Just watched this and cried myself into such a state that even the cats were disturbed.

This is such a long process. Yesterday after being told that there was a possibility that Tilda's PDA (heart valve issue) was getting smaller, and feeling full of joy that this, what seemed to me to be her only issue apart from size and gestation, today, it appears that no, the PDA is the same size. So the treatment hasn't worked again.

I felt so disappointed. Outwardly, I was ok, inside I was just waiting for the moment when i could rush away and lock myself in the toilet and cry. So I did. Actually when I cry at the incubator, it is such an intense feeling of loss and aching that I actually want someone to see me sometimes and comfort me and tell me it'll be fine. But the thing is, they won't do that. They'll comfort, but they can't and don't ever say it's going to be ok.

Tilda's sats were all over the shop this morning, heart rate dropping undr 100, all the usual, and she wouldn't settle, and was clearly uncomfortable. But I didn't seem to be able to help her. Then she was possetting and wriggling and eventually the nurse who I haven't taken to , the one P thinks he offended on the first day by saying "Haven't they sent the notes from Leicester?" when she asked lots of questions, she came along and suctioned some gunk from T's mouth and that seemed to make it a bit better but I just couldn't stop the tears from dripping offmy face. She eventually noticed, and (I might sometimes want someone to notice, but rather not her),she was ok actually, said that this is the hardest time, cos she's got through the first week and now we're in the middle bit where we just don't know what's going on, and people now expect her to be getting better cos shes not so young anymore. She naturally didn't say "But she's going to be fine." though. But she had a point.

I think everyone thinks P and I are a bit uncaring. No scratch that, strong, for seeming to get on with things. I am not strong. They should see me at this place. I just seem able to turn on the strength when people ask about it. It's like being 2 people, the person who can cope and the person who wants to hide away still and sleep till it's over. I'm both. P throws himself into work and is my beloved and much as I hate this phrase with a passion, is my 'rock'. (it makes me think of Paul Burrell)
I was incredibly moved by P's reaction to the text pic of Tilda with no mask or hat on. He got to see her head for the first time, and he was so emotional he said, when he got my text, that he knew he had to see her that night even though he'd been working a hugely long day and wouldn't be back till at least 9. He loves her! I guess I worried that with all of this, the one man I love more than anything, might not feel anything for the little girl I love so fiercely now.

So tomorrow, I want us to go in early and see the doc as they do the rounds and find out what they want to do about the PDA. I feel Tilda is not moving forward. Her weight is a little less, tho her feeds have gone up a mil today to 13 and a half. I just worry. All the time.

This afternoon however I did have a cuddle for an hour with her on my chest and her sats were so calm, so steady and it was lovely . I can smell her on me now. I hope she knows me. I am frightened she has so long on her own in that incubator, with different nurses tending to her when we're not there, that I am just another face or voice. She snuffled her head to me, cos she can feel and hear my heartbeat. Hopefully hear it. And she will smell my milk. I want so much to be able to feed her properly. Not through a tube and syringe. Poor little love. She doesn't know any different. Neither do we really.

I almost want her to have the PDA operation so it's done and she can move on. Otherwise we are here at the end of week 5 in limbo.

Matilda diary 4

Today I cuddled Tilda for about 20 minutes and got very fidgety. Me, not her. I looked into her tiny face and as always was just amazed at this little tiny creature, this beautiful girl who is mine. Her sats went up and down but I think she was quite peaceful being with me for a while. I know I fidget and I do think she prefers being with P in his arms cos he is so still and so solid and I am wriggly like she is. When I hold her which is not often , I always feel emotional afterwards and had to go into the expressing room for a bit of a cry. It just brings home to me how far she has to go. She's not put on much weight, although I know I should be grateful she's put on some. One of the ladies who messages me on netmums had her son a month before Tilda and when she messaged he was 6 weeks old. He' d been born weighing less than Tilda, but at 6 weeks was 3 and a half pounds. She has 2 weeks to put on another pound and a bit, and that is unlikely. She's still just over 2 pounds.

I can't help comparing her to Ethan the boy across from her in the ICU and he was younger than her and he also seems to be doing better with his oxygen, coming off cpap for longer. I just want her to be doing the best! I want her to be the baby who no-one has to worry about!

