Silver locket

A silver locket given to me by a friend. Was a nice surprise turning up a work yesterday to find a gift for me! Love that other people have Ava on their mind too. Thankyou Jenny xx

Ava's Birth Story

A stillbirth in clinical terms is a birth where a baby is not born alive after 20 weeks gestation. I have really struggled with this at times over the past 4 months. Ava is classed as a miscarriage because she was born before 20 weeks. It doesn't matter if a woman is 19.5 weeks, when they deliver a baby before 20 weeks it is still classed as a miscarriage. 

I have had a miscarriage - one that was classed medically as an early miscarriage because it was in the first trimester and I can say honestly that a second trimester miscarriage is different. I can't compare a miscarriage and birth of a baby (and this is in no way taking away from the devastation that occurs with a miscarriage, I know the pain of not being able to meet my first little one). However, I and many mothers who have birthed their tiny babies consider their babies to be stillborn. I have discussed this with both medical and psychologists and have been told that I and other mothers have the right to call our babies stillborn because that is what they were - they were born still. So I try and not listen to the medical jargon that goes around. It hurts that because Ava was not more than 20 weeks, she is not legally recognised to ever have existed, on some medical documents she is known as "baby of Erin" and I have some doctors who ever refer to her with her name in letters to other health professionals which is nice to see. 

So, for those of you who want to know what a stillbirth is like, a birth where you know your baby has already died or will die at some point during the deliver or very soon after birth I will tell you our story. It was a silent birth, yet on the inside of my heart, from the depths of my soul, in the midst of the quiet, there was a deep and loud mother roar that cried out for my daughter and the life that should have been.

Some thoughts: 

Firstly it is silent. Secondly it feels surreal - like it is not really happening at the time. It is heartbreaking. It is soul shattering. It is gut wrenching. It is emotional but at the same time a detachment is there. A feeling of shock lingers in the air. I'm not going to have many memories of Ava, but her birth story will be an important memory no matter how hard it will be. The memory of her birth will stay with me, just like the time I felt her move while I was doing the laundry, the ultrasounds that we have on video and the pictures taken of her while growing and developing inside of me.

I have had two inductions with my other children and there is constantly noise in the background. There were monitors attached to me, there were machines measuring contractions and heart rates. There was me screaming for an epidural! There was excitement as my husband and I discussed names for the last time before we would meet our baby. 

With Ava there was no monitoring, as there would be no heartbeat for us to hear. So the room is silent. No excited plans being made, except for talking to the social worker about whether our children should meet their sister or not, if we want a memorial service or not, autopsy or not, cremation or burial, professional photography and other difficult decisions you don't ever think you will have to make. Without saying a word, we know that as hard as this is, this will be a moment that will bring us closer together. It reminds me of the vows we said to each other almost 10 years earlier.

The door to the room is closed and only the appropriate hospital staff enter. There is a butterfly that is put on the door - this is a symbol that a bereaved family is in the room. No one is to enter, including cleaners and food staff because the last thing you need is someone asking you excitedly if you had a girl or a boy. 

Ava Grace - Birth Story 

The staff assigned for Ava's birth are some of the most compassionate people I have ever met. They pass the tissues as I cry hysterically about how unfair this all is. They listen as I let out a gut wrenching roar from deep within about not even eating a piece of deli meat or seafood this pregnancy. They hold my hand and agree with me that this is the worst situation you can be in. They run and grab me vomit bags time and time again and agree that it shouldn't have been that I have also had to go through hyperemesis gravidarum for the entire pregnancy, yet don't get to hold a screaming baby in the end. They hold my hand as they give me needles and other medications to help with the relentless nausea which is a combination of extreme fear, panic, sadness, shock, morning sickness and morphine. They bring my husband meals which he cannot eat but is grateful for the gesture. They tell me I can do this, that I am strong, that I will get to meet my daughter soon. They say her name, her beautiful name over and over again. They come running when I push my button in sheer panic when my waters break, screaming for them to call my obstetrician. They calm me with soothing words and again affirm that I can do this, that i will meet my precious daughter soon. They listen through my sobs about the plans we had for our daughter and our family that was supposed to have 5 people in it in just a few months. They check me calmly as I begin to enter the final stage of labour knowing that the end of the birthing process is near. They whisper to my husband to quickly go and tell the staff on the desk to call my obstetrician to come NOW, the babies birth is imminent! They hold my tiny daughter for what feels like hours in a way so that she isn't born before I am ready and not before 'the best obstetrician in the whole wide world' arrives. As we are waiting, she describes my daughters "dainty" features. The doctor arrives and calmly delivers my third child, just as he has delivered her older sister and brother in the previous few years. Her birth is silent, the room is silent. There are no tears, there are no cheers. He describes in detail what she looks like asking gently if we want to see her. My husband and I look at each other with a glance, both knowing the answer in that second - YES, please we want to see her, we want to hold her and never let her go. We want to cuddle her, and love on her and kiss her. I am handed her, all 15.5cm and 105grams to hold after a 2.5 hour labour. 

