New Reflux Medication

Asa’s reflux seems worse than ever lately. To the point where I’m teary several times a day. I know the poor little lad can’t help it, and I feel so sorry for him. And for myself. And the furniture, carpets and the washing machine. Asa can vomit up to ten times a day. Yes, I know “all babies are sick”, but this is different. This is an illness: Gastro-oesophageal reflux disease (GORD).

A new online friend on Twitter, G, suggested a different medication for Asa to try. Her little boy, N, has experienced reflux and she is a pharmacist so has professional interest. Yesterday I took Asa back to the doctors to see about a different medication for him, Omeperazole. Thankfully the doctor agreed. Also, on the advice of G, my new friend, I also asked about a feed thickener for Asa’s milk / drinks which should help keep it down in his stomach (God willing!) . Again, the doctor agreed. Happy mama!

Today, Asa started his new meds. So far, he has not been sick today. It seems as though the combination of Omeperazole and Carobel (thickener) has already worked. The doctor warned it could take 2-3 weeks to find out if the new meds would be helpful. Only time will tell if it these meds really will make a difference.

Beaches and Sunsets Are Made For Each Other

Today, we spent the afternoon at Southerndown, perhaps one of our favourite places – the cliffs and the beach, the scenery and the rural walks – beautiful. We took a picnic but as it was rather cold to sit outside, the four of us had our lunch in the car at the top of the cliff. We decided after lunch that we would move the car to the bottom car park so it would be less walking for Emelia and pushing the pram. However, the car refused to start. Yikes! Some kind people gave Jon a hand and eventually it got going again. Afraid it wouldn’t start again, we agreed that one of us would stay in the car with Asa, and keep it running. Jon and I took it in turns to walk with Emelia on the beach. The sun was setting as we were walking. Beaches and sunsets are made for each other, a bit like jelly and ice cream, flowers and vases, icing and cake – like Jon and I, and our lovely children. We are made for each other. How I love our little family!

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Today has been a lovely day, spent marvelling at creation, eating, laughing and making memories. It’s a bit like the calm before the storm, as we know January is going to be very busy. Already we have 10 appointments for Asa lined up and one for me! Over the next few weeks, Asa will see the ENT (ear, nose and throat) specialist about his stridor (noisy breathing), physio, the community paediatrician and blood tests, feeding clinic, portage (child development / psychology service), audiology MAP (Multi Agency Planning), and in two weeks time, we will start at the ‘Speak and Learn’ communication group for children with Down’s syndrome. Most of these appointments require child care for Emelia, so thank you to friends and family who have already offered.

So, as we embark on a new year, we are looking forward to seeing what God will bring in 2013. We are feeling positive about the future – we’ve definitely ‘turned the corner’ and life is a lot less scary (for now!). We’re counting our blessings (namely two that go by the names of Emelia and Asa), and praising God for his goodness and faithfulness to us now, and in the future. To our friends and family, happy New Year! xx

BIG NEWS

ASA IS HOME!

ASA IS HOME!!

ASA IS HOME!!!

Did you get that?! One more time, ASA IS HOME!!!!!! Our little boy came home yesterday after four very long, exhausting weeks (and one day)!

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Asa finally gets to wear his ‘coming home from hospital’ outfit!

To make it even more of a special day, yesterday was Jon’s parents’ wedding anniversary. And it wasn’t just any anniversary, but Margaret and Ray’s GOLDEN wedding anniversary! We were a bit naughty as we kept it a surprise! We invited both sets of parents round for a cup of tea and cake after we ‘visited’ Asa. The discharge from the neonatal unit took much longer than expected as there was a long checklist to go through, plus we had to feed him (and occupy a toddler, yikes!). I texted both sets of parents to say we’d be 20 minutes coming home. In they walked to discover their little grandson was waiting to give them a cuddle! SURPRISE!

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Left: My mum, Anne, made this cake for Margaret and Ray’s Golden Wedding Anniversary, for our little informal gathering. (With extra special secret guest!).
Right: My mum’s first cuddle of Asa, aged 4 weeks and 1 day old!

***

This morning, we took Asa to church without anyone other than our parents knowing Asa was home! No-one really noticed at first, except those sat in the ‘Oasis’ area where we were sat. There were a few whispers, people pointing and trying to crane necks and see what was going on, and Mark Lonney informed Matt Lewis, who was speaking, that baby Asa was in the building! We did inadvertently cause some commotion in Matt’s sermon (sorry Matt!). I must admit, I have been dreaming of this day for ages, finally getting to show off our whole family, and we did it. After church we could barely move for people wanting to see him and talk to us.

We are incredibly blessed to be part of Bethesda – it’s such a supportive, loving, compassionate, prayerful church. I’m in tears as I write this. We have seen and experienced God through these many, many faces, these friends, this family of ours. It feels like home.

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Friday afternoon I had a phone call from the unit to say that Asa might be discharged the following day and would I like to come and spend the night at the hospital ‘rooming in’ to get used to looking after Asa. It was a long and difficult night as Jon couldn’t stay with me, and Asa had to be woken and fed every 3 hours through the night, taking sometimes an hour (or more!) to feed…plus his noisy breathing (stridor) made it difficult to sleep. A lot of the night was spent in tears, but we knew we were close to having him home!

P1090073Our first night at home altogether as a family. Precious times!

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.