I look at her twitching sometimes and worry it's a seizure. I look at her eyes sometimes as they move blindly in their sockets and think, please don't have sight problems.

Yet on other days I have no problem visualising her as a toddler, in her daddy's arms, looking at me, smiling. I just can't see what she's going to look like. I am frightened of her and love her so hugely at the same time. She is such a short way on this journey and I am wishing the time away. The nurses say we will forget this time. But it is now and it passes so slowly.

Matilda Diary 3- written August 3rd

I think I am falling in love with Matilda. When people first saw pics of her and said "Oh she's beautiful." in my grief I would think , no she's not, she's ill and tiny and premature and should be in my womb, not here, she's not beautiful, look at her, look at the tubes, look how distressed she is. Now I see the tubes less and less and more this feisty little thing that's made from me and P and who fights so hard and who gets so cross with people prodding her and who has the most amazing expressions and the softest softest skin and I think, you are the most beautiful thing I have ever seen. Holding her yesterday and seeing her eyes be open for the first time, I can't stop this feeling of wanting to protect her and knowing I will do anything for her. She is amazing and we have created her and that is God's miracle.

Fight little Tilda, you have to stay with us now. In 2 weeks we have learned so much and changed so much from the dark days and crying about the lack of joy we felt, to the optimism and the bliss of being able to just open the incubator and feel her tiny head. My heart is full of love for P who has been the most amazing man in all of this. He makes me heart want to burst, and now there is space for Matilda too.

Matilda diary 2- written 2nd August

Sadly for Matilda, she had a scan today of her PDA/heart murmur and the ibuprofen doesn't seem to have made any difference, in fact it's actually got a bit bigger. Great...I thought it would be ok. So they're not going to do anything for the next few days, see if it closes a bit more of its own accord then decide what to do next if it doesn't, so we could be back on the ventilator soon anyway.

Today was a good and bad day. Good- her eyes were open for the first time! That was amazing, even though they're so tiny and dark like alien eyes,but a big milestone for us! But then the PDA thing and the fact that her breathing was erratic and she was also sick after her feed did bother me, hadn't seen her be sick before. Know I am probably now a very overprotective first time mother and of course babies vomit, but was all new to me and made me feel terrified of her choking on it. I've been a bit weepy all day to be honest, and my parents came to see her and they were all very positive and I just wanted to say "You don't know she's going to be ok!" the phrase that rings in my head. I'm just so very aware of all the variables of what could happen and I just wish we were a month on so she'd be over 30 weeks and it'd feel like she was further up the path.

Matilda diary 1- written 21st July

Sunday, long story, was bleeding a bit, went into hospital for observation, thought it was a bit of constipation, next thing we know my waters are broken and 2 hours later Matilda was born, at 25 weeks and 3 days weighing just over 1lb . Since then she's been moved to the special care unit in Leicester, we've seen her every day, she's ok in the way that for her gestation she's not a bad weight, but of course she's also so very tiny and poorly and young and we are so so frightened of getting close to her, getting too attached to her, feeling anything because the doctors are kind but realistic, and not all babies survive at this age. Been such a rollercoaster of a few days, from thinking it was ahealthy pregnancy, she wasn't going to be born till the end of October and now she is here. I can't quite believe it to be honest. I verge from feeling sick and hugely emotional to thinking maybe it would have been better if she wasn't here, I know that may sound so heartless but what if she's in terrible pain and will always be? I am scared to google statistics in case I find out something I don't want to know.

Each time I see her for the first time in a day, I can't stop crying, she's so tiny and fragile and she doesn't look like a baby she looks like a newborn kitten. I find it very hard to look at her at first. Her eyes are fused shut, her skin looks so thin, her limbs so tiny. I have never seen a baby so small and I can't quite believe she's ours. We both want to stay positive but the road ahead seems so long and my god we're only on day 3!

I also am already trying not to lose patience with well meaning and kind people we know who say "I'm sure she'll be fine." and each day ask if she is any better. I know they mean well but I want to say No, she is NOT any better, she is a very very tiny baby who is fighting for survival, there will be no 'better' for a long time. But they don't get it, why would they?

I know I am sounding negative, I don't mean to, I just feel like the rug's been swept out from under our feet completely. What will the next few weeks bring? Our control is gone. We knew a baby would change our lives completely but just thought it'd be in a 'normal' way. Not like this.