Monday, 27 February 2012

Fundraising Update

Today I thought it would be good to update you on the fundraising progress and plans we have in place so far and a reminder of the reasons why we are fundraising.

Ronald McDonald House
I am continuing my twitter campaign to raise awareness and hopefully funds for the wonderful work that Ronald McDonald House do. Yesterday we reached £5400 on the justgiving page which is just amazing and totally beyond what I ever could have imagined we would achieve This amount will help them provide accommodation and support to the family of a seriously ill child for 216 nights. This is 216 nights where a family somewhere who are going through one of the worst times of their lives will have one less thing to worry about - allowing them to focus more of their energy and strength on supporting their child to hopefully recover. I honestly can't understand why Ronald McDonald House are not better known - I have lost count of the number of parents who have contacted me on twitter to say they don't know how they would have coped without their support. Hopefully, through twitter, we as Erin's Gift have enabled a few more people to learn about their wonderful work.

The Turner Syndrome Support Society (TSSS)
We are in the initial stages of putting together an Erin's Gift team to complete the Manchester - Blackpool bike ride in July. So far we have about 12 confirmed riders and a few more possibles, which is amazing. All will be collecting sponsorship for the TSSS so hopefully we will be able to raise a lot of money for this very valuable cause. One of the scariest things upon learning of Erin's diagnosis of Turner Syndrome was realising that it seemed very unheard of. I found great comfort in knowing there was an organisation like the TSSS who would be able to provide support and friendship to both Erin and ourselves as her parents.

The Alder Hey Imagine Appeal
I have previously written in length about the brilliant care given to Erin by all the staff we encountered at Alder Hey Children's Hospital. At Erin's funeral donations made by family and friends were split between Ronald McDonald House and the Intensive Care Unit at Alder Hey. Now we are hoping to raise more money for them throughout 2012. Our first event is yet to be fully organised, but it is likely to take place in April and involves a generous local hairdresser who has agreed to do some haircuts in return for donations. Our second event is going to take place in October and is going to be a charity auction; this will be our biggest fundraiser of 2012. I am currently in the process of formulating a list of local and national businesses to write to for items, as well as celebrities and football teams. Already on the first day of planning a generous tweeter donated two amazing items to us. So far this event feels very daunting and scary to organise, but I am hoping that we have given ourselves enough time to make it a real success.

There are a number of other charities I am becoming aware of through twitter that I hope we will be able to fundraise for in the future as well. As always, I am inspired to do this by my beautiful daughter, Erin. The bravery and strength she showed throughout her life amazed me and I couldn't be prouder of her. The effort and time I put into fundraising in memory of Erin is my gift to her and the money and awareness we manage to raise is Erin's gift to those who need it.

Thursday, 23 February 2012

“A quotation is a handy thing to have about...” - A.A. Milne

Today is 12 weeks since Erin passed away and I honestly can't believe it - 12 weeks since I last held her in my arms and cuddled her. My husband and I took a walk down to the beach and wrote her name in the sand - I hope she was able to see it.

Today has been difficult and so I am going to detract a little from the theme of the blog and take some time to think about little Erin and all she gave me. To do this I would like to share with you some quotes I have found over the last 12 weeks which have brought me comfort. Sometimes these quotes seem to sum up exactly how I am feeling, but put my thoughts much more elequently than I could ever express myself.

“If ever there is tomorrow when we're not together... there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”
A.A. Milne

"When someone you love becomes a memory, the memory
becomes a treasure."

