Spent most of the day in Wansbck A and E. Passed a big clot this morning with a big gush of blood so freaked out. The bleeding did slow down and I had a speculum check, everything looked ok. Had an appointment with Henrietta (which, trust me, I needed!) then went back to get discharged before another huge gush so I was beside myself. They said it is my period but I don't believe that, bit early. However, I think it is just normal like they said and it's slowing again. I had to keep explaining to the professionals that Ellie had died. The wansbeck is good but I wish I had gone to the RVI. At least they know the story from my maternity notes and I feel safe there, because they kept me safe when I felt totally unsafe and it was Ellie's home.
A couple of weeks ago, Henrietta had mentioned going to the teardrop group (stillbirth and neonatal death group) but after today, I think we both know I need a bit extra help so I have to go back next week (two week gap was a bit much I think). Once I started talking today, I had a lot to say. I never realised and I am feeling so hollow and empty. I'm sad it will be a different psychologist at the end of April, Henrietta met Ellie the bump so there's some tie.
I played the piano and cracked open the wine. At least the nerves have eased slightly.
Monday 28 February 2011
Sunday 27 February 2011
What once was mine
What once was mine was pure and true,
What once was mine had eyes of blue.
What once was mine, a button nose,
What once was mine had tiny toes.
What once was mine had total strength,
What once was mine, long in length.
What once was mine I love so much,
What once was mine I long to touch.
What once was mine, hair thick and black,
What once was mine, I beg, come back.
What once was mine, I held so tight,
What once was mine, my shining light.
What once was mine, we said goodbye,
I love you, Ellie-star in the sky.
What once was mine had eyes of blue.
What once was mine, a button nose,
What once was mine had tiny toes.
What once was mine had total strength,
What once was mine, long in length.
What once was mine I love so much,
What once was mine I long to touch.
What once was mine, hair thick and black,
What once was mine, I beg, come back.
What once was mine, I held so tight,
What once was mine, my shining light.
What once was mine, we said goodbye,
I love you, Ellie-star in the sky.
Friday 25 February 2011
Date day
We had to drop Martin and Ciji off at he airport at 4am this morning so I slept until 1pm. It's sad they are gone but we will see them on skype soon no doubt.
Lee and I have been to the metro centre for date day (it's funny to still go on dates but we love it). We picked him up some new t-shirts, his new phone, I got some new converse trainers and we got some bath stuff from lush products as well as going for all you can eat Chinese (Lee's favourite!). Then he got in the bath with the bath stuff and let me scrub his back haha!
Lee is planning to start running tomorrow to train for his 10k run in July. I'm jealous, I really want to exercise now! I want to learn my guitar too so I'm going to add it to my p.s. I love you list. I'm going to make myself a timetable of things to keep me occupied such as piano practice and things.
We got a letter today from the RVI for a joint post natal check and post mortem results, march 22nd. I really don't want to go but at the same time I do for closure and so I can get the all clear. My anxiety is through the roof. I have loads of fluid in my ankles which is freaking me out too. I've walked loads and have elevated my feet all night but it is still here.
I've barely thought about Ellie today in trying to keep busy. I have a lot of days like this and feel like the worst mother in the world, but it's hard to think about anything when I am trying to put on a brave face. I feel myself missing her every minute though. We actually need to get another memory box because we have so much stuff now!
Here is the link to see the Elle adds love hairband, made for charity in her honour by a new friend Amanda.
http://addloveaccessories.blogspot.com/2011/02/ellie-adds-love-is-for-sale.html?showComment=1298679207734#c4097796316391976797
Over and out x
Lee and I have been to the metro centre for date day (it's funny to still go on dates but we love it). We picked him up some new t-shirts, his new phone, I got some new converse trainers and we got some bath stuff from lush products as well as going for all you can eat Chinese (Lee's favourite!). Then he got in the bath with the bath stuff and let me scrub his back haha!
Lee is planning to start running tomorrow to train for his 10k run in July. I'm jealous, I really want to exercise now! I want to learn my guitar too so I'm going to add it to my p.s. I love you list. I'm going to make myself a timetable of things to keep me occupied such as piano practice and things.
We got a letter today from the RVI for a joint post natal check and post mortem results, march 22nd. I really don't want to go but at the same time I do for closure and so I can get the all clear. My anxiety is through the roof. I have loads of fluid in my ankles which is freaking me out too. I've walked loads and have elevated my feet all night but it is still here.
I've barely thought about Ellie today in trying to keep busy. I have a lot of days like this and feel like the worst mother in the world, but it's hard to think about anything when I am trying to put on a brave face. I feel myself missing her every minute though. We actually need to get another memory box because we have so much stuff now!
Here is the link to see the Elle adds love hairband, made for charity in her honour by a new friend Amanda.
http://addloveaccessories.blogspot.com/2011/02/ellie-adds-love-is-for-sale.html?showComment=1298679207734#c4097796316391976797
Over and out x
Thursday 24 February 2011
Ding dong the wedding bells are ringing
That's right, I am getting married on the 2nd of September and weirdly enough (I didn't even give it a thought), that is Ellie's 12 week scan date. How freaky is that? Like it was meant to be! I picked my wedding dress this morning and one bridesmaid dress but need to sort it in a few weeks. Didn't want to try anything on because the dresses are a bit heavy and I am still healing so will return later. We went to Shields and sorted Lee's decree absolute and also to silverlink where I basically got all of my holiday clothes bar a couple of dresses and my swimming costume.
Had to go to the doctors yesterday for a suspected DVT (suspected by me that is lol. I really should have discussed how serious my anxiety is but will wait for Dr Shiel to return from holiday). Turns out the fluid from my section seems to be favouring one side. The bleeding is much less now too.
We went to Rosalie's last night for chinese and drinks. It was a really good night. Poor Lee was the designated driver though.
I am meeting up with Gail and Rachael on Tuesday I think, which should be nice. One friend I really want to say thank you to though is Claire. I haven't seen you for a few weeks but I have really appreciated your support. And the opportunity to do my D.I.Y C-section on you....I will be there tomorrow!
