I have started this post so many times and then been unable to do it.
We received the final autopsy report for our daughter Ava Grace Johnson months ago. We are quite fortunate that it was completed within 4 months as we were initially told to not expect it for at least 6-12 months. I have also heard stories of families waiting for years for answers and results.
Many people have questioned why we decided to have an autopsy done for our girl. It was a hard decision but one that we both agreed to quickly and wanted to have done even though we knew already knew she had severe cystic hygroma. We wanted to gain any more information we could about why her lymphatic system did not develop, we wanted to know if it could happen again. We just wanted to know SOMETHING!
The thought does not cross your mind when you find out you are pregnant that you are carrying a baby who has vital systems that will never develop as they should. You don't imagine the words "malformation" will be said in the same sentence as the name of your baby. In the back of your mind you know that babies die everyday for reasons unknown and also of horrible things but you really don't think it will happen to you, and when you have already gone through one high risk pregnancy a few years earlier where you are recommended a termination by doctors and told that your baby will likely die, you think that surely nothing like that will happen to you again - because that baby is now 6 years old, asleep in their bed and healthy.
You aren't thinking that the words "syndrome" "nuchal fluid" "cystic hygroma" "incompatible with life" "termination" "fetal death" "chorionic villus sampling" "quality of life" "amniocentesis" "cardiac scan" "trisomy" "aneuploidy" "defect" "stillbirth" "miscarriage" "lymphatic malformation" "life support" "palliative care" "EXIT procedure C-section" "induction" "genetics" will become an everyday part of your vocabulary after you are told these words, read these words, and you live some of these words.
Every single one of these words = a knife to the heart = pain I can't even describe.
How can I be reading the autopsy of my own daughter when I am only 32 years old? How on earth did we hand our daughter over and have the hospital and funeral home organise the transport of our tiny baby from the hospital she was delivered at to the children's hospital - not for treatment that will save her, but for her little body to be poked and prodded and examined.
I have no regrets getting the autopsy as hard as it is to read. It also gives me information that I didn't even know I wanted or would receive at the time like precise measurements of her hands. It talks of her having a "babygram" which I imagine to be a tiny x-ray machine.
The report is 7 pages long. I still don't understand most of it, but its amazing what I do understand with very limited medical knowledge and the help of Dr Google!
Her final diagnosis reads:
Cystic hygroma posteriorly and laterally extending to thoracic wall laterally - vascular malformation with significant lymphatic component.
(a) bilateral pleural effusions
(b) oedema mediastinum and contents
(c) heart structurally normal apart from probable persistent left superior vena cava with dilated coronary sinus.
There were more things that was wrong and demonstrated how sick she was and how much stress her tiny body was under contained in the 7 pages.
Some points that I like knowing is that her little hands were 17mm and her finger length was 6mm. Her perfect foot was 16mm. It also told me how much her precious heart weighed.
Your probably thinking of how morbid this all is, how morbid I am as a person and yes, I probably am. I don't expect you to think it's normal because it's not normal, none of this is normal. Babies should not develop without a vascular and lymphatic system in place. Parent's should not have to sign form's allowing their child to be sent for an autopsy.
I know that Ava was born straight into heaven and that is a big reason why I was ok with her body being examined and tested as it was just her shell of her earthly body. She was already totally healed in heaven before the autopsy even took place. I know people get scared of what their baby will look like after an autopsy - I can tell you it isn't scary. We weren't going to see her again after we left her at the hospital but a few days before she was to be cremated I was desperate to see her again and hold her again so we did. We were advised not to by the funeral home staff and told she would be too fragile to hold - well I just went straight in and picked my little girl up and pulled her into the biggest cuddle I have ever had and she still looked like our Ava, you could not even tell what had happened except that she was a little smaller and the cystic hygroma was now gone so I could see her little neck which was not visible at all when she was born.
I was hoping we would get a "WHY" but we did not despite all of the investigations before and after her death. We will have to live with the "why" question for the rest of our lives now. Why did Ava's body not develop a working and functioning vascular system? why did her lymphatic system not work properly? Why was her pancreas and heart surrounded by fluid? Why was there fluid in her little lungs? Why was she terminally sick?
