Bears of hope fundraiser completed

 Thankyou so much to everyone who donated to Bears of Hope through the fundraiser we set up just days after Ava died. 

We raised over $2100 which we were thrilled about. This money will go a long way in supporting other grieving families. 

There are now 21 bears that will be sent to hospitals with Ava's name on them. The families who receive them will know they are not alone. They are able to sign the BOH online guestbook if they wish and I will be able to see what hospitals Ava's bears were sent to and the family who recieved the bear. 

The money raised also goes towards the packages that are sent with the bears that have support material and it also helps fund the psychologists who support families through BOH. I have already attended my first in person monthly support group and have recieved telephone counseling aswell. 

The bears that were tagged are the "Sophie" bear. These bears are given to families who have been fortunate (or unfortunate) to have birthed and held their baby after late miscarriage, stillbirth or shortly after birth. Their is the "Hope" bear for early miscarriage where women sadly haven't seen their baby and the "Xavier" bear for families who have experienced a neonatal loss where their baby may have spent time in a NICU. 

 

When I experienced my first miscarriage in October 2008, I was given nothing, no information, no support service leaflets - nothing! All I got was a nurse telling me to stop crying and not to worry because I was young and would have lots of other babies as I cried when waking up from the anaesthetic after having a D&C at 10 weeks. This was unhelpful and u compassionate and clearly she needed more training in how to treat women who have had their dream shattered, even though it may have been early on. 

My hope is that the Bears Of Hope organisation will be able to reach all hospitals in Australia with their support packages and be able to help provide training to staff on how to compassionately work with women and their families who are going though a devastating time.

Thankyou to the following people and their families who donated in memory of Ava as a way of supporting us in this fundraiser:

Belinda and Chris

Mel

Anonymous

Jeanine

Joanne

Helen

Tanya

Rowan

Julie

Nathan and Sarah

Melinda

Julie

Daniel

Tara

Shaina

Maree

Del and Karl

Lynne

Chris

Kate

Sarah and Mark

Margaret

Malcolm and Terie

BB Mothers grp

Angela 

Abbie

Gabi

Joanne

Rachel and Steve

Kerrie and Steve 

Emma

Bruce 

Leah

Narelle

Troy and Nicole

Heather and Aaron

Susan and Andrew

Tanya

Natalie

Autopsy Preliminary Report

We met with the geneticist and genetic counsellor today to go through the preliminary autopsy report. We knew Ava had cystic hygroma from all the ultrasounds and when she was born it was obvious. 

The report stated how extensive it was. It also went on to say that she had fluid developing inside her body too, around her heart and lungs. As well as not being able to breathe because her airway would have been affected, she also would never have been able to breathe because of her lung development - they weren't going to develop as they should have because of the fluid build up inside. This fluid was a sign that she also had the early stages of hydrops. This is a serious condition that is also known to be incompatible with life in most instances. Hydrops is common in babies with extensive cystic hygroma. Her tiny heart would have been working so hard because of this fluid. My heart just broke some more - cystic hygroma is  bad enough on its own, but to know she had hydrops developing too - she never had a chance even if she did survive the pregnancy which is very unlikely given the odds. If her heart hadn't stopped and she did make it to term and was born we would have had to make the decision whether to put her on a ventilator - which isn't a long term option. Ava was always going to die. She also had something wrong with her heart too - which is separate to what the fluid was doing to her heart too as it built up surrounding her heart and chest region. 

Also was told some other shattering stuff but too painful to share that with everyone today. 

I feel like I'm right back in the same place we were almost 10 weeks ago. 

We had a daughter, her name was Ava Grace. She died because she had extensive cystic hygroma and hydrops. This meant the heart fails because you need your lymphatic and circulatory system to work properly to pump fluid and blood around your body. She was a fighter, we saw how active she was on ultrasound and how good her growth was despite her little body working so hard on the inside. 

Today was an awful day. 

