I had quite a few people ask me before and after Ava was born a question. They asked me if our third child was planned and why would we have a third child when we already have a girl and a boy - a pigeon pair, and then the next line - why would you go through fertility treatment "again".
This has always baffled me when I have heard other people being told the same thing. It wouldn't have mattered if we already had 2 boys, or 2 girls or our boy and girl and if we hadn't had to fight so hard for all our children to be born.
Even though Ava wasn't with us long and everything didn't turn out how we had planned, I am still so happy we had her and that we got to hold and meet her.
So to anyone who says to me why did we have a third child? I say "because they are worth it".
Ava Grace Johnson was very much wanted and worth it.
Tuesday, 31 March 2015
Monday, 30 March 2015
2 weeks on...
Ava has been gone for two weeks now, and even though I'm not crying on the outside as much as I was last week, I am still crying on the inside everyday. She is the first thing I think of when I wake up and the last I think of when I go to sleep.
I feel like I have accomplished a lot this week while I move through my grief. We received and have displayed Ava's Recognition certificate which is hung between our other two children's photographs. I have had Ava's photos printed and we have hung six of them in our bedroom and put a couple more around the house. I have met with some friends and been able to share some of Ava's photographs with them, we had my sons 3rd birthday party and was helped by friends putting this on - I even made his cake, I have resumed doing my daughters weekly speech therapy, which involves therapy every day to try and get her stutter under control. I have attended my daughters parent teacher interview and was pleased that despite me feeling like a failure of a parent to my daughter in kindergarten, she is doing well at school. I have made my complaints to the crematorium (2 complaints now) and have also made a formal complaint to the hospital where Ava was taken to have her Autopsy. I have continued our fundraiser on behalf of Ava and currently have enough for 15.5 Bears and packages! Thankyou!
Grief is weird. I think for a lot of people it is completely consuming, and it definitely consumes me at the moment, but as most people who know me well, they know I can't just sit still doing nothing, I normally have a few balls thrown in the air at the same time. So forcing myself to be advocating for my daughter and trying to pick myself up everyday to get my daughter off to school and care for my son and also support my husband who is grieving (and also in pain after an accident with boiling water which has left him with a large burn on his arm) is good for me. Some people have commented that I seem much better, and physically I am much better.
However
A broken heart can't be seen or even heard through a stethoscope, but it is painful, the most painful wound I have ever had, it won't heal in time as "time does not heal all wounds" as the saying goes. I know this from prior life experiences. I know I will adapt, change and cope with my "new normal" but it's going to be a slow process.
March is almost over which makes me sad, as that is my daughters birth month. When it is March again it will be the time she would of turned 1 and we would of had a party for her.
Missing my baby every day xxx
I feel like I have accomplished a lot this week while I move through my grief. We received and have displayed Ava's Recognition certificate which is hung between our other two children's photographs. I have had Ava's photos printed and we have hung six of them in our bedroom and put a couple more around the house. I have met with some friends and been able to share some of Ava's photographs with them, we had my sons 3rd birthday party and was helped by friends putting this on - I even made his cake, I have resumed doing my daughters weekly speech therapy, which involves therapy every day to try and get her stutter under control. I have attended my daughters parent teacher interview and was pleased that despite me feeling like a failure of a parent to my daughter in kindergarten, she is doing well at school. I have made my complaints to the crematorium (2 complaints now) and have also made a formal complaint to the hospital where Ava was taken to have her Autopsy. I have continued our fundraiser on behalf of Ava and currently have enough for 15.5 Bears and packages! Thankyou!
Grief is weird. I think for a lot of people it is completely consuming, and it definitely consumes me at the moment, but as most people who know me well, they know I can't just sit still doing nothing, I normally have a few balls thrown in the air at the same time. So forcing myself to be advocating for my daughter and trying to pick myself up everyday to get my daughter off to school and care for my son and also support my husband who is grieving (and also in pain after an accident with boiling water which has left him with a large burn on his arm) is good for me. Some people have commented that I seem much better, and physically I am much better.
However
A broken heart can't be seen or even heard through a stethoscope, but it is painful, the most painful wound I have ever had, it won't heal in time as "time does not heal all wounds" as the saying goes. I know this from prior life experiences. I know I will adapt, change and cope with my "new normal" but it's going to be a slow process.
March is almost over which makes me sad, as that is my daughters birth month. When it is March again it will be the time she would of turned 1 and we would of had a party for her.
Missing my baby every day xxx
Friday, 27 March 2015
Feeling so angry
I've been mostly feeling sad, a bit of anger, but mostly sad - but this afternoon I am incredibly angry.
The crematorium have stuffed up - again! We went to pick up her ashes in the urn we had chosen last week, I was already mad at them earlier in the day as they couldn't find the record of us being there last week so we're already late in getting her ashes to us. When we arrived, we were told all her ashes didn't fir in the urn so they had put the "left overs" in a plastic box. We were told we could scatter the left overs somewhere or leave the other half at the crematorium in a memorial box. I just sat there stunned - my daughters ashes have been halved without my knowledge. I will not have half of my baby at home and half somewhere else. The woman who saw us had found and showed us a picture of another urn double the size of the other one but a different colour etc. in the end we agreed to return once they ordered us one and then I will have to take the urn and the left overs box back in (probably will have to leave her there overnight we were told) and then they will put the ashes back together in the bigger urn.
The thing that gets me is that Ava would have to be one of the smallest babies to be cremated, so why on earth do they make such tiny urns in then first place and why on earth would they sell us an urn that wouldn't fit her ashes, it wasn't like it was only a tiny bit, it was a lot of ashes in the other box.
The incompetence of the place is really ridiculous, there are just hurting us even more. It's so unprofessional and such a disgrace to the industry. We have paid $1000 just to have the honour of having her cremated and put in an urn, I can't imagine how much they would have stuffed up her funeral if we had chosen to have one - for which we would have paid thousands more. They are a well known, big company - they need to change, as it is just not right.
I can see another complaint to them coming, but this time to someone high up in the company. I still see myself as an advocate for my daughter, so will do what I need to do so this doesn't happen to someone else.
Ava's Angel Gown Wrap
Ava's angel gown wrap. So nice to have people donating their wedding dresses to the Angel Gown Organisation to be made with love into Angel gowns for families such as ours. 
The system needs to be changed
I have made 2 complaints this week as systems need to be changed so that other parents aren't left more devastated when they are already grieving. My first complaint was to the crematorium.
I wanted to hold and cuddle Ava one last time so we had organised this at the last minute before she was cremated. I was devastated to see that she wasn't in her angel gown. Instead she had been dressed in a knitted dress (the dress was nice but had no meaning for us). I asked where her angel gown was which had been donated to us by the Angel Gown organisation as this is what she had been dressed in when we had left her at the hospital. After some phone calls it was discovered and we were told that her gown had been "disposed of" as it was contaminated. I was sad at the time but then later felt angry and incredibly betrayed, as we would never had known this if we hadn't chosen to see her again before she was cremated.
Parents need to be informed about this and im sure other mothers of an angel baby would tell you they would happily go and undress their angel baby and take what was "contaminated" themselves if given the option. When I posted about this on my support group FB page I heard from other mothers who had had the same thing happen and then other mothers are now left wondering what their baby was dressed in if they hadn't organised one last hold with their children. Of course the crematorium blamed the hospital where Ava was sent too for her autopsy to be done.
