Transitioning from ng tube

[oki]

Hello
my 6 week has a severe heart condition, is on several medications and is on a feeding tube. He can feed orally but the doctors want him to grow , he’s in the 9th percentile they also don’t want him to get warn out feeding. He’s on 3 hour feeds through the tube which is similac mixed with a very small amount of EBM. When he’s not sleepy I will try him on the boob and he has a good latch. I’m expressing every 3 hours but I’ve come to the conclusion that my body just doesn’t respond well to expressing and 30ml is the most I’ve ever expressed.

my question is does any have any experience of something similar? How did you transition from the tube? The doctors don’t ever want to discuss it. I’m starting to thing bfing won’t be possible and I would really like us to have a more normal life and would consider a bottle. The salt team and dietician both seem very opposed though.

please share your experiences.

Have they given their reasons for their opposition? I haven't had your experience but even with a healthy full term baby I found pumping extremely difficult. Have they offered any support for you to be able to express more or have they just said that they'd prefer you to pump than offer formula without offering support?

Cardiac babies find it harder to feed and some of the professionals think a bottle will be too fast and salt think it’s bf is best for oral health. The baby is having formula that’s what similac is and it’s mixed with my ebm. They’ve offered ever bit of advice on increasing supply but nothing works. I’ve spoken with 7 different professionals.

Oh and Domperidone and fenugreek have done naff all. But my question is about transitioning not milk supply.

We had a similar situation with one of ours. Our solution (suggested by the paediatrician) was to use the ng tube for mechanised overnight feeds only. There was a machine which we set up at bedtime, and a steady amount of milk went into the baby for 10 hours. Then I ebf during the day. I managed to keep breast feeding until he had his big cardiac surgery several months later, and was able to express enough to feed him all through his ITU stay.
I really hope you find a way to make this work for you, and wish you all the very best for the future

My little one was ng tube fed due to a brain injury. It is such a stressful time and I just want to send you some love. I too struggled to express a decent amount of milk but transitioned to breastfeeding and we are still going now at 11.5 months. It is worth knowing that you can express very little and still have a good enough milk supply to feed a baby from the breast. I think the stress really affects your ability to express.

There is a supportive Facebook group called breastfeeding the brave. Where someone might be able to give you advice. Are you at home or in hospital? If you are at home you could try a bottle. We transitioned from the tube by offering breastfeeding first and if she had not fed for 10 minutes we would top up with a bottle or an ng if she was sleepy. There is a chart that tells you how much top top up by for the amount of time you have breastfed. We wanted to get her off the ng so we used a bottle for the feeds where she was too sleepy to breastfeed and she eventually dropped the bottle.

I don’t know if anything I have said is helpful to you but I wanted to reply because it is the most heartbreaking thing to go through and your life gets taken over by milk.

Thank you @cherwellblues thats a really interesting approach. We have the pump but have been using it every 3 hours. My husband is keen to ask about this at our next appointment. Can I ask how long did it take to transition company from the tube? Also we’re you waking up to express in night to keep your supply up?

@ElephantGrey101 thank you so much for your response I think only people who have been through it truly understand. I like your approach. I know that he’s getting way more milk when he bf’s than I can express. were you also administering medication through the tube? How long did it take you to fully transition off the tube? Again thank you for sharing your experience it really is appreciated.

Sorry oki, no criticism was meant at all. I probably very ooorly worded what I was thinking which is usually Women are told to BF but offered little support.

I can see that you're getting support and now have other posters who have been through what you're experiencing. I'll bow out now and wish you and LO all the best

Other than a short time as a baby my experience of tube feeds in a child have been much older so I can help much on top of what has been said.

but there is a great group on fb if you are on there called tube feeding your child UK. Which will probably have more people with similar experiences.

what I will say though is it does very soon become your new normal so try to go with the flow as much as you can. Easier said than done I know.

What pump do you have? My baby was in NICU for 3 months and solely tube fed for about two and a half of them. I pumped every 3 hours and got a decent amount of milk that way, but I did use a hospital grade pump. I was shocked how little a Medela swing got. Also did power pumping.

But on the actual transition to breastfeeding I wasn't allowed to try for a fair while because the effort that it took was so much more than the tube feeding that they felt it was a misuse of the energy he had. Once they felt he was strong enough I had someone from the speech and language team there to assess his swallow and determine if he was getting enough. Initially he only had the energy to feed from me once a day, but did that well enough to mean that we skipped that tube feed entirely. I gradually built up the number of feeds he could manage and did a lot of breast compressions to help him. I didn't want to bottle feed as I was worried he'd develop a preference and breastfeeding was really important to me, so once they decided to do a 24hr trial I couldn't leave the hospital again until he came home as they refused to fit the tube again. Was a bit of a surprise when I was only expecting to be in for a night! He's currently 9 months corrected and I'm typing this as he feeds.

It’s ok @SiouxsieSiouxStiletto i didn’t think you were criticising. I think people often conflate the two subjects. When I’ve asked the professionals about transitioning I’ve ended being spoken to about milk supply rather than my question.

@Sirzy thanks for the tip on the fb group.

@Merrow thanks for your response I’ve got a lansinoh pump and I used the medela in the hospital. Breastfeeding is important to me but I’m getting pretty worn down with the tube feeding, attempting bf, and then expressing every 3 hours.

I pumped three hourly day and night for thirteen months for my ds. I used omeprazole to increase my milk flow. I wanted him to bf but it just wasn’t possible for him due to severe heart condition. Hospital regularly asked me to use bottle milk but I refused and fortified my own milk instead. This meant he got all of the nuttients he needed and I was content he was getting my milk with antibodies etc. He wasn’t tube fed until after his first major surgery but I got my milk into him by various methods including syringing it into side of his mouth, letting him lap it off a spoon, v early spoon feeding from four months with my milk mixed into high Calorie foods including double cream and mango. I also used a little tube over my shoulder down into my nipple so he was able to get my milk without actually having to suck. Basically I used whatever technique that worked that day depending on how his breathing and tiredness was.
My ds sat below the centile charts but we got him there.
Hang in there OP, it’s a hard path but you will meet many lovely people along the way. My son is now in his twenties and currently doing well.. take whatever help you can get and remember to self care when you can

In answer to your question, no, I didn't get up to pump, but I more or less fed all the time during the day. I had the sort of sling where baby could lie down, and left my clothes open, so feeding could go on at any time, and I could still get myself some food etc.

Re transition from the tube. He went into hospital for definitive surgery, was tube fed a bit in ITU and on the ward, but by the time he came home we had got him breast feeding again.