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.

 

A Little Stroll To The Concourse…

This afternoon we were allowed to take Asa for a very brief walk to the concourse area! A very special neonatal unit nurse, Minny, arranged this for us after we noticed a pushchair in the storage area in the nursery and asked her about it. Today was the day! It felt very strange bundling up our little man in his personalised blanket and using the hospital pushchair, but we felt so proud pushing him down the long corridor. He still has his NG tube in so we had to be careful. We were under strict orders to bring him back after 15 minutes.

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Asa wrapped up, ready for his first ever glimpse of the world outside the neonatal unit!

Waiting in the concourse was his sister Emelia, Nanny Guy, Nanny Shaw and Grandad Shaw. How pleased they all were to see him!

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Special Mothers

I recently started to follow and regularly read a blog called Downs Side Up: http://www.downssideup.com/
It is inspirational, full of positivity, hope, encouragement and a collection of resources.

This little piece by Erma Bombeck is also on Downs Side Up. I’m pinching it too!! It’s really moving. I don’t necessarily agree with all of the theology as I haven’t been able to process it spiritually, but nevertheless, at this point in time while I am struggling to cope with my baby having Down’s syndrome and him still being in hospital, it has been really helpful, which is why I am including it in our own blog. I hope the author doesn’t mind. I strongly dislike the word ‘handicapped’ that she uses, but because it is not my writing, I cannot change it, so I apologise for this word. If this helps just one person, then its purpose is accomplished.

It makes me smile to read the following piece, but it also makes me cry. So as Hayley at Downs Side Up says, “grab a cuppa and sit down to read this… You may need a tissue…”

***

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

 

Finally He passes a name to an angel and smiles, “Give her a handicapped child.” The angel is curious. “Why this one God? She’s so happy.”

 

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

 

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. She will never consider a “step” ordinary. When her child says “Mummy” for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air. God smiles, “A mirror will suffice.”

~ Erma Bombeck

Our Little Light

Today has been an emotional day. The hospital rang to say that Asa’s hearing test had been done this afternoon. He passed in one ear but not in his other. I can’t remember which way round it is. This doesn’t necessarily mean a permanent hearing loss in the ear – it could be fluid in the ear, a faulty test, or some other problem – but I’m afraid terrified he may be deaf in one ear. I know that this is not the end of the world, yet I have been in floods of tears. We have been told that around 50% of those with DS have vision and/or hearing problems, and 50% don’t. We’ve been hoping and praying that he fell in to the latter group. I had my mum and cousin around for lunch earlier when I had the phone call, so it was hard to remain ‘normal’ while wanting to run and hide!

For some reason, that phone call has really upset me. All day it has been on my mind and tears have pricked me eyes throughout the day. The thought of our precious son suffering any kind of medical problem is almost too much to bear. I don’t want him to have any hearing loss. I don’t want him to have any vision problems. I don’t want there to be anything wrong with him. No-one would wish any difficulties on their children. It’s triggered off fears of a more difficult life than imagined when I fell pregnant so easily this time around. Obviously life with two children will be harder, but I get so fearful of how much more difficult life might be, now that we know Asa has DS. Part of it is the ‘unknown’ that is so scary. I wish with all my heart I wasn’t so fearful and negative.

I was watching a bit of ‘Glee’ on TV today while Emelia was napping. Will, the choir leader, goes regularly to visit the children’s cancer ward in the local hospital. Each time he goes in he takes his ukulele and sings to, and with, the children. Will leads them in a beautiful rendition of the following song:

“This little light of mine, I’m gonna let it shine,
This little light of mine, I’m gonna let it shine,
This little light of mine, I’m gonna let it shine,
Let it shine, let it shine, let it shine!

Hide it under a bushel – NO! I’m gonna let it shine.
Hide it under a bushel – NO! I’m gonna let it shine.
Hide it under a bushel – NO! I’m gonna let it shine.
Let it shine, let it shine, let it shine!”

I started crying again at this point. Seeing all the beautiful characters singing along was really moving. I realised that Asa is like our little light – we’ve got to let him shine. Let him somehow shine out the love of Jesus for the world to see, for God’s glory. I will not ‘hide’ Asa under a ‘bushel’. God has a purpose for our precious son. He doesn’t make mistakes. He will one day fulfil His purpose for Asa for all to see.

I tweeted this today:
“This little light of mine, I’m going to let it shine!” – Asa is our little light to shine in the world to reflect Christ’s love & goodness.

 

Yes there will be challenges ahead, but this little boy (in addition to our 2 and a half year old) will bring much joy – not just to our lives but to the lives of others. He may lead a simpler life than his friends but we pray that through him we can bring people closer to Jesus somehow – through the many doctors / hospital appointments, through celebrating his differences, through encouraging him to love Jesus with all his heart, through being a little light in the world. Both our children are little lights of ours and we do pray they will shine out the love of Jesus from their hearts, that all may see Him in them and want to know Him more…

Asa needs love, protection,and encouragement to reach his full beautiful potential, and his little flame will burn ever more brightly as he gets older and learns different things, especially just how much he is loved, not just by us, our wider family and church – but by the Creator Himself. xx

(NB. All babies now have this newborn screening hearing test shortly before being discharged from hospital, so while it’s been an emotional day because of his potential hearing impairment, it’s also positive because it means he may be home soon! Although not trying to get our hopes up too much).