her weight and length are now well below the bottom line on the charts. She weighs 6lb 4oz. Her head is on the 25th centile so paed wants to keep a close eye on this in case it is a problem. Paed has also mentioned dd having a ng tube for a few weeks if the weight and length don't improve. She said about 12 hourly tube feeds overnight. Dd is breastfed. We have tried topping up with ebm via a bottle but dd can't cope with the bottle and chokes and goes blue. Paed has said that this is because of co-ordination problems. I am feeding her at least every 1 1/2 hours during the day and every 3 hours at night to try and improve her weight as she goes too long if left to feed on demand. I am literally force feeding the poor child! We see the paed again in 4 weeks time and a decision will be made then.

Paed is also very concerned about dd's arching, poor head control and lack of co-ordination. Dd is also very unsettled and cries most of the time when she is awake. She seems constantly uncomfortabe. She has severe reflux and is on gaviscon, domperidone and omeprazole (was on ranitadine but changed to omeprazole on tuesday). Tbh, reflux seems to be under control but paed has said that she definitely wants to rule this out as the cause of the arching. She has also referred dd to the CDC for a full assessment and for a cranial ultrasound.

I'm so stressed about all of this. Paed has said it is too early to say what could be causing the problems and that we might get more information from the CDC. I was just hoping that things would go smoothly this time round after what we went through with ds.

Sorry for the self pity, it's just been a shit week.

x

[Dev9aug]

I can totally relate to everything in your post, brings back memories and not in a good way. It's great that they have started her in omeprozale as that will help. Ds2 was a 27 weaker and cried non stop for a months flyer coming home. After ruling out reflux, they prescribed him with aptamil pepti 1. It is for children with a milk protein allergy.

This combined with the reflux meds seems to do the trick. This was back in march. He also had a lot of coordination problems, spilling more milk than he actually drank. I can assure you it does get better, he is now 11 months old and is back on milk products and eats 3 meals a day. He is also off the charts so now he can tolerate milk products, they are going to prescribe milk with extra calories to get his weight up.

[Dev9aug]

Oh, just hang in there, it does and will get better.

[Dev9aug]

Did she ever use bottles at the hospital. We found with ds2 that for the first few months he would only take the disposable bottles from the hospital, so we bought a whole lot of them, off course as soon as the two boxes arrived, he decided a normal bottle will do just fine so we have got a whole box full of them. if you want to try them, let me have your address and I will post them to you.. We got them from //www.sterifeed.com.

The other option is a brand called NUK. We used them with ds1 and these were only ones teats he would take. They have an orthodontic teat which is supposed to be similar to breast feeding I think.
If there is anything else you need to know, just ask on here or PM me. Best wishes.

[chunkymum]

Hi Dev9aug

She had the same problem with bottles when she was in hospital. She used to go blue and need a blast of oxygen. I've tried NUK ones at home and we have the same problem. Think I just need to except that she can't manage bottles at the moment as it's just not safe. Thanks for the offer of the bottles though, it's really kind of you

Has your ds got a diagnosis? These 27 weekers are trouble aren't they?!

x

[Dev9aug]

Yes unfortunately, he does have a dx, they suspect CP. I read your comment about hoping that things will be smooth this time and had to smile. We got sucked in with exactly the same thing because , we actually have ds1 who is a 24 weeker. and we still went ahead with ds2, madness. I look back and wonder what were we thinking.. Touchwood, ds2 is wonderful now though. We just have to wait and see how he turns out.