So today I made a complaint to that hospital where she was sent to from the hospital she was born at (which was wonderful). I said that they need to ensure that procedures and policies are looked at and changed. They should have put her Angel Gown aside so it wasn't "contaminated". I hate to think what they did to it to be contaminated in the first place.
These people need to realise that we don't have many memories and things that were given to our children are precious. If I had known that Ava wasn't to be cremated in her Angel Gown Wrap, then I wouldn't have sent her to have her autopsy dressed in it. I would have given it to the crematorium or funeral home to be dressed in after, or I would have kept it myself.
Angel Gowns heard of my story and are going to make me another one, but they understand it is not the same as Ava wasn't wearing it.
Some of the most precious things I now own would be of no value to anyone in this world, but her
dress, her beanie, her nappy, her blankets are worth more than gold.
I hope changes are made, as some good needs to come from Ava's death.
I wanted to hold and cuddle Ava one last time so we had organised this at the last minute before she was cremated. I was devastated to see that she wasn't in her angel gown. Instead she had been dressed in a knitted dress (the dress was nice but had no meaning for us). I asked where her angel gown was which had been donated to us by the Angel Gown organisation as this is what she had been dressed in when we had left her at the hospital. After some phone calls it was discovered and we were told that her gown had been "disposed of" as it was contaminated. I was sad at the time but then later felt angry and incredibly betrayed, as we would never had known this if we hadn't chosen to see her again before she was cremated.
Parents need to be informed about this and im sure other mothers of an angel baby would tell you they would happily go and undress their angel baby and take what was "contaminated" themselves if given the option. When I posted about this on my support group FB page I heard from other mothers who had had the same thing happen and then other mothers are now left wondering what their baby was dressed in if they hadn't organised one last hold with their children. Of course the crematorium blamed the hospital where Ava was sent too for her autopsy to be done.
So today I made a complaint to that hospital where she was sent to from the hospital she was born at (which was wonderful). I said that they need to ensure that procedures and policies are looked at and changed. They should have put her Angel Gown aside so it wasn't "contaminated". I hate to think what they did to it to be contaminated in the first place.
These people need to realise that we don't have many memories and things that were given to our children are precious. If I had known that Ava wasn't to be cremated in her Angel Gown Wrap, then I wouldn't have sent her to have her autopsy dressed in it. I would have given it to the crematorium or funeral home to be dressed in after, or I would have kept it myself.
Angel Gowns heard of my story and are going to make me another one, but they understand it is not the same as Ava wasn't wearing it.
Some of the most precious things I now own would be of no value to anyone in this world, but her
dress, her beanie, her nappy, her blankets are worth more than gold.
I hope changes are made, as some good needs to come from Ava's death.
Thursday, 26 March 2015
Ava Grace - fundraiser for Bears of Hope
Ava Grace is going to make a difference in other families lives. Proud of our girl!
Our fundraiser we set up in honour of Ava has currently raised over $1,400 due to the generosity of our family and friends.
Wednesday, 25 March 2015
Time is passing so quickly...
I can't believe it's been 9 days since my daughter was born after a fast labour. Leaving her at the hospital was the hardest thing I have ever had to do. There are no words to properly describe the grief and physical pain that a person endures when their child dies.
Organising for our daughter to be cremated felt so wrong, sitting in a room with samples of coffins was stifling, originally I wasn't going to go, just my husband and my sister were going to go as I just didn't feel like I could do it, but I'm glad I did. So many forms to fill in and so much money! I had no idea that death and funerals were such big business. We weren't going to see her again after leaving her at the hospital but I felt desperate over the weekend to see her so the funeral home or gained it for us. We saw her, sat with her andand cuddled her for more than an hour and I know we made the right decision. I know I was only holding her body and that she is gone, but it felt so right. Choosing an urn was horrible, they all looked so old fashioned and ugly. I am happy with our choice though, it doesn't look like an urn and is small and we can get it engraved.
The organisation and the photographer that came were amazing, we have already been sent the link so we can download Ava's photos, and soon we will get sent their package. The photos they took are such precious memories that I know we will look back on and be happy we got them done. I have already made a special album and have looked at it many times.
I have booked and paid for our tickets to the Bears of Hope Annual Ball in August. This will be a hard time as Ava was due around this time, but imthinkmit will be a nice way to honour our girl.
I have been looking for some jewellery that will be a nice memorial to Ava. I have chosen a heart
shaped gold locket which will have Ava's footprints engraved on the front and her name and birthdate on the back. I will also put 2 tiny photos of her inside. My generous twin and sister in law are buying it for me.
Our fundraiser is going well raising money for Bears of Hope, we currently are sitting at $1299.00! So that means that 13 Bears and packages will go to families liked us. Thankyou to everybody who has already donated towards this cause.
Time has flown which I find distressing as it means it is more time that I haven't held her, but I can also look at it that I'm one step closer to seeing her again in heaven one day.
Missing our girl everyday, walking through this grief feels unbearable most of the time, but I'm not crying 24/7 so I guess that's a good thing?
Organising for our daughter to be cremated felt so wrong, sitting in a room with samples of coffins was stifling, originally I wasn't going to go, just my husband and my sister were going to go as I just didn't feel like I could do it, but I'm glad I did. So many forms to fill in and so much money! I had no idea that death and funerals were such big business. We weren't going to see her again after leaving her at the hospital but I felt desperate over the weekend to see her so the funeral home or gained it for us. We saw her, sat with her andand cuddled her for more than an hour and I know we made the right decision. I know I was only holding her body and that she is gone, but it felt so right. Choosing an urn was horrible, they all looked so old fashioned and ugly. I am happy with our choice though, it doesn't look like an urn and is small and we can get it engraved.
The organisation and the photographer that came were amazing, we have already been sent the link so we can download Ava's photos, and soon we will get sent their package. The photos they took are such precious memories that I know we will look back on and be happy we got them done. I have already made a special album and have looked at it many times.
I have booked and paid for our tickets to the Bears of Hope Annual Ball in August. This will be a hard time as Ava was due around this time, but imthinkmit will be a nice way to honour our girl.
I have been looking for some jewellery that will be a nice memorial to Ava. I have chosen a heart
shaped gold locket which will have Ava's footprints engraved on the front and her name and birthdate on the back. I will also put 2 tiny photos of her inside. My generous twin and sister in law are buying it for me.
Our fundraiser is going well raising money for Bears of Hope, we currently are sitting at $1299.00! So that means that 13 Bears and packages will go to families liked us. Thankyou to everybody who has already donated towards this cause.
Time has flown which I find distressing as it means it is more time that I haven't held her, but I can also look at it that I'm one step closer to seeing her again in heaven one day.
Missing our girl everyday, walking through this grief feels unbearable most of the time, but I'm not crying 24/7 so I guess that's a good thing?
Friday, 20 March 2015
Raising funds for "Bears of Hope"
The thought of leaving hospital without your baby is extremely traumatic. There is no need for a car seat and no need for a baby bag. When we were in hospital the staff were lovely. They gave us clothes to dress Ava in and also some for us to keep. This included a sweet polka dot dress, nappy, beanie and booties. They gave us a baby blanket, baby I.D. Tags and more.
