We asked the ladies on our Facebook page about their experiences of tube feeding their baby, and what words of support they would offer to others.
Here’s what they said:
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Don’t panic when they pull the tube out themselves! My heart nearly stopped the first time I saw them yank it out, but the nurse just slid it right back in!
It’s only a short term thing, and you know they are getting what they need.
Just remember this is for the best and will make a huge difference, stay calm and have a god support network to help you through
I was worried about the whole thing as I knew very little about what was going on all but in the big scheme of things he needed feeding and the people in scbu are so gentle and they know exactly what they are doing and will talk you through the whole process:) Don’t panic and ask questions and have support.
It may be a tube but if you can start expressing straight away you know they are getting the best start with breast milk
Doesn’t matter if you can’t get much milk to start as they don’t need much!
If you’re holding the tube don’t lift it up too fast or bubs gets the milk really fast and this does not result well!!
I tube feed my baby for 3 months, we tried BF but it never worked out well
Don’t let the tube go in with out a plan on how to get rid of it!
My son was ten weeks prem so the feeding tube was the least of my/his worries. To be honest it didn’t worry me he needed to be fed and that was how it had to happen. First time seeing it put in was a bit hard but got used to it as he was always pulling it out. If you can’t breastfeed my advice is not to beat yourself up about it, I did and just made it worse you need to be relaxed for your milk to come in. So just chill and get what you can. I pumped for 6 months getting 50mls per pumping and gave him what I could along with formula and he is now the healthiest 1 year old
A scary time as baby has a tube (and like us, lots of other monitors as well) but as the others have said, it’s the best thing for them as they get everything they need whether it be EBM or formula. It’s only for a small time in the grand scheme of things. It makes you squirm watching the nurses pull tubes out/put them in!
*it won’t be forever. You bubba is getting bigger, stronger and better every day and won’t remember a thing about it when, they are older so it’s OK!! Stay strong for them*
It’s good to use a pacifier while being tube fed, so that baby starts to develop the sucking reflex (depending on how early baby is), and will associate sucking with getting a full belly Also helps those little tongue muscles for when baby is ready to BF.
Bubba needs to be fed so it is best for them – even though it wasn’t how you would have planned for it to go. Stay strong and have plenty of cuddles!
Babies born prem like my first don’t have a sucking reflex so pacifiers good for this. I used to put my son inside my t shirt while he was being tube fed or kangaroo cuddling this helps to bond with baby as you’re not feeding them yourself and they get used to your smell.
You do what you do in order to give baby nutrition, you can still breast feed afterwards and deliver baby breast milk through the syringe takes a bit more time and commitment, but hopefully it is for a period of time only.
I just tried to remain positive about the whole thing and just expressed and expressed as it was the one thing I could do to help him grow. My baby is now huge and thriving. Although a bumpy start it is a distant memory now.
You don’t have to breastfeed your baby to sustain them or to be a ‘good parent’. That is the message I would like to share with all parents.
My daughter was tube fed. It was the last thing I ever wanted for her, she was also formula feed in the hospital (tube) and breast feed. If it happens it happens. She is an awesome 22 month old who I would be lost without
My daughter was tube feed for five months and then just as my milk had depleted from so long pumping she decided to breast feed for the next five months!
I’m expressing as I’m writing this, my 4 month old is at home and 100% tube fed. He is receiving only breast milk. I struggle daily with the fact I’m not feeding him directly, but I’m comforted knowing I can still feed him. As awful as it is, that tube is saving your baby’s life. Whenever my bib pulls his out I put it back for him. But I leave it out until his next feed is due to give him free tube time
Like many said before, this too shall pass, stay strong.
Use a pacifier to strengthen sucking
We would syringe feed while holding him close to my breast. The best thing my lactation consultant had me doing was pumping from the beginning with every feeding. I even had to hand express my colostrum into a spoon! Annoying but it got my milk flowing and supply steady so he’s only had my milk. (Strongly recommend a hands free pumping bra). Also, stay strong with your feelings and ask for help and advice. When my son learned to suck from his syringe like a straw and this was confusing him on my breast I looked for other options first before going to a bottle. We ended up using nipple shields with a SMS and as he got bigger and stronger gradually weaned him from those. After a few months, he was BFing on his own
My son first got his NG tube at 3 months after gaining less than a kg since birth due to feeding issues created by his birth & a swollen gland under tongue. He was bf however he was not successful at transferring the milk (managed till he was 2) & couldn’t take a bottle. It was the start of a very tough journey that he saw him get a MicKey button at 21 months as he wasn’t eating orally. By the time he was 2.5/3yrs he was 100% oral feeding after weaning him myself. He still has his button for meds etc. At the beginning the tube was a life saver then it became a part of life and still is today. One thing over the years that has helped me is getting in touch with tube feed families for support, understanding & advise.
I’m still in NICU at moment trying to get him off the tube so we can go home, my advice is to not rush them they will pick it up when they are ready, as much as I want it out I know it’s giving him my breast milk and helps when he is to tired to drink
My twins were in NICU and needed tube feeds for first 5 weeks and even though it may feel clinical sometimes you can still have cuddles and be safe in the knowledge they are getting the goodness they need to grow big and strong.
My second has been partially tube fed from 4 months old. Due to a liver condition he can’t absorb his food very well and needs far more calories than a normal child so he eats orally in the day and we tube feed him the rest of the calories he needs through a Mickey button in his tummy overnight while he sleeps.
The first month or two were the hardest and then it started to get easier. Anyone looking at long term tube feeding should definitely look at getting a gastrostomy – they are much easier than NG tubes. All the best to anyone starting the tube feeding journey xx
My son was almost 13 weeks prem, born at 27 weeks. He was NG tube fed for about 9 weeks. Once he was off CPAP and hiflo oxygen then he could get onto a bottle. My breast milk didn’t come in, he had a ‘shot’ a day for 8 weeks Neil I made the decision to ff. He took to the bottle really well with alternate feeds for a week then was on bottle for all his feeds. That meant he was ready to come home!
Even though it doesn’t look like it, it’s real feeding. This is what must be done for your baby to grow stronger so they can be healthy.
My baby had gastroschisis, so at 14days when we could feed her we had to use a tube most of the time and yes it is the best thing for them and don’t fret. Just have patience and it won’t be long before they are strong enough to have a bottle or boob. And that’s another thing even if your baby it a tubie at first that doesn’t mean that you cant try breastfeeding when they are strong enough , Carley was 3.5weeks after having tubes and bottles when I started BFing (had to express the whole time) and she BF till she was 6months
It is only a moment in time & things will change eventually. Stick with it you are doing a great job!