Hospital facebook page post

When I delivered the blankets to the hospital last week, they took a photo of me with the NUM and Oliver and the box of blankets. Today it was on the hospital facebook page. 

https://www.facebook.com/nepeanbluemountainslocalhealthdistrict/posts/1654708784760633:0

I hope other people see this and decide to help me with my blanket making!

I have won a great prize!

I just found out I have won a fantastic prize!

I will be having my hair and makeup done  in the comfort of our own hotel room that we have won a nights accommodation for on the night of the Bears of Hope Ball. 

I bought tickets to the Bears of Hope Ball back in March, less than 2 weeks after Ava died. The ball is on the 22nd August which I know will be a hard time for me as it is right near Ava's original due date and also a week after my birthday. I know it will be a very emotional night but will also be nice to celebrate Ava too with a room full of people who also know what it is like to not have their sons and daughters with them. 

The Bears of Hope ball raises funds for the organisation so that it can keep providing the support that they are so great at. 

I have personally gained so much already from this organisation and have utilised their services. I first recieved a Bear of Hope in hospital before we left, leaving a piece of my heart behind. I then created my own fundraising page and we raised over $2100 which will provide 21 bear packages as well as funding the support services that BOH provide. I have and will continue to attend their monthly support groups they facilitate and just yesterday had my first phone counseling session with a psychologist they employ. They put on a lovely Mother's Day High Tea too that I attended with friends. My twin Nicole and her friend Jessica are also raising money by running in the Darwin City to Surf on behalf of Bears of Hope.

If you are interested in coming to the Ball or have a business that would like to donate prizes to support bereaved families then this is the link
http://www.bearsofhope.org.au/a/385.html

1st hospital donation of blankets

On Wednesday I my son Oliver and I visited the same ward that I delivered Ava at two months ago. I could feel my heart racing the whole way there. I recognised a few faces of midwives who had been there when I had Ava too. 

We have the NUM of the ward the box of blankets. She was really thankful for them and said that any blankets that they didn't need because of size would be passed on to the birthing suites for older stillborn babies and also the NICU. 

She asked if she could take a photo of myself and the blankets to put in the hospital newsletter, so we did this and then I asked to see the hospital photographs of Ava. They were very clinical but I am glad I saw them, particulary because they had a photo of Ava's back and I had only mentioned to my husband recently that I wished I had looked at every inch of her body in more detail and taken more photos. 

The photos really showed the extent of Ava's cystic hygroma and how large an area of her tiny body it's actually covered.

Cystic hygromas happen in different places of the body and to different severities. It makes me devastated to realise just how bad hers was. Such a horrific condition that no baby should ever have.  

Some doctors have lots to learn

I went to my GP today. I have only been seeing her since just before I fell pregnant with Ava so not too long and I thought she was lovely, now I'm not so sure. 

I walked in the room and the first thing out of her mouth was "so 24 weeks now!" I stumbled over the words, "no, no I'm not, you need to read the letter my obstetrician sent you weeks ago, and there will be many letters explaining what's been happening". 

She just kept saying "oh" as I tried to get the story out as quickly as possible. I kept saying Ava's name and she kept ignoring it. 

She also seemed to have little understanding that women give birth everyday to babies that are just 15-16 weeks, she seemed shocked and perplexed that I saw Ava as the person she was. How could I not, she was just a tiny human, the same as you or I, only her heart had stopped beating. When I mentioned having Ava with us in the room for the following 24 hours after her birth she seemed even more stunned. 

And then probably the biggest offense was when I asked for a referral to my fertility specialist. We haven't decided if or when we will try for another bub to add to our family, but I wanted the referral just so I had it as it will last a year and my obstetricians one will only last 3 months! 

She said to me "so you really want a 3rd baby don't you?" By this stage I think my mouth was just hanging open listening to how insensitive she was. She obviously completely disregarded that Ava was our 3rd child, and if you want to be technical she was our 4th pregnancy. The other thing I don't understand is that if a woman is asking for a referral to a fertility specialist then clearly she and her husband are wanting or at least contemplating adding to their family. 