Im exhausted, emotionally and physically, but I'm smiling, I'm actually grinning ear to ear as any proud mother would be doing for their full term, healthy baby that has just been born. I am in such awe about what a perfectly formed little girl we have created. I am so happy to meet her and hold her. At the same moment that my heart is being shattered into a million pieces, my heart is also full. My husband reaches out to touch her. I see the deep pain but also so much love for our third child. The widwife and obstetrician have tears in their eyes and comment how beautiful she is. She really is beautiful. Ava died because of fatal birth defects. We have heard the term 'incompatible with life' said many times before and after her birth, but those words (which I hate) don't take away ANYTHING from her beauty. They don't take anything away from the fact that she always had a place in our family. That she was supposed to be born. How amazing, that at 15.3 weeks gestation she has 10 tiny fingers and toes. She has her sisters chin, she has her daddy's toes, she has her brothers fingers, she has my knees. Her knuckles are all there and her fingernails are formed. Two tiny ears, two tiny eyes and a perfect little mouth. Just a tiny baby. Our baby. AVA GRACE JOHNSON. Monday 16th March 2015. 

Born still, but still born. 

Psalm 139:13-16 (NIV)

For you created my inmost being; you knit me together in my mothers womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 

What not to say to a grieving parent

The following blog post is written not just from what I have heard myself but also from other grieving parents. It hurts my heart hearing some of the things others have had to hear at a time when their hearts are already shattered into a million pieces. 

I know that it can be uncomfortable and awkward knowing what to say and what not to say when talking to someone after they experience the loss of their child. I don't claim to be an expert on grief at all. I am sure I've said unhelpful things before too. I suggest you keep it simple, especially if you really have no idea how they are feeling if you have not experienced loss yourself. 

I'm so sorry for the loss of your baby / daughter / son. 

I cannot imagine what your going through.

Please tell me if there is anything practical that I can do for you. 

                                     What not to say! 

- you don't want twins anyway, they can be born with all sorts of problems

- oh well it was survival of the fittest

- you need to get over it 

- it wasn't meant to be

- obviously for the best 

- you can have another baby

- obviously there was something wrong with your baby, nature does these things for the best

- you knew something was wrong, so you can't be that upset about it

- I know how you are feeling, my budgie (dog, cat, alligator) died last week

- this is your bodies way of telling you no more babies 

- you were only __ number of weeks, so I wouldn't count it as a loss

- you were not meant to have a girl /boy

- they probably had something really wrong with them

- it happens to everyone

- You can always have more children

- your young

- at least you won't have to deal with a disabled child

- when your a parent you'll understand

- stop crying or you'll make me cry

- you must have something great coming your way soon

- it's not really a baby at that stage

- you already have a boy and a girl 

- thank goodness, surely you don't want to go back to the night feeds and nappy stage!

- so do you call yourself a mum now?

- you have 2 already though, right?

- no wonder your crying, you still have the hormones going around

- at least it passed early so it's not really that big of a loss

- at least you didn't have to see it, that would have been awful

- just get pregnant straight away, that way  it'll be like it never happened

- it's time to get over it 

- your lucky it happened, can you imagine having 4 kids?

- at least you know you can get pregnant 

- an anaesthetist said - aren't you lucky on days like today my service is free!

- he's in a better place 

- you should be grateful for the kids you already have

- eventually you'll get over it 

- next time you can be healthier and be less stressed

- God did this for a reason

- you'll make a good mum SOMEDAY

- please don't put your grief on me 

- life goes on

- you really dodged a bullet

- imagine if you lost an older child, that would be so much worse

- be glad you don't have to be a single parent 

- you might want to save that name for a REAL baby

- Yay! You can still get the baby bonus 

- I don't know how you could touch a dead baby

- things could have been a lot worse 

- at least the morning sickness stopped 

There really is nothing that will make a person feel better about losing their child. Having a miscarriage or stillbirth is gut wrenching and soul destroying. Seeing a person in pain can make you feel helpless, so imagine how the conversation is for the person you are speaking too. Nothing you can say will bring their child back, and probably nothing you say will make them feel better about their loss either, but knowing that you care for them and support them will mean a lot. The acknowledgement of their baby is a huge deal, so skirting around this won't make them feel better. It will just make them feel more isolated. If you know their babies name, then say it. Their baby deserves to have their name said. 