Before we left Ava, she was dressed and wrapped in an "angel gown". The organisation Angel Gowns collect and make gowns for babies to wear who were too sick to come home. http://www.angelgownprogram.org.au
We were given a bag that included support materials from Pregnancy Loss Australia http://www.pregnancylossaustralia.org.au
In this bag there were also materials from the organisation Bears of Hope. http://www.bearsofhope.org.au
This organisation send packs to maternity hospitals that include supporting materials and a 'bear of hope'. The idea behind it is that parents are forced to walk out of the hospital with empty arms, but when a bear of hope is given they walk out carrying a bear, which is a tiny comfort in the worst of circumstances.
We have had many friends ask what they can do and if there is a cause that we would like donated to on behalf of our family and in memory of Ava Grace. We have chosen Bears of hope and have set up a fundraising page so that other parents can receive a bear and support like we did.
If you would like to donate then please follow the link
http://hugsforhope.gofundraise.com.au/page/Avagrace
Once the fundraiser has finished Bears will be donated to grieving parents and Ava's name and birthdate will be put on their bear, just like ours had the name of a precious little boy who passed away in 2007. I feel it is a lovely legacy that our babies can leave.
http://hugsforhope.gofundraise.com.au/page/Avagrace
Once the fundraiser has finished Bears will be donated to grieving parents and Ava's name and birthdate will be put on their bear, just like ours had the name of a precious little boy who passed away in 2007. I feel it is a lovely legacy that our babies can leave.
Ava is already making a difference!
Ava has only been gone 4 days and I am so proud of her. I rung some funeral homes and spoke to some of the most compassionate people I have ever met. Except for one - the man who answered made me repeat my story twice, and then rudely said that I didn't know the law and that babies born under 20 weeks gestation cannot be cremated. I hung up as I didn't know what to say and he had hurt me to the core, as he made me feel stupid and like my daughters life didn't count, I hate to think what he thinks people do with their babies who haven't reached the "20 weeks". I knew the law myself - we don't legally have to hold a funeral because of the gestation she was born at, but we could if we wanted to, and we most definitely can cremate or bury our daughter.
My fired up sister visited the funeral home today and met with one of the owners. They had an hour long conversation. She was able to discuss Ava and her important life and that they were wrong and they needed to make changes so that no one else had to go through what I have when trying to plan their daughters cremation or burial. They honestly had no idea. While my sister was meeting with the woman, her husband was on the phone finding out more details. They said they would be telling others in the industry who may also not have had the right information either. They also didn't know that Births, Deaths and Marriages have a certificate similar to a birth certificate but isn't a legal document, but to families like ours is very important. They will be getting these forms for grieving families like us. They wanted to apologise in person, but I don't need to hear that, I just wanted them to know that talking to someone how they did when they are going through the hardest time of their lives is not appropriate, and can be soul destroying. Knowing they are making changes is enough of an apology for us.
Proud of our tiny girl Ava!
My fired up sister visited the funeral home today and met with one of the owners. They had an hour long conversation. She was able to discuss Ava and her important life and that they were wrong and they needed to make changes so that no one else had to go through what I have when trying to plan their daughters cremation or burial. They honestly had no idea. While my sister was meeting with the woman, her husband was on the phone finding out more details. They said they would be telling others in the industry who may also not have had the right information either. They also didn't know that Births, Deaths and Marriages have a certificate similar to a birth certificate but isn't a legal document, but to families like ours is very important. They will be getting these forms for grieving families like us. They wanted to apologise in person, but I don't need to hear that, I just wanted them to know that talking to someone how they did when they are going through the hardest time of their lives is not appropriate, and can be soul destroying. Knowing they are making changes is enough of an apology for us.
Proud of our tiny girl Ava!
Who I am at the moment
I hope to write another post in awhile that is about who I am and it be in a more positive light but at the moment this is who I am and so please don't expect me to be who I was for awhile as I navigate our families "new normal". I am changed.
I am a baby loss mumma
I am a mum of 3 children, 2 here on earth and 1 in heaven
I am broken as a person
My heart is shattered
I'm confused and hurt
I have empty arms
I suffer from infertility
I am 31 years old
I am part of a club now I never wanted to join
I am forever changed
I'm a sad person
I'm a worrier
I'm E and O's mummy
I am Ava's mummy
All I ever wanted to be was to be the best mum in the world
I have been forever changed by the birth of my 3rd and very wanted child
I am a baby loss mumma
I am a mum of 3 children, 2 here on earth and 1 in heaven
I am broken as a person
My heart is shattered
I'm confused and hurt
I have empty arms
I suffer from infertility
I am 31 years old
I am part of a club now I never wanted to join
I am forever changed
I'm a sad person
I'm a worrier
I'm E and O's mummy
I am Ava's mummy
All I ever wanted to be was to be the best mum in the world
I have been forever changed by the birth of my 3rd and very wanted child
Thursday, 19 March 2015
Poem my friend wrote for Ava
Ava Grace, the little bird that fell early from the nest took flight to Heaven at God's request, blessed by him to eternal rest.
Briefly they met in the worst of circumstances, lost was the fight of living. A mother's heartache, a father's nightmare and the dreams shattered of a sister, who would be so giving. Those precious moments spent together, were infinitely special however. Frozen in time. Never to be taken away.
Too beautiful for this world, is this stunning and brave little girl. Rather than be a babe she leads from afar, the brightest, warmest, guiding star. Forever watching over those who love her and those who prayed for her mother and father, so bright she shines in the glory of Heaven patiently waiting till her family comes together.
Written by Danica
Wednesday, 18 March 2015
Dedication to Hannah's "Cousin of Heaven"
My brother in law Troy wrote this on facebook. I know not everyone believes the same that we do, but to us it is very important and he has written exactly what we believe. We know that we will see Ava again in heaven completely healed. Our hope is in Jesus Christ and the promises he has for us. God sent his son to die for our sins so that we can have eternal life with him in heaven.
Written by Troy Davis
Dedicated to Hannah's 'cousin of Heaven' ...
These past couple of days the 'ninja that cuts onions around me' (tears from crying if you didn't decipher the meaning) has been making regular appointments with me.
Ava Grace went to be with Jesus on Monday.
I write this because of my daughters response and how this sad event has only strengthened my love for Jesus and my trust that I have in His Name.
You might ask why? Shouldn't it be the opposite? Why didn't God fix and mend Ava in the womb? Surely God could have?
And to be honest I have asked Him why, because I am human.
But in all this, I have ONE thing that some might say I am crazy, or some might say I am fooled, or brainwashed, or that I believe in magical sky gods ... The one thing I have is HOPE.
No matter the pain, no matter the sadness, I have the absolute hope, and that Hope has now been turned into certainty that I will one day meet Hannah's cousin of heaven.
I call her the cousin of heaven, because whilst in emotional sadness, Hannah smiles and says 'yay now I have my first cousin of heaven'
Beautiful words from my six year old, words only Hope can bring.
Some to be thoughtful will say RIP (rest in peace) ... but not in my family.
Ava Grace is not resting in soil, rather she is ALIVE in Heaven.