Just because I had a horror pregnancy with Ava (not to mention my first daughters) doesn't mean that I don't deserve to hold another baby in my arms. Just because I have a healthy girl and boy shouldn't make me out to be a selfish, greedy person. 

Some doctors need to have some compassion. I'm really hoping that she was just shocked and uncomfortable and that's why it was just such an awkward and uncomfortable conversation. I'll probably go back to her as I do try and see the best in people, but I hope she's learnt that it's probably best to read patients letters and records before they open their mouth. 

I know exactly how many weeks I would be without a doctor telling me. I would be  24 weeks and 5 days today. 

Being weak not strong

I'm not strong.

I'm not brave.

I'm not amazing.

I'm not coping well.

I'm not back to normal. 

These are all things that have been said to me and other grieving people. They are all nice things to say and it's lovely to have people want to encourage you and I'm not saying I don't need the encouragement - I do! 

However, I'm not strong, I'm actually very weak and if you really knew me you would know just how weak I am. 

I'm not brave because brave is something you choose to do when you are facing something tough - I didn't choose this path, I just have to walk it. 

I'm far from amazing. Amazing people accomplish great things. 

I'm not coping well. I'm just very good at faking it, I'm a good actress, although somedays I think I'm coping as well as could be expected given the circumstances I'm in. 

I am not and will never be back to normal. I should still be pregnant and looking forward to going on maternity leave next term in anticipation of meeting my new baby daughter. My whole world has changed. If you are waiting for me to be who I used to be your going to be waiting your whole life. 

My daughter was given a bleak and poor prenatal diagnosis early in my pregnancy, and every week the odds got worse and worse, then she died. 

I really am ok with not being any of the above statements. What I'm not ok with is not holding Ava Grace in my arms again. 

Thankyou Jesus for carrying me when I can't walk myself! 

"When you saw one set of footprints it was then that I carried you" - Footprints in the sand

Packaged and ready to go!

I spent most of today packaging up the blanket packs. I currently have 47 blanket packs and 9 tiny baby crochet blanket packs. I have personally made 42 of them. 5 were made by Rachel Jones and the crochet blankets were made by Sara Fifer and her mother. 

47 families will now be able to wrap their precious baby up and have a small keepsake blanket to take home with them to remember what their baby was last wrapped in. 

The smallest blanket is a tiny 16x16cm and my largest is 60x60cm. These babies will have something that belongs just to them. Holding and folding these tiny baby blankets was very emotional for me, memories taking me back exactly 2 months ago to the 16th March when Ava was wrapped in her Grandma and Grandads knitted and sewn blankets and laying on 2 others donated to the hospital by volunteers. 

Below is a photo of my personal favourite for a little girl. 

My gorgeous husband made new cards and stickers, this time including a black circle where I was able to write the size in so that the midwives would quickly be able to pick the right size for each baby. 

They are packed in plastic and secured with a sticker that has links to this blog and a picture of Ava's footprints. A card is included inside with the same details. It would be nice in the months and years to come to be able to connect with families who receive them through my blog and Facebook page. 

My Twin is running for Bears of Hope

My twin sister Nicole and her friend Jessica are running in a charity event - The Northern Territory City to Surf to raise funds for the organisation Bears of Hope in a few weeks time. I have blogged about this organisation before as they have been a great support to our family since losing Ava. 

Please consider sponsoring Nicole and Jessica! 

http://ntcity2surf2015.gofundraise.com.au/page/DavisNicole#.VVbEm9RiBgg.facebook

So proud of my twin for supporting us in this way. She has only started running recently! 

Meet Amelia - a CH/LM fighter!

Not long before Ava died I was put in contact through an international Lymphatic Malformation online forum with Jessica who is also from NSW Australia. We were told Ava had a large cystic hygroma which in the weeks to come we would find out she had more than 1 and just how big and extensive they were. Cystic hygroma is also known as lymphatic malformation. I had trying to find someone who lived in Aus for weeks. As this condition is very rare it is difficult to find children who live with it. Many babies do not survive the pregnancy, especially in extensive cases such as Ava's. Her daughter Amelia was born with cystic hygroma / lymphatic malformation. She is an amazing little girl who has been through so much. She is only 16 months old and has so far had 17 surgeries. She has been in hospital for 8.5 months of her whole life so that's half the time she has been here. Her mum cares for her 24/7. She has a tracheostomy as her airway has been compromised by the CH and is fed through her stomach through a gastrostomy as she is unable to eat. She gets sick very easily as it effects her immune system. She is currently in hospital at the moment. It is a lifelong condition. 

