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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

3 month old has VSD - needs open heart surgery. Won't take Infatrini.

(8 Posts)
MatildasMumsie Mon 27-Jun-11 18:46:16

I'm very new to this but becoming a little frustrated with little intrest shown by health professionals and am hoping other mums (and dads) might be able to help by sharing their own experiences and advice.

My daughter is 14 weeks old and was diagnosed at 10 weeks with a large hole in the heart that will require open heart surgery. We are currently waiting to find out if surgery will be this friday or not. We're absolutely devastated that our little girl will have to go through this but realise we are very lucky as hopefully in the long run she will go on to lead a normal life.

At the moment her weight gain (or lack of it) is a major cause of concern. She is only 8lb 9oz and still wearing newborn clothes even though she has passed the three month mark. She was exclusively breastfed until four days ago when, following the advice of a dietican, I introduced two bottles a day of Infatrini (high calorie milk). However, she won't take the Infatrini and becomes quite distressed. The problem is not that she is been bottle fed as she takes expressed breast milk well from a bottle. Does any one have any advice? Or similar experience? Can you mix Infatrini with ebm?

Any help would be gratefully received,

Thank you!

Riveninside Mon 27-Jun-11 18:48:56

Does it taste disgusting? Dd was put on calogen at one point and its foul. No wonder she wojldnt touch it.
Could try mixing the two together. The next step might be an NG tube just to get her weight up.

MatildasMumsie Mon 27-Jun-11 18:55:34

It's very thick compared to bm and not quite as sweet. My girl knows what she likes and it isn't Infatrini. What was the calogen for if you dont mind me asking?

saggarmakersbottomknocker Mon 27-Jun-11 20:54:35

Hello matildasmummy

My dd has heart problems so I sympathise hugely with the weight gain issues. Like Riven my dd had calogen (and maxijul) added to formula. It was many years ago and the ready made enriched formula weren't as readily available. IIRC the maxijul was sweet but didn't affect the taste of the milk as much as the calogen

I'm sure you can mix in the infatrini with ebm if that would help her take more.

I post on the Heartline message board here. Do come over if you feel the need for more support - there's a whole section on feeding. Good luck on Friday if it goes ahead - the waiting is horrible isn't it?

MatildasMumsie Mon 27-Jun-11 21:10:16

thank you - the waiting is probably is the worst part at the moment. Just found the heartline board and it seems great. Will seek more advice on there now!

Tried ebm and infatrini mixed together but still no joy!

adriennemole Thu 30-Jun-11 15:23:15

Hi, My DS had surgery at 16 weeks for an AVSD and prior to that was given infatrini (which he hated) and then moved on to SMA high energy whuch you also get on prescription. He also had a nt tube to enable him to get to a decent weight for surgery he was about 8lbs 6 oz when he went in.
Good luck

adriennemole Thu 30-Jun-11 15:24:39

Sorry meant ng tube confused

jellihejj Sun 10-Jul-11 15:42:41

My 4 month old is to have surgery next week, as he has a VSD. We've just been been feeding him twice hourly (on demand) with SMA Gold extra hungry as well as breast feeding him and it's done wonders for his weight gain! he's now 12lb and seems to be gaining a pound every month it seems.

We were told that if he hadn't gained sufficient weight by a certain time that he would have to go on the infatrini, but it didn't come to that because of the milk we were using.

Hope that helps a little :s

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