If for some reason you read this and think in wrong, I ask you to consider the two options I have:
These past couple of days the 'ninja that cuts onions around me' (tears from crying if you didn't decipher the meaning) has been making regular appointments with me.
Ava Grace went to be with Jesus on Monday.
I write this because of my daughters response and how this sad event has only strengthened my love for Jesus and my trust that I have in His Name.
You might ask why? Shouldn't it be the opposite? Why didn't God fix and mend Ava in the womb? Surely God could have?
And to be honest I have asked Him why, because I am human.
But in all this, I have ONE thing that some might say I am crazy, or some might say I am fooled, or brainwashed, or that I believe in magical sky gods ... The one thing I have is HOPE.
No matter the pain, no matter the sadness, I have the absolute hope, and that Hope has now been turned into certainty that I will one day meet Hannah's cousin of heaven.
I call her the cousin of heaven, because whilst in emotional sadness, Hannah smiles and says 'yay now I have my first cousin of heaven'
Beautiful words from my six year old, words only Hope can bring.
Some to be thoughtful will say RIP (rest in peace) ... but not in my family.
Ava Grace is not resting in soil, rather she is ALIVE in Heaven.
If for some reason you read this and think in wrong, I ask you to consider the two options I have:
1. I am filled with Hope and eager expectation of my eternal home where I will be reunited with those that love Jesus as their lord and saviour.
2. Have no hope whatsoever and just be ok with that Ava is dead ... In peace ... In the soil.
I will take option 1 thanks.
To my family and friends that grieve, I grieve also ... but I am filled with Glorious Hope that far outweighs my grief.
2. Have no hope whatsoever and just be ok with that Ava is dead ... In peace ... In the soil.
I will take option 1 thanks.
To my family and friends that grieve, I grieve also ... but I am filled with Glorious Hope that far outweighs my grief.
Ava Grace I will see you in heaven.
My daughter E and her wish list
Our daughter is 5 years old, and Ava's death has hit her hard. She came to me this morning and said she wished Ava had come home so she could of slept with her in her bed. She said she had lots of things she wanted todo with Ava that she can't.
E wanted to:
Sleep with her in her new trundle bed
Take her to the park
Push her around in her dolls pram
Put her to bed in her dolls cot
Trampoline
Seesaw
Races
See her walk
Sandpit
Play at Wet n Wild
Go to another country with her like Queensland or Africa
And lots more.
She is also singing about Ava Grace as I write this:
Ava Grace I miss you, Ava Grace I just want to play with my sister, this is how i feel now, I'm sad and even mummy and daddy are sad and Oliver doesn't understand. I wish I was Jesus I want to see her. I have a wonderful hope in my heart. I'm singing about my sister, I love her, I'm sad. Ava Grace is my favourite sister and that is a beautiful name. Ava Grace Ava Grace Ava Grace. This is breaking my heart. I'm feeling sad, my mummy's feeling sad cause the baby's gone to heaven.
10,711 views in 10 short days of Ava's life
Ava Grace is known! When I looked at the blog stats this morning I could see that 10,711 people had viewed her blog in just 10 days and that made me so happy. Cystic Hygroma is rare, so that fact that so many people from so many countries around the world (most of which we don't know anyone who lives there) know about her and have taken the time to read her story is so comforting at this time. It shows that her life has counted even though she wasn't here for very long.
Tuesday, 17 March 2015
Ava Grace Johnson born 16th March 2015
Ava Grace Johnson was born yesterday Monday 16th March 2015 at 11:58am. This battle with her condition 'Cystic Hygroma' was just to big for her. She fought hard though. We are so glad to have birthed her and met her. She was the most stunningly beautiful little girl, even though we could see she was sick, she was so precious and the months we had with her and feeling her move were so special. She had perfect feet and hands - even down to her dainty fingernails and toes.
Ava looked like her Daddy and sister most I think. She had Mat's nose and O's long feet and E's petite features. She had my knees and her daddy's toes. You can tell she would have been a musician like her daddy with her long fingers.
Our family would like to thank everyone for their support and prayers as we have really felt everyone's love. It was so good knowing how many people were cheering Ava on in her fight with Cystic Hygroma and how much her loss has saddened you too.
I know Mat and I are forever changed and it feels like nothing will ever be normal again, but I know we will find our 'new normal' without having our third child Ava with us growing up with E and O.
When searching meaning for her name there were many, however we chose to stick with these.
Ava - little bird, flight
Grace - blessed, Gods favour
Psalm 84:10a "Better is one day in your courts, than a thousand elsewhere"
The above psalm has also been written as a song and this is the song that Mat and I had sung at our wedding 10 years ago, little did we know how important that song would be - we thought it was beautiful back then and now even more so, I believe every word of it too!
~We love and miss you Ava Grace our beautiful and precious girl~
Ava looked like her Daddy and sister most I think. She had Mat's nose and O's long feet and E's petite features. She had my knees and her daddy's toes. You can tell she would have been a musician like her daddy with her long fingers.
Our family would like to thank everyone for their support and prayers as we have really felt everyone's love. It was so good knowing how many people were cheering Ava on in her fight with Cystic Hygroma and how much her loss has saddened you too.
I know Mat and I are forever changed and it feels like nothing will ever be normal again, but I know we will find our 'new normal' without having our third child Ava with us growing up with E and O.
When searching meaning for her name there were many, however we chose to stick with these.
Ava - little bird, flight
Grace - blessed, Gods favour
Psalm 84:10a "Better is one day in your courts, than a thousand elsewhere"
The above psalm has also been written as a song and this is the song that Mat and I had sung at our wedding 10 years ago, little did we know how important that song would be - we thought it was beautiful back then and now even more so, I believe every word of it too!
~We love and miss you Ava Grace our beautiful and precious girl~
Friday, 13 March 2015
Thinking about what to name our lil girl...
We love naming our children and thankfully my husband I are always on the same page with names that we like, so it usually doesn't take long for us to come up with the perfect names for our children.
We like traditional names that have become popular again and ones that sound nice when put with their sibling names. Our middle names are not family names (no offence to our family but we really don't like any of their names!) for a middle name we pick ones that we believe go well together and roll off the tongue when said.
Sooooo, scroll down and we will write what our little girls name will be....
Ava Grace
Wednesday, 11 March 2015
She is so precious
She is so precious to us. She may be tiny but we love her and will always love her. Today was a tough day and I know there will be tougher days to come.
Monday, 9 March 2015
Ultrasound
We had an ultrasound today. 14 weeks and 3 days. She is so gorgeous in her pictures and I'm so glad we have those and her DVD's. The specialist didn't want to say the hygromas had resolved, though they looked less to us and they measured a mm or 2 less but they def aren't bigger. She said she thinks there is a cystic hygroma down her side as well - I think under her arm? I asked her if she thinks our odds have improved since 2 weeks ago and also because the CVS was clear. She said "there is something wrong with your baby, we just don't know what yet but yes I think your odds would have improved for bringing home a live baby but whether it's healthy or not is the question" so pretty devasting sitting there hearing that.
