Well, we made it. After running around madly getting the last few things we needed organised, we made it to Melbourne airport and checked in fashionably early for our 9pm departure.
Alyssa was very good on the plane, too good in fact as she didn’t want to have her scheduled feed. Luckily the plane was ahead of schedule and we landed at 9:50 instead of 10:05, so by 10pm we were in the airport feeding her and checking her blood sugar levels (BSLs) which were 3.6 – well inside the safe zone, despite her having refused to feed for 30 minutes meaning she in fact went 3.5 hours between feeds (we measure from start to start).
This is not something we wanted to have happen the first day out of hospital! We were watching her very closely during the flight for any signs of hypoglycaemia though, and she appeared perfectly fine – she just wasn’t hungry apparently.
We got back home and started unpacking all the supplies which were spread across 4 different bags. Luckily, the pump arrived in working order, although much of the frozen milk we had packed in ice had started to defrost to the point where Donna was not willing to simply put it in the freezer at home. I guess it wasn’t the best weather for it yesterday, as we were heading to the airport at 7:15 it was still 33 degrees C.
I pulled out the old birdcage stand from the garage – glad we didn’t sell it earlier this year as it made the perfect replacement for an IV stand, the pump attached to the upright whilst the flexible bottle fitted perfectly meaning that when it was time for bed, we simply had to hang a bottle of milk, prime the pump and set it going at 25ml/hour.
Surprisingly, we both slept well – the pump doesn’t make a lot of noise, and it’s in fact reassuring to hear it working – it has alarms if the tube gets blocked etc, but it won’t alarm if she pulls her NG tube out of the tube disconnects from the pump giving set.
Alyssa started getting restless around 3:30-4am and we tried getting her up for a feed, but she wasn’t interested – a quick nappy change and she settled down again though and the next time we woke was 6:30am to turn off her feed pump ready for her 7am feed. BSL at that time was 5.9, which was excellent as we’ve been told that the mornings can often be the time when hypoglycaemia occurs, even on continuous feeds.
My parents stayed the night since Dad had to bring my car to the airport and pick us up. They’ve just left as of about 30 mins ago to head back home to Penguin. It was nice to have someone here through the first night in case we had to make a dash to the hospital or anything, but thankfully all went well. Hopefully we won’t need to deal with that any time soon, but the metabolic team at the RCH have warned us that it’s almost inevitable that she will hypo at some stage, possibly as the first sign of her having an infection or virus, or if she has a growth spurt and we can’t adjust her feed schedule quickly enough.
Because Donna is breastfeeding, their hope is that Alyssa will naturally take as much milk as she needs during the waking hours, and so that would be less likely than if she were bottle fed a certain amount every feed.
There’s lots more to report, but we need to go back over our notes from the last few days and update the site here. Right now, we need to go and get ready to meet with Donna and Alyssa’s GP to fill her in on Alyssa’s condition and get a referral to see the paediatrician so we can do the same with him.
We will also discuss the possibility having Alyssa’s condition, and the emergency treatment instructions flagged in the Tas Ambulance service system so that if a call comes in for her from our house or our parents’ then the ambos will know what they’re dealing with and can prepare the hospital for the same.