The WHY question haunts me just as much as the WHAT If...
Thursday, 29 October 2015
Sunday, 18 October 2015
Fundraiser for Ava Grace No Footprint Too Small - Younique
My beautiful friend Kelli Flack has started an online fundraiser through her work as a Younique makeup presenter to raise funds for Ava Grace No Footprint Too Small.
Sometimes I feel really alone and isolated and when Kelli first asked me about putting on this fundraiser it really lifted my spirits knowing that she was still thinking about Ava 7 months later.
The money raised will go towards materials for the volunteers who have been creating the clothes, blankets and nappies for hospitals through Ava Grace No Footprint Too Small.
I want to thank Kelli, as she is still only new to Younique and is building her business so to do a party where she doesn't get the profit is a real reflection of her heart for others.
Please join the Younique party online through the link below. There is absolutely no pressure to buy and it's also a lot of fun as I've been to online parties for Younique previously and purchased their products. Please invite and add your friends too!
Thankyou!
Wave of light - October 15th
At 7pm in every timezone on October 15th candles were lit to create a wave of light around the world.
My friend Shannon from Imagine Candles
custom made me two candles which smelt divine. I asked her to choose the fragrance and she picked well. Ava's hands and footprints were on the label along with a verse from the bible that means a lot to Mat and I as this verse is what was sung as a song at our wedding 10 years ago and was also read at Ava's memorial service.
"Better is one day in your courts than a thousand elsewhere" Psalm 84:10
http://www.imaginecandles.com.au
She also made us a smaller candle for our tiny baby lost to miscarriage in October 2008.
These were the main candles that we lit at 7pm. I also lit a few Bears of Hope Candles that we had been given for both our losses the weekend prior and the BOH candles from the ball we attended in September. I lit the candle gifted to me from the Pregnancy and Infant loss Remembrance Day service that morning aswell.
Mat and I both stared at it all for quite some time. The candles were surrounded by some of Ava's things such as her memory box, her urn, name photograph, BOH beat and some ornaments.
We kept it lit for one hour.
I remember lighting a candle last year for the one baby lost to miscarriage years earlier, I remember thinking what a nice idea and that pregnancy and infant loss is becoming more talked about acknowledged, not knowing that a few months later I would be pregnant and a few months after that losing our daughter and that by the time October 15th came around I would be lighting two candles and crying over her death while I flick through the hundreds of photographs of her.
Days like October 15th become filled with meaning. I would love to it to become a public holiday. The statistics say 1in4 babies are lost to miscarriage so that means that almost every family would be affected in some way and a day dedicated to remember and reflect on our babies lives would mean a lot to so many families.
There is still so much work to do breaking the taboo of miscarriage and stillbirth. There is so much more education that needs to be done. There are so many more medical interventions and medications that need to be invented to save sick babies. Way to many families are walking around with shattered hearts.
Pregnancy and Infant Loss Remembrance Day
On Thursday the 15th October I attended the Pregnancy and Infant Loss Remembrance Day service at Nepean Hospital. This is the hospital that Ava was born and died at. My other children were born at Nepean Private Hospital so the public hospital really does have a different feel for me, it is also where I had surgery after my first miscarriage which was in October 2008 - 7 years since I first felt the pain of loss. I never dreamed I'd be even more broken-hearted 7 years later.
The service was really beautiful. The midwives, chaplains, social workers and other staff were lovely in how they put on the service for bereaved families.
Two women shared their personal stories of loss, poems, prayers and songs were said and listened too and a rememberance candle was lit. At the conclusion we were able to hang out babies names on the memorial tree while their names were called out. Oliver took this important job on, carefully choosing what branch to hang his sisters name on.
We were given candles to take home to use in the Wave of Light that would be happening that night at 7pm.
Afterwards there was a morning tea to enjoy and talk to the staff and other families. I caught up with two friends that I have made through the Bears Of Hope Support Groups.
I spoke to some of the midwives and thanked them for everything they do for the families who pass through the hospital never to take their babies home.