It is so hard to accept that as our daughter looks so good on ultrasound, she is measuring perfectly and her heart looks very good too. They can tell her kidneys are working and her brain is the right size and shape too. I guess the hard part is not knowing what is really going on neurologically and we won't until she is born and probably awhile after that. They saw 2 choroid cysts on her brain (one on each side) but when I asked the specialist about them she said that they find them all the time on normal babies and she wouldn't have mentioned them to us, it was only because I asked as I had asked the ultrasound tech about them. Still hard to relax.
Just not fair and I know there are lots of things in this imperfect world that don't go right and lots of babies die everyday and you never find out why, and it doesn't bring them back anyway but I just hate being in this limbo. If she survives to term and is born that is such a long way off - the 4th of September feels like years away at the moment. So much unknown.
The specialist said that we probably won't get anymore answers on ultrasound during the pregnancy. She still needs to be monitored closely and hydrops (fatal) is still a real possibility of developing. Unless the OB or the Geneticist or another specialist wants an ultrasound in between we won't be having one until I am 19 weeks pregnant - 5 weeks, that seems like an eternity away, though we still will see her "on screen" before then a few times as my OB will do an ultrasound everytime I see him and at the moment that is weekly.
Once again thanks for all your support, it means so much to us. At last check over 3,500 views have been made of this blog which is amazing - people from Australia, US, Uk, Sth Africa, United Arab Emrites, Jordan, China and Vietnam!
Again if anyone is reading and has any information or personal experience with cystic hygroma's please contact us.
It is so hard to accept that as our daughter looks so good on ultrasound, she is measuring perfectly and her heart looks very good too. They can tell her kidneys are working and her brain is the right size and shape too. I guess the hard part is not knowing what is really going on neurologically and we won't until she is born and probably awhile after that. They saw 2 choroid cysts on her brain (one on each side) but when I asked the specialist about them she said that they find them all the time on normal babies and she wouldn't have mentioned them to us, it was only because I asked as I had asked the ultrasound tech about them. Still hard to relax.
Just not fair and I know there are lots of things in this imperfect world that don't go right and lots of babies die everyday and you never find out why, and it doesn't bring them back anyway but I just hate being in this limbo. If she survives to term and is born that is such a long way off - the 4th of September feels like years away at the moment. So much unknown.
The specialist said that we probably won't get anymore answers on ultrasound during the pregnancy. She still needs to be monitored closely and hydrops (fatal) is still a real possibility of developing. Unless the OB or the Geneticist or another specialist wants an ultrasound in between we won't be having one until I am 19 weeks pregnant - 5 weeks, that seems like an eternity away, though we still will see her "on screen" before then a few times as my OB will do an ultrasound everytime I see him and at the moment that is weekly.
Once again thanks for all your support, it means so much to us. At last check over 3,500 views have been made of this blog which is amazing - people from Australia, US, Uk, Sth Africa, United Arab Emrites, Jordan, China and Vietnam!
Again if anyone is reading and has any information or personal experience with cystic hygroma's please contact us.
Saturday, 7 March 2015
People Who Care
2589 - That's how many times people have visited my blog I created yesterday. Mat and I are blown away by how many people have taken the time to read what is happening with Baby J and her health. At first I was apprehensive about sharing our news and also details about what we are facing as it is so raw. Some days I don't feel like talking about it as it just makes me too sad, and other days I want everyone to know her and acknowledge her life. I had no idea that this blog would allow so many people to hear her story. The greatest part is we now know how many people are praying for her. I know not everyone is a Christian and not everyone prays, but I do know a large proportion who are following her journey will be praying! That brings great Joy and peace to us. Thankyou xx
Friday, 6 March 2015
Prayers and thoughts at this moment
Right now we are praying for a miracle.
We have been told that a Cystic Hygroma is the indicator that something is seriously wrong with our daughter, whether that be a rare genetic disorder, heart defect, skeletal issue or something unknown etc. Everything points to a bad outcome, I know that sounds pessimistic but that is what we have been told by the experts and also what we have read. The fact that is has grown so quickly and to such a large size and also the way it is sitting around her neck are all bad signs.
At the moment we are specifically praying the fluid starts resolving - this doesn't mean that the problem that has caused the Cystic Hygroma to grow will be gone, but at least it will be a start.
It is also known as a lymphatic Malformation - we are praying that the lymphatic system kicks in if it is underdeveloped so that the fluid has somewhere to go.
The baby developing Hydrops is a real fear at this point as is common at this stage and a bit later in the pregnancy and this is fatal.
We are praying that nothing (or something) is shown on our next ultrasound on Monday. We need to know what we are dealing with. As she grows bigger there is more that will be able to be seen and checked by ultrasound.
She has shown us she is a fighter and strong and we pray and hope this continues and that her growth continues to stay on track.
I need my severe morning sickness and migraines to go so I can concentrate on my children as am not feeling like a great mummy at the moment, as very tired and feeling nauseous day and night. My husband has been so amazing and is such a fantastic daddy to our children and has taken on a lot of the burden while keeping up with work and running a household and coming to frequent appointments with me.
We have already had a long conversation with a genetic counsellor and will be meeting with her and the geneticist in just over a week, I am praying that we understand what they are saying and can gain a better insight into what we are possibly facing.
A poor prenatal diagnosis that is not specific is quite debilitating for us at the moment. Some days we feel positive that our baby will make it and be such a clear example of a miracle by God. Other days (especially me) I am devastated and can't stop crying. My daughter has just started school and my son is young and I do not want their lives disrupted more than they have to be at the moment. Children pick up on so much and I know they are feeling the strain of it all. E asks me daily if the baby is feeling better yet and O asks if baby is ok at different times.
I want to say thank you to everyone who has been supporting us through prayer, support, babysitting, meals and those who have been such great listeners whilst I have poured my heart out.
This is a journey that we have not chosen to be on but nonetheless we have to walk this path (again).
Thank you for walking with us…
Have been singing this song all day: "Mighty to Save" by Hillsong. https://www.youtube.com/watch?v=-08YZF87OBQ
We have been told that a Cystic Hygroma is the indicator that something is seriously wrong with our daughter, whether that be a rare genetic disorder, heart defect, skeletal issue or something unknown etc. Everything points to a bad outcome, I know that sounds pessimistic but that is what we have been told by the experts and also what we have read. The fact that is has grown so quickly and to such a large size and also the way it is sitting around her neck are all bad signs.
At the moment we are specifically praying the fluid starts resolving - this doesn't mean that the problem that has caused the Cystic Hygroma to grow will be gone, but at least it will be a start.
It is also known as a lymphatic Malformation - we are praying that the lymphatic system kicks in if it is underdeveloped so that the fluid has somewhere to go.
The baby developing Hydrops is a real fear at this point as is common at this stage and a bit later in the pregnancy and this is fatal.
We are praying that nothing (or something) is shown on our next ultrasound on Monday. We need to know what we are dealing with. As she grows bigger there is more that will be able to be seen and checked by ultrasound.
She has shown us she is a fighter and strong and we pray and hope this continues and that her growth continues to stay on track.
I need my severe morning sickness and migraines to go so I can concentrate on my children as am not feeling like a great mummy at the moment, as very tired and feeling nauseous day and night. My husband has been so amazing and is such a fantastic daddy to our children and has taken on a lot of the burden while keeping up with work and running a household and coming to frequent appointments with me.