- Author Unknown

"An Angel in the book of life wrote down my baby's birth. And
whispered as she closed the book "too beautiful for earth."
- Author Unknown

“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”
A.A. Milne

"A Thousand Words Can't Bring You Back, I Know Because I Tried
And Neither Can a Million Tears, I Know Because I Cried."
- Author Unknown

“If there ever comes a day when we can't be together, keep me in your heart. I'll stay there forever.”
― A.A. Milne

"As Long As I Live You Will Live
As Long As I Live You Will Be Remembered
As Long As I Live You Will Be Loved"
- Author Unknown

"There is no foot so small that it cannot leave an imprint on this world"
- Author Unknown

"The mention of my child's name may bring tears to my eyes, but it never fails to bring music to my ears. If you are really my friend, let me hear the beautiful music of her name. It soothes my broken heart and sings to my soul."
- Author Unknown

"The best and most beautiful things in the world cannot be seen, nor touched,
but are felt in the heart" 
 - Helen Keller

"Loved with a love beyond telling,
Missed with a grief beyond all tears."
- Author Unknown

Tuesday, 21 February 2012

Our 'home away from home'

I think it is about time I told you in more detail about the wonderful support given to us by Ronald McDonald House. When we first considered the idea of Erin's Gift, Ronald McDonald House were the first charity that we wanted to raise money for. We wanted some way to try and thank them for the incredible kindness they showed to us and trying to help them help other families seemed like a good way of doing this.

Little Erin was transferred to Alder Hey Children's Hospital when she was 27 hours old. I was unable to go with her intially due to my own medical needs and it was 9 hours before I was able to join her there. This was 9 hours of being 60 miles away from my precious baby girl and it was horrendous. When I finally reached her and was able to hold her in my arms again I knew that I couldn't bear to be apart from her like that again. Therefore, it was an incredible relief to find out that a charity called Ronald McDonald House could provide us with free accommodation on site at Alder Hey whilst Erin was a patient there.

Our first night at Ronald McDonald House is a bit hazy - I was still in shock at what had happened and the fact that Erin was most probably going to require heart surgery. I remember my husband showing me where our room was, with our private bathroom. We also had our own space in the freezer and the fridge and a secure cupboard in which to keep our groceries. I was amazed and very grateful. I had never heard of Ronald McDonald House before and it just seemed so incredible to me that such a charity existed. I honestly cannot begin to imagine what we would have done without them.

The nursing staff caring for Erin were always very kind to my husband and I and encouraged us to return to Ronald McDonald House at night to get some rest. I have to admit that not much sleeping happened, but generally we would return to our room for around 7 hours at night. Leaving Erin at these times was hard, but we understood that we needed to keep ourselves as strong as possible for her and the potentially long road that we had ahead of us. If we had not been able to stay in a room only minutes from Erin's ward, I am unsure what we would have done. I know that I could not have returned home and been so far away. This means our options would have been restricted to sleeping on a chair, in the car or trying to find a hotel/friend nearby. As it was, in the 3 weeks that Erin was at Alder Hey I never had to be more than 5 minutes from her side. - I am so grateful for this.

At the time we didn't know we would have such a short time with our little girl - we thought we would have our whole lives with her. It is since she has passed away that the true value of the support that Ronald McDonald House provide has dawned on me. Each and every memory I have of Erin is precious - the early morning feeds; her first bath; watching her for hours as she slept; long sleepy cuddles. I know that if we had not been able to stay as near to her we would not have been able to spend as much time with her and these memories which I now hold so dear would be much less in number.

Erin was critically ill for the last two weeks of her life and required a number of emergency surgical procedures in the night. As we were so near to her ward, the nursing staff were always able to phone us when this happened and we were able to rush to her side and give her a kiss before her surgery. There was not much we could do for our lovely girl at these times and being able to give her a kiss and whisper words of encouragement and love in her ear was incredibly important to us. Had we needed to stay in a hotel or with a friend, I am sure that we would have not made it to her bedside in time to do this.

I hope I have managed to express how valuable the support that Ronald McDonald provide is. We stayed with them for a relatively short time, but there were families there with us who had been there for months and months. I can only imagine how much this means to the poorly children as well as to their parents. I truly believe that the work Ronald McDonald House do gives strength to families at a time when they need all the strength they can find.

Please visit the website for Ronald McDonald House to find out more about what they do It costs them £25 per night to provide accommodation and support to one family and they support hundreds of families every night. Furthermore they are in the process of building more houses at more children's hospitals. Their aim is for there to be free accommodation for families at every specialist children's hospital in the UK.  If you wish, you can visit our fundraising page to make a donation to support them in memory of Erin Thank you very much - every pound will help make a difference.

