It’s been awhile since I last blogged. This doesn’t mean I think about or talk about Ava Grace any less than I have in the past 3.5 years. Ava is constantly on my mind and also comes up in conversation a lot.
I was thinking today about Pregnancy and Infant loss awareness month which is October each year. It’s nice that attention and awareness can be given to this important topic but it also makes me wonder why there is still such taboo and such secrecy around pregnancy loss. What is it that makes people so uncomfortable to talk and acknowledge these little lives?
Why are people so uncomfortable talking about miscarriage, stillbirth, infant loss and termination for medical reasons? Why are people shut down when they try to speak their babies names? Why do people hide their pain? Why do people talk about their pain yet no one wants to listen? If someone loses a loved one in their later years and they talk about them, why is that seen as natural and something that others engage in? Is it because it is memories of a person who lived a long life? A baby that dies in the womb still created memories for their parents, they still have a story to tell, even though it may have been short. Some people say goodbye to their loved one holding their hand as they take their last breath or say their goodbyes once they are already gone. So why oh why is it wrong of bereaved parents to want to see and hold their baby after they are born sleeping or pass soon after?
Maybe in 100 years the conversation around baby loss will be completely different. Maybe bereaved parents will have their babies acknowledged daily. Maybe all babies will be legally recognised whether they hit the magic 20 week mark or not. Maybe all health professionals will have sufficient training to provide appropriate and compassionate care for bereaved parents and their precious babies.
Maybe our babies names will be spoken, written, heard and not forgotten.
Wednesday 3 October 2018
Saturday 3 March 2018
Ava Grace No Footprint Too Small
Some of my readers will be aware that I started a volunteers group soon after Ava passed away to create baby clothes and keepsakes for other bereaved parents after being blessed with precious items to dress Ava in whilst in hospital.
I have posted the announcement below in the volunteers page today as I will be starting to collect again. If you are interested in joining us please follow the link. https://m.facebook.com/groups/1692090737678771
Important Announcement:
To all of you in this group who have in the past or want to in the future create tiny baby clothes and keepsakes I thank you for your patience while I took an extended break during my high risk pregnancy with our rainbow Jesse and focused on our family after his birth.
Ava's 3rd Birthday is coming up on the 16th March. I would like to start collecting donations of baby clothes, hats, nappies, booties, sleeping bags, bears and other special keepsakes after this date.
I will be focusing on collecting tiny baby clothes as quite often hospitals receive prem clothes but not clothes for the 12-24 weekers. If you do have something you have made or wanting to make that you are not sure about please feel free to message me. I am happy to receive blankets to donate but keep in mind I do't have alot of storage space so I am unable to take large quantities. There are patterns in the files section of this page but there are also many free patterns you can find on the internet. Some of the volunteers also modify bigger patterns. I myself make nappies and to make them small enough I took a larger pattern and shrunk it down on a photocopier to make it small enough for a 14 week old baby to wear. There is also a size chart that can help you when working out exactly what size to make it too. I also encourage you to look through photographs members have posted of the beautiful things they have created.
People often ask what is most needed, or most wanted by bereaved parents. I often say don't ever underestimate the power of a 3cm nappy! These are what I get the most feedback on from hospitals and bereaved parents themselves. You may ask why a nappy as a stillborn baby has no use for it. However, a nappy humanises that baby. It gives dignity to the baby. It shows the parents that someone else cares about their baby and sees their baby as someone just as precious as their living children.
Pastel colours are best, just as they are for full term babies. If you wouldn't use a particular fabric or wool for your living, fullterm baby then it would not be suitable for our tiny sleeping babies. These babies skin can be incredibly delicate so soft is best without fibres that can be rough or stick to their skin. Where possible if two of the same outfit/nappy/hat can be made that would be wonderful so that parents don't have the difficult decision of keeping their baby dressed or keeping their babies clothes as a keepsake.
Ava Grace was born at 15.3 weeks. She weighed 105grams and was 15.5cm in length. She had a head circumference of 10cm. She was tiny but fully formed right down to her fingertips and petite nose and ears. She was delicate, but more strong than many would believe. She was able to be dressed and undressed. She was dressed by my wonderful midwife in a spotted smocked dress/gown. She wore a pink beanie and a rainbow nappy. She also was given booties although these were a little big for her. The next day we placed her in her angel gown wrap in her nappy. We took the clothes she was wearing home except the nappy as we were given two the same so she could keep wearing hers and we kept one exactly the same. She was also wrapped in and gifted mini quilts and blankets. Every single piece that touched her is incredibly special to us and is displayed in our home with Ava's special things. Bereaved parents do not get to create many memories with their baby so any connection to them is so incredibly important and treasured!
If you have any questions please feel free to message me though this page. If you live nearby then I can arrange a time for you to drop off or myself pick up or I can give you my address to post your generous baby things to me. I package up these baby clothes and place a card with it too before it is sent on to bereaved parents.
In the past I have donated on behalf of this group to hospitals all around Australia aswell as a couple of hospitals overseas. Nepean Hospital (Penrith, NSW) has received the most as this hospital holds a special place in my heart as it is where Ava was born and died and the care I received from their staff was wonderful at such a sad time. I will continue to do this. If you have any contacts in hospitals or even know someone personally who is about to, or has experienced a loss and would welcome a donation of clothes and keepsakes, then please contact myself. Quite often hospitals do not have anything to give bereaved parents except an oversized blanket not in proportion to their size. Lets work together to change this so that no family experiences any more grief than what they already do.