I am really sad that Ellie won't be there on my wedding day. I know she would have been beautiful in a little teal and cream dress. I feel guilty for picking out new clothes for a holiday and sorting this wedding out. It's not so much excitement as survival really. The sun is a lot duller without Ellie in my world.
Had to go to the doctors yesterday for a suspected DVT (suspected by me that is lol. I really should have discussed how serious my anxiety is but will wait for Dr Shiel to return from holiday). Turns out the fluid from my section seems to be favouring one side. The bleeding is much less now too.
We went to Rosalie's last night for chinese and drinks. It was a really good night. Poor Lee was the designated driver though.
I am meeting up with Gail and Rachael on Tuesday I think, which should be nice. One friend I really want to say thank you to though is Claire. I haven't seen you for a few weeks but I have really appreciated your support. And the opportunity to do my D.I.Y C-section on you....I will be there tomorrow!
I am really sad that Ellie won't be there on my wedding day. I know she would have been beautiful in a little teal and cream dress. I feel guilty for picking out new clothes for a holiday and sorting this wedding out. It's not so much excitement as survival really. The sun is a lot duller without Ellie in my world.
Tuesday 22 February 2011
bad day
Today has been a bad day. Just really sad and low. I could cope much more with not being able to do stuff if I had Ellie to look after.
To whom it may concern: The whole world does not revolve around you. You don't acknowledge my daughter's death to me, hours after it happened, then think you have the right to use her picture as your facebook profile picture? Every time you do wrong you try to turn it on somebody else. Well, if you want to shove your head up your arse and think everybody worships you, fine, but they don't and don't use my perfect child and pretend to care when you feel like it. I die inside everyday she is not here and you were honoured to even meet her and nobody will ever match up to her. And maybe you should thank your parents for everything they've done for you recently. They have certainly put up with a lot.
All looks good today on the bleeding front, barely any.
I'm so sad and hollow. Some days I feel almost ok but today is not one of those days. I don't know what my place in this world is, I don't know where I fit in. I have Lee all the time and he is my world, I would do anything for him but I still feel so lonely. I don't want to be here. Ellie should be here, not me. I wish I could go back and trade my life so she was healthy. I don't see any joy in the world. If I did something wrong, why punish Ellie, the universe should have taken me, she didn't do anything. People tell me life goes on and I know it does but don't I get time to grieve? It has only been two weeks. I'm so confused about everything. I hate my life and to top it all off, I'm scared to go to sleep for fear of DVTs and haemorrhage (which is a bit contradictory to how I feel hence the confusion. I am conscious if I have to be here, I don't want to waste my life).
I don't know anything anymore and I don't want to.
To whom it may concern: The whole world does not revolve around you. You don't acknowledge my daughter's death to me, hours after it happened, then think you have the right to use her picture as your facebook profile picture? Every time you do wrong you try to turn it on somebody else. Well, if you want to shove your head up your arse and think everybody worships you, fine, but they don't and don't use my perfect child and pretend to care when you feel like it. I die inside everyday she is not here and you were honoured to even meet her and nobody will ever match up to her. And maybe you should thank your parents for everything they've done for you recently. They have certainly put up with a lot.
All looks good today on the bleeding front, barely any.
I'm so sad and hollow. Some days I feel almost ok but today is not one of those days. I don't know what my place in this world is, I don't know where I fit in. I have Lee all the time and he is my world, I would do anything for him but I still feel so lonely. I don't want to be here. Ellie should be here, not me. I wish I could go back and trade my life so she was healthy. I don't see any joy in the world. If I did something wrong, why punish Ellie, the universe should have taken me, she didn't do anything. People tell me life goes on and I know it does but don't I get time to grieve? It has only been two weeks. I'm so confused about everything. I hate my life and to top it all off, I'm scared to go to sleep for fear of DVTs and haemorrhage (which is a bit contradictory to how I feel hence the confusion. I am conscious if I have to be here, I don't want to waste my life).
I don't know anything anymore and I don't want to.
Monday 21 February 2011
What to do
It's amazing that when you are fine, all you want to do is sit around and do nothing but when you have to do that, you hate it with a passion. It's because when you sit, you have time to think and as much as I want to sit a replay our time with Ellie over and over, it's hard as well.
I was freaking out yesterday because I bled quite a lot but it's fine, apparently, and it has slowed down now. We had sunday dinner at the golf club which was good and then went to Louise and Ray's cottage. Nice but doesn't beat the caravan! Lee's excited because if we ever win the lottery, I told him we could buy a log cabin up there (or if we get full time jobs and save, which is more realistic but will take longer!).
Angela and the student midwife (whose name I have forgot....feel terrible but my mind is full) came out today to do my final check and discharge. It's a bit sad because our midwives have been so fantastic. However, Angela has said about getting them the info for 'A night for Ellie' because her and Ruth and Hillary might go, plus it advertises to other people. Also, Angela is going to sign my passport photos and form. We're going to get them chocolates and a thank you card. Doesn't come close to our gratitude but it's the least we can do. It's quite hard for me right now because I am so used to having constant midwife and hospital appointments, and it has been a big part of my life for a long time. I am used to being at the RVI and the doctor's surgery, it's a lot to get used to, not seeing those people and places so much. My 6 week check is apparently in March with Prof. Robson though, and the letter has been sent out so I should get it tomorrow or the next day. Then we have our post mortem results meeting with Dr Berrington in 6-8 weeks. I really hope next time we have a child too, in a billion years, that I can have my community care in Blyth, rather than at the RVI (where we will be for fetal med). I'm sure, in the circumstances, they will honour the relationships we have built up with various professionals. I find it so amazing that every single professional we have met has been so caring and compassionate, especially the doctors (because doctors are not renowned for compassion really). Dr Shiell with her phone calls to check I'm fine, Mrs Tweedie, who talked me through the surgery when I could feel it all, the anaesthetist who let me squeeze his hand as I screamed and Lee had left, Prof. Robson, who held my hand when Lee was having a scan in a different room and I was terrified at Ellie's renal scan, Dr Berrington, for everything she did for Ellie and our family on the NICU and Dr McKenzie for her brilliant care at the Wansbeck. Then, Angela, Hilary and Ruth for their wonderful sense of humour and care, Abby the midwife from fetal med, she was outstanding, the midwives on the postnatal ward, just everyone. It's like an oscars speech!