Monday, 20 February 2012

Today I received some comfort through the post

I looked forward to something today - a feeling I don't get much recently. I was looking forward to receiving a package in the post; a package that I knew brought with it comfort and understanding. Half an hour ago this package arrived and here it is:

A beautiful bear donated by another grieving mother to help bring me comfort through a wonderful charity called Aching Arms. My beautiful bear has been donated in memory of Maisie Ruth. I cried when it arrived and hugged it tightly. It is hard to explain how much this bear means to me, but I am going to try.

Since my beautiful Erin passed away I have changed. I have become someone for whom there is no standard name - a grieving mother; a mother without her child; an angel mummy. I was pregnant for 38 weeks, I went through labour, I gave birth, I had my daughter for 22 days...... and then she was gone. Suddenly it doesn't seem okay to talk about these things anymore. If Erin had lived I would have gone through the gory details of the birth with my friends, I would be updating my facebook status with the incredibly cute things Erin was doing on a daily basis, I would be taking photo after photo and showing off my little girl to anybody and everybody who would look. I can't do that now, not because my friends don't want to listen, but because I don't know how to do it. When you have a new baby it is perfectly natural for you to talk about them and bring them into conversations. When your baby has died it doesn't feel natural anymore. I guess this is associated with the taboo that is baby death.

The people I have found it easiest to talk to are people that I have never even met - other bereaved mothers through twitter. We don't go into great detail with eachother, but we are there to offer comfort: through a virtual hug; a message that says, 'I understand'; or a quote that seems to sum up perfectly how you are feeling in that moment. This bear is a further extension of that - a physical thing that I can hold and hug with the knowledge that it has been donated with the most precious love in the world - from a grieving parent in memory of their precious child.

As well as feeling as though I am connected to the mummy who donated this bear, I also feel as though this has connected little Erin and Maisie Ruth in some way. Erin never got the chance to make friends or play and have fun - all of her short life was spent in hospital having horrible procedure after horrible procedure. This may sound silly, but now I hope that wherever they are Maisie Ruth and Erin have found eachother and that they are laughing and playing together.

As well as the comfort I have got from receiving a bear, I have also felt comfort from donating a bear in memory of Erin. I know how special Maisie Ruth's bear is to me and how much I will treasure it and I hope that Erin's bear will be as precious to another parent who needs it. I now plan to donate a bear on Erin's birthday every year.

I hope I have explained how special I think the work that Aching Arms do is. The charity is run by a group of bereaved mothers and to me that is obvious because what they do works. In some ways the idea of giving a bear to a bereaved mother to ease their aching arms seems simple, but the emotion and meaning behind it makes it so much more than that. Please visit their website to find out more and support them if you can I wish that all bereaved parents could be offered a bear and that all babies whose lives ended too soon could have a bear donated in their memory.

Sunday, 19 February 2012

Turner Syndrome.......what's that?

We have started organising an Erin's Gift team to complete the Manchester to Blackpool bike ride in July. We are going to use this event to raise money for a very special charity - the Turner Syndrome Support Society (TSSS), so I thought now would be a good time to talk a bit more about Turner Syndrome.

I have to be very clear from the start and say that I do not know a huge amount about Turner Syndrome. As mentioned previously, we found out that Erin had this at 20 weeks of pregnancy following amniocentesis. We had never heard of it before and unfortunately our local hospital did not feel confident in explaining it to us. Therefore, upon learning of the diagnosis in a phone call on a Tuesday afternoon, we had to wait until the Friday before we could meet someone to talk through the implications for our precious baby girl. This was an awful wait - when all you have is the name of a chromosomal disorder that you know your unborn child has, the internet is not a friendly place. We read horror story after horror story and became uncertain as to whether our gorgeous girl would even survive pregnancy, never mind be able to live a good life once she was born. Among the scary stories, however, we found one website that offered some hope - the website for the TSSS  In particular, after looking through the gallery at pictures of gorgeous smiling girls we realised that maybe Turner Syndrome wasn't something to be too scared of and felt some reassurance.

