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/

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. 

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

The eve of Ava's birth

It was at this time (the eve of Ava's birth) that we were arriving at the hospital as I was cramping and having fairly regular contractions. I was so scared, numb, in shock and already bone tired in grief as I knew the worst was to come...

There are so many triggers for bereaved parents in the lead up to their baby's first birthday in heaven. The last 6 weeks for us has meant every appointment and every ultrasound being on reply in our minds. 

The last week has been particularly difficult as it was this time a year ago that things got very serious and all we received bad news and we could literally see Ava's cystic hygroma growing rapidly every few days almost completely reaching right around her neck (by the time she was born the hygroma was completely around her neck). 

I cried a lot yesterday. I felt numb for most of today. I have no idea how I'll feel tomorrow, probably a mixture of every emotion a person can feel, similar to how I felt the moment I first held Ava. I remember vividly feeling such overwhelming happiness meeting my youngest daughter but such a deep physical pain of having my heart shattered into a million pieces. 

Tomorrow I will be going back to the hospital where she was born. I will be talking a large donation with me to give to the antenatal ward. The boxes contain tiny baby hats, gowns, dresses, booties, cardigans, sleeping bags, sleeping pouches, blankets and even a tiny onesie. I am so thankful to every volunteer who has been so generous with their time and money. They have shown me that Ava's life mattered and she has a legacy that will continue. 

Ava Grace 1st Birthday Fundraiser for Heartfelt

Ava Grace's 1st Birthday is fast approaching. She was born into heaven on March 16th 2015 at 11:58am on a Monday at Nepean Hospital.

We were fortunate and blessed that a Heartfelt volunteer photographer came to take photographic memories of Ava and our family for us just a few hours after she had passed. This is an organisation that I wish never had to exist, however am forever grateful that they do exist!

Our photographer was named Leanne and she truly was amazing. She was so compassionate and calm at a time when it would be very easy to be overwhelmed. She treated Ava as the little princess she was and showed such warmth towards us in our state of shock and sadness.

My memories of Ava will never fade because how do you ever forget someone who took a part of your heart? A tiny person who looked like her sister? Who had her Daddy's toes? Who had her brothers long fingers?
However, the photographs which were gifted to us by Heartfelt ensure that we don't forget each and every tiny detail, right down to her tiny fingernails.

Families around Australia have been blessed by this organisation many times over, consisting of wonderful volunteers who selflessly give their time, often travelling many kilometres to arrive at hospitals at unusual hours as they know just how important their job is.

We want them to know their worth, we want them to know that in those first, raw and painful days when you are left holding your deceased child, that they are truly a light in the darkness. By holding this fundraiser we hope the volunteers will accept our gratitude. We want other families to have this gift that can never be replaced.

Ava was born at 15.3 weeks gestation and many times I have had people dismiss our loss, try to minimise our pain and at times not acknowledge her life. Our photographs of Ava demonstrate that Ava was a life, that her life counts, that it does not matter how small her footprint was. She was born, and she died. She was and is and always will be our daughter. Ava was the same Ava at 7 weeks gestation, she was beautiful at 15 weeks gestation and she would have still been the same Ava had she been born at fullterm and lived, if not for her fatal prenatal diagnosis.

Please consider donating to this wonderful cause:
https://www.mycause.com.au/page/121006/ava-grace-johnson-1st-birthday-fundraiser-for-heartfelt

For more information please go to the Heartfelt website:
https://www.heartfelt.org.au/

Heartfelt Facebook page:
https://www.facebook.com/Heartfelt.Australia/

The photographs above are all part of our heartfelt photograph package.

The photo below is a photo my husband took in a moment where my heart was full but shattering into tiny pieces in the same moment. This is the day we said our goodbyes. 

One month till Ava's first birthday

This morning I woke up with a heavy heart. It is the 16th February which means one month until Ava's first birthday. 

At work today a good friend and colleague gave me a gift and a card today.

It came from one bereaved mother to another. A mother who has been walking this painful path for years now. 

What stood out to me was that she knows, she knows without me saying anything that just the countdown to any milestone is painful, that it's not just the "day" it's every day and the lead up to any and every event that has anything to do with our child who isn't here now. 

Thankyou dear friend, you knew exactly how my heart felt, I only wish it weren't from personal experience. 

Ectopic Pregnancy

I have attempted to write this a few times and then stopped myself. I don't know why, maybe it's because I don't want or need people's pity? I don't want people to give the well meaning comments that actually can really hurt if you haven't been through a loss. 

However I have decided to share with you something that has shaken me up this past week. 

