Overfeeding due to NG?

 Are all tube fed babies overfed? Honestly, reading a book I found recommended on NG and NICU feeding communities I think the answer is yes. 

Since Rosie has been born we have been battling to keep her interested in oral feeds. She has dr browns specialty bottles that uses a compression based valve to allow her to suckle and get milk without actually sucking and using suction. 

Since she was a baby we have given her 10-20ml in the bottle and it would generally take her 20 mins to have half or so of that. Sometimes she would get the full 20ml but that was rare. We started out offering it to her once a day while she was at hospital as advised by the speech and language therapist. But when she was discharged after seeing her feed they advised we could use our own judgment and offer it a couple more times during the day only when she was alert and interested (as when her airway was at risk at this point, she needed to be alert to avoid the risk of choking while coordinating her suckle, swallow and breath rhythm). We started offering it to her 2-3 times a day. At the start she would take it in small amounts, but after she was home for a while she would start rejecting it completely (likely due to the NPA being too short and causing discomfort while swallowing)

Since her NPA has been out she has been taking bottles like a champ. We have been offering her them every feed and she takes to them every time and she is slowly increasing the amount she takes from her bottle each day. So comes the question... when can the NG come out for good?

We have been told Roslyn MUST have 150ml per KG to meet her calorie needs by dieticians and specialist nurses and pretty much everyone involved in her care. But since being home and her taking bottles well we stopped topping up her feed by that amount via NG, to see if that hunger would make her want a bigger bottle the next time.

She has gradually took more and more via bottle as she hasn't had her belly magically filled up by mummy, daddy and a bunch of syringes and she has slowly been learning about hunger (I don't think she ever felt hunger before as we were on a strict schedule and a strict calculated amount). But when allowed to decide how much she wanted to take in - it was a lot less than the 150ml per KG amount we have been told to fill her with her whole life. 

She ended up pulling her NG out (naughty girl!) and as she had been going on an upwards trend of having bigger bottles we decided to leave it out to see how well she would do. We asked for help from our dietician and asked what is the actual minimum she can consume before we get worried (as I was expecting her to start low and grow - didn't expect her to suddenly take in everything one day one). We were told 100ml per KG by a dietician at Colchester hospital,  but then 120ml per KG by a dietician at Broomfield hospital. They both stated this was for hydration purposes. I haven't found out what the discrepancy is due to between these two Essex based hospitals... surely babies in Colchester don't have lesser fluid needs than in Chelmsford??

Alas, we did not argue - they are professionals after all. I then let my life be consumed with trying to get all the milk Rosie needed down her. The first day I would constantly be offering her a bottle. She would only have a small amount... so I would offer it again not long after... she only had a small amount again as she had only just eaten. I felt obsessed with making charts and calculating how much she has had and how much time she would have left to get the dieticians minimum. I would think about how many more feeds she could squeeze into the remainder of the day and then at the end of the day I would despair over how she was short. 

That first day with no NG top ups she only managed 375ml out of 630ml (if we went by the more accessible 100ml per KG target). I was worried and arranged to have the NG reinserted the next morning - but in hindsight I didn't allow Rosie enough time to adjust. This was the first day in her life she never had any NG top ups and probably got overwhelmed by the hunger which she never truly felt before. The dieticians and cleft teams did not give us the guidance to expect her to not hit targets straight away or to keep an eye out and if she has enough wet nappies and shows no dehydration signs then it may be good to give her some more time. While 375ml is low, if she is alert during wake windows and producing at least 6 wet nappies a day, her fontanelle isn't dipped then I feel we should have been encouraged to try another day. As in the short term 375ml will not negatively impact her if she increases the next day and the day after. I feel slightly let down we weren't supported more from the teams around her.

Anyway, the NG went in but we tried to continue with mostly oral feeds with top ups only once or twice during the night. She went better and better the next day and the next getting up to 560ml from her bottle alone within days! She started being more consistent with the bottle sizes she had. Previously she could have a 20ml bottle then a 100ml then a 30 ml one. It varied a lot - but now she is constantly taking 70-80ml each time and that average bottle size increase each day! (See my chart below)

She is very close to the minimum of 100ml per kg so I am now wondering... does she need to hit that exactly before the okay for her NG to come out? What if she is close? How do we know if having her NG out gives her more space in her throat to swallow more comfortable and thus taking more - so by leaving it in are we haltering her progress?