Not really sure what to do with myself now.
I was freaking out yesterday because I bled quite a lot but it's fine, apparently, and it has slowed down now. We had sunday dinner at the golf club which was good and then went to Louise and Ray's cottage. Nice but doesn't beat the caravan! Lee's excited because if we ever win the lottery, I told him we could buy a log cabin up there (or if we get full time jobs and save, which is more realistic but will take longer!).
Angela and the student midwife (whose name I have forgot....feel terrible but my mind is full) came out today to do my final check and discharge. It's a bit sad because our midwives have been so fantastic. However, Angela has said about getting them the info for 'A night for Ellie' because her and Ruth and Hillary might go, plus it advertises to other people. Also, Angela is going to sign my passport photos and form. We're going to get them chocolates and a thank you card. Doesn't come close to our gratitude but it's the least we can do. It's quite hard for me right now because I am so used to having constant midwife and hospital appointments, and it has been a big part of my life for a long time. I am used to being at the RVI and the doctor's surgery, it's a lot to get used to, not seeing those people and places so much. My 6 week check is apparently in March with Prof. Robson though, and the letter has been sent out so I should get it tomorrow or the next day. Then we have our post mortem results meeting with Dr Berrington in 6-8 weeks. I really hope next time we have a child too, in a billion years, that I can have my community care in Blyth, rather than at the RVI (where we will be for fetal med). I'm sure, in the circumstances, they will honour the relationships we have built up with various professionals. I find it so amazing that every single professional we have met has been so caring and compassionate, especially the doctors (because doctors are not renowned for compassion really). Dr Shiell with her phone calls to check I'm fine, Mrs Tweedie, who talked me through the surgery when I could feel it all, the anaesthetist who let me squeeze his hand as I screamed and Lee had left, Prof. Robson, who held my hand when Lee was having a scan in a different room and I was terrified at Ellie's renal scan, Dr Berrington, for everything she did for Ellie and our family on the NICU and Dr McKenzie for her brilliant care at the Wansbeck. Then, Angela, Hilary and Ruth for their wonderful sense of humour and care, Abby the midwife from fetal med, she was outstanding, the midwives on the postnatal ward, just everyone. It's like an oscars speech!
Not really sure what to do with myself now.
Saturday 19 February 2011
Stir crazy
I wish I could drive and do more. I've had to slow down much more to sort of stem the bleeding. It is stressing me out.
Last night, weirdly enough, I dreamt about Ellie for the first time ever and it was Ellie's first day at home. Bizarre but nice. I dreamt I was holding ner and then she started to move because she was alive.
A couple of people from Newcastle have added me today on facebook who lost their kids to ARPKD, I think Krishna recommended them. It's is horrible other people had to go through this but at least there are people like Lee and I.
I played the piano for a bit today. I really don't know what to do with myself, my concentration isn't the best. I've been trying to plan our wedding too.
Been out for dinner tonight with Ray, Louise, Rosalie, Fraser, Martin, Ciji and Lee plus Rosalie's kids which was lovely. I chatted a lot with Rosalie who is lovely.
Ellie, I miss you bambi. I love you millions. X
Last night, weirdly enough, I dreamt about Ellie for the first time ever and it was Ellie's first day at home. Bizarre but nice. I dreamt I was holding ner and then she started to move because she was alive.
A couple of people from Newcastle have added me today on facebook who lost their kids to ARPKD, I think Krishna recommended them. It's is horrible other people had to go through this but at least there are people like Lee and I.
I played the piano for a bit today. I really don't know what to do with myself, my concentration isn't the best. I've been trying to plan our wedding too.
Been out for dinner tonight with Ray, Louise, Rosalie, Fraser, Martin, Ciji and Lee plus Rosalie's kids which was lovely. I chatted a lot with Rosalie who is lovely.
Ellie, I miss you bambi. I love you millions. X
Friday 18 February 2011
My p.s. I love you project
Been a bit worried by the level of bleeding today but hopefully it has settled down now. I'm getting wrong for having done too much so I might have to take things easy for a couple of days. It's really frustrating when I feel comfortable walking about and things, not to mention the not being able to drive scenario. Took the bus today and it is not post c-section friendly at all.
We are upto £1590 in donations, which is crazy! Not even two weeks yet since we started.I have to be so careful though because sometimes, Ellie doesn't seem real when I plough all my energy into charity stuff...I need to sit down and think about what actually happened to keep her real.
I feel a bit like now the funeral is over, people just want to forget her and move on. I know swe have to live life and I'm just paranoid but I never want to forget. I'm scared people will.
As for my p.s. I love you project, I have set my goals for the year, our 1st year without Ellie. I have to turn the worst year ever into the best year ever for her. So here goes:
March: get contact lenses, lose 5 lbs (current weight is 11st 9lb)
April: Go on holiday, help 'a night for Ellie' be a big night and enjoy it
May: learn to swim 50 metres, decorate our bedroom
June: get a tattoo, submit two TMAs and get over 80%
July: hit the £3000 target for Tiny lives, do grade 6 piano
August: find a job, hit the 10st mark
September: have an amazing wedding
October: complete first degree module with a first, start two new modules
November: write something (Lee and ray are determined I should be a writer), be able to swim 100 metres
December: take Lee on a late honeymoon
January: be underway for grade 7 piano, have hit the £5000 mark for charity
February: do something big to commemorate Ellie's month, and even possibly discuss a sibling.
So, let's see how I do!!
I miss you Ellie, I'm glad you are home, I just wish you were physically here. Love you millions x
We are upto £1590 in donations, which is crazy! Not even two weeks yet since we started.I have to be so careful though because sometimes, Ellie doesn't seem real when I plough all my energy into charity stuff...I need to sit down and think about what actually happened to keep her real.