Thankyou again for your support over the last 3 years. It means the world to me and my family. We love honouring Ava Grace and all babies who are gone too soon.
Erin Johnson
(Founder of Ava Grace No Footprint Too Small)
https://m.facebook.com/groups/1692090737678771
I have posted the announcement below in the volunteers page today as I will be starting to collect again. If you are interested in joining us please follow the link. https://m.facebook.com/groups/1692090737678771
Important Announcement:
Ava's 3rd Birthday is coming up on the 16th March. I would like to start collecting donations of baby clothes, hats, nappies, booties, sleeping bags, bears and other special keepsakes after this date.
I will be focusing on collecting tiny baby clothes as quite often hospitals receive prem clothes but not clothes for the 12-24 weekers. If you do have something you have made or wanting to make that you are not sure about please feel free to message me. I am happy to receive blankets to donate but keep in mind I do't have alot of storage space so I am unable to take large quantities. There are patterns in the files section of this page but there are also many free patterns you can find on the internet. Some of the volunteers also modify bigger patterns. I myself make nappies and to make them small enough I took a larger pattern and shrunk it down on a photocopier to make it small enough for a 14 week old baby to wear. There is also a size chart that can help you when working out exactly what size to make it too. I also encourage you to look through photographs members have posted of the beautiful things they have created.
People often ask what is most needed, or most wanted by bereaved parents. I often say don't ever underestimate the power of a 3cm nappy! These are what I get the most feedback on from hospitals and bereaved parents themselves. You may ask why a nappy as a stillborn baby has no use for it. However, a nappy humanises that baby. It gives dignity to the baby. It shows the parents that someone else cares about their baby and sees their baby as someone just as precious as their living children.
Pastel colours are best, just as they are for full term babies. If you wouldn't use a particular fabric or wool for your living, fullterm baby then it would not be suitable for our tiny sleeping babies. These babies skin can be incredibly delicate so soft is best without fibres that can be rough or stick to their skin. Where possible if two of the same outfit/nappy/hat can be made that would be wonderful so that parents don't have the difficult decision of keeping their baby dressed or keeping their babies clothes as a keepsake.
Ava Grace was born at 15.3 weeks. She weighed 105grams and was 15.5cm in length. She had a head circumference of 10cm. She was tiny but fully formed right down to her fingertips and petite nose and ears. She was delicate, but more strong than many would believe. She was able to be dressed and undressed. She was dressed by my wonderful midwife in a spotted smocked dress/gown. She wore a pink beanie and a rainbow nappy. She also was given booties although these were a little big for her. The next day we placed her in her angel gown wrap in her nappy. We took the clothes she was wearing home except the nappy as we were given two the same so she could keep wearing hers and we kept one exactly the same. She was also wrapped in and gifted mini quilts and blankets. Every single piece that touched her is incredibly special to us and is displayed in our home with Ava's special things. Bereaved parents do not get to create many memories with their baby so any connection to them is so incredibly important and treasured!
If you have any questions please feel free to message me though this page. If you live nearby then I can arrange a time for you to drop off or myself pick up or I can give you my address to post your generous baby things to me. I package up these baby clothes and place a card with it too before it is sent on to bereaved parents.
In the past I have donated on behalf of this group to hospitals all around Australia aswell as a couple of hospitals overseas. Nepean Hospital (Penrith, NSW) has received the most as this hospital holds a special place in my heart as it is where Ava was born and died and the care I received from their staff was wonderful at such a sad time. I will continue to do this. If you have any contacts in hospitals or even know someone personally who is about to, or has experienced a loss and would welcome a donation of clothes and keepsakes, then please contact myself. Quite often hospitals do not have anything to give bereaved parents except an oversized blanket not in proportion to their size. Lets work together to change this so that no family experiences any more grief than what they already do.
Thankyou again for your support over the last 3 years. It means the world to me and my family. We love honouring Ava Grace and all babies who are gone too soon.
Erin Johnson
(Founder of Ava Grace No Footprint Too Small)
https://m.facebook.com/groups/1692090737678771
Thursday 1 March 2018
154 weeks and 3 days
154 weeks and 3 days since we said hello and goodbye... it was March 2015 where Ava’s condition went downhill rapidly. We were having scans weekly, twice weekly and then then daily and every day the cystic hygroma was taking over more of her tiny body.
I hate March it has so many painful memories that I want to forget... but then that would mean forgetting her... and I can’t. Those were the days she was still alive, barely, while her lungs filled with fluid and her organs started to show stress and her body distorted by her vascular and lymphatic systems failing.
I have ultrasound videos of her, one of which was offered by the private ultrasound clinic when they knew she was dying but I can’t seem to make myself watch them. I know I really wanted them at the time. She was waving to us in one of them. I remember so vividly sitting in a specialists office begging them to give us some sort of hope. I remember going around in circles asking and being told the same thing. Hopelessness is a horrible place to be in when you are usually a very positive person.
I wish I could of somehow protected my older kids from the pain of loss, of their baby sister.
March is so excruciating for so many reasons.
I’m not sure why her third birthday is giving me the emotions I’m feeling st the moment, I guess it’s just part of grief. The fact that life is moving further away from when we held her. Wanting to go back but also running from the pain.
I love her so deeply which means I miss her so deeply. I miss the feeling of her hand in mine.
15 days until Ava Grace is 3.
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