Below are some links I would love you to look at to gain some more information on what life is like for Amelia and her family living with this. You can also support Amelia and children just like her through the bandaged bear appeal that has been set up on behalf of Amelia. 

https://bandagedbearchina2015.everydayhero.com/au/fundraising-on-behalf-of-amelia-alispahic

This is a short video where about halfway through Amelia's family is shown discussing Amelia and what the hospital has done for them

https://drive.google.com/file/d/0Bx1xMVgy1vpjaVljRVQ4d19BeE0/view?pli=1

Next week on the 6pm news on channel 7 they are also being featured in a story. Once the details are confirmed about what night I will post about it. 

When Ava Grace is constantly on my mind...

When Ava Grace is constantly on my mind I like it but I also find it difficult to concentrate or be motivated to do anything. So lately I start sewing when I feel this way. There are so any other things I could and should be doing as a busy mum and teacher but I'm no good to anyone when I can't concentrate! 

Today was one of 'those'days. My son is sick with a cold, my daughter was having epic tantrums and I was just over everything - which meant I actually got a lot of sewing done. Today I made 9 blanket sets. A large version and a small keepsake version. The fabric I used was a baby elephant theme for 5 of the sets and the other 4 I used fairytale themed fabric. I have the same baby elephant material in blue so that will be my next job. 

I miss her so much on days like today. 

I've had a lump sitting in my throat all day  while I've been on the verge of tears - but I haven't and I'm starting to think that it's a bit weird that I keep feeling like I want and need to cry but I don't/can't. 

It's the 16th May tomorrow, two whole months since Ava has been gone. I'd also be at the point on my baby having a good chance of survival if born right now - had she not already died because of cystic hygroma. 

Drop off arranged Wednesday 20th May

I just spoke to the Nurse Unit Manager at my local hospital where I delivered Ava to organise a time I could drop the blankets off. She was lovely and we have arranged  for me to go in on Wednesday 20th May to meet with her and give her the blankets I have made so far. 

Now to get busy packaging them all up! 

It will be the first time back on the ward so feeling a bit emotional about it but it will be good to see the midwives and staff who cared for us and Ava too and give back to the hospital who were so wonderful. 

40 + 2 blanket packs completed

I have completed 40 blanket packs since I started sewing. I have already given away two packs sadly to people I know. 

A bit proud of myself for someone who only started sewing weeks ago and had no idea how to begin with! My secret is actually husband - I have no idea how to set the machine up so he does this for me to start and if anything goes wrong - he fixes it! 

I have made all of the blankets in a variety of sizes, some are for either gender and others are more specific to a little boy or little girl. Some would be suitable for a baby from about 13 weeks right up until a full term stillbirth. 

The blankets are in packs of two. One normal size blanket for the baby to be wrapped in and a smaller one for the parents to keep as a reminder of the one their baby was wrapped in. 

Now I have to work up the courage to organise a day I can go into the hospital I delivered Ava in and take them to the ward where she was born as a second trimester loss. I couldn't even tell you what the ward looks like it even who half the midwives were who cared for us there as I was in shock and couldn't see through the tears. I had my head down coming in and leaving as I couldn't bear to see other pregnant women with their bellies or holding their babies. 

If you are a sewer, knitter or do crochet and would like to contribute by either donating fabric or wool or can make Angel baby blankets/nappies/clothes etc please contact me - I would love to have your help! Please feel free to share my blog and the Facebook page so that other who may be interested can help too. 

Sadly miscarriage and stillbirth is all too common. I asked a midwife how often people were giving birth to their babies that had died on the ward I was on and was told every few days in that hospital. 