Why have I decided to share? Because if I am all about breaking the silence and taboo of miscarriage, stillbirth and infant loss then I need to speak out. I need other women to know that a loss is a loss, no matter the gestation, no matter how it happened, no matter how long ago it happened. If I don't speak up, then the painful truth of what so many people experience will be kept hidden and those people will be left feeling alone and isolated which is what so often occurs when a pregnancy ends early in the pregnancy. 

I have had an ectopic pregnancy (tubal pregnancy).  We lost another baby because for some reason te embryo implanted in my right fallopian tube. This has not happened recently, most likely it happened before I fell pregnant with Ava (I have my suspicions of when it may have occurred). I now have only 1 functioning fallopian tube. There was  damage and I now have a complete blockage because of it and it was unable to be repaired during surgery i had last week. 

How do I feel about this news? I feel sad, and I have to say I was in shock when told. I was high as a kite on medication and in pain after the surgery when my surgeon first spoke to me  and at first I thought he had said that he was able to repair the tube, which when I went back to see him in my usual calm and collected state he explained everything in detail to me, even giving me pictures to show me if my insides! Apparently many women have ectopic pregnancies that they have never known about, but some are left with lasting consequences in terms of their fertility such as myself. Of course ectopic pregnancies can be incredibly dangerous and women even can lose their life if not diagnosed and managed properly. I am grateful that I came out unscathed about from a permanently blocked tube.

I'm sad that I have been pregnant 5 times but have only 2 children with me. I'm sad I never got too hold or meet 2 of my babies, and I'm devastated that I got a glimpse of Ava but didn't get to keep her.

To be honest I'm a bit angry with my body. Three times now I have had pregnancies that were never going to progress or end well and three times my body hasn't let me know. My miscarriage wa a missed miscarriage, meaning I had no symptoms that our baby stopped growing, resulting in a D&C at 10 weeks. The ectopic pregnancy I had no idea about it was only during other investigations that it was found. Ava's pregnancy started off well but I will never understand why her lymphatic and vascular systems failed to develop. 

I am very lucky to have my other wo children but the pregnancies with them were also not without drama, and terrifying ultrasounds, especially with Ella.  So before you say be grateful for what you have, I am grateful, very grateful as I cannot even imagine the pain of infertility that never ceases and leaves parents with empty arms. 

If you know someone who has experienced an ectopic pregnancy please don't minimise their loss, please don't say it wasn't a "real" baby as is so often heard in these cases. Please listen to when your friend is scared of losing their other fallopian tube to another ectopic pregnancy as the chance of having a natural conception now falls to 0%. 

Being diagnosed with an ectopic pregnancy retrospectively completely knocked me around. I am ok though and am glad it has been found because I like knowing what I am dealing with. 

What a reunion it will be seeing my 3 

babies, 2 of whom I have never met the day I enter heaven, my arms will be completely full! 

These flowers were given to me by my sister in law Belinda and twin Nicole. I have nothing to mark the news of this baby, not even a pregnancy test, so these flowers are it! 

One year ago we received bad news

I was wondering why I felt so out of sorts, anxious and emotional this evening and I can't sleep. Then it hit me, it was Wednesday the 4th of February at about 4:45 that we received bad news. Our ultrasound was at 12pm and I was 9 weeks and 5 days pregnant. We were both hoping that this would be the pregnancy that we could look forward to ultrasounds, a pregnancy where we weren't told of any concerns. We had seen Ava the size of a tiny bean at 6 weeks and 6 days at the fertility specialists office, but at this scan Ava had transformed into a cute little baby. I knew something wasn't right, I kept telling the sonographer that I could see a thickened unchallenged fold just like my first daughter Ella had. It was very obvious to myself and my husband considering all the scans that we had of Ella from years before. She kept saying it was all normal, and we wanted to believe her so I pushed those doubts to the back of my head, we were looking forward on telling the kids that night that they would be getting a sibling. But then the doctor called. Then I knew, I just knew. She introduced herself as I felt mused collapsing on the lounge,my blood running cold begging her to please don't tell me there's something wrong, please don't, we have been through this before. 

She told us that this baby was looking very much like my pregnancy with Ella. I was quick to say that Ella turned out fine after a lot of stress being told she wouldn't be and everything resolved. Ava's measurement wasn't that much higher than Ella's at this stage, so we had hope, a lot of hope but at the same time being so incredibly terrified, because I knew exactly what could come of the situation. She said she had already called my obstetrician and that I needed to see him as soon as possible, that I shouldn't wait for my scheduled appointment in a few weeks time. 

That phone call started it all. It was the beginning of the end. That phone call changed our family forever that night, we were given bad news, but there was much worse news to come. 

Now I know why I can't sleep, I want to go back to a year ago on the 3rd of February when we were blissfully unaware that our baby wasn't going to be coming home, before we knew she never had a chance. 

(The first sign that something wasn't right was the nuchal fluid behind Ava's neck - it is the dark area between her and the thin white line).