Before we could go ahead with Ellie's surgery she needed to be checked by our paediatrician. It was also a good chance to work out the correct zantac dose and learn how to work out how to increase it properly in the future.
This time we got to see the woman who would be our regular paediatrician, Doctor Funk. She is brilliant. I hit it off with her straight away and I know we'll be very happy in her care. Her brother was born with bilateral cleft lip and palate, and she manages all cases born on the North West Coast, so she knows what she's doing and she knows the challenges we're dealing with.
On the reflux, she said the dose the last paediatrician prescribed was far too low. I said I'd bumped it up to 0.7mls because it wasn't working but I didnt want to go higher than double the prescribed dose without advice, and she looked up what the dose should be. The correct dose at her weight is between 0.8mls and 1.6mls, so I was close! She told me how to work out the right dosages in the future too so we wont have to deal with that horrible time when she changes.
We went through everything I'm doing with her feeds and sleep in terms of the reflux, and I'm doing it all right. Lately Ellie had been having a lot of trouble drinking after stopping for a burp, and I'd been syringe feeding up to 150mls of her 200ml feeds, which is very very frustrating with a 3ml syringe! So we need to put her back on infacol and see how she goes, but keep syringe feeding if it doesn't improve. The important thing is she finishes her bottles no matter how she does it.
She also did a quick hearing check. The right ear was responding, so the blockage in that ear seems to have gone, but the left is still blank. Her equipment couldnt tell us much though so we just have to wait and see the audiology specialist in July to see if has changed.
Doctor Funk couldn't believe what Ellie survived. It really brought it home for me how lucky we were. She said she'd lost a few babies from the same thing, and they all had much higher haemaglobin levels than Ellie did. She really is a miricle, and a testiment to the team that saved her in burnie.
So, even though I'm wiped from lack of sleep and frazzled from screaming, I'm doing everything right. Thats something. Gives me a bit of confiendence to keep going anyway!
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