NG Tubes, Expressing and Frustration!

P1090015Feeding Asa his necessary amounts of milk has been one of his biggest issues. Not to mention one of our biggest frustrations. He just finds it so exhausting and falls asleep after a few sucks of a bottle. Because he has also been fighting two infections, he has been too weak to even try the bottle, so until recently, nearly all feeds have been through his NG tube. While I was in hospital after Asa’s birth, I collected by hand colostrum (the first early stage milk) in tiny little syringes for Asa to have. It was painful at times but I knew it was the best stuff for our little man.

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Left: Expressed breast milk, EBM, in little syringes for Asa’s NG tube.
Right: Taking in the frozen EBM in a cool bag to store in the hospital’s freezer. We took it in every few days as stock of my EBM ran low.

I have ‘double expressed’ since the day I came home from hospital on the 8th July. The hospital is so supportive of giving babies breast milk that they loan out double breast pumps to mums with a baby / babies in the neonatal unit, until the baby is discharged. This is a fantastic service, (you pay a £10 deposit which you get back when you return the pump), and if it wasn’t for this, I doubt I’d have continued with expressing this far. I have a pump that we bought for Emelia, but it is so noisy and slow! This hospital pump is fairly industrial (and pretty much silent!) – I feel like a cow being milked… Ha ha sorry any male readers! I want to do this for as long as possible as I know that apart from praying for Asa, there isn’t a great deal else I can do for him. We will use formula milk when he’s home, once we’ve used up the freezer store!!!

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The ‘dairy’ drawer in our home freezer!!!!

Asa has started to take a couple of ounces of breast milk via a bottle, but is very sleepy and dribbly with it. This is partly to do with low muscle tone (hypotonia), which is a very common characteristic of Down’s syndrome. It means Asa’s muscles are a bit more relaxed than most ‘typical’ babies so it’s harder for him to make the right shape with his mouth.

The Speech and Language Therapist (SALT) team have been involved and we have tried a variety of techniques, such as letting Asa have a few sucks and then withdrawing the bottle, and we’ve tried different shape teats. It’s hard to know what’s best for him, and even the SALT and nursery staff disagree. SALT are not only for speech and language problems, but also deal with feeding and swallowing issues, just incase you were wondering!

Every time we visit, we are encouraged to try Asa with a bottle of expressed milk (if it’s due when we’re there!). These are precious times, as it makes us feel more like we’re parenting our own child! We also do the ‘cares’ (nappy and clothing change, face wash, and bedding change if required). We are starting to feel like pros at knowing where things are and feeling ‘at home’. However, most of the evenings we’ve been in to see Asa, I have needed to express milk! It’s like breastfeeding and needs to be done every few hours. So I often *need* to express while at the hospital (mums, you know what I mean!!!!). I even have my own hospital expressing set and Milton jar! So out comes the screens around Asa’s cot, a pump is wheeled out, the top goes up, muslin cloth covering me as best as possible and off I go, while Jon has a cuddle with our boy, or even better gets to do the ‘cares’ and feeds. I used to feel so self conscious expressing in public, but after 3 or 4 weeks it has become a normal routine for us.

 

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