Top Tweets for #ZeroNEC
Today is #NECday and a time for me to think of all the babies that have been afflicted with NEC and those that have passed from its as yet unclear methods of damage. But we know much more now and we can continue to do better. #preventNEC #worldwithoutNEC #zeroNEC
May is #NEC Awareness Month! Here's how you can help us build a π without NEC:
1. Get your team ready to recognize #NECday (May 17)
2. Register for https://t.co/Mp9r0zNCxq (May 26)
3. Give https://t.co/0SnImJZG7Y @jenncanvasser @noahcanvasser are matching gifts up to $12k!
Scored my first competitive goal for @SUFCBrighton tonight against @NewhavenFC
That was for you Eva ππ¦
Before I left tonight to go and play I asked Una if I would score. She said yes. She knew I would and she knew I needed it.
#EvaRoseTrust #preventNEC #zeroNEC
Eva lost her life to Necrotising Enterocolitis as a result of prematurity.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss #Grief #griefsupport #Twins #Twin #TwinLoss #Rainbow #Rainbowbaby
SCBU: Often babies born after 32 weeks gestation and who do not require intensive care.
LNC: Often babies born between 28 and 32 weeks gestation who require a higher level of medical support than offered at a SCBU.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC
We were also certain that if there was anything from our heartbreak that could be used to further research and save other babies that we had to do this.
Autopsy is a choice and not a decision to be taken lightly but one we felt was right for our situation.
#PreventNEC #ZeroNEC
An early part of our bereavement journey was to decide whether we would like an autopsy carried out on Eva. This would confirm whether the suspected cause of Eva's illness, Necrotising Enterocolitis was correct.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch
I often find myself saying "we lost our daughter" yet knowing that we didn't lose her...she died, we had to let her go and her life was gone along with her body and presence. What we lost was everything mentioned above.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC
Loss
Loss, a word that is used so often to describe a whole range of aspects of bereavement.
Loss of life, body, time, expectations, hopes, dreams...the list goes on.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #Eva #Babyloss #Grief #griefsupport #Twins #Twin #TwinLoss #Loss
A life is a life, no matter how small. We have to break the taboo and stop accepting that 'not all babies will make it'.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #Babyloss #Grief #griefsupport #Twins #Rainbow #Rainbowbaby #Pregnacyafterloss
I think that some stages occur and then reoccur at other points in the bereavement journey and some stages may be felt and then never resurface.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss
Thinking about pregnancy after loss is a mine field!
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss #Grief #griefsupport #Twins #Twin #TwinLoss #Rainbow #Rainbowbaby #Pregnacyafterloss
Memories and Time is all we have so for us, we must spend the time we are fortunate to live, doing good and making changes to ensure others don't get such an inadequate time for 'living'.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva
Moving forward and looking back seems to go hand in hand, moving forward is the only option but dates, events will always bring back particular trauma, memories.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis
-Provide Education opportunities to NICU, SCBU and LNC units and all staff within.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss #Grief #griefsupport #Twins #Twin #TwinLoss
Many couples struggle to come to terms with what has happened and are unable to support each other.
Our aims include:
-Identify the breadth of support needed.
-Tailor support to individual family needs.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva
Eva means 'life' and Una means 'one'.
Una & Eva came from one egg and as it would unfold there would only be one life lived between the girls.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss
We had a list of names for both genders but truly no fixed names for our girls. We spent time playing around with names while eagerly waiting to leave for Brighton to be with the girls.
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Babyloss #Grief
We had intended to find out the sex of our twins prior to the birth however the girls were not going to make it that easy for us!
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss #Twins
- Run surveys to improve the understanding of experiences, practice, and support currently available.
- Fund research into NEC. "
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis #Babyloss #Grief
- Think carefully about the words you choose & don't be afraid to ask for support regarding what to say
- Check up on their mental health
- Listen
#ERT19for19 #PreventNEC #EvaRoseTrust #ZeroNEC #EvaRoseTrustLaunch #Eva #necrotizingenterocolitis #necrotisingenterocolitis
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