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Saturday, 10 September 2016

Infertility after loss

Infertility after loss - what sad, depressing words. Yet for many bereaved parents this is another painful part of their journey. 

Why can some people seem to fall pregnant in an instant? How do people manage to fall pregnant in consecutive years? What's with having 4 under 4? 3 "surprise" pregnancies! Why did my baby die after everything we went through to have them? These are all statements and questions that women share on the journey. 

I am fortunate that I have two healthy living children that I am eternally grateful to be able to hold in my arms and watch them grow. I also have three waiting for me in heaven, including Ava. 

I have been told the words "I'm sorry there is no heartbeat, your baby stopped growing weeks ago", I have been shattered hearing that my fertility has been reduced even further due to damage caused by an ectopic pregnancy. I have held my tiny baby Ava Grace in my arms and then had to let her go. 

I have also been on the path of infertility. 

Infertility - It's another word alongside miscarriage/stillbirth/early induction that can at times provoke an uncomfortable silence but more often that not, well meaning but utterly devasting comments that hurt to the core.

Just relax 
My husbands brothers cousins friend had to do IVF and they had triplets!
Go on a holiday, that worked for me!
You obviously aren't meant to have more children 
Why would you want another, you already have a pigeon pair (well they forget about Ava) 
More kids cost more, think yourself lucky 
Quit while your ahead 
Don't roll the dice 
You might end up with another baby who has something wrong 
What if you miscarry again
You know another baby won't replace her
Do you wish you didn't use a favourite name for her and saved it for another?
The older you get the more risks there are that your baby will have something wrong with it 
The age gap will be way too big
Are you the only one in your family that has issues falling pregnant?
Doesn't your twin sister have 3 healthy children?
You'll have a spoilt child since you will have two kids at school and another at home 
I didn't think you would want another after losing babies
I wouldn't try again if it happened to me 
Can the medications your on (for infertility) cause your baby to have birth defects? Was the medication you took to fall with Ava the reason for her birth defects?

The list goes on and on and these are just some of the things people have said to me.

Some of it is well meaning and I know they say it because they don't know what to say but I can tell you now telling someone to relax and then it will happen is a ridiculous thing to say to someone who has both physical and hormonal reasons for infertility. 

I have only ever had one natural conception where no intervention was needed and that was more than 8 years ago, so I think it's quite reasonable to assume that 8 years later that a naturally occurring pregnancy would have to be in the miracle category! 

I have completed 17 rounds of ovulation induction which is a type of assisted conception using medication. I have done 1 full IVF cycle and 1 frozen embryo transfer. I have swallowed pills,  I have given myself countless needles - at one point 3 a day, I have hundreds of blood tests to the point of now having blown veins and scars which are visible on my arms. I have endured multiple surgeries and invasive tests. I know way to much gynaecological and fertility language that only doctors and nurses should know. I understand hormone levels and what it all means. I know the disappointment of cancelled cycle after cancelled cycle and just wanting to have a chance! 

I am incredibly grateful to modern medicine and living in a country where I have access to safe and affordable treatments. A few generations ago my story would have been very different. These days specialists can do wonderful things to manipulate hormones and bypass physical issues that may be working against you. 

Infertility in itself is a lonely, soul destroying, joy crushing journey. Infertility after loss just adds another layer to your grief. I have come across way too many women who have conceived their miracle after years and years of infertility only to lose their baby in an instant. Every month that you aren't pregnant after loss just reminds you of what you have lost and who isn't here with you now. You live trying to reconcile with yourself just how much you wanted the baby who isn't here with you now, but also how desperate you are to be pregnant again and growing a life inside of you. You are fully aware that another baby is not at all a replacement. You just don't want your story to end the way that is has. Trying to conceive after loss is incredibly scary. You have to leave yourself open to possibly exposing yourself to incredible pain once again. You have to push the fear to the side to make way for a tiny speck of hope. You have to believe that through the pain and tears that it will be worth it because that's the only thing that picks you up to try again the next month. 

After all, 
Ella was worth it.
Oliver was worth it.
Ava was worth it. 

Hopefully this journey we have walked the last few years will end with holding a living baby that gets to come home and use their siblings things that have been packed away for some time now. I hope my kids get to greet a sibling that will let out a cry, not one that is silent. There are sadly many families who are parents to children they can't hold. There are also many families who go through the loss of fertility and the dream of having the family they dreamed about. 