I feel a bit like now the funeral is over, people just want to forget her and move on. I know swe have to live life and I'm just paranoid but I never want to forget. I'm scared people will.
As for my p.s. I love you project, I have set my goals for the year, our 1st year without Ellie. I have to turn the worst year ever into the best year ever for her. So here goes:
March: get contact lenses, lose 5 lbs (current weight is 11st 9lb)
April: Go on holiday, help 'a night for Ellie' be a big night and enjoy it
May: learn to swim 50 metres, decorate our bedroom
June: get a tattoo, submit two TMAs and get over 80%
July: hit the £3000 target for Tiny lives, do grade 6 piano
August: find a job, hit the 10st mark
September: have an amazing wedding
October: complete first degree module with a first, start two new modules
November: write something (Lee and ray are determined I should be a writer), be able to swim 100 metres
December: take Lee on a late honeymoon
January: be underway for grade 7 piano, have hit the £5000 mark for charity
February: do something big to commemorate Ellie's month, and even possibly discuss a sibling.
So, let's see how I do!!
I miss you Ellie, I'm glad you are home, I just wish you were physically here. Love you millions x
Thursday 17 February 2011
The send off
It could have been the worst day ever but actually, Ellie phad a gorgeous send off. It was terribly hard but I have to say, 'crocodile rock' at the end was a really good choice, even Lee and I laughed. At the end there was a collection box for tiny lives and we also received cards...£187 in the donations box, £180 in cards plus £40 in online donations today alone!!! This is before any events have taken place! Her little White coffin was beautiful. We get Ellie home tomorrow and the flowers that we bought for her. We went to the sports and social club afterwards and that was great, seeing everybody. The turn out was amazing. My friend Jen and her boyfriend, Robert, had named a star after Ellie as a present for us and gave us the set, with the certificate and location and things, which was lovely. I also have a locket that my dad and Sam had got me last week to put pictures in.
Ellie's story was also in the chronicle today but it had a picture of us, not Ellie. I would have been better with Ellie, she is better looking than us two! A couple of minor details were wrong but the story was good and it has the just giving website at the end, as well as mentioning 'a night for Ellie'.
I have also seen a preview of the hairband that Bonny's friend, Amanda Hilliard, is making called 'Ellie adds love' tp raise money for the charity and it is lovely! I can't believe Ellie's influence!
So all in all, a really hard sad day, but also a happy positive one
Update: at the end of today we have made £595 in donations alone, just today!!!
Ellie's story was also in the chronicle today but it had a picture of us, not Ellie. I would have been better with Ellie, she is better looking than us two! A couple of minor details were wrong but the story was good and it has the just giving website at the end, as well as mentioning 'a night for Ellie'.
I have also seen a preview of the hairband that Bonny's friend, Amanda Hilliard, is making called 'Ellie adds love' tp raise money for the charity and it is lovely! I can't believe Ellie's influence!
So all in all, a really hard sad day, but also a happy positive one
Update: at the end of today we have made £595 in donations alone, just today!!!
Wednesday 16 February 2011
Thank you Ellie
I got in the shower just before and our wardrobes are the sliding door mirror ones, so stripping down I looked at myself properly for the first time naked. Before I was pregnant, I had crept up to a size 12, I thought my belly was huge, my thighs were massive, chunky ankles and I was so miserable. Then, pregnant, I loved my bump but panicked about afterwards, even though I only put on 2 stone. I was so worried about how I would look. Anyway, today, I looked and right now, I am a size 14 and I felt like Cheryl Cole! I have a giant slice through my belly and stretchmarks but I feel curvy, my ankles are tiny, my belly isn't flat but is smaller than a lot of peoples and my thighs are not fat. I looked and apart from my occasional pregnancy rash face (it comes and goes, will settle down in a few weeks), I felt really beautiful, bodywise. It's all thanks to Ellie.
I've got a couple of my fave pics of her and one of my section wound so you can see what an amazing job the doctor did. Please forgive the couple of stray hairs, that baby is not getting waxed for a while yet!
The top photo is so beautiful, Ellie without her wires. I love the bottom one but the top one is hung above our fire place. I just want to frame them all! We are getting a few frames and getting a big canvas done for above the fire eventually.
I also had a letter today from the Dr who delivered me, stating surgery was uncomplicated but in any future pregnancies, I will require consultant led care with early referral to the fetal med unit and I am suitable for vaginal delivery if there are no other complications.
I've got a couple of my fave pics of her and one of my section wound so you can see what an amazing job the doctor did. Please forgive the couple of stray hairs, that baby is not getting waxed for a while yet!
The top photo is so beautiful, Ellie without her wires. I love the bottom one but the top one is hung above our fire place. I just want to frame them all! We are getting a few frames and getting a big canvas done for above the fire eventually.
I also had a letter today from the Dr who delivered me, stating surgery was uncomplicated but in any future pregnancies, I will require consultant led care with early referral to the fetal med unit and I am suitable for vaginal delivery if there are no other complications.
Sheer fear
The funeral is tomorrow. I am really scared....I know what size the coffin is going to be and Lee and I are really frightened to see it. Plus it is so final. I knew when I left her at the hospital I would never see her again but tomorrow, there is no going back. Not that I could see her today if I wanted because I would be traumatised. According to Stephen, Lee's friend/funeral director, people at the funeral home have been saying how lovely she is. I'm so proud.
I had a really bad night last night. We all popped down to the Masons but for some reason, I was really concious that my bump was gone and it hurt really badly. I can remember holding her and how she feels, her skin and everything. I hate this.
Think Ellie is in the evening chronicle today, to pay tribute and to try and help our tiny lives cause. Thanks to Bonny for sorting out the headband thing, can't wait to see it!
I had a really bad night last night. We all popped down to the Masons but for some reason, I was really concious that my bump was gone and it hurt really badly. I can remember holding her and how she feels, her skin and everything. I hate this.
Think Ellie is in the evening chronicle today, to pay tribute and to try and help our tiny lives cause. Thanks to Bonny for sorting out the headband thing, can't wait to see it!
Tuesday 15 February 2011
Perfect in life, famous in death
Wow, Ellie really is causing a stir (as she always did haha, gets that from me!). The photographers are coming out from our local paper, The Evening Chronicle, today to do a piece about her and hopefully raise money for tiny lives. We also have our first definitive event set up by my friend Chloe, A Night for Ellie, at Shearer's bar in town on April 29th (Royal wedding, I think? Or thereabouts). Debra Stephenson also retweeted us (from corrie), celebrity juice tv show (go Keith Lemon, you beaut), metro radio news, Blyth Spartans football club and loads of others including Katie Piper, the lovely young model who was attacked with acid in her face and suffered some horrible burns, and PC David Rathband, who was shot by Raoul Moat last year. Cannot believe what a star Ellie is! We are so proud and we are nearly at £1000 already!
Of course, the funeral is 2 days away and it will be, without a doubt, the worst day of our lives, when we have to let Ellie go (although she will never really be gone, she is still with us). The pain is agonising but she is helping so many people.
I will also be setting up my P.S I love you project on this blog, inspired by Cecilia Aherne where I am going to set myself goals to get through my first year without Ellie. It's a way of saying to Ellie, I'm living life for you and I won't waste life when you couldn't have it.
Of course, the funeral is 2 days away and it will be, without a doubt, the worst day of our lives, when we have to let Ellie go (although she will never really be gone, she is still with us). The pain is agonising but she is helping so many people.
I will also be setting up my P.S I love you project on this blog, inspired by Cecilia Aherne where I am going to set myself goals to get through my first year without Ellie. It's a way of saying to Ellie, I'm living life for you and I won't waste life when you couldn't have it.
Monday 14 February 2011
For Ellie
Many of you will think it is hard to talk about a baby who only lived for 40 hours but I could talk and talk and never finish about Ellie. In those 40 hours, she taught our families everything there is to know about life, love and living every day like it is our last. The name Ellie means both shining light and famous warrior. Ellie was and is both.
Lee and I were ecstatic to be pregnant and couldn’t wait to know whether we would be blessed with a girl or a boy. Even from the beginning, Ellie was so awkward that when the sonographer couldn’t get her to move to see, we knew we had a girl! They noticed a lack of fluid at 20 weeks and told us the pregnancy probably would not continue. However, a week later, our little miracle appeared fine and continued to do so until 28 weeks. It was then we learned Ellie had a rare disease affecting her kidneys, lungs and liver and that Ellie still might not make it. She would not be able to pass urine, have no kidney function and her lungs would be severely impaired. Once again, Ellie refused to be told what would and wouldn’t happen and continued to grown and give us hope.
I carried Ellie until exactly 35 weeks, when she stopped moving. The RVI delivered us immediately and we got to see our beautiful baby with one eye open and hear her scream briefly before the wonderful team of doctors took over to help her breathe. Most people look at their baby for the first time and comment on how they have their mother’s eyes or father’s nose. Ellie, we laugh, bore a striking resemblance to Lee, and most of all, his receding hairline, despite a lovely head of hair.
With tiny lungs and an enlarged heart, they said Ellie might not make it to one day old and repeated that she would not pass urine and her blood pressure was far too high. Ellie was having none of that, so she decided to stabilise herself and wee, all while dropping her blood pressure. Lee will tell you she gets that streak from her mother! She fought through until the next day, test after test, but then it all became a bit too much and she let us know that it was time to go.
Those last few hours with Ellie were the hardest of our life, but also the best, as we got to hold and love her and tell her everything we needed to. We kissed her and told her how she would always be with us, not to be scared and how proud we were and will continue to be. You learn what it means to be a parent when you have to do the hardest thing, which is letting you child go. Knowing that your baby is better off not in this world is the most painful feeling but we wouldn’t change anything as the time we had was amazing.
We chose the two songs you hear today as they were songs I used to wake Ellie with and she used to dance in utero to them. When she didn’t kick to ‘Crocodile Rock’ on the 5th of February, we should have guessed our little drama queen would be putting in a speedy appearance. After all, what is interesting about a straightforward elective C-section (for Ellie, that is, I think I’m quite safe in saying that option suited me!)?
We have a thousand other memories about our little girl that we will treasure forever and even though we desperately wish things could have been different, Ellie was just too ill. We are so proud that in Ellie’s first week, she has inspired people to donate almost £900 to Tiny Lives at the RVI, who help the NICU where Ellie spent her time and did so much for our families. Ellie has also been mentioned on Alan Robson’s night owls (to which she was born) and even celebrities are promoting her cause online. Ever the little star!
Ellie, Daddy and I want to thank you for the best 40 hours of our life. You gave us everything and we will continue to talk about you every day and take you everywhere with us. We love you so much, our little fighter and we will be eternally grateful that you hung on to meet us. Keep shining bright and stay kissy-licious, bambi. Love Mummy x
Sunday 13 February 2011
Ellie's first week
Ellie was a week old last night at 10.24pm. All I could think about was the monday afternoon, holding her hand and stroking her hair, knowing that in 10 minutes we would be move on (I struggle with the d word). Lee and I had a good cry in bed last night. Of course we know we did what we had to for our bambi but it still stabs us repeatedly in the heart, every minute of every day.
Last night I sent a message to Alan Robson on night owls and within 2 minutes, he was reading it so our twitter and justgiving website got publicity, as well as Ellie's story! Not only that, my friend Jenna got Phillip from the apprentice to retweet our page! Talk about publicity so far! My little girl is amazing! Update: other people with influence are retweeting Ellie and we are upto £848!
Lee's brother, Martin and his partner, Ciji are her from the states. It was really weird meeting them for the first time but they are cool. We are missing you too though Bonny!
My boobs are still killer. Less so, but itchy from the stretching as well. The c section wound is barely there and I don't even need the painkillers, only been taking them for 3 days now because of the boob situation.