In  brief - Turner Syndrome is a chromosomal disorder affecting only females, causing deletion of the X syndrome. Therefore, whilst the majority of women have two X chromosomes, women with Turner Syndrome only have one. In mosaic Turner Syndrome meanwhile, the second X chromosome is only partially deleted. The features of Turner Syndrome vary between women. In our meeting with the geneticist it was explained that Erin had a rare form of mosaic Turner Syndrome.

The geneticist reassured us that, although the miscarriage rate for babies with Turner Syndrome is extremely high (approximately 98%) we were now past the risky period and there was no reason why our baby should not survive pregnancy. She also told us more about the possible implications of the diagnosis for Erin, explaining that nothing was certain and a lot would have to be wait and see for when she was born. Overall she was very postive, however, there were 2 aspects of it that caused me particular worry. The first of these was the possibility of Erin having a congenital heart defect. We were reassured that she would have a scan to check this shortly after birth, but that she may require heart surgery.  However, antenatal scans did not detect any problems with Erin's heart and the cardiologist explained that even if there were, the surgery to fix it was relatively routine. At no point did we consider the fact that a heart defect may result in us losing our little girl.

The second thing to worry me was the fact that, due to the nature of Erin's particular form of Turner Syndrome, she would be infertile. This made me incredibly sad for my precious little girl and was the aspect of Turner Syndrome that I found most difficult to deal with. Throughout my life I have always wanted to be a mummy - the thought of being pregnant had always fascinated me and the experience of it had not diminished this. Despite this pregnancy being a stressful one I still loved it. I adored every day of carrying my baby; feeling her kick; watching my ballooning tummy and even the pain when she stuck her foot in my ribs. Realising that my darling daughter would never get to experience this filled me with great sadness. I felt glad that there was an organisation like the TSSS who would be there to support both Erin and I when the time would come to discuss this with her.

I think it surprises people to learn that Turner Syndrome affects 1:2000 females - I think this is a lot considering the lack of awareness there is. The work that the TSSS do is so important and so valuable to the women who have Turner Syndrome and their families. It had often eased some of my worries for Erin when I thought about the fact that she would have this community to support her and I was sure that through it she was going to make some great friends.

I have not gone in to great detail regarding Turner Syndrome in this post- mainly because I do not have the knowledge to do so. I would encourage everyone who would like to know more to visit I hope we are able to raise lots of money to support this wonderful organisation as my brief experience with Turner Syndrome has taught me that much more awareness of it is required. Despite, the fact that the care and support we received from our local hospital during pregancy was brilliant it did always concern me that they did not know a huge amount about Turner Syndrome. I do not believe that any couple should have to wait 3 days from  hearing a diagnosis to finding out what this would mean for their child. Furthermore, I can count on one hand the number of people that we told about Erin's diagnosis who had heard of it before. I was preparing myself for finding out as much as I could about Turner Syndrome in order that I would be able to support my daughter in the best way possible and were it not for the TSSS I think this would have been a much more difficult task.

Friday, 17 February 2012

The day that twitter gave me hope

I honestly can't believe that I am sharing our story on the internet - that I am allowing people I have never met into our little world. 3 months ago I never would have imagined I would be doing this, but as I have found out - in 3 months your whole world can change.

The reason I am sharing our story is because I have seen the power of the internet to do good - I have seen how sharing a story can encourage people to donate their time and money to incredible causes. I have seen true kindness.

I had never been a huge fan of social media before I was pregnant - I had a facebook page and an occasional dalliance with twitter. Following Erin's death I was reluctant to return to my twitter page - my last tweet was one expressing excitement at my maternity leave which was about to start. That tweet reminded me of the hope and joy that I had once felt. Then, in the early hours of one morning, when I was feeling incredibly sad, I decided that I wanted to try and do something to help the people who had provided us with such comfort and support over the previous month. I set up a justgiving page to raise money for Ronald McDonald House, with a target amount of £500. I felt a bit silly, thinking this was optimistic, but decided it was worth a try.

