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Original poster

OK need advice, 14 week old, 2 holes in her heart and not feeding

28 replies

katz · 17/03/2008 20:21

my little niece has 2 holes in her heart and isn't feeding very well. She's breastfed but not feeding for more than 5 mins at a time, she really needs to feed more.

is the first milk really the low cal stuff?

what more can they do?

OP posts:
avenanap · 17/03/2008 20:23

They really need to contact the hospital that is caring for her if she is unable to feed. She will become very weak very quickly. I would do this first thing.

Original poster
katz · 17/03/2008 20:28

shes in hospital, just looking for advice to help my sil.

OP posts:
avenanap · 17/03/2008 20:29

They should be feeding her via a tube through her nose to top up the feeds. What are they doing?

Flight · 17/03/2008 20:32

Your sister in law could put her to the same breast next time. I think that might mean she then gets the hind milk? There are people who know their stuff on here, I wish I was one of them. Hold on because I'm sure someone can tell you from experience x

Flight · 17/03/2008 20:32

Well done to your sil by the way for bfing.

avenanap · 17/03/2008 20:33

She can express some and the nurses can feed it to her via a tube. It sounds like she's too weak to feed so they can do this to make sure she's getting the right amount. They really should be doing this already.

geekgirl · 17/03/2008 20:34

yes, they should have a cardiac liaison nurse they can contact, who should be their first port of call.
Is your niece on any meds yet? Maybe she needs to be looked at by her cardiologist, heart babies don't always follow the expected pattern (for example, when my dd2's heart defect was diagnosed at 10 days we were told she'd have surgery between 3-6 months, but it ended up having to be done urgently when she wasn't even 2 months old because she was deteriorating so quickly).

Anyway, speculating here doesn't really help, I think this calls for professional help. Good luck

geekgirl · 17/03/2008 20:35

oh, she's in hospital? I'm also surprised she isn't being tube fed in that case.

Original poster
katz · 17/03/2008 20:42

think they are trying to avoid using the feeding tube. She has ben feeding her at the breast then topping her up with expressed milk in a bottle.

If anyone has experience of having a 14 week old tube fed then please do post it here and i will pass it on.

she was only diagonosed a few days ago so this is all still very new.

yes she is on some meds, can't remember which.

I'm sat here stressing about this as i can;t get there to see them all, they live a plan ride away. Hoping to get out to see them after easter.

OP posts:
Original poster
katz · 17/03/2008 20:47

oh forgot to say thanks!

OP posts:
avenanap · 17/03/2008 20:54

I have worked in a childrens hospital and have tube fed many babies. Normally they are fed via a bottle/breast first and then the remaining fluid is syringed into the tube (tube goes down the nose, into the stomach) to get it into the babies stomach without them having to suck. It's helpful for babies that are to weak/can't be bothered to suck. The nurses can abb up how much fluids/feeds the baby has had to make sure they are drinking enough.

Original poster
katz · 17/03/2008 21:00

thanks, i guess the babies aren't too keen on this though?

looking to be able to reassure them that this isn't going to be to horrible for the baby.

OP posts:
lenny101 · 17/03/2008 21:01

I would def agree BF first then tube EBM. Sounds like the little one is working hard but i'm sure they have their eye on her. What a lovely aunty you sound.
x

avenanap · 17/03/2008 21:02

It's not nice but it doesn't hurt. They have to be held still though and this can upset them. It's better for them in the long run though because they need to measure what's going in. It's just a soft tube.

lenny101 · 17/03/2008 21:06

Ds1 didnt object to tube once it was in place (takes seconds to put in) and used to lick his lips as feed travelled down the tube (he thought he was swallowing it). Holding lo is still great idea though. Food AND comfort best thing ever.

Original poster
katz · 17/03/2008 21:06

thanks, will suggest that they get it all explained to them, that it doens't mean she can't still breastfeed her. She has been expressing so has lots of milk in the freezer they can give her.

Do they put the tube in each time or is it left in place?

she generally falls asleep after her feed so hopefully the tube feed after won't be too bad.

i have sent them some chocs to try and cheer them up a bit, oh and add to the calories in her breastmilk!

OP posts:
lenny101 · 17/03/2008 21:09

Left in place. Really, once in place lo will not feel pain or even discomfort at feeding

lenny101 · 17/03/2008 21:11

Sending good, healing thoughts your families way. x

Original poster
katz · 17/03/2008 21:12

thanks

OP posts:
Saggarmakersbottomknocker · 17/03/2008 22:23

Hello katz - my dd has significant heart problems and was tube fed for a long time (from 14 weeks, for about a year). She could barely feed orally at all. Once the tube is in they leave it in and the baby can't feel it. I've had one myself too.

If your niece is having EBM they can also add fortifiers to increase the calories in the milk without increaing the volume that she's drinking. Some babies with heart problems are fluid restricted so are only actually allowed a certain number of ounces but with extra calories added.

Is she having surgery soon or will they be taking her home again and having surgery in the future?

geekgirl · 18/03/2008 07:17

katz, my dd2 was tube fed for 2 months from 7 weeks onwards, almost all of that time she wasn't able to or allowed to breastfeed (not able to because she was on a ventilator, and then not allowed because she'd ended up with a very rare condition that meant she couldn't digest the fat in breastmilk for a while).

I expressed during that time, and we had absolutely no problems going back to breastfeeding fully afterwards.

I found tube feeding an absolute godsend really, so much easier than trying (and failing) to get enough nutrition into a very weak and poorly baby orally, and stressing about it. There's enough other stuff to really stress about when you've got a baby with a heart defect. Putting the tube in isn't terribly nice for them, but once it's in place it really isn't a problem.

geekgirl · 18/03/2008 07:28

the Children's Heart Federation do a little leaflet on tube feeding.

Another thing I forgot to add - we were told that because the heart has to work so much harder, babies with heart defects burn a lot more calories than healthy ones, so it's a double whammy really and really extremely difficult if not impossible to get enough milk into them by breastfeeding alone.

Original poster
katz · 18/03/2008 09:32

thank you both for that info, i will pass it onto my brother.

She is staying in hospital for a few days so they can get her weight stable, she had the tube put in last night and had extra EB milk through the night, so hopefully this mornings weigh in will bring more positive news. They are going to add extra calories to the ebm and the hospital want them to keep expressing. which again is great as they were keen to get to the 6 month mark exclusively breastfeeding.

Once she has reached 6 kg she will be going for surgery to close the biggest hole, they are then leaving the smallest one as it should close on its own once the extra pressure on it goes.

I just want to go and give my bro a big hug, but he's not a huggy kind of person, so sent him chocs instead!

OP posts:
Saggarmakersbottomknocker · 18/03/2008 19:35

I'm sure chocs will be much appreciated katz!

I so agree with geekgirl about the tube. It was a real bonus for me especially in the beginning, taking away all the stress about getting calories into dd.

We have a saying 'calories to survive, not to thrive'. Hardworking hearts really do need much more calories than normal and I think the fortified bm will make a real difference.

Original poster
katz · 18/03/2008 19:40

i hope so, have managed to track down the bottles that they wanted and can't buy where they live, so glad to be useful.

Just waiting for an update this evening, just hoping she is continue to improve

OP posts: