(Some names have been changed)
I showed up this morning at 9am for a feed and found the new nurse, Sasha, preparing a bottle to give Alyssa. I wasn’t very impressed and made her stop and write ‘tube feed only’ in red pen on her chart as I’m getting sick of telling each nurse. It’s already been such a struggle getting her to breastfeed and I don’t want to be dealing with nipple confusion between breast and bottle at the same time.
We headed into the city to catch up with some friends and have a bit of time out but they’re late so I’m sitting in a chair (sore feet still from the swelling) in Myer waiting. I want to go home!!! I miss Liam so painfully!
It’s so hard watching everyone walking around laughing and smiling without a care in the world, knowing it’s going to be a long time before we’re living that carefree again.
We went to a pancake parlour for a late breakfast. We caught up with Chris (Warren’s work colleague) and his daughter Erin, fredzfrog, Robzy, TechHeadFred, MrFriendly and orinjuse (all online names of people we’ve talkied to online for years) from the Atomic forums. They’re some people I’ve always wanted to meet but it’s just not the same as our past visits to meet Atomicans – I’m not feeling particularly social. Fredzfrog bought Alyssa a little koala with a Melbourne t-shirt on it for her first visit to Melbourne.
We got a call from Sasha to let us know that Alyssa was going back onto antibiotics and that she was on her way to having another ultrasound on her liver and her head. Her next feed is at 3:00pm but Sasha said it would now be 4:00pm so I wouldn’t need to rush back. Warren and I decided to stop at the Queen Victoria Markets to try and buy a pressie to send to Liam (we found something for Tristan earlier) and I was back at the hospital by 3:50pm ready to try another breastfeed.
The new nurse on duty informed me that Alyssa had already had her feed at 3:30pm without me. I just stared at her, stunned and told her that I was working really hard to try and establish breastfeeding and it was important that I had the chance to feed her before her tube feed as we were having lots of trouble. She apologised but said it didn’t matter because her tummy was full and she was happy – to which I told her that was exactly the problem, that she was full and wouldn’t even attempt a breastfeed now. She just said that no information about me breastfeeding had been passed on at the nurse’s handover. I was feeling very annoyed – mostly at Sasha.
The nurse told us that Alyssa would be on antibiotics for the next few days – so we are probably stuck here for longer than we hoped. We also noticed that her dextrose drip had stopped (again, no-one thought to mention it to us) and she just has a saline solution through the drip – it will be interesting to see the next BSL. (It was 4.1).
The junior doctor, Danni, came to see us. The ultrasound showed no bleed on her brain. Apparently there was on her first ultrasound at the LGH which nobody told us about) and her liver is still quite enlarged. Due to her increased fever (high 37s) they’ve done all the infection tests again – blood, bladder tap and another lumbar puncture 😦 We wonder if there is an infection that has made her so lethargic and unresponsive again (as she was initially at the LGH) which is affecting her feeding.
I queried with Danni why the dextrose drip had been turned off and she did a bit of investigating, only to find there hadn’t been an order to switch it off. A nurse had probably had to change bags and didn’t read the chart properly so went with regular saline. She got a bag of dextrose to change back to. Yet another silly mistake by nurses not paying attention – I’m not impressed a mistake like that can happen really.
Then the nurse Mandy came on to replace another nurse who’d left early. She hadn’t yet figured out which baby was which and tried to prepare some EBM that wasn’t mine – thank goodness we were there and she got us to check the tag. The effort to get the expressed milk is too great to be giving someone else’s milk to the wrong baby.
I didn’t bother trying to feed at 7:00pm. It was quite clear that Alyssa wasn’t going to wake up and the anxiety from being unsuccessful is just too much so I decide not to bother. Hopefully these antibiotics will pick her up again and she’ll become alert enough to try feeding on her own but at the moment it’s just not working and just too much stress to deal with on top of everything else.
I am missing Liam dreadfully today – I know Tristan’s big enough to understand what’s going on and be able to deal with it but it must be tough for poor little Liam. I called Mum to chat and she said he’s had a really grizzly day and probably wasn’t coping very well. I wish we could pop home for a quick visit for a couple of hours but it’s just not possible – damn Bass Strait. It makes it so much harder to cope in this nightmare situation when family are such a long way away.
I’ve been thinking a bit about our friends supporting us at the moment and I’ve been very surprised with a couple in particular that wished us well once and we haven’t heard from again – I’d have hoped for more support. On the other hand we’ve had tremendous support from the least likely suspects. These situations are great for showing you who your greatest friends truly are though 😦
10:00pm – We’re sitting in the lounge of the Ronald McDonald House and we can hear an ear piercing scream from a young girl in one of the rooms. She doesn’t sound very happy at all. Another Mum in the kitchen told us she is in the room next door to her and she cries like that all the time because she’s in so much pain following brain surgery (we later learned that she was the same age as Liam and she’d just had 1/4 of her brain removed). The poor little thing – what a horrible ordeal for her and her family to be battling. I send a special thought to my little girl and am thankful she’s not in so much pain.