I logged onto twitter and decided I would see whether anyone would retweet my page - the first person I chose was Andrew Flintoff. About 5 minutes later, to my great shock and surprise, I received an email notification - Andrew Flintoff had retweeted my tweet! Suddenly I had more followers and more retweets - a donation of £5 was made on my justgiving page. I was amazed and for the first time following Erin's death, I had hope!

It was just the beginning - in less than 6 weeks the justgiving page has raised over £5000. I now have over 1400 followers on twitter and my tweet has been retweeted by celebrities such as Lilly Allen, Danni Minogue, Gary Neville and Jo Whiley. More than that, I have had the great honour of meeting some truly incredible people who inspire and amaze me. I have met parents of sick children who are using twitter to raise funds and understanding; I have met brave people who are battling their own illnesses and tweeting to raise awareness and I have met other people like me - bereaved parents trying desperately to keep the memory of their precious child alive. I am moved by the kindness shown to me by complete strangers on twitter on a daily basis and am so grateful for the support I have been shown.

Twitter has allowed me to show off my beautiful girl to literally thousands of people. It has allowed me to raise money for a cause that is incredibly close to my heart and who help hundreds of families every single day. It has introduced me to people who have experienced similar loss and devastation to that which I have experienced. It has introduced me to friends.

I have met so many lovely people on twitter, that it seems a shame to single any people out. However, I do want to acknowledge two people who have shown incredible kindness to me and taken specific actions to support my fundraising.

One lovely tweeter - @dottiedesigns - has kindly donated 10% of the proceeds from the sale of her beautiful christening book to Ronald McDonald House. You can see the item here and find out more about her at her blog

Another kind tweeter - @LittleDoers - has generously agreed to help design a logo for Erin's Gift that we can use on our fundraising endeavours. This is fantastic as, even though I can see in my head how I want the logo to look, transferring that onto paper is near on impossible for me. You can see what she does here

I want to take this opportunity to thank all those who have helped me on twitter - there are so many of you. I hope I never become complacent about the support I receive, because it truly amazes me and has enabled me to take Erin's Gift further than I ever imagined......and it is still only the beginning!

It is all for you - beautiful Erin xxx

"Sometimes when we are generous in small, barely detectable ways it can change someone else's life forever" Margaret Cho

Thursday, 16 February 2012

I see you Erin, when I close my eyes.....

I see you Erin, when I close my eyes.....

I see you as a newborn, sleeping in my arms; your little hands clenched in fists and your beautiful mouth pouting.

I see you as a toddler, running all around; your little legs so chubby and your gorgeous face smiling.

I see you as child, playing with your toys; your hair long and golden and your expression so exciting.

I see you as an adult, chatting with your friends; your eyes deepest blue and your manner kind and caring.

I see you Erin, when I close my eyes.......... and for that I am thankful.

"No matter where you go in life or if we are far apart, a mother’s love will always follow because you left footprints on her heart." (Unknown)

Wednesday, 15 February 2012

Alder Hey

I think it is time for me to tell you about Alder Hey Children's Hospital and how wonderful the staff there were to us. As I explained in an earlier post, we spent time on two different wards - the first week on K2 and the next two weeks on the ICU. We came across nurses, doctors, surgeons, physios, secretaries, healthcare assistants, cleaners, anaesthetists, perfusionists and all were brilliant. In fact, I have nomintated them for a Tommy's award and rather than replicating my words, I thought I would copy the letter here:

"I would like to nominate the staff working on the intensive care unit at Alder Hey Childrens Hospital for the Miracle Unit Award.

My darling daughter, Erin, was born on 9.11.11 and transferred to Alder Hey when she was 1 day old. She had Turner Syndrome and was found to have a problem with her heart. On 16.11.11 she underwent heart surgery to fix this. Tragically, she suffered complications following her operation and was cared for in the ICU up until her death on 01.12.11. The staff who work on the ICU were incredibly kind and caring, not only to Erin, but also to myself and my husband.