While I was talking to Shirley (NUM of the ward where Ava was born and the midwife who accepts the donations from Ava Grace No Footprint Too Small) she asked me if I would mind if they sent some of the packages we have donated to Blue Mountains. Lithgow and Hawkesbury Hospitals. Of course I said yes and told her to send them to where they are sadly needed. I also gave a small bag on of recent donations that I had collected in the last fortnight.
Attending services that acknowledge our babies lives, whatever their gestation are emotionally draining but I also find them lovely in a way I wouldn't have thought. I love hearing Ava's full name said aloud. I love writing her name down. I love being able to discuss her with people who just "get it" and the midwives who talk proudly of the babies they get to deliver and meet regardless of whether they are alive at birth or not. I like being able to hear the names of the babies who are now playing with Ava in heaven. If you haven't experienced loss than perhaps all of this makes you feel uncomfortable, sounds morbid or just not normal - but you have to remember that this is our NEW normal.
My heart is broken and will never be able to be completely fixed but I also will never regret having Ava. I will never regret holding her little hand in mine, or kissing her forehead or her tiny lips. If attending services that are emotional, sad and lovely at the same time is part of my new normal than I'm ok with that.
Wednesday, 14 October 2015
Ava was here...
Ava was here, she was a tiny person. How will I ever get over not seeing her grow up next to her siblings? She deserves to be counted, she deserves to have her name said, written, whispered, sung.
Ava was here.
Saturday, 10 October 2015
BOH Remembrance Service 2015
On the 15th October it will be Pregnancy and Infant Loss Remembrance Day. For the whole of October it is also Pregnancy and Infant Loss Awareness month.
Today we attended a remembrance service run by the organisation Bears Of Hope. It was at Eden Gardens, North Ryde. The weather was really beautiful as we sat in an amphitheatre and listened to poems and watched as a candle was lit. We heard the origins of Pregnancy Loss Remembrance Day in Australia which was only started in 2011, though much earlier in the U.S. And around the world.
We then moved to the pond where we were given flowers to place in the pond when our babies names were called. We chose a large orange one for Ava and a smaller white one for our tiny angel. It was quite an emotional time while I cried behind my sunglasses. It was both sad and very moving watching the flowers added by all the families in attendance move around the pond.
At the conclusion of this part we them were offered to write on cardboard bears that were hung up for display. Ella wrote on Ava's and Oliver wrote on our tiny angel's. While this was happening there was a scrumptious morning tea for everyone to enjoy and chat with other families.
We were all given candles to light this coming Thursday night in memory of our babies. At 7pm in each timezone across the world, there will be candles lit by families creating a "wave of continuous light".
Bears of Hope do a fantastic job of supporting bereaved families, raising awareness and talking about pregnancy loss and I thank them for putting on this special day.
On the 15th October, I will be attending a remembrance service at the hospital that Ava was born at earlier this year. As hard as I find it walking back into that hospital, I also find it strangely comforting that that is the last place I held out daughter.
I encourage you if you have lost babies to miscarriage, stillbirth and infant loss to join myself and others on October 15th to light a candle for 1 hour at 7pm and remember them and know that you are not alone in this journey.
Friday, 9 October 2015
Art piece
Tonight I had someone message me that I don't know very well but our paths have crossed a few times and we have lots of mutual friends.
She said that my experience inspired her to draw something at the same time of seeing our post about Ava's birth and death. She shared it with me tonight. It captures the grief and sadness but also joy and the struggle to try and be strong at the most devastating time of our lives.
Thankyou Julia - you are truly gifted!
Monday, 5 October 2015
Nepean Hospital donation 30th September 2015
As soon as I started talking to Sharon (midwife extraordinaire) I burst into tears. How do you say thankyou to the person who held your hand and supported you on the hardest day of your entire life? How do you look at that person without feeling all of the emotions you felt on that day six and a half months ago rushing back? It was so emotional but also very healing talking with her. I love that she remembered so many little details of Ava and my labour. I love that she spoke about Ava as my daughter. If you want to read more about how she assisted in Ava's birth you can read it here: http://babyjcystichygroma.blogspot.com.au/2015/07/ava-birth-story.html?m=1
Both Sharon and Shirley (NUM) asked what things they could improve on and provide women and families in our situation - they honestly did such a great job taking care of us but it was lovely to hear how much they care and want to make what is a heartbreaking and traumatic experience as easy as it can be. You can tell they truly care about the families they work with and the tiny babies they deliver.
