Bye Bye NG Tube!

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Asa’s NG tube has come out! At last! After almost 4 weeks of Asa having many wires, lines and monitors attached to his tiny little body, this is the last to be removed. This little tube kept him alive when he was too poorly and tired to feed. Now little man, it’s down to you – show the doctors you’re ready to come home. Show them you are strong enough because you have God on your side.

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“Please Lord, bring our son home soon. I want to be able to look after him myself, cuddle him when I want, feed him and change him myself. I want to go for our first family walk as four Shaws. Oh, let it be soon Lord!”

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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.

 

Great Is God’s Faithfulness

After his pea-green sick incident earlier this week, Asa had an x-ray which didn’t show an obvious cause for the bileous sick, so we still don’t know what caused it. Doctors initially thought a problem in the bowel, or an obstruction. But he is putting on weight and when he was last weighed he was 6lb 13oz! Progress is being made, albeit slow… Patience has never been my strong point.

Asa is now back in the nursery, having been moved to the HDU (high dependancy) after that awful bright green sick. A step in the right direction! He was started back on feeds more slowly this time & is still on 2 hourly feeds, mostly through his NG tube,He has been started back on feeds more slowly this time and is still on 2 hourly feeds, mostly through his NG tube, but he has taken small amounts from the bottle – to date he hasn’t been too keen. He is still very sleepy. Last night the nurse said she was going to check with the doctor & see if they’ll allow him to try 3 hourly feeds. This is good because he should be more hungry at feed times and may therefore take to the bottle better, but its also a bit of a worry as he may not tolerate the larger amount of milk in his tummy… I’m a bit scared the green sick will make a reappearance! Asa is having the last of his antibiotics today, as far as I know, so all that’s really left to sort now is his feeding, but as he struggles with the bottle at the moment, he won’t be allowed out of neonatal unit until he’s feeding well & the doctors are happy.

Thanks to every single one of our friends who have commented on facebook, tweeted, texted, rang, babysat Emelia, encouraged us, sent cards and most of all thank you for EVERY prayer that has been lifted up for our precious son. When we’re too sad to know what to pray, we know dear friends are standing with us, praying with us and for us – we’re so grateful.

The following verses from Lamentations have been on my mind a lot this morning… My dear friend, Ellie – who has faced her own heartache and worry over her beautiful twin boys – also texted me a portion of these verses my second day in hospital when I most needed them… I know God is good. Always. Without exception. Without blame. He is faithful, even when we are not.

Lamentations 3 v 19 – 26 (NIV):
I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”
The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord.

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This reminds me of the hymn based on these verses…


Great Is Thy Faithfulness
(Thomas Obediah Chisholm, 1923)

“Great is Thy faithfulness,” O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.

“Great is Thy faithfulness!” “Great is Thy faithfulness!”
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

Summer and winter, and springtime and harvest,
Sun, moon and stars in their courses above,
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!