Erin needed to be placed on an ECMO machine as her heart was very weak following the operation. This machine required attention 24 hours a day from a very dedicated team of staff. They had to monitor the flow of blood through it and take samples at regular intervals to check a number of things. It seemed very complicated and required a lot of attention, but the staff were never too busy to explain to us what they were doing and why it was necessary. We were amazed and extremely grateful for the dedication that they showed and the concentration and enthusiasm that they gave to their job.

Erin is our only child and we only had 22 days with her; we were never able to take her home. The staff on the ICU were so aware and considerate of this. Her medical needs meant that there was not much we were able to do for her ourselves, but they always ensured that when that was something for us to get involved in, we did. Therefore, I was able to assist with Erin's daily care needs and wipe her eyes and mouth and sometimes help change her nappies. They also understood my desire to breastfeed and supported and encouraged me to express milk throughout Erin's life. Being able to do these small things for my daughter was so important to me and I am so grateful that the staff realised this and encouraged me to help them. It demonstrated their empathy and understanding of my needs as a mummy.

Erin had to undergo many painful and unpleasant procedures during her short life, but the care with which these were carried out was plain to see. The staff on the ICU spoke so kindly to Erin and with such warmth when they were performing procedures, that it made leaving her in their care that little bit easier. Leaving my newborn baby was so difficult, but I always felt confident that she was being cared for by an extremely professional and caring group of people.

I can honestly say that we never came across one member of staff on the ICU who did not treat ourselves or our daughter with the upmost care and consideration. They encouraged us to get rest and look after our own needs as well as those of Erin. They also provided us with a room on the unit during the time when Erin was most medically unstable.

I will never be able to demonstrate to the staff on the ICU my full appreciation for the care they gave to little Erin. I am so amazed at the unwavering enthusiasm with which they approached their jobs even towards the end of what were very long shifts. At times they must find the work they do difficult, but they never let this show. They made what has been the most difficult and distressing time of our lives that little bit easier. There were even occasions during this awful time when we laughed and joked with the nursing staff - a true testiment to their humanity and kindness.

Finally, when Erin passed away they treated us with incredible care and compassion, enabling us to hold her as she died and cuddle her afterwards. Their kindness at this awful time will stay with me forever.

I wish more than anything that I could have had my darling Erin at home and in my care for the 22 days that she lived, but this was not possible. As she had to be in the care of others, there are no other team of people that I would have wished her to have been with. I truly think that the staff working on the ICU go above and beyond their job roles on a daily basis and truly deserve this award."

We will forever be grateful to them and will strive to show this appreciation through our fundraising. Therefore, The Alder Hey Imagine Appeal are one of the charities that we hope to support and raise money for through Erin's Gift. I hope that all sick children and their families receive the support that we did.

Tuesday, 14 February 2012

It's all about Erin

Well, today is Valentine's Day so I thought today's blog could be dedicated to showing off the love of our lives - our little Erin.

Shortly after birth, before we knew there were any problems with her heart.

Sleeping on mummy

Looking beautiful.

I have had enough milk, thank you very much!

The morning of her operation, sleeping peacefully.
“If ever there is tomorrow when we're not together... there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”
A.A. Milne

Monday, 13 February 2012

The beginning of Erin's Gift

Today I thought I would try to explain how and why we are doing Erin's Gift.

For me the beginning of Erin's Gift was when we were packing up our things from Ronald McDonald House and getting ready to return home without our little girl. As I was emptying the little freezer we had been allocated I came across about 4 bottles of expressed breastmilk. Throughout my pregnancy I had felt very passionately about breastfeeding and had done a lot of research. I understood that it is not an option for all women and one of my biggest concerns was that I may have difficulties breastfeeding Erin. With the wonderful support of the nurses on the ward I had expressed for Erin throughout her life, hoping that she would be able to receive the milk through a tube during her recovery and eventually would be able to breastfeed. I had stored up about 70 bottles of milk and the ICU were running out of storage room in their freezer, so I had begun to store it in ours. As I looked at those bottles of milk I felt extreme sadness that my little Erin was never going to get to use it. Then I remembered something from a documentary I had seen about donating breastmilk. I took the bottles up to the ICU and asked the nurse whether this would be possible.

