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)

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.

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

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 (http://www.dailyrecord.co.uk/news/real-life/2012/02/09/premature-baby-girl-survived-after-hospital-s-breast-bank-came-to-the-rescue-86908-23741987/).

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 http://www.ukamb.org/donor.html

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 http://www.justgiving.com/Naomi-Bartholomew

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.

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.