Day seven- finally in Perth

We are finally here in Perth. We left around 11pm last night and got in to Perth about 2am after an uncomfortable flight. I was so tired and because Heidi was unsettled I held her for most of it. It was cramped and I couldn't get comfortable, and Heidis breathing was not that great. So relieved when we finally landed.
The ambulance took us into PMH and into the after hours emergency ward. I sat with Heidi to wait for someone to come and admit her. A doctor finally came in and checked her over and asked me lots of questions. He was concerned about her slightly small chin/recessed lower jaw and said that could be preventing her from being able to feed. He said her soft cry could be due to a nerve in her voice box not working. He told me nothing will happen until Monday, then he expected several specialists (ENT, plastics etc.) to have a look at Heidi. I don't think her chin is that small, and to me the problem seems to be with Heidis lack of desire to feed- not lack of ability. But they have to rule everything out I suppose.
He took us up the to the neonatal intensive care unit (ward 6B) where they admitted Heidi and did some more checks. He resited her IV as it was starting to tissue again. The nurse showed me where my room was and I finally get to bed about 6am after being awake for the past 24 hours.

I get a couple of hours sleep and then wake up at 8am to have some breakfast and check on Heidi. The nurse has given me breast pump attachment and shown me where the pumps are. They have a special breastpumping room and a fridge for the EBM, and stickers to label it as mine. I'm glad this is so organised so I don't have to think about it. I express after breakfast and then go back to bed for a little bit.

D and kids arrive just after lunch. It is so good to see them all again. It takes the kids a couple of seconds to register who I am, but then they are all hugging me. They are excited to see Heidi, and D is glad to see me again too.
The kids have all bonded really well with Dan which is nice but a bit strange too. It's only been less than a week but it seem like ages. At least we are all finally here and we might get some answers on Heidi.

Noon- I just got back from spending a couple of hours with D and the kids. We went into Subiaco Markets so the kids could buy a toy and a fairy dress for the girls. I bought a fairy dress for Heidi too, although it won't fit her for a while. It felt weird to be out as a family, knowing that our baby was back in the hospital. It doesn't feel right- I'm the mother to three little kids and a newborn baby and yet I've been separated from my baby since she was born.
I'm still expressing milk every three hours, mainly to keep my supply up. I feel strange not having actually breastfed Heidi yet. The nurses have written Nil-by-mouth on her chart but I've told them it doesn't matter because she won't suck anyway. I really hope we get some answers this week and that it's nothing too serious. If it comes to feeding her with a special bottle, I'll express for the next 12 months as long as I can just take her home.
I don't think she has any major problems- the biggest thing seems to be her not feeding and there's still a chance she might relearn that reflex in time.
D and I were talking about what will happen if things go on for a long time. He will need to go back to work eventually but about the other kids? We have no idea how long Heidi will be in hospital and I can't leave her. But I don't want to cause too much disruption to the other kids either. If we lived in Perth it wouldn't be an issue but it's so hard living so far away. All I want is to be at home with all four of my gorgeous children. This is not how it was supposed to turn out.

D got to hold Heidi this morning. He didn't want to disturb her and was worried about all the wires and tubes. He said she looked too fragile but I assured him she's not. She's just as robust as the others were as babys, but all the medical equipment makes her look sicker than she is. And she's actually not really sick at all. Just not feeding. That's what I keep telling myself anyway. I keep imagining what it will be like taking her home. I'm clinging to the hope that it won't be too long before we have her back home where she belongs.

Evening- I was sitting with Heidi and the nurse said she ws going to try and bottle feed her. It was the first time anyone had actually tried a bottle so I stayed to watch and see what she did with it. She wouldn't open her mouth so the nurse had to push it open and then try to get her tongue down and the teat in. She seemed to suck ok at the start but had trouble swallowing at the same time. The teat was swapped over for a slow flow one but she still had trouble. Her sats stayed up, even though she was trying not to choke on the milk. She got about 5ml in before the nurse stopped. She didn't want to overdo it, so the rest of the milk was put down the tube. But it was a small step so hopefully she'll have lots of little steps forward which will get her on her way home.

I see some of the tiny prem babies and the really sick babies and think I should feel grateful that Heidi is pretty healthy. But I still feel ripped off that I don't have my baby with me. I'm feeling like the most unattached mother in the world. My newborn baby is stuck in a perspex cot in a room without me there. She has moments when she cries and noone comforts her because the nurse in busy and I'm not there. She is only held a couple of times a day and most of the physical contact she has is usually to have her temp taken or drugs given or heel pricked. She is missing out on all the things a baby should have at this age.
And I'm not even being a proper mother to my other children either. I see them a couple of times a day at the most, and I'm usually distracted and trying to talk to D. B seems to be coping ok as he has really bonded with D. E seems to understand why I can't be with them all the time, but she also doesn't let on what she's really feeling. S doesn't seem to be too affected but I worry she will end up really confused and resentful.
I love all my kids so much and yet I'm only being a parttime parent to all of them. D is doing so well and I'm so glad the kids have got him, but it's tough on him and I don't want him to burn out. I've offered to take the kids while he has a sleep or sits with Heidi, but I know what we needs (and me too) is some adult company and shared parenting. I'm going to see about putting the kids in daycare for an hour or so while D and I have some time together. Keeping the family unit strong is really important so we need to concentrate on not losing that. If we are going to get through this we need to do it together.