This is just part of my story, it's not the start and it's not yet the end...



Friday, 12 August 2016

Pregnancy and Infant Loss Remembrance Day advertisement

For all bereaved families in the local and wider community, you are invited to the Pregnancy and Infant Loss Remembrance Day ceremony held at Nepean Hospital on the 14th October 2016. If you are not in the Penrith area, many hospitals and support services also hold their own Remembrance Day services. I feel honoured to have been asked to speak and share about Ava and her legacy at this years event.

Wednesday, 10 August 2016

Seeds for Siblings

A couple of weeks ago I came across an article on social media about a small organisation helping bereaved siblings. 

I was really instantly interested as it is not often to hear about support for siblings who have lost a brother or sister. 


"Seeds for Siblings provides children who have experienced the loss of a sibling during pregnancy or the days after birth with handmade fabric bags containing Sunflower Seeds. These seeds can then be planted in memory of their brother or sister." - seeds for siblings 


I love the little rock that came with the sunflower seeds. It will sit perfectly in our garden. Ava's name is handpainted on one side and a sunflower on the other side. 



Our kids were excited to receive these and can't wait to plant and watch their sunflowers grow. What a sweet connection this will be to their little sister. 
Thankyou Jamilla in what you have started to help beareaved families. You truly acknowledge the loss that these children feel. 


www.seedsforsiblings.com 

Sunday, 3 July 2016

Ava Grace No Footprint Too Small - Update July 2016

I haven't blogged in quite awhile! However I have been very busy here at Ava Grace No Footprint Too Small Headquarters the past few months. 



The volunteer group that I began more than a year ago has grown considerably. We have lots of new members who are contributing gorgeous items for the precious babies that we do this for. 



I am proud to say we are able to deliver baby items from the tiniest of babies that can be held (approximately 14 weeks) right up to 42 week, full term stillborn babies. We have also delivered items to seriously ill and premature babies in Neonatal Intensive Care Units. 
I have sent tiny miscarriage packages to families too so that they have something tangible to hold as quite often these families are left with nothing except perhaps an ultrasound picture. 



The hospital's we have donated to: 
Nepean Public Hospital NSW
Nepean Private Hospital NSW
Westmead Public Hospital NSW 
Royal Darwin Hospital NT
Women's and Children's Hospital SA 



We have also sent items to SANDS QLD and directly to families who have requested packages. 



We, as a collective group have donated well over a thousand items, possibly more. As the group has grown I have had to change how I keep track of everything so have made some recent changes to help with the administration side of things. 


We are donating:
Blankets
Quilts 
Teddies 
Gowns
Dresses
Pants
Cardigans 
Beanies
Bonnets
Booties 
Overalls 
Angel pouches
Sleeping bags 
Pillows
Jewellery 
Headbands 
Nappies 


What is the most asked about item when talking to bereaved parents? You may be surprised! It is nappies. So many parents have said they wish their baby had a nappy to wear and what dignity and worth that simple item would bring to their baby. 


We have recently had an influx of donated Weddinf Dresses lately and these are being transformed into te most amazing Angel Gowns and Wraps. These are so special and I don't take for granted the sacrifice of these women giving up their dresses for this cause that is so important. Each dress/gown is very unique and something families will treasure.

Donated in memory of Elijah Clune


Generous people have donated fabric, yarn, ribbon, cards and much more which is put to good use!  

We have volunteers from all around Australia who are busy creating items from patterns, modifying patterns to fit the tiny bubs and even writing their own patterns! 

I am kept busy photographing and packaging each item and then organising donations. 



We have met socially for dinner and afternoon tea and now meet once a month on a the third Sunday of every month, at a fantastic shop called "Sew Can I". The owner of the shop Karen has been so generous offering it to us as both a meeting point and use of her facilities as well as a drop off point for donations. I am very thankful to her. Thankyou to Susanne for doing so much of the organising of these meet ups for the group. I really appreciate it and the drive you use to grow the group! 



I have been contacted by a few families who have received our packages and they have been thankful to have something beautiful to dress and wrap their baby in. I love to hear their baby's name and have seen some amazing photos that show how lovely these items look. 



