Day ten- trying to feed

I am so tired this morning. Last night I decided to try and breast feed Heidi before each feed was due, then offer a bottle, then feed the rest via the ngt. The first effort was at 3pm and she didn't do much for the breast feed, then the nurse managed to get her to take about 5-10ml from the bottle. It's a start anyway. Before the feed I gave her a proper bath. Now that the drip is out she is a lot more portable and easier to just pick up. It was nice to do something normal like bathing her and she seemed to like being in the water.
D and the kids went back to the hotel early so I went for a walk to buy some things for breakfast. I found a little grocery/liquor store with a subway across the road, so I bought my dinner at the same time.
I came back to the hospital and had my dinner washed down with a Guiness (it's supposed to be good for milk production) and then it was time for Heidis next feed. Same routine, same result.

I went and had a shower and watched a bit of telly, but didn't bother going to sleep as her next feed was due at 9pm. I tried to bf, then bottle, before she had the rest via ngt, but she was really unsettled afterwards and didn't want to be put back in the cot. I eventually managed to settle her and then I had to rush off to express. By the time I'd done that it was after 11, and she was due for her next feed at 12! The nurse told me not to worry about coming in for the next feed and to get some sleep instead.
So I got three and a half hours sleep before going in and doing the whole routine again. Back into bed at 4am, then up again just before 6. I had some breakfast and now I'm going to have a lie down before D gets here.

Midmorning- D arrived at feed time and I had the midwife with me to see if she could help me get Heidi attached and sucking. She gave me a nipple shield to try aswell as syringing a bit of milk into Heidis mouth at the same time. Heidi would do half a suck and then fall asleep so it was hard to get her to keep trying. I gave up after trying for a while and then went to express while D had a hold of Heidi.
We all went and had some morning tea at the cafe downstairs. The coffee is good but there are too many cakes and sweet foods that I can't say no to and the kids can't either! We are all eating too much crap but whatever it takes to get through the day......

We went back to the ward and the speech therapist was there. She is really nice and made me feel like Heidi was just as important as any patient she has ever seen- not just a job for her. She had a quick look but wants to come back and watch Heidi trying to feed so she can get a better idea of what her capabilities are. She said she has some exercises that may help strengthen Heidis mouth and jaw and she is going to get the physio to come and see her too to see what we can do to improve Heidis low muscle tone.
D has gone to do some washing. There is a free laundry downstairs which makes things easier for us. I'm sitting in the parents lounge off my room with the kids. They are doing their Wiggles activity books that I bought them the other day. This area is so handy. It is supplied with milk, bread and butter, plus tea/coffee/milo and a fridge and microwave. I come in here for my breakfast (there are plastic bowls and cutlery) and to make endless cups of tea (and milo in the middle of the night). It's only accessible to parents who are staying in the accommodation here, so I don't know what will happen if I give my room key back. My room is clean and functional with a double bed, fridge, tv and toilet and shower. It's quiet and I like knowing that Heidi is only in the next ward.
As hard as it is getting up for the middle of the night feeds/expressing, it's also kind of nice. It's quiet and the lights are dimmed and there aren't many people around. The nurses aren't as rushed and the whole place feels more relaxed.

Evening- D and the kids stayed here for the rest of the afternoon. We went for a drive to McDonalds for lunch and B had a sleep in the car. I went in for Heidis 3pm feed to see the speech therapist again. She showed me some things I can do with Heidi before each feed to try and stimulate her mouth and get her to use it more.
D took the kids up to the Starlight Room while I was in with Heidi. That place is a lifesaver! It's staffed by volunteers and has lots to do including Nintendo/computer games, fuseball table, and lots of painting/colouring/craft things. S loves painting and colouring and would stay at that table all day if she could! E has discovered computer games and is getting better at using the mouse and following directions. B kind of wanders around all the activities and he likes the fuseball ball and keeps stealing it so no one else can play! I often find myself painting next to Stella and it's actually quite relaxing.

The kids are holding up really well, but I know D is getting fed up. It's hard because I'm limited to doing things in 2 1/2 hour blocks due to having to express and trying to feed Heidi. I think D is planning on going home on Monday, and as much as I'll miss him and kids I know it will be easier for them all at home. There is more structure and routine at home plus D will have more support from friends.

I'm going though periods where I feel really optimistic about Heidis prognosis, and then I start to wonder if she'll ever be "normal". Part of me thinks that she has much more serious problems that aren't yet evident, but I'm trying to stay positive. I know they won't let us go home until she's feeding properly, but I can't see that happening anytime soon. The hardest thing is that she is always asleep which doesn't seem right. No-one else has mentioned it, but I know it's not normal for a baby to sleep all the time and not even wake for feeds. She'll never learn how to feed if she never wakes up properly.
I feel like we are going to be here forever. It feels wrong that my baby has been separated from me for so long and I'll never get these first weeks of life with her back. She is our last baby and I wanted so much to enjoy my newborn and cherish every moment. But she has been stuck in a hospital and there's nothing I can do to change it.