We have already had a long conversation with a genetic counsellor and will be meeting with her and the geneticist in just over a week, I am praying that we understand what they are saying and can gain a better insight into what we are possibly facing.
A poor prenatal diagnosis that is not specific is quite debilitating for us at the moment. Some days we feel positive that our baby will make it and be such a clear example of a miracle by God. Other days (especially me) I am devastated and can't stop crying. My daughter has just started school and my son is young and I do not want their lives disrupted more than they have to be at the moment. Children pick up on so much and I know they are feeling the strain of it all. E asks me daily if the baby is feeling better yet and O asks if baby is ok at different times.
I want to say thank you to everyone who has been supporting us through prayer, support, babysitting, meals and those who have been such great listeners whilst I have poured my heart out.
This is a journey that we have not chosen to be on but nonetheless we have to walk this path (again).
Thank you for walking with us…
Have been singing this song all day: "Mighty to Save" by Hillsong. https://www.youtube.com/watch?v=-08YZF87OBQ
CVS results in...
The Ultrasound Specialist called today and told us the CVS test came back clear for the chromosome and microarray that was done. She herself said she didn't know what to say because it just makes our decision so much harder as we still don't have any answers. She said that there are still many genetic disorders that can't be tested for that are fatal, while in utero, or soon after birth and also incredibly disabling and debilitating syndromes that we may not know about until after the birth.
It feels all so surreal at the moment. We were given a 10% chance at best of bringing home a LIVE, HEALTHY baby at our 12 week, 5 day scan. That means a 90% chance that something is very wrong with her. Which is hard to take since, her heart at the moment looks ok (another common reason for the development of a Cystic Hygroma is a heart defect), her brain is the right size, she has 2 kidneys and overall looks healthy EXCEPT for a MASSIVE Cystic Hygroma. Everything I read gives even lower statistics of bringing home a healthy baby, which is so depressing and my brain hurts from just thinking about it. I know the doctors have to give us the worse case scenario's but I really need to be given some hope at this point.
I have done so much research and reading other peoples stories, and honestly I have hardly come across anyone else who has had a Cystic Hygroma as large as our daughter, let alone a story where it has had a happy ending. Many of these babies go on to develop Hydrops which means fluid accumulates all throughout the body and this is fatal. Then the decision that we will face will be either to end the pregnancy early (and this will mean giving birth) or to carry her to term or however long she may stay with us. Heartbreaking.
It feels all so surreal at the moment. We were given a 10% chance at best of bringing home a LIVE, HEALTHY baby at our 12 week, 5 day scan. That means a 90% chance that something is very wrong with her. Which is hard to take since, her heart at the moment looks ok (another common reason for the development of a Cystic Hygroma is a heart defect), her brain is the right size, she has 2 kidneys and overall looks healthy EXCEPT for a MASSIVE Cystic Hygroma. Everything I read gives even lower statistics of bringing home a healthy baby, which is so depressing and my brain hurts from just thinking about it. I know the doctors have to give us the worse case scenario's but I really need to be given some hope at this point.
I have done so much research and reading other peoples stories, and honestly I have hardly come across anyone else who has had a Cystic Hygroma as large as our daughter, let alone a story where it has had a happy ending. Many of these babies go on to develop Hydrops which means fluid accumulates all throughout the body and this is fatal. Then the decision that we will face will be either to end the pregnancy early (and this will mean giving birth) or to carry her to term or however long she may stay with us. Heartbreaking.
The DVD didn't work!
The DVD that I paid for at the Ultrasound place didn't work when we tried to watch it! This had the last 2 scans on it and we are devastated. I called and went in and gave it to them and they think it must have been a dodgy one. Normally I wouldn't be so emotional about it but this may be the only memory we have of our daughter as we have been told that the risk of miscarriage at any stage in the pregnancy is high. They offer to do a "freebie, non diagnostic scan" the next day, so at least we were able to get another one done - I asked for the measurement of the hygroma and it was 10.88mm so bigger again but the woman tried to reassure me that because it is just a mm it could just be the different person doing the measurement - not really reassuring at this stage!
Jesus loves the little children
The night before we had our 12 week 5 day scan, E was sitting in her room waiting for me to come and read with her and say goodnight. She had her children's bible in her lap and open as if she was reading it. She looked up at me and said "Mum, do you know that Jesus loves ALL the little children?" It was a question as much as a statement and it meant the world to me. Yes! Jesus does love ALL the little children, including our precious baby daughter!
I really felt like God used her to tell me something that I really needed to hear and meditate on at a time when I was most in need and most frightened. What she said and how she said it will always stay with me.
Jesus loves the little children, all the children of the world….
I really felt like God used her to tell me something that I really needed to hear and meditate on at a time when I was most in need and most frightened. What she said and how she said it will always stay with me.
Jesus loves the little children, all the children of the world….
Telling our Children
I feel we need to tell the kids what is going on. After all, they are the two most important people in our lives and I don't want them finding out from someone else or after the fact.
My twin sister and her family is visiting with us and I am so grateful she is here with us during one of darkest weeks. She has cooked us dinner and cleaned up the house while we got the kids ready for bed.
We told them that we wanted to tell them something important. I said "mummy has a baby in her tummy" E immediately said "I knew it, I just knew it, your tummy is so fat". Ahhhh, thanks darling!
E immediately started talking about where the baby was going to sleep and what fun they were going to have and how happy she was that they were going to have a sister. She asked when the baby was going to come home.
The next part was very difficult to tell. We told them that the baby was sick and we hoped she would be coming home to live for us but that sometimes babies are so sick that they can't. I think that bit went over her head, as very quickly she said I hope the baby gets better soon and then started discussing what she was going to do with the baby. We prayed with them and then put them to bed. I had such a bad migraine.
My twin sister and her family is visiting with us and I am so grateful she is here with us during one of darkest weeks. She has cooked us dinner and cleaned up the house while we got the kids ready for bed.
We told them that we wanted to tell them something important. I said "mummy has a baby in her tummy" E immediately said "I knew it, I just knew it, your tummy is so fat". Ahhhh, thanks darling!
E immediately started talking about where the baby was going to sleep and what fun they were going to have and how happy she was that they were going to have a sister. She asked when the baby was going to come home.
The next part was very difficult to tell. We told them that the baby was sick and we hoped she would be coming home to live for us but that sometimes babies are so sick that they can't. I think that bit went over her head, as very quickly she said I hope the baby gets better soon and then started discussing what she was going to do with the baby. We prayed with them and then put them to bed. I had such a bad migraine.
12 weeks and 5 days - Nuchal Translucency Scan
I am 12 weeks and 5 days pregnant - almost in the second trimester. Today was the Nuchal Translucency ultrasound. It is not the usual Nuchal Translucency ultrasound many people have done in their first trimester. This scan will check the thickness but as it is looking like a Cystic Hygroma now, they need to look very carefully at our daughters heart, brain, other organs and her general well being.
I am feeling very nervous. 2 days ago at an OB appointment he told us that the Hygroma had grown dramatically. I feel like we are never given good news and it just keeps getting worse. Hearing "baby is alive and active" is reassuring for a few seconds but then you hear the bad news…again and again.