If you are interested in joining our volunteer group please send me an email at avagracenfts@gmail.com or join our FB volunteer page via this link 
https://www.facebook.com/groups/1692090737678771/ this FB page is a closed group where volunteers post photos, share patterns, ask questions and also where we advertise social gatherings. We would love you to have a look at what we are doing. 

I also have a public FB page called Ava Grace No Footprint Too Small. I post my blog posts, articles and pictures of volunteer creations on this page. This is the link if you would like to follow https://www.facebook.com/Ava-Grace-No-Footprint-Too-Small-456622537829000/

If you would like to contact me I have a new email address avagracenfts@gmail.com



Looking forward to seeing where we are in another years time and seeing how far Ava's legacy reaches. 

14-20 weekers donation 

Sleeping bags/angel pouch 












Friday, 13 May 2016

Comfort for the Tears, Light for the Way Book

I wanted to share a book that Ava's story is going to feature in. I also wanted to thank the author (Melissa) for bringing awareness and sharing our babies stories.

Melissa Desveaux (Author) is putting this book together and is fundraising to help publish the book which is currently at the editing stage. Below is what she shares on the fundraising page:

https://www.mycause.com.au/page/125019/comfort-for-the-tears-light-for-the-way

Comfort for the Tears, Light for the Way is a collection of memoirs written by those who have suffered the devastating loss of a child, before, during or after birth.

These families share their courageous pregnancy journeys through miscarriage, stillbirth, IVF, and premature births.

Powerfully evocative, Comfort for the Tears, Light for the Way is a collective memoir of grief – and hope.

I am fundraising so this book can be published with the love and care it needs. This is a not for profit project and with any donated funds, I will ensure this book is edited, published and distributed as best as I can.

Any one donation over $25.00AU will receive a copy once it is published. 
All other donations will be used for fees such as publishing and distribution. 

Please help us bring this book to life and on bookshelves all around the world and bring awareness not only to pregnancy and infant loss but to those who have endured heartache trying to conceive a child.

Thursday, 21 April 2016

Donation day - Nepean Hospital 16.3.16



I was planning on making another donation of tiny baby things to my local hospital and as it drew nearer to Ava's due date I knew this would be the day. I could sit at home bawling my eyes out or I could do something that meant something on a day that meant so much to me. 



I had my friend Natasha who is the mother of one of Ava's friends in heaven Elijah offer to come with me on the day. She brought her son and I had Oliver with me too - our two little helpers! I had other friends help me make some treats to take  to the hospital for a morning tea I wanted to provide for the midwives as a thankyou for all that they did for me a year ago and everything they continue to do for bereaved families. Another one of Ava's friends in heaven is Levi. His mum Natasha made and decorated some beautiful cakes. Jeanette and Jo also made some delicious deserts too. 



We arrived at the hospital and were greeted by the wonderful staff of The antenatal ward - a ward that had some extremely unpleasant and traumatic memories for my family but it is also a kind of sacred place because that is where we met Ava for the first time, that's where we shared out only night as her parents with our baby in the same room as us. That's the place that we said hello and goodbye. 

When we left the ward a year ago I could not have told you what it looked like as the only place I was looking when we entered and when we left was the floor - I couldn't bear the thought of looking up and seeing happily pregnant women (even though I could hear CTGs and families visiting their pregnant friends/partners). 

One year later I looked straight at the door to the room that Ava was born in right next to the nurses station. The door where the butterfly tag was stuck on the door so that all hospital staff knew what type of family were in there. Family's who had their lives shattered with devastating words, devastating diagnosis', devastating medical reports. 



We sat down in the staffroom and chatted to the midwives while we ate morning tea. It was lovely having them say Ava's name. There was no pretending she never existed as so often occurs, these midwives and nurses know very well these babies have existed and honour them by talking about them to their parents. We were asked if there were things that they could improve on in the care the provide to women delivering tiny stillborn babies and I got to share Ava's story and about the wonderful, selfless work that so many volunteers are doing for Ava Grace No Footprint Too Small.   



I want to thank every single volunteer who has joined us the past year. Your support has meant so much to me and I know just how much every parent who receives your hats, nappies, blankets, gowns, angel pouches and clothes appreciates what you have provided. 



Having something that fits your baby, that  you can look back on in photographs and hold their things and remember their size and what they looked like is so important. The things we received for Ava are some of my most precious possessions. 