The other issue that has been occurring is Rosie is accepting bottles from me but will sometimes reject them from my husband or will take substantially less with him/dribble more/be more fussy. I also have been finding myself battling to get an extra few ML down her at feeding times - it makes it upsetting for her and for me and for my husband. Feeding her has become an awful experience for everyone involved. 

While searching for help and answers I came across this book: 

Your Baby’s Bottle-feeding Aversion: Reasons and Solutions. By Rowena Bennett ( https://www.amazon.co.uk/dp/B076PWRHH2/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1)

I found it recommended in NICU/PRS/Tube fed baby communities and have only seen complete and utter praise around it. 

Reading through I felt tears. I could see Rosie in many of the stories. The effortless vomiting, the being scared to move her after a meal incase of spitting up, the tactics parents find themselves to pressure their babies to eat more (I ashamedly am guilty of some ie dummy trickery. I let her suck on her dummy then quickly wack it out and slip the bottle in to get her to have more. I will wiggle the bottle in her mouth when she has stopped to prompt her to drink more) All of this isn't okay and all of this is things I have shared with professionals and didn't realize how not okay they were until I read this book. 

At Rosie's feeding clinic I sent videos and described how fussy she can be eating and how she will cry and unlatch halfway through and explained about how I need to wiggle the bottle or trick her with her dummy to get her to take more. I even sent this video below to them. Wondering... is this okay? Is this normal to have to trick your baby to eat? The response to how she is doing with this pressure I have put on her was essentially well done she is taking a good amount, keep it up and oh try and get her to have even more.... there was no talk about how psychologically I may be enforcing her to become averted to her bottle or feeding. 

Reading this book was hard for me. I felt guilty. I have been putting my daughter through discomfort when she fed. But this is what I have been told to do by all the professionals around me and her. I have been told well done and keep it up and make her drink more. She was having such conflicted reactions to feeds. Some times she would love it and do well - other times not so well but I had pressure of meeting a certain target and wrongly I then put that pressure on her to have more of her bottle with tactics like above. I didn't realize these tactics were putting pressure on her and likely leading to an aversion until I read this book.

But when you look into it breastfed babies cannot even have the amount they consume monitored... how do we know they have had enough? because they stop when they have enough and are trusted to instinctively know what their body needs. Other bottle fed babies who intake less than the UK recoded amount wouldn't have their GP rush to get an NG down them - so why is Roslyn expected to keep hers in until she hits their perfect amount? In actual fact, babies around me have often had less than that when asking friends - they never even had a little concern over it as if the baby gained weight and didn't show dehydration signs there was never a worry. 

Australian guidance for a baby Roslyn's age says 120ml per KG is the recommended amount, so why does UK suggest it is 150ml per KG? Rosie has shown to us she can pace herself well, she can take a good amount from her bottle (she's taken a record 110ml yesterday) so now we need to give her a chance to take what she wants and no more. If you look at the reflux section in my blog and see the effortless vomiting video... I truly believe that symptom was due to overfeeding and not reflux. Since she has been taking most her feeds from the bottle and having less than the 150ml per KG amount each day, she has been much more comfortable, made more developments as we haven't been scared of moving her due to spit ups (therefore she has had more tummy time and more playtime). While I agree there is a point she needs to reach for fluid hydration - I think it has been wrong so far for our girls case. 

There is just so much conflicting advice for babies who have had NICU care/ special needs. The NHS website even stated bottle fed babies should be guiding their parents on how much they need, not the other way around. So why are we still consistently being told targets to reach now it has been established Roslyn's airway is safe and she has shown she can take her bottle well? Why are the professionals not supporting us to trial following Roslyn's lead? 

From (https://www.nhs.uk/conditions/baby/breastfeeding-and-bottle-feeding/bottle-feeding/advice/)

Right now we are following the books suggestions and giving Rosie a chance to decide how much she wants and when she has had enough. I'm super hopeful that in a few weeks she may be wireless as we follow this and I encourage any other parent/caregiver in a similar situation to consider purchasing this book - it has been such an eyeopener for me. I am trying to not beat myself up too much. I am a first time mum with no experience to compare this too and the only advice I have had is professionals advice. I am not saying to ignore the professionals around you and I'm not saying that is what I will do. I just think it is worth remembering the professionals are following the book and our baby hasn't read that book. You know your baby and if you don't agree with the professionals then challenge them. 

To end on a little positive here is a video of a really good night feed showing how well she takes her bottle without her NPA and how well she paces herself and give her self breaks.