Have to write my eulogy today and tomorrow. Not looking forward to that at all.
Last night I sent a message to Alan Robson on night owls and within 2 minutes, he was reading it so our twitter and justgiving website got publicity, as well as Ellie's story! Not only that, my friend Jenna got Phillip from the apprentice to retweet our page! Talk about publicity so far! My little girl is amazing! Update: other people with influence are retweeting Ellie and we are upto £848!
Lee's brother, Martin and his partner, Ciji are her from the states. It was really weird meeting them for the first time but they are cool. We are missing you too though Bonny!
My boobs are still killer. Less so, but itchy from the stretching as well. The c section wound is barely there and I don't even need the painkillers, only been taking them for 3 days now because of the boob situation.
Have to write my eulogy today and tomorrow. Not looking forward to that at all.
Friday 11 February 2011
Making plans
Tomorrow will be one week since I gave birth. I think I'm still in shock. The midwives, Ruth and a student, came to take my stitches out today. Angela was our midwife but Ruth has dealt with us a lot too. They asked if they could look at the pictures and things but they had to stop due to crying. They asked if they were being cruel, I said of course not, we do the same thing!
We listened to 'Crocodile Rock' for the first time this morning. How bittersweet, I cry just sat here thinking about it. Coincidentally the minister rang during it, and has arranged to come on Monday at 6pm, to sort out the funeral. Everything seems so quick, like we are rushing to get rid of her. I would never let her go, given the chance. We got the rest of the photos from my mum too, we are lucky to have so many of my special little bambi.
My Dad and Sam came over today and bought me a gorgeous locket, I need to find a picture to put in it. Lee's mum also came over afterwards. His brother, Martin, and partner, Ciji arrive tomorrow from the States. It will be good to have people around the house I guess. I just feel so guilty at trying to be normal but I've never done this before. I don't know how it goes really. I already had four of the five stages of grief in pregnancy, so I'm already at acceptance but I am so hollow. I don't know what is worse right now, the emotional pain or the physical pain from my massively engorged boobs. I cried in agony last night. At least the milk will go soon. The broken heart won't.
Last night we were planning our holiday to Tunisia but actually, we didn't realise all the trouble that had gone on there alongside Egypt so now we are going to Turkey in the first week of April. We've also been planning a few things for charity, we're up to £643 for Tiny Lives. I'm going to sign up to a couple of Open uni modules for at the end of the year and focus on my piano and things, as well as looking for a job in a few months. And our wedding, of course. So much to concentrate on but none of it excites me really. Turkey will be nice though, I'm sure. I haven't been abroad for 5 years, since Berlin. I can't wait to get down the gym as well. Only 5 weeks.
Miss you Bambi x
We listened to 'Crocodile Rock' for the first time this morning. How bittersweet, I cry just sat here thinking about it. Coincidentally the minister rang during it, and has arranged to come on Monday at 6pm, to sort out the funeral. Everything seems so quick, like we are rushing to get rid of her. I would never let her go, given the chance. We got the rest of the photos from my mum too, we are lucky to have so many of my special little bambi.
My Dad and Sam came over today and bought me a gorgeous locket, I need to find a picture to put in it. Lee's mum also came over afterwards. His brother, Martin, and partner, Ciji arrive tomorrow from the States. It will be good to have people around the house I guess. I just feel so guilty at trying to be normal but I've never done this before. I don't know how it goes really. I already had four of the five stages of grief in pregnancy, so I'm already at acceptance but I am so hollow. I don't know what is worse right now, the emotional pain or the physical pain from my massively engorged boobs. I cried in agony last night. At least the milk will go soon. The broken heart won't.
Last night we were planning our holiday to Tunisia but actually, we didn't realise all the trouble that had gone on there alongside Egypt so now we are going to Turkey in the first week of April. We've also been planning a few things for charity, we're up to £643 for Tiny Lives. I'm going to sign up to a couple of Open uni modules for at the end of the year and focus on my piano and things, as well as looking for a job in a few months. And our wedding, of course. So much to concentrate on but none of it excites me really. Turkey will be nice though, I'm sure. I haven't been abroad for 5 years, since Berlin. I can't wait to get down the gym as well. Only 5 weeks.
Miss you Bambi x
Thursday 10 February 2011
Making a difference
In less than 48 hours, Ellie's memory page is up to £548!! Can you believe that?!
We went out last night to the pub with friends. It was hard, really hard but it probably did us some good. All the men ended up in tears, our friends are really emotional for us.Today we have been to register the birth and death of Ellie and also, to the funeral director's. Stephen is a friend of Lee's, which made it easier and we put together what we wanted. All we have had to pay is £20 for doctors fees, everything else is free, the minister, the coffin and casket, the car etc. Obviously we have our flowers to get and things. There is also a collection box for tiny lives as we would prefer people to make a small donation instead of flowers. At our wedding later this year, we will also have donations instead of presents...we have everything we need, no need for toasters and glasses when babies can be saved.
My milk came in today and my boobs are huge and sore. It's not too distressing though it's hard having no baby to latch on. I cried so much for Ellie last night, even though I know she is in a better place than here. I want to be there with her, or trade places, but I also know I have to stay strong because Lee needs me. He can't lose us both. Ellie wouldn't want that.
We have just been looking at a charity trek in Iceland that I am hoping to do in July. Lee and his friends are going to do a 10K or something in Sunderland, my friend Claire wants to do a bungee jump, 2 friends have contacted me to say they are doing stuff at work, my sister's school are going to make a donation from the non-uniform day, and two friend's bands are going to do a charity gig for us, which I think our mate's pub will hold. How unbelievable is that?! All for our beautiful little girl.
The hardest things today, apart from Ellie's absence is the idea of the tiny coffin next thursday and also, cremating that lovely little body that grew inside mine but we both know it is better because we can bring her home to rest with us, rather than leaving her to rot in the ground alone in a cemetary. It's also hard for me because I am still reeling from the birth and it's a hard transition for any woman, pregnancy to baby so it's awful that I can't feel her little leg sticking out of my belly anymore but also, she is gone from this world too. Two blows in one. I really don't know what to do with myself.