Several days later I received a telephone call from the milk bank to say that Alder Hey had contacted them about my milk. They posted me a kit to take to my GP to get my blood tested and confirmed that if my results came back clear, my milk could be donated. Thankfully the tests were fine and the breastmilk that I had so lovingly expressed for Erin could now be given to other poorly babies in hospital.

 When I learned that the milk I thought of as Erin's was going to help other babies I felt a glimmer of hope through my sadness. It felt like this milk was Erin's gift to other sick babies. As recent stories in the press have shown, milk donation literally helps save the lives of premature babies (

This made me think that we could do other things in Erin's memory to help the kind people who had supported us so much through this; the most awful time of our lives. I now feel as though the fundraising I do and the time and effort I give to it is a tribute to my precious daughter and my gift to her. Furthermore, the funds and awareness that we are hopefully able to raise, done in the name of Erin, are her gift to those that need it. Essentially, Erin's Gift is our way of honouring our beautiful daughter who gave us so much in her short life. It is also a way to say thank you to the generous organisations who helped us and help them to support others.

Milk banks are always trying to recruite women who would be willing to donate their surplus breastmilk or regularly express milk for them. If you are interested in breastmilk donation you can read more about it here

Sunday, 12 February 2012

Toddle round the Park

The aim of this blog is to record the fundraising that is done in memory of little Erin for the charities that are close to our hearts. My previous posts have intended to introduce you to Erin and tell a little of our story in order to help explain why we want to fundraise in her memory. This post is a small interruption to that as the first event in memory of Erin is taking place today!

A university friend has very kindly organised a 'toddle round the park' with her friends and their children. All sponsorship will go to Ronald McDonald House and you can see their justgiving page here

This event is just one example of the amazing support and love that my husband and I have received from friends and family over the last 3 months. I feel honoured that people are donating their time and money in memory of my little girl. I can assure you all that it is going to an amazing cause and thank you sincerely.

Coming Home

We stayed at Ronald McDonald House on the night that Erin died; huddled in one of the single beds trying to process what had just happened. I felt empty.

The next day the bereavement support worker told us what to do, which was just what we needed. I wasn't up for making any decisions. He took us in a taxi to the town hall in Liverpool where he had booked us in for a double appointment. In the first half of the appointment we registered the birth of our beautiful daughter Erin Susan on 9th November 2011. In the second half we registered her death just 22 days later on 1st December 2011.

As had become the norm at Alder Hey, the support that we received from bereavement staff was brilliant. We were given a memory box, locks of Erin's hair and foot and hand prints - things we will treasure forever. Then the moment that I had been dreading arrived.....we had to leave and go home without our little girl. Home to the moses basket in our bedroom, the pram in the lounge and her nursery, which she never got to see.

Saturday, 11 February 2012

Erin's fight

The next 21 days following Erin's transfer to Alder Hey were surreal. It is hard to describe my emotions as we dealt with the fact that our beautiful newborn baby had a congenital heart defect and required surgery in order to survive. She spent the first week of her life on medication to support her heart and you would never have known there was anything wrong with her. I treasure the memories that we have from this time and we really got to see her personality begin to shine through. We were able to feed her, change her nappies and bathe her and I almost felt like a proper mummy. She was incredibly brave and very expressive - always letting medical staff know when she didn't like what they were doing to her with a sideways look of disdain. After a slow start with feeding she began to really love her milk; guzzling it down as fast as she could. Her daddy and I were totally in love with her - she was absolutely the most perfect daughter. Of course, we were also apprehensive and worried about her heart surgery, scheduled for 16th November, when she would be 1 week old. However, neither of us ever anticipated or prepared for the fact that she may not make it. We had discussed consent with the doctors and the risk of the operation was explained as 2 - 5%. The thought that we may be leaving hospital and returning home without our little girl never crossed our minds.

