Ellie's story

I don't know where to start. So much to say and still none of it enough.

Ellie was quiet wednesday, Thursday and friday, even when we were at the cinema. She moved slightly on Saturday morning and had the hiccups in the afternoon but we went about our day as normal. By Saturday night, I wasn't happy as she hadn't moved and I had started to lose my plug too. They hooked us up to the CTG and despite the heartbeat, nothing. Half an hour later, I was being prepped for theatre and I was terrified. There was a debate on if I had time for local anaesthetic or not but in the end they went for it as I'd not long eaten and our baby was ill. It took a long time for my legs to get heavy and go numb and even with all he tests, there was still some feeling but then they decided I was numb enough. I didn't feel the incision but then, when they started to pull Ellie out, the pain started. It must have been bad because I thought I was dying and people were getting quieter and fading away. Looking back, I was probably trying to black out from the pain. I heard them say they had her, and then I brought myself round, thought 'if I'm going to die, I need to see her first'. Lee was getting louder again, telling me she was nearly there then there she was with a little squawk, my beautiful daughter. As soon as the cord was cut, she failed to breathe and the NICU team were working away. Her apgar scores were 2 and 0 at 1 and 5 minutes. They were sewing me up and I could hear myself crying out in pain, the anaesthetist looked worried but I just kept getting myself drunk on entanox and letting it wear off. Before Ellie left the room, they brought her to me and I told her I loved her while she looked at us with one little eye open, the only time she had them open. Lee stayed with me as were finishing and helped me with my gas. They took Lee just before they finished, and I remember screaming out in pain as he left the room, and grabbing the anaesthetist's hand and squeezing. I think he knew then I could really feel it. As soon as they finished I was so sore, and a bit spaced from the gas and air. I saw the surgeon and anaesthetist talking, he wanted to give me something (I don't know what but the surgeon wouldn't let him as I needed to get to the NICU asap. She also told him I definately felt pain, so she knew. That surgeon saved Ellie's life by getting her out and she kept me going through the sewing up. The birth was incredibly traumatic but knowing Ellie has made me forget now. she was born 6 lb 10 oz at 35 weeks gestation, 18 inches long with a  lovely head of dark hair. It was the 5th Feb, 10.24pm.

Recovery went smoothly. The only side effect I had from the spinal was itching and I was obviously sore. The NICU team took a long time to sort Ellie until we could see her. Dr Berrington, NICU consultant, eventually came to see us and told us everybody hopes their child will be the lucky one but unfortunately, she didn't think it was Ellie. Her blood pressure was frighteningly high and her lungs small. They believe the high blood pressure had been going on for sometime in utero. They took me in my bed to see her, she was so amazing. I couldn't reach to touch her but I knew she would hang on for me.  I didn't sleep that night, though Lee managed a tiny bit in the chair beside me.

Getting up the next day was agonising but I had to do it for Ellie. Dr Berrington came to see us and told us they would arrange the baptism I wanted for that morning, and anyone could come. They didn't think Ellie would last the day. We got sorted and went down there, she was so beautiful, and I got to touch her for the first time since birth. Lee cried so much, and I held him, told him things would be alright. I didn't feel like a mum but we spoke to her and held her hand. We learned that her heart was thickened from the high BP and that she wasn't doing so well. We asked if the care for her was palliative, and Dr B said they would see how she was in a couple of hours before we came back to discuss what to do. The chaplain then showed up and Ellie was baptised in the presence of two set of grandparents, and my brothers and sister. My heart is so low that my dad couldn't get of the rigs in time to meet her, but it wasn't his fault and we just didn't know Ellie would be here.  After the baptism, Lee and I got to hold her and when Lee held her, her oxygen sats went from 75% to 90%! Proper daddy's girl. The cardiologist and renal teams were doing scans after we held her so we all popped off for coffee and when we came back, she was relatively stable. They debated that the problem may not be ARPKD but something else, though they would do a kidney scan the next day. People went home and I went to rest while Lee popped home to get some stuff. We went back to see her later for a while before bed and she remained stable. She had even done a tiny wee, we couldn't believe it, and her BP was normal.