You cannot ignore a baby when you see the blood that stains their clothes, you cant not imagine the baby that was wrapped in the blanket a grandmother knitted. You can't imagine the dignity a family feels when they see their baby dressed in their nappy. A mother can't forget the smell of their baby when they open their memory box and they pull their babies things out to reminisce. 



Over the past year if you put together all the hats, nappies, blankets and clothes that have been handmade and donated to Nepean Public Hospital along with the two pages of personal donations that I have posted to families on request, it has been thousands of tiny baby things that have touched babies and their families. 



Starting Ava Grace No Footprint Too Small soon after Ava died was something that kept my mind busy on something positive when it felt like my world was falling apart. It helped me realise how many people actually do acknowledge these babies lives and how much they matter. 



When our babies are gone and we don't have them to hold anymore, having keepsakes from the hours we spend with them become incredibly special. 



Thankyou for everyone's support. If you would like to join us through sewing, knitting or crochet then please contact myself at avagracenfts@gmail.com if you can support the volunteers by donating wool or fabric or just by tracing and cutting out nappy patterns on fabric I would love to hear from you! 
Please come and join our volunteer Facebook Page. https://www.facebook.com/groups/1692090737678771/









Wednesday, 13 April 2016

Ava's 1st Birthday 16th March 2016

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Ava's 1st Birthday! It came around way to fast but at the same time it felt so long ago that Ava entered our world and was born into heaven.
Your daughters 1st birthday is usually a time for celebration. Not having your daughter with you blowing out her candle is a very unnatural feeling and one I wouldn't wish on anyone. I can hardly describe the feeling except to say it is a deep pain that hurts emotionally but cuts so deep physically too. As desperately sad as I felt, I also couldn't help but feel a  bit of joy and gratitude that I had the opportunity to hold Ava, that I had the opportunity to kiss her tiny lips and count each toe! Knowing her for just an instant is to me worth celebrating. 

Now I am past the milestone of her birthday I look back in hindsight and can see the the few days prior to her birthday were far more painful and produced far more tears than the actual day itself which I have heard is quite common among bereaved parents. 

I am very blessed to be a mummy so the day started off with myself volunteering in my daughters classroom with reading groups. I told myself that I am a mummy to two daughters and a son so I really felt that it was important that I be there being a mummy for Ella just as I wanted desperately to be the same mummy for Ava and I will never get the chance to help in Ava's classroom. 

I came home to my husband and son and then we packed the car with all of the donations that the volunteers from Ava Grace No Footprint Too Small had made over the last few months. I met my friend Natasha (who also lost her son Elijah) last year at the hospital and we delivered the huge boxes to the antenatal ward. We set up the morning tea (thanks to my friends who cooked for it, in particular Natasha who made special cupcakes (her son Levi was sadly born at Nepean too way too early) the staffroom and had such a lovely time chatting about Ava Grace No Footprint Too Small and everything the volunteers have been making and we also spoke about Ava (and Natasha's Elijah). It was lovely speaking the the midwives who make such a big impacting the lives of families birthing babies they will never get to take home from hospital. 

After this we left and came home and when Ella came home from school we did our balloon release - 1 balloon from each of us. We saved one of Natasha's beautiful cupcakes and we sing happy birthday to Ava and the kids blew her candle out. The kids wanted to go out to dinner for her birthday as we often do for all of our birthdays so why would we do any different for their littlest sister? I can't say it was the happiest dinner as I forced food down my throat that had a huge lump in it feeling the tears falling on my insides but I did try. I am very fortunate to have living children who can make painful and at times seemingly impossible  situations bearable just by their smiles, enthusiasm, love and hugs. 





At the end of the night we lit a special candle that another dear friend (Shannon who is Benjamin's mummy and Ava's friend in heaven) had given me for Ava's first birthday along with our other Bears of Hope Candles. 


It was lovely to receive cards and presents and text messages from close friends and families who acknowledged Ava's birthday and what this day meant for us. I can tell you that the acknowledgment of Ava's life is the single most important thing to me when it comes to Ava and all that had happened.

Thankyou to those who honoured Ava's life on her 1st birthday through our fundraiser for Heartfelt Photographers. We really appreciate your help in funding this great cause.

https://www.mycause.com.au/page/121006/ava-grace-johnson-1st-birthday-fundraiser-for-heartfelt

Ava Grace Johnson 16.3.15 
105grams
15.5cm length
10cm HC 
Forget loved, forever missed.