The day of her operation will remain forever as one of the worst of my life. We were told it would last about 6 hours, but she was in theatre for 12 as there had been complications. That night Erin bled into her lungs and she needed to be put on an ECMO machine - a type of bypass. I am grateful to Ronald McDonald House for many reasons, but this night is one of the biggest reasons why. Thanks to them we were sleeping only 3 minutes from the ICU. When Erin experienced difficulties they phoned us and we were by her side within minutes, meaning we could give her a kiss before she underwent yet  more surgery. We almost lost her that night.

The next 2 weeks were spent with Erin in ICU - she remained critically ill for the whole time and things were very different from the week before. Her chest remained open from the operation and she was attached to multiple machines. We were no longer able to hold or cuddle her and she was barely conscious. The moments when she opened her eyes were both lovely and horrible for me. Lovely because I had the opportunity to look into the deep blue of her beautiful eyes and reassure her that I was there for her always, but horrible because I was so concerned that she may be in pain. The staff on the ICU were wonderful, both to little Erin and to us, but I will save my thoughts about their kindness for another day.

Finally, after 22 days of incredible bravery, Erin passed away at 5pm on Thursday 1st December, 2011. She had experienced difficulties with her lungs over the previous 2 weeks and after further bleeding the doctors felt that there was nothing more that could be done for her. I held her in my arms as she took her last breath, totally devastated that my little girl who had filled me with such love and pride was being taken from me. The day that she was born changed me forever as I became a mummy and the day that she died changed me again. I can't fully explain the amount of love and pride I feel when I think of her. She will forever remain my gorgeous baby girl; no longer in my arms, but always in my heart.

Friday, 10 February 2012

Introducing Erin

Hello. I have decided to start a blog detailing my journey as I aim to raise money and awareness for charities that are close to my heart. I have to be honest and say that most of these charities were unknown to me 3 months ago, before my beautiful daughter Erin was born. Tragically, Erin passed away on 1st December 2011, aged 22 days, and it is in her memory that I now aim to raise as much money as I can. I am joined in this aim by Erin's daddy.

I will begin my blog by telling you a little about Erin. We found out that our baby may have difficulties at the 12 week scan in pregnancy when she was seen to have an increased nuchal fold. We were told that this was indicative of Down's Syndrome and decided that, although we would not terminate the pregnancy, we would have amniocentesis to find out for certain. This was a terrifying experience, but ultimately led to a diagnosis of a chromosomal disorder called Turner Syndrome. We were advised that the implications of such a diagnosis were wide-ranging, but that there was a possibility our daughter would have heart problems. Due to this, it was arranged for Erin to have a heart scan within 48 hours of birth. We were told not to worry too much, however, as if there was a problem it could be fixed with surgery. Additionally, antenatal scans had shown no problems with her heart.

Erin was born at 38 +1 weeks on 9th November 2011 at 8:45am and she was totally gorgeous. There had been some concerns with her heart rate during birth and she required resuscitation after she was born, but the paediatrician checked her over and thought she looked perfectly healthy. Her daddy and I were overjoyed with our beautiful daughter who had overcome such adversity to be born (estimates suggest that 98/99% of pregnancies with Turner Syndrome miscarry). We knew straight away that she was a little figher and couldn't wait to take her home.

That afternoon, Erin had a heart scan, which the doctors thought looked fine. They sent a copy to Alder Hey Childrens Hospital for a second opinion to make sure. The next day, doctors at Alder Hey telephoned to say they wanted to scan Erin themselves. Doctors would not discharge me, so Erin went to Alder Hey with her daddy and I was told she would return in 3 -4 hours .... she didn't! The doctors at Alder Hey detected turbulence on the scans and they wanted to monitor her further. I immediately set about trying to get discharged myself and was finally reunited with my precious daughter at 9pm that night. Being 60 miles away from my new born daughter for those 9 hours was horrendous and I was so relieved when I got to Alder Hey to find out that a charity called Ronald McDonald House could provide us with free accommodation only 3 minutes from Erin's ward. We were to stay there for the next 3 weeks until Erin tragically passed away.