I woke up early the next day, got in the shower, we had breakfast and we knew that no news was ok-ish news. Once we finished, we went straight to the NICU where Ellie was still stable though her BP had gone a bit the other way and her numbers weren't as good as they had been, but by no means the worst. We chatted to her, told her to stop flirting with all the boy babies in her bay, said she was doing so well and we were proud. We went for coffee and snacks downstairs while doctors were busy but when we came back, we were told she wasn't doing so great on the breathing front so they were going to do an X ray to see if she had any pneumothoraces.  Ellie didn't respond well to the X ray and her breathing started to get harder, her sats dropped and Dr B took us into 'the quiet room'. There wasn't a pneumothorax which meant it was a case that Ellie just couldn't cope. She was already on the most intensive ventilation at maximum capacity and they had removed the paralysing muscle relaxants yet she was just too weak to respond.  Lee and I knew it was time to call people in and let her go. Dr B was breaking her heart for us, we knew she had fought the fight we wanted her to but it wasn't fair to keep Ellie going.  We were told we could have hours but that she might go on the machines and we didn't want that. We waited for people to get there and while we waited, I stroked her belly and hair in the incubator then the nurses helped Lee and I dress her in the outfit we had bought for her. When everyone was there, they started to move all her equipment down to the quiet room. We each held her, first me, then Lee, my mum, sister, stepdad and lee's parents then they passed her back to me. Lee and I told her we loved her, how proud we were to have known her and how she made things complete. We said not to be scared and how we would see her again soon, how happy she made us and that we would take her with us everywhere. Lee then removed the breathing tube and I rocked her to sleep, my beautiful baby girl of only a day and a half.  We don't know the exact time yet, we will tomorrow, but between half two and three, Ellie was pronounced dead. I brought her to my chest anf felt myself die inside, this beautiful little girl we had created, wanted, loved so much was gone. People held her and said their goodbyes and Lee and I stayed with her. The nurse came back and we set up her memory box with all her blankets and bits in, we bathed her and washed her lovely hair, got her dressed again. I kissed her lips so many times, stroked her hair, her hands her feet, we just never wanted to leave. Walking out that room, knowing I would never see her again was the worst thing I have ever done. We made the decision not to go back back and see her again, due to colour change and things. We want to preserve our last images of her in the bath, etc.  I was discharged from hospital as I was fit in myself so that night we all raised a glass to Ellie. We decided, Lee and I, that the blanket that she was baptised in will stay in the bed with us as our 'Ellie blankey'. It still has her smell on it right now. I know it will slowly fade and another little part of me will die.

In 40 hours she gave us so much. When we asked if we would have time to get everybody there, Dr B said she hoped so but couldn't say. Her sats were bad but when I went back she had put them upto 80% as if to wait for everybody. Everything we were told she wouldn't do, she did and vice versa. We came so close to losing her in the womb on Saturday, so we were so blessed to have our time with her. She fought to meet us throughout the pregnancy and she was so strong. It's so weird. I met a woman on facebook, Krishna, who lost her first daughter, Daisy, to ARPKD at the RVI. The day before Ellie was born, Alyssia, Krishna's 2nd daughter was born by elective section. While I was on the ward, we met, and I saw her beautiful healthy baby, Daisy's little sister. I think Ellie and Daisy brought us together and Lee and I believe she wanted us to meet, to say 'look mummy, there's hope and one day I'll send you a sibling too'. There's no way we would have ended up on the ward at the same time if it wasn't for Ellie and Daisy.

We look at her this beautiful little thing we created and we are so proud, and luckier than many for what we had with her. For all the bad times and traumatic birth, I can't really remember them because my head is full of how perfect she really was and how much fun we had. Everything is so messed up: we are peaceful because we did the right thing and we looked after her and loved her but we are so devastated. Where do we go now? I feel so empty and flat. I prayed every night that she be given a chance at life and she was. Krishna and Marc never held Daisy while she was alive, I rocked my baby to sleep, and she felt us, was held by us all when she was alive. I am glad I suffered in the section for her, I wish I could give myself up and bring her back, healthy. I'll have my scar as a memory. There are about 300 photos of her in her 40 hours and yet, it's not enough. I can still recall how her mouth felt when I kissed her, her little hands and feet and how soft they were, her fluffy hair when we washed it but I will never see her again. I want to feel her move inside my belly and kick me. She made life complete and now she's gone. She has made me laugh, cry, love and hurt in ways that I didn't know existed. I keep going through her memory box and will every day until I die.

The RVI NICU, they did everything they could for her. We've been today and they are going to push her hands and feet into clay for us, with a kit we bought. We also had to deal with formalities relating to the post mortem. All day, it has been fine for a bit, cry for a bit. We look at the photos and laugh before bursting into tears. I feel like someone is repeatedly stabbing me, that I can't breathe. It's so hard to believe I'm a mummy and Lee is a daddy, but we were the best parents we could be to her, we fought to protect her and then when she told us she was ready, we said goodbye.

We've decided to go with a humanist funeral, more a celebration of life. Writing about her will kill me but I have to. We will be playing Bruno Mars 'Just the way you are' and Elton John 'Crocodile Rock', Ellie's two songs before having her cremated. We want her in a special box with us in our garden where she can play. I need her there with me and Lee does too.

We laugh that at 20 weeks, I probably had ruptured my membranes, but so defiant, she repaired them then created another problem. They took her away again at 28 weeks and she was having none of it. They said we'd go to term and have an elective section, wrong again. And I know for a fact she was singing in her head 'haha, I did a piss' at those doctors who said she wouldn't! Her salt and kidney levels were perfect. They said she would be gone on the 6th of Feb so she purposefully held out until the 7th. My stubborn little elf. She looks just like daddy but has my mouth. She has daddy's receding hairline, poor thing. She has my heart too, broken as it is. We've been thinking of all the positives to take from this, what we can do and how we can help others, how to make Ellie proud.

One thing I know that she is counting on Lee and I and our love for each other. And, of course, how could we ever not be now, having made something so special, and shared that time? She wants that, I know. He was so strong, always said he could never come into theatre yet stayed by my side. Didn't bat an eyelid at all the 'squeamish' things he said he would. He was always freaked out by my belly button in late pregnancy yet when they had to pop Ellie's out to put the wires through it, he didn't even notice.  The midwife came today and said she'd been so upset when she heard but they were all talking about what an amazing couple we are. People have faith in us and I know Ellie does.

They are doing a post-mortem this week though the results won't be back for 6 weeks. It will help with implications for future children but I can't imagine loving a child the way I love her. I will one day, not more than but as much as.

What do I do now?