Measurements are taken and it is very obvious the Hygroma has grown. I know the woman doing the ultrasound is trying to keep a straight face and not look at me and if she did all she would see was a woman lying frozen with a terrified look on her face.
Our daughter is very much like her sister already. Stubborn she doesn't want to show us her face or front of her body. We tried all the treks to get her to move but no, she would not change position, although was incredibly active! It is hard to imagine such an active baby possibly being very, very sick.
Measurements are taken and then we are taken to wait for the specialist who wants to talk to us - I am getting used to this now! She said she has reviewed the ultrasound and is very concerned with what she can see. It is an incredibly large Cystic Hygroma that wraps around her neck and part way down her back. She tells us that it measures 9.14mm and that it looks highly "syndromic" because of the amount of fluid and how it is sitting in the babies neck. It is also very concerning that it was found so early in the pregnancy and the fact that it has rapidly grown is also a very worrying sign. Gently she said our options were to decide to terminate the pregnancy now or continue the pregnancy and possibly have CVS test done (a massive needle that it very invasive and hurts a lot) to rule out even more chromosome problems that cause rare syndromes.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/pregnancy_tests_chorionic_villus_sampling
We choose to do the CVS, because at this point, we feel that we need more answers and there is nothing else we can do at this stage. The specialist organises to do the CVS procedure that same afternoon. We have a short wait and then are taken into another room to have it done. I tell the specialist that last time when I had this done with E it had to be done twice as not enough fluid was taken the first time and I hope that doesn't happen again as it was very traumatic - well of course it did happen again! Apparently I was having a contraction while they did it the first time which made access difficult and also incredibly painful. I was screaming the place down and would much rather give birth than experience that pain. I had no idea woman had contractions when they were only 12 weeks - but apparently they do!
Anyway, I had to have it done again, so it was decided that I would take a break and both Mat and I would go and get blood taken and have a rest before going through it again and hopefully the contraction would have stopped. all through this break I sobbed and sobbed while my husband tried to comfort me. The poor pathology nurse couldn't even understand what I was saying because I was so distraught and in a lot of pain. During the wait, I messaged my closest friends and family, including my connect group from church and asked for immediate prayer. There are times when I just don't even know what to pray but I know these girls have my back and are prayer warriors. They would of dropped everything and prayed right at my moment of need. We went back in, and the contraction had stopped and had the CVS done again which while still painful, was not agonising.
After being at the ultrasound centre for a few hours now we were told results would take about 10 days. My OB's rooms are nearby so we went down to tell him about all that had unfolded. The poor women in the waiting room must have been traumatised by my hysterical crying (and bent over appearance as was cramping very badly from the CVS procedure). One of his long standing secretaries car and grabbed my hand and led me to an empty room and very soon my OB came in and got me and asked us what had happened. He rung the Ultrasound Specialist while we were there and got her to confirm what I was trying to tell him through my tears.
I am feeling very nervous. 2 days ago at an OB appointment he told us that the Hygroma had grown dramatically. I feel like we are never given good news and it just keeps getting worse. Hearing "baby is alive and active" is reassuring for a few seconds but then you hear the bad news…again and again.
Measurements are taken and it is very obvious the Hygroma has grown. I know the woman doing the ultrasound is trying to keep a straight face and not look at me and if she did all she would see was a woman lying frozen with a terrified look on her face.
Our daughter is very much like her sister already. Stubborn she doesn't want to show us her face or front of her body. We tried all the treks to get her to move but no, she would not change position, although was incredibly active! It is hard to imagine such an active baby possibly being very, very sick.
Measurements are taken and then we are taken to wait for the specialist who wants to talk to us - I am getting used to this now! She said she has reviewed the ultrasound and is very concerned with what she can see. It is an incredibly large Cystic Hygroma that wraps around her neck and part way down her back. She tells us that it measures 9.14mm and that it looks highly "syndromic" because of the amount of fluid and how it is sitting in the babies neck. It is also very concerning that it was found so early in the pregnancy and the fact that it has rapidly grown is also a very worrying sign. Gently she said our options were to decide to terminate the pregnancy now or continue the pregnancy and possibly have CVS test done (a massive needle that it very invasive and hurts a lot) to rule out even more chromosome problems that cause rare syndromes.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/pregnancy_tests_chorionic_villus_sampling
We choose to do the CVS, because at this point, we feel that we need more answers and there is nothing else we can do at this stage. The specialist organises to do the CVS procedure that same afternoon. We have a short wait and then are taken into another room to have it done. I tell the specialist that last time when I had this done with E it had to be done twice as not enough fluid was taken the first time and I hope that doesn't happen again as it was very traumatic - well of course it did happen again! Apparently I was having a contraction while they did it the first time which made access difficult and also incredibly painful. I was screaming the place down and would much rather give birth than experience that pain. I had no idea woman had contractions when they were only 12 weeks - but apparently they do!
Anyway, I had to have it done again, so it was decided that I would take a break and both Mat and I would go and get blood taken and have a rest before going through it again and hopefully the contraction would have stopped. all through this break I sobbed and sobbed while my husband tried to comfort me. The poor pathology nurse couldn't even understand what I was saying because I was so distraught and in a lot of pain. During the wait, I messaged my closest friends and family, including my connect group from church and asked for immediate prayer. There are times when I just don't even know what to pray but I know these girls have my back and are prayer warriors. They would of dropped everything and prayed right at my moment of need. We went back in, and the contraction had stopped and had the CVS done again which while still painful, was not agonising.
After being at the ultrasound centre for a few hours now we were told results would take about 10 days. My OB's rooms are nearby so we went down to tell him about all that had unfolded. The poor women in the waiting room must have been traumatised by my hysterical crying (and bent over appearance as was cramping very badly from the CVS procedure). One of his long standing secretaries car and grabbed my hand and led me to an empty room and very soon my OB came in and got me and asked us what had happened. He rung the Ultrasound Specialist while we were there and got her to confirm what I was trying to tell him through my tears.
NIPT results and Gender reveal
The results are back and the NIPT has put us at very low risk of Trisomy 13, Trisomy 18, Trisomy 21 and Turners Syndrome. Thats good news right? Well yes, it cleared us for the most common chromosome issues, and had the fluid stayed the same and not changed we were probably looking a a good outcome, but now there is a much bigger problem. The fluid has increased dramatically in a very short time and now it is looking like a cystic hygroma - a bilateral cystic hygroma which goes from both sides of her neck and part way down her back. This is not a good sign.
This is a link that explains what a cystic hygroma is in very simple terms:
http://www.healthline.com/health/cystic-hygroma#Overview1
http://www.ncbi.nlm.nih.gov/pubmed/1586333
We chose to find out if our baby was a girl or boy, as there are so many questions surrounding the pregnancy already, and we don't need another surprise there have already been too many of those. So for $500 we now know the sex and are excited that E & O will now have a little sister. I had my suspicions for weeks, as I have been dreadfully sick with morning sickness - very similar to my daughters pregnancy. With my son, I only had mild morning sickness. The only way I am functioning at the moment is by taking 2 different medications daily - one of which causes migraines which put together with a stressful situation is not pleasant.