Thanks for your support! 

Mothers Day Gifts

Today was Mothers Day and my husband and kids tried really hard to make it a good day for me even though they knew I was distracted with my sadness around not being pregnant with Ava which I should have been at this point, but we had a lot of fun too and was spoilt wih breakfast at a lovely cafe and we had a lot of laughs.

It's hard when your heart feels so full but at the same time it's broken and there is a piece that's missing that you know won't be fixed. 

My daughter painted this picture for me and have it to me this morning saying "mum, I painted a picture of Ava for you because I know you miss her" and later on she gave me a pancake she had decorated and she had drawn a star with icing telling me that I had to imagine that Ava was invisible sitting on the star. 

She then came and gave me a plate of strawberries and said she had made Ava's face with them. 

In the first few weeks after Ava died she didn't talk about Ava much which was fine, but I find she is talking more and more about her now which is music to my ears but I hate that she also has to process that she has a sister that isn't here. It's so bittersweet! 

She bought me a purple teddy from the Mother's Day stall at school and told me it was just like my bear of hope so I can remember Ava :) 

Tomorrow marks 8 weeks at 11.58am since she was born. Miss her more everyday...

Mothers Day

Bears of Hope High Tea

I went to a high tea that was organised by Bears of Hope today. I had 3 close friends come with me. It is so good to have support from the people that mean most to you. I really enjoyed the afternoon, even though it was tinged with sadness because I wouldn't be there if I was still pregnant with Ava.

On the table was gift for all of the bereaved mothers with our children's names engraved (hard to see in the pic) 

Tomorrow if you are a bereaved mother who has a child who has died and don't have them here to celebrate with you, I am so sorry. Be kind to yourself and just do what you have to do to get through Mother's Day and know that even if you don't have any living children you are still a mother...

Facebook Page

This is the link to the Facebook page I have created:


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


Please contact me if you know someone who needs an Angel baby blanket.

Thankyou for the kind donations and beautiful blankets!

Thankyou to my friend and colleague Sara and her mum for making some beautiful crochet blankets. The white and blue one was made for Ava to match her frozen dress. These will be added to my collection that I have been sewing to take to the hospital. My beautiful mother in law is knitting some small beanies too! 

I would also like to thank my friend Rachel for her donation of material for me to sew with and some blankets already made. 

Bernadette is another friend and colleague who also has donated material for me to sew with, Thankyou! 

I cannot wait to give these to the hospitals close by as I know they will be greatly appreciated by the families who receive them for their babies. 

Ava's Angel

My sister in law Susan brought this Angel over for Ava last night, it's holding her birthstone which is aquamarine. Love it! 

Art work for Ava

 

We now have something very special hanging on our wall.My brother in law Andrew is a Graphic Illustrator and is very talented. He wanted to make something for his niece and we absolutely love it! I love how he incorporated Ava's perfect hand and footprints. It has all of Ava's important information such as her weight, length and time of birth. My favourite verse from Psalms in the bible has been included. This verse is part of a song we sing at our wedding almost 10 years ago and I had no idea it would mean so much in years to come. The birds are their because Ava means "little bird".

Andrew has his own business called Scope Creations and he would love to hear from you! His website is http://www.scopecreations.com.au 

International Bereaved Mothers Day

Today is international bereaved Mother's Day all around the world. Today mothers are waking up to a day they never wanted to be a part of, that some may have heard of before but have never been a part of the club before and now somehow are since their babies and children have died. It is also for women who are still yet to hold their longed for baby through their battle with infertility so have felt loss through that. 

I am not looking forward to Mothers Day this year, I know people will say I should be thankful and think of the 2 living children I have but they haven't walked in my shoes so easy for them to say if they haven't had their heart torn into pieces and now have a permanent hole in it that will never completely heal. Mother's Day will take on a completely different meaning for me now. 

Standing with my friends who are remembering their babies today too. 

Missing my Ava Grace and her 10 tiny fingers and toes and remembering my other tiny Angel.