We went out last night to the pub with friends. It was hard, really hard but it probably did us some good. All the men ended up in tears, our friends are really emotional for us.Today we have been to register the birth and death of Ellie and also, to the funeral director's. Stephen is a friend of Lee's, which made it easier and we put together what we wanted. All we have had to pay is £20 for doctors fees, everything else is free, the minister, the coffin and casket, the car etc. Obviously we have our flowers to get and things. There is also a collection box for tiny lives as we would prefer people to make a small donation instead of flowers. At our wedding later this year, we will also have donations instead of presents...we have everything we need, no need for toasters and glasses when babies can be saved.
My milk came in today and my boobs are huge and sore. It's not too distressing though it's hard having no baby to latch on. I cried so much for Ellie last night, even though I know she is in a better place than here. I want to be there with her, or trade places, but I also know I have to stay strong because Lee needs me. He can't lose us both. Ellie wouldn't want that.
We have just been looking at a charity trek in Iceland that I am hoping to do in July. Lee and his friends are going to do a 10K or something in Sunderland, my friend Claire wants to do a bungee jump, 2 friends have contacted me to say they are doing stuff at work, my sister's school are going to make a donation from the non-uniform day, and two friend's bands are going to do a charity gig for us, which I think our mate's pub will hold. How unbelievable is that?! All for our beautiful little girl.
The hardest things today, apart from Ellie's absence is the idea of the tiny coffin next thursday and also, cremating that lovely little body that grew inside mine but we both know it is better because we can bring her home to rest with us, rather than leaving her to rot in the ground alone in a cemetary. It's also hard for me because I am still reeling from the birth and it's a hard transition for any woman, pregnancy to baby so it's awful that I can't feel her little leg sticking out of my belly anymore but also, she is gone from this world too. Two blows in one. I really don't know what to do with myself.
Wednesday 9 February 2011
My inspiration in life
Is my child. Ellie has raised £143 for tiny lives at the RVI through my friends in less than 24 hours. I am so touched by people's generosity and overwhelmed that my daughter has moved people so much. The daughter Lee and I created. In case anybody else would like to donate, the link is:
http://www.justgiving.com/Naomi-Warburton
The money goes to giving the SCBU/NICU cutting edge technology, research and so parent's like us can have momentos and memory boxes not funded by the NHS, as well as parent's/family rooms with magazines, TVs, even silly things like cuddly kangaroos for the babies. We received Ellie's clay hand and foot imprints today that the nurses had taken the time to do for us overnight, as well as taking more hair. Nothing is too much for them so in this way, we can give back to them what they gave to us. Time and love with our special little creation.
We had a bereavement appointment today to sort out registering birth/death and getting the funeral underway. It was hard but because it is 'factual' stuff, not as hard as looking at pictures and things, which is so happy too. We had to laugh in ASDA as we knew Ellie was there. First of all, there was a massive display of Bambi dvds, and as many of you know, she was our bambi. Then as we left the shop, this guy was collecting for cancer....kidney cancer! We chatted with him and donated money, we knew she was telling us too. The poor woman on the photo desk was congratulating us when we picked our pictures up and we were pleased because we are so proud of her. Then she asked how old she was and the knife in my heart twisted as I panicked. I was about to say 4 days old when Lee said 'Unfortunately, she passed away'. The woman looked so upset so I begged her to not feel bad, she wasn't to know, she was really ill. I hope that woman is OK, it was lovely to be congratulated like that.
My dad and Sam came over, brought some lovely flowers and we gave them their clay imprint and some more photos. My dad, I hope he doesn't feel guilty he didn't get back to see her. I told Ellie that he tried so hard, and we all know Ellie couldn't wait any more to come into the world. I know it will be hard to know that he never saw her, but she knows from us that she was loved by him and Sam and we don't want him to feel bad for that. My heart aches that they didn't hold her, but they can see how beautiful she was and they know she was in good hands and how much she is helping others now.
I am still sore but I recovered well from the section. The midwives said they had never seen so much walking in less than 24 hours of a section. I have a lot of lady cramping which is my uterus going back to normal. I was worried before Ellie of having an ugly scar. Now I wear it with pride. My little chunk mama came out of there.
We are getting on her plaque 'Stay kissy-licious, Bambi'. I love her so much, I keep bursting into tears when I remember how her lips feel but knowing she is helping people gets me through.
http://www.justgiving.com/Naomi-Warburton
The money goes to giving the SCBU/NICU cutting edge technology, research and so parent's like us can have momentos and memory boxes not funded by the NHS, as well as parent's/family rooms with magazines, TVs, even silly things like cuddly kangaroos for the babies. We received Ellie's clay hand and foot imprints today that the nurses had taken the time to do for us overnight, as well as taking more hair. Nothing is too much for them so in this way, we can give back to them what they gave to us. Time and love with our special little creation.
We had a bereavement appointment today to sort out registering birth/death and getting the funeral underway. It was hard but because it is 'factual' stuff, not as hard as looking at pictures and things, which is so happy too. We had to laugh in ASDA as we knew Ellie was there. First of all, there was a massive display of Bambi dvds, and as many of you know, she was our bambi. Then as we left the shop, this guy was collecting for cancer....kidney cancer! We chatted with him and donated money, we knew she was telling us too. The poor woman on the photo desk was congratulating us when we picked our pictures up and we were pleased because we are so proud of her. Then she asked how old she was and the knife in my heart twisted as I panicked. I was about to say 4 days old when Lee said 'Unfortunately, she passed away'. The woman looked so upset so I begged her to not feel bad, she wasn't to know, she was really ill. I hope that woman is OK, it was lovely to be congratulated like that.
