Instagram

Had my first couple of private messages on instagram recently, both basically saying how they enjoyed my page and how Lizzie inspired them.

Sometimes I worry about putting pictures of my kids online and the morality of this but this is exactly why I do it. When we found out we may have a baby with Down syndrome we spent a long time reading about trisomy 21 and people’s experiences and instagram was a big source of hope and optimism seeing families who didn’t just accept the diagnosis, but embraced it and learned to love all the little differences that T21 brings.

If seeing pictures of Lizzie’s progress gives just one prospective parent a little bit of hope or even just allays some of their fears then it is all absolutely worthwhile. She’ll change the world my girl 😍

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Feeding time at the zoo!

If there’s one thing I love, it’s feeding time with toddlers and babies.

EVERY part of that last sentence was a lie. It’s horrible. It’s tedious. It’s a long drawn out, impossible war on terror!

Ok, maybe a touch dramatic but seriously it’s not much fun.

First we had Freddie. I’ve explained before about the troubles we had with him when he was first born.

Once we started on bottles to be fair he wasn’t too bad, he was a bit of a little and often baby but other than that he was ok although he struggled a lot with wind and we had to try loads of diffident bottles until we settled on Dr Browns.

Then we got to weaning and that was a whole new ball game. Trying to find things he would eat was one thing, trying to find things he wouldn’t choke on, paint the table with or launch across the kitchen floor was another. Mrs O had and has the patience of a saint and found loads of ideas in the Ella’s Kitchen First Foods book. It was a life saver which I’d definitely recommend.

And now….feeding the twins!

After a poor experience trying to breast feed Freddie we decided early on that we’d bottle feed the twins from the off! That decision was the easy bit!

Due to her operation and her DS, Elizabeth struggles massively with feeding. Sometimes she looks ravenous and if you don’t keep your eye on her she will turn and start chomping on your finger so the natural assumption is she’ll destroy the bottle you’ve just made in five minutes flat…..you’d be wrong.

You’ve never seen someone go from wide awake and ravenous to a coma like sleep in such a short amount of time and once she’s asleep there is NO waking her! It’s like she’s hibernating and we’ve got to wait until spring before she rouses.

Eventually we settled on the NUK first choice bottles with the latex teats. She does better with them and she doesn’t need the strength you’d need with a silicone teat. We do however, use microwave sterilisers and these latex teats do not last well and warp terribly.

Arthur suffers from colic terribly and will grunt his way through the night when he’s on his back. We’ve always had him on Dr Brown’s bottles but we’ve gone from ordinary formula with a size 1 teat to comfort milk with a size 1 teat to comfort milk with a size 2 teat to comfort milk and gaviscon with a size 2 teat to comfort milk and gaviscon with a size 3 teat and then currently we’re ordinary formula with gaviscon and a size 2 teat. Did you keep up with that? I barely do! Thankfully Mrs O is far more on it than me!

I’m already dreading weaning the twins! I’m considering turning the bathroom into a wet room and letting them feed in there 😏

Home time

Up until the last week or so she’d been at the NICU in Manchester. She then got moved to a hospital closer to home then finally after 41 days we got to bring her home. It was the best feeling. We took Arthur with us so we could experience bringing them both home at the same time. I’m not a religious man but Bec is catholic and is from a big catholic family. When they tell us we are blessed I agree with the sentiment.

One tube at a time

Progress felt slow over the next few weeks but every now and then a wire or tube would be taken away revealing a bit more of my daughter and making cuddles that bit easier and closer. Everything felt like little hurdles, little victories. There was the odd set back but every time they gave a time by which she should do something she did it quicker.

Eventually she came off the drip and they started to feed her through a broviac line that entered through her chest. Then eventually they started to feed some milk directly into her stomach through an NG tube then eventually she worked her way to feeding from a bottle.

Dr Confident

Later that day I was joined by Bec. Elizabeth was in surgery for what felt like days, in reality about 5 hours. We were desperate to see her.

Eventually we were told they’d moved her in to intensive care. I hated it in there. They were the sickest most vulnerable babies in that room. I didn’t want my Lizzie to be in that bracket. I wanted her in the nursery with all the babies like Arthur working on coming home.

The surgeon came to see us. A very nice man, he was reassuringly confident if not slightly arrogant. He said the surgery went as well as it could and whilst in there they looked at the liver and gall bladder and were more confident than ever that the liver was fine. The sense of relief was enormous. From now on we would be working to getting her home not working towards her operation.

NICU

For the next 9 days both Elizabeth and Arthur were in the NICU at Manchester. It turned out Arthur’s issues with breathing were very short lived and most of his time in there was transitioning from feeding by tube to feeding from a bottle. After that 9 days we were delighted to bring him home.

41 days!

We knew Elizabeth would be in for a while. We were told the anticipated recovery time for the surgery would be 4-6 weeks. The plan had been to operate on the day she was born but scans revealed potential issues with her liver. They were querying whether she had biliary atresia. Google is not your friend in these circumstances as I was straight on my phone and what I found was not positive. Where biliary atresia is confirmed without treatment children do not survive past their first two years and with treatment (surgery) they often end up needing a transplant. We knew she had duodenal atresia but the prognosis for that with successful surgery was brilliant. This new potential issue terrified me and led to sleepless nights reading medical journals like I had a clue what I was looking at.

Eventually 6 days after her birth the specialists in Leeds decided biliary atresia was unlikely and they could continue with the original surgery they’d planned which they did that day. I was on my own that day, Bec was home with the boys. I’d only have a couple of hours with her before they took her down and they decided they needed to put her under the lamp to bring down her bilirubin levels. I was gutted. The last time I’d have with her before surgery and she’d be glowing blue and have most of her face covered by a mask.

Early afternoon they came to take her. The surgical team came to meet me. They were brilliant, I wasn’t, I cried again. I then went to the toilet and cried me heart out. I tried to call Bec to explain everything I’d been told but completely broke down on the phone.