Now we wait for a 12 week ultrasound to check for structural issues. We are scared and the prognosis is not looking good. A cystic hygroma has a far greater rate of mortality than a high nuchal fluid reading. This is now different to E's story and the problems we faced in her pregnancy. It is hard to come to terms with things because the doctors are talking about termination, which is what was talked to us about with E and she is a happy and healthy 5 year old - so many "what if's"
We are also torn whether to tell the kids or not, I don't want to put them through unnecessary pain and heartache, but I know they have a right to know about their sibling.
We are Christians and have a small army of friends and family who have been praying for us and supporting us. Without my Faith I have no idea how I would be at the moment. The only thing I can stand on at the moment is that God loves me and our tiny daughter and I have the knowledge, peace and hope that I will see my daughter again - whether it be in Heaven or on Earth - but how I wish it will be on Earth!
This is a link that explains what a cystic hygroma is in very simple terms:
http://www.healthline.com/health/cystic-hygroma#Overview1
http://www.ncbi.nlm.nih.gov/pubmed/1586333
We chose to find out if our baby was a girl or boy, as there are so many questions surrounding the pregnancy already, and we don't need another surprise there have already been too many of those. So for $500 we now know the sex and are excited that E & O will now have a little sister. I had my suspicions for weeks, as I have been dreadfully sick with morning sickness - very similar to my daughters pregnancy. With my son, I only had mild morning sickness. The only way I am functioning at the moment is by taking 2 different medications daily - one of which causes migraines which put together with a stressful situation is not pleasant.
Now we wait for a 12 week ultrasound to check for structural issues. We are scared and the prognosis is not looking good. A cystic hygroma has a far greater rate of mortality than a high nuchal fluid reading. This is now different to E's story and the problems we faced in her pregnancy. It is hard to come to terms with things because the doctors are talking about termination, which is what was talked to us about with E and she is a happy and healthy 5 year old - so many "what if's"
We are also torn whether to tell the kids or not, I don't want to put them through unnecessary pain and heartache, but I know they have a right to know about their sibling.
We are Christians and have a small army of friends and family who have been praying for us and supporting us. Without my Faith I have no idea how I would be at the moment. The only thing I can stand on at the moment is that God loves me and our tiny daughter and I have the knowledge, peace and hope that I will see my daughter again - whether it be in Heaven or on Earth - but how I wish it will be on Earth!
1st OB appoint - 10 weeks
I saw my OB today. Instead of talking excitedly that the fertility treatment has finally worked and we are pregnant with number 3, we are discussing the ultrasound 3 days prior. We talked about my first pregnancy with E and that it all turned out well, he told me of 1 case he knew of where the family had had a good outcome twice when they were faced with similar circumstances, but just how rare it was that I was facing this twice - I mean the guy has delivered over 8000 babies over many years and he's saying its rare!
We had a laugh saying it must just be my family that have thick necks when in utero and then discussed doing the NIPT (Non invasive prenatal testing). This blood test was not available 6 years ago when I was pregnant and is new technology where my blood would be sent to California, USA to be tested in a lab which would look at the DNA and most common chromosome issues. After being traumatised by invasive CVS testing last time, I was much more keen for this test to rule some things out, including 2 fatal conditions. He sent me upstairs to get the blood taken and I paid a hefty price tag of $500 to have this test done. Apparently the cost has come down in the last couple of years - no medicare rebate as its an American test. It will be about 10 days until we hear results. Meanwhile we are hoping and praying things don't get worse.
We had a laugh saying it must just be my family that have thick necks when in utero and then discussed doing the NIPT (Non invasive prenatal testing). This blood test was not available 6 years ago when I was pregnant and is new technology where my blood would be sent to California, USA to be tested in a lab which would look at the DNA and most common chromosome issues. After being traumatised by invasive CVS testing last time, I was much more keen for this test to rule some things out, including 2 fatal conditions. He sent me upstairs to get the blood taken and I paid a hefty price tag of $500 to have this test done. Apparently the cost has come down in the last couple of years - no medicare rebate as its an American test. It will be about 10 days until we hear results. Meanwhile we are hoping and praying things don't get worse.
9 weeks 5 days
I had an ultrasound today and the baby is 9 weeks and 5 days old. Due the 4th September 2015. It always amazes me how active they are even at this early stage. The reason for this scan was purely I just wanted a sneak park of the baby. The GP I went to gave me a referral for a dating scan and I booked the appointment for now as it was halfway between the Fertility clinic ultrasound and my first appointment with my OB.
The woman doing the ultrasound asked me why I was having this ultrasound if I already knew my dates, and I told her my reasons, including the tiny bit of me that had a fear for another missed miscarriage and also the fact that we weren't planning on having the 12 weeks nuchal translucency ultrasound as I knew how inaccurate it can be, since my daughter was born healthy after being placed at high risk because of a high nuchal measurement. She told us we should still have the scan, which I thought was a bit rude at the time, but now I realise its probably because she was concerned with what she saw.
I asked her point blank about what looked to my like high nuchal fluid saying "that looks like my daughter, she had high nuchal fluid and it looks the same. My son didn't have it and I had a lot of ultrasounds that showed the same marker". She said it wasn't and was all normal. I guess she wasn't allowed to say it did look concerning, but it was annoying because I knew that knew what I was talking about!
Needless to say, I felt pretty relaxed after the scan - as it wasn't like the specialist came flying into the room with my daughters ultrasound, so surely everything looked ok and we could enjoy a normal pregnancy.
That night we were planning on telling the kids the exciting news. I was just bursting for Mat to get home so we could show them the pictures and DVD of their sibling. About 15 minutes before Mat got home from work, I got a call from the ultrasound place. The specialist introduced herself - I knew it wasn't good - doctors don't call to say "congrats on your healthy baby". I said to her "please don't tell me there is bad news, although I know that is why you are ringing". She said I'm very sorry but this baby looks very similar to your first daughter, I have her notes from the file out too. This baby has an increased nuchal fluid and you need to talk to your obstetrician asap, I have already called him and let him know whats going on." I asked her if it was a bigger measurement than E's and she said "a little bit higher". I told her I thought I saw it on the ultrasound too. Im so shocked we are going to go through this journey again. It was terrifying last time and was not an enjoyable pregnancy as was filled with the unknown and fear. I had some hope though, as Ella turned out fine after everything we were warned about.
I hung up and got an appointment with my OB in 2 days time. I HATE WAITING! Everything about a high risk pregnancy is the waiting… hard enough for a patient person, which I am not.
The woman doing the ultrasound asked me why I was having this ultrasound if I already knew my dates, and I told her my reasons, including the tiny bit of me that had a fear for another missed miscarriage and also the fact that we weren't planning on having the 12 weeks nuchal translucency ultrasound as I knew how inaccurate it can be, since my daughter was born healthy after being placed at high risk because of a high nuchal measurement. She told us we should still have the scan, which I thought was a bit rude at the time, but now I realise its probably because she was concerned with what she saw.
I asked her point blank about what looked to my like high nuchal fluid saying "that looks like my daughter, she had high nuchal fluid and it looks the same. My son didn't have it and I had a lot of ultrasounds that showed the same marker". She said it wasn't and was all normal. I guess she wasn't allowed to say it did look concerning, but it was annoying because I knew that knew what I