Some of the above comments were to try and help, and others were just plain nasty. I'm very glad that I have been really well supported since losing Ava Grace.

Nothing that is said to me can hurt my soul anymore than holding my silent, still daughter in my arms. However, words spoken can help my broken heart - a little bit at a time.

 

Ella's drawing

"Mum it's you and Daddy and Ava is in your tummy, you have to keep this drawing forever" 

How did you come to read this blog?

If you have found my blog because you are a grieving parent who has experienced the excruitiating pain of losing a baby then firstly I am so sorry for your loss. If you have been received a package that had a card from "Ava Grace - No Footprint Too Small" from your local hospital where you gave birth to your precious bub then I would love to hear your baby's name and story and what blanket your baby was wrapped in, or nappy or hat that you dressed them in. 

If you have found this blog through searching for hope or answers or information after having received a diagnosis of cystic hygroma/lymphatic malformation, hydrops, I would also love to know your families journey. I want to know if your baby lived or died and how you are making it through each day. 

If you have been reading my blog because you have joined as a volunteer on the Ava Grace - No Footprint to Small volunteer Facebook page, thankyou so much for understanding how much your contribution means to others. 

https://www.facebook.com/groups/1692090737678771/

If you are reading this page as a fellow babyloss mummy or daddy whether you lost your baby through miscarriage, stillbirth or neonatal loss I think and pray for you often. I like to imagine Ava having lots of friends in Heaven playing with her until I see and hold her again. 

If you are reading this blog because you are a friend or family member of ours then thankyou for taking the time to read Ava's story and my thoughts as we navigate our 'new normal'. Thankyou for the support you give in practical ways, your prayers and thoughts. Thankyou for acknowledging our daughter Ava and the part she plays in our family. Thankyou for being there and listening to me when I blog, as at the moment it is playing a roll in letting me process all that has happened over the last 6 months. It lets me to verbalise how I'm feeling without having to leave my lounge room. 

I hope Ava has impacted your life in some small way. I hope that she has shown you of how much life a baby has at whatever gestation they are born at, whether they take a breath or not on this Earth. 

https://www.facebook.com/pages/Ava-Grace-no-footprint-too-small/456622537829000

https://www.facebook.com/groups/1692090737678771/

Feel free to join my Facebook pages through the links above or send me an email, I'd love to hear from you. I'd love to hear about where in the world you are reading my blog from. I'd love to a acknowledge your baby and their story. 

- Erin (Ava's mummy)

ejohnson4811@gmail.com

Holding Ava's hand

I miss holding Ava's hand, although it was teeny tiny it felt so natural to be holding her hand. I know people who haven't held their dead baby probably think this is weird but until you have you just don't understand. Her tiny fingers had fingernails and each knuckle was perfectly formed. Her elbow bones were perfect. She was totally in proportion. 

I was so scared to meet her and now I look back and don't know why I was so scared, I guess it's the unknown. People ask me what she looked like - she just looked like a tiny baby.

15.3 weeks pregnant - 15.3 weeks since she's been gone

Ava has been gone for the same amount of time I was pregnant with her 15.3 weeks exactly... When I was pregnant with her it felt like the time was going so slow, first due to severe morning sickness and then due to the not knowing what was going on with our sick baby. 

How can that be? It already feels like so long since I held her in my arms. 

She is fully integrated into our family now, I am able to talk about her without being a mess and breaking down most of the time. The kids accept what happened but talk about her almost daily too. They comment when we drive past the hospital that she was born at and talk about the things they think she is doing in heaven. They discuss what she would look like and where she would have slept if she came home. Her place in our family is firmly cemented as out third child. 

I was so afraid that other people would forget about her, ignore her, pretend she never existed but I needn't have worried. Ava is brought up daily in the lives of my friends and family. Others have shared her story with their family and friends. In fact Ava is very well known - over 60,000 views of my blog in 4 months and her story is also easily found through Internet search engines. Her life has touched others all around the world even to countries I had never even heard of! Other baby loss mumma's have contacted me and shared their baby birth and story with me. As isolating as this is, and as much as I wish no one else experienced it, it is nice to know I am not alone. 

Even a prenatal diagnosis of cystic hygroma/lymphatic malformation and hydrops has come up when people share their stories - and it is considered very rare. 

Losing Ava has opened up another world to me, I wish I knew nothing about it, but I do, and now I want to join other mummies in sharing their children. I want to advocate for the babies who never came home. I want to support other families who have been given poor/fatal prenatal diagnosis'. I want to educate the community and the medical profession about what they can do to support these families left distressed and heartbroken. 

I am going to continue giving blankets, clothes, nappies and hats to hospitals for these precious tiny bubs to be dressed and wrapped in. 

I'm going to continue to be Ava Grace's mum.