I was able to find out where Ava's dress came from and was told it was the NSW Smocking Guild!
They were very appreciative of the delivery and were happy to hear of so many volunteers joining myself to make tiny baby things for the hospital.
We looked at the tiny cardigans, the hundreds of beanies and bonnets, the gorgeous blankets and quilts, the dresses and gowns and even a tiny headband!
Walking back into the ward where Ava was born and we spent the saddest day of our life was hard. It emotionally wrecks me. However, in some small way it is also comforting being back in the same place where I met Ava for the first time. It's a painful reminder of what happened, but a memory that I also don't want to forget as that would mean forgetting Ava and I will be forever grateful I got to hold her.
Thankyou so much to every volunteer who contributed towards this donation. We literally gave hundreds of packages for bereaved families. Thankyou to everyone who has been supporting Ava Grace No Footprint Too Small through donations of money, giftcards, fabric, wool, prayers and by sharing Ava's story.
If you would like to help then follow this link to our volunteer Facebook page https://www.facebook.com/groups/1692090737678771/
Sunday, 4 October 2015
I wasn't supposed to be doing this..
- How did you think the year 2015 was going to end?
- What did you think your family would look like, all a little older towards the end of another year?
- Where would you be living? Working? Shopping?
- Who did you think you would be spending time with?
- When did you think you would feel happiest?
These are all questions that I was thinking about the moment I found out at Christmas that we were adding another family member in 2015. To be honest, I had even been thinking about all of these questions and how it would end up before Ava was even conceived.
Sitting at my desk today, preparing for another term at my work, I felt very out of sorts.
This was not how my life was supposed to be at this point in the year.
I wasn't supposed to be doing this.
I should not still have my "teacher" hat on. I should be snuggling on the lounge, tired but so content that I am holding my daughter who was going to complete our family.
The baby stage of our family was going to be at an end with the birth of our third child. I was looking forward to treasuring every last moment of our last child's babyhood. I was going to sell and give away all of our baby things as our baby grew bigger and didn't require them anymore. I was going to breastfeed for the last time, I was going to carry this baby in my peanut shell sling which my other babies hated. I was going to be THAT parent that pushed a pram into the school gates that the school mum's gushed over at afternoon pickup.
I was going to decorate our fourth and spare bedroom that was always meant for our third child. It was going to be painted pink and I would have hung curtains with cute owls on the windows. Our new, seven seater new car would have been put to good use - not for every seat to be filled, but for more space for our growing family.
I was going to be wearing my favourite maternity jeans that I felt I didn't get enough use out of last pregnancy.
I was going to enjoy being on maternity leave at the same time as my sister in law knowing that our babies were going to grow up best friends and cousins being only a few months apart. I was not supposed to be here.
I would have been planning three presents to be given by Santa this year. The Christmas Santa photo would have been gorgeous with a baby who would be young enough not to be scared and a pre-schooler and kindergartener who would have been happy to be sitting on Santa's lap.
I did not think we would have been at wet'n'wild these school holidays as a family. Maybe the older two would have gone with daddy for the day, but not me breastfeeding a newborn around the clock and not fitting back into my swimmers so soon. I envisioned my daughter having a "sleepover" with her tiny sister in her room that she so often talked about. I imagined my son giving every stuffed toy that he owned to the baby as he was now the big brother in the house.
This is not how it was supposed to have been, I was not supposed to be doing any of what I'm doing right now.
I should not be dusting the corner shelf that holds my daughters things. I should be hanging up new photographs of her ever changing face. I should be feeling content - complete.
This was not how our family should have looked like. This was not how 2015 should have ended.
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