My dad and Sam came over, brought some lovely flowers and we gave them their clay imprint and some more photos. My dad, I hope he doesn't feel guilty he didn't get back to see her. I told Ellie that he tried so hard, and we all know Ellie couldn't wait any more to come into the world. I know it will be hard to know that he never saw her, but she knows from us that she was loved by him and Sam and we don't want him to feel bad for that. My heart aches that they didn't hold her, but they can see how beautiful she was and they know she was in good hands and how much she is helping others now.
I am still sore but I recovered well from the section. The midwives said they had never seen so much walking in less than 24 hours of a section. I have a lot of lady cramping which is my uterus going back to normal. I was worried before Ellie of having an ugly scar. Now I wear it with pride. My little chunk mama came out of there.
We are getting on her plaque 'Stay kissy-licious, Bambi'. I love her so much, I keep bursting into tears when I remember how her lips feel but knowing she is helping people gets me through.
Tuesday 8 February 2011
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?
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?
Thursday 3 February 2011
Here comes the sun
Feeling strangely positive today, like things are going to be OK. I know this feeling will, inevitably disappear, but for now, I'm going with it!
The other night, Lee and I watched 'Letters to Juliet'-a chick flick starring Amanda Seyfriend-in bed on the ipad. Ellie was playing with her daddy, it was lovely and obviously I was involved since it was my insides getting kicked to crap!
My friend, Gemma, suggested making a bump cast, which I think I'm going to do. I'm also going to order a kit to make casts of Ellie's hand and foot so I hope the hospital will let me do it!
The other night, Lee and I watched 'Letters to Juliet'-a chick flick starring Amanda Seyfriend-in bed on the ipad. Ellie was playing with her daddy, it was lovely and obviously I was involved since it was my insides getting kicked to crap!
My friend, Gemma, suggested making a bump cast, which I think I'm going to do. I'm also going to order a kit to make casts of Ellie's hand and foot so I hope the hospital will let me do it!
Wednesday 2 February 2011
Doctor sense of humour
Shouldn't find this funny but my ticker on the baby forum informs me that at 34 and a half weeks, my baby's kidney's are fully developed and the liver is finishing up....hmmm..we all know that!
Tuesday 1 February 2011
Thank you RVI
Just read about a baby who died of ARPKD at 5 days old. She was stable on the ventilator but not producing urine so the doctors told the parents to remove the ventilator because there was such a poor prognosis. These American doctors keep giving no hope and yet, Stephen Schwartz is almost one month old. Lindsey and Bill found the strength to find doctors like ours and have been blessed, though life is hard.
First of all, this just shows a failing in the American system. The RVI have only told us, yes, Ellie could die, this is serious but this is what we will do. We may need to remove both kidneys. She probably won't wee and will need dialysis, which comes with complications. The level of medication for blood pressure may be high. Her lungs may not be developed. BUT we will try to help you, we will do what we can. There is 70% chance and we will fight.
Thank you NHS for being so advanced, well informed and well structured. An NHS doctor told me there are 13 centralised paed nephrology units in accessible locations and these all have incredibly specialist doctors rather than thousands of private practices where doctors probably see a lot less of ARPKD.
We really are in the right place. I feel for these families who have not had our luck and been given our hope. We know what is coming is hard and the worst may still happen but our teams are doing all they can for us.
First of all, this just shows a failing in the American system. The RVI have only told us, yes, Ellie could die, this is serious but this is what we will do. We may need to remove both kidneys. She probably won't wee and will need dialysis, which comes with complications. The level of medication for blood pressure may be high. Her lungs may not be developed. BUT we will try to help you, we will do what we can. There is 70% chance and we will fight.
Thank you NHS for being so advanced, well informed and well structured. An NHS doctor told me there are 13 centralised paed nephrology units in accessible locations and these all have incredibly specialist doctors rather than thousands of private practices where doctors probably see a lot less of ARPKD.
We really are in the right place. I feel for these families who have not had our luck and been given our hope. We know what is coming is hard and the worst may still happen but our teams are doing all they can for us.
Date day
Lee and I had a lovely afternoon. This morning we did all our boring stuff and are down to one car, mine is off road for a while, as we don't need to run both. We had a midwife appt. but Angela is on annual leave so we saw Hilary today (they are all mad as hatters in Blyth but lush...every healthcare team member we have had so far is superb). My blood pressure was fab which is good because they found one plus of protein in my urine so they have sent it away for an infection check. Ellie-phant had a lovely heartbeat today and my fundal height is still perfect! What a little fat bambi!
Lee and I went to the metro centre for dinner. Eventually decided on a new burger restaurant, that had 40 varieties of burger. I was most upset trying to decide but opted for the Onion bhaji burger....awesome choice! We then went down to the arcardes where I had ice cream and Lee won bambi a gorgeous piglet cuddly toy in the grabber machine (and not a cheap piglet either, disney store quality!). We went to HMV and bought a few dvds then to primark. Sounds boring really but it was lovely.
My friend, Landles, is going to help me do some singing recordings for Ellie belly too. I decided I want to record 3-5 tracks of me singing for her, and in case of the worst, songs to remind us of this time, etc but can't really afford the price of a recording studio in Newcastle so she said of course she would help. Will post them when they are done but we need to arrange a time.
Lee's off to golf tomorrow morning so paying bills and German work for me. I also want to write some letters and play the piano. Chill out day!
Lee and I went to the metro centre for dinner. Eventually decided on a new burger restaurant, that had 40 varieties of burger. I was most upset trying to decide but opted for the Onion bhaji burger....awesome choice! We then went down to the arcardes where I had ice cream and Lee won bambi a gorgeous piglet cuddly toy in the grabber machine (and not a cheap piglet either, disney store quality!). We went to HMV and bought a few dvds then to primark. Sounds boring really but it was lovely.
My friend, Landles, is going to help me do some singing recordings for Ellie belly too. I decided I want to record 3-5 tracks of me singing for her, and in case of the worst, songs to remind us of this time, etc but can't really afford the price of a recording studio in Newcastle so she said of course she would help. Will post them when they are done but we need to arrange a time.
Lee's off to golf tomorrow morning so paying bills and German work for me. I also want to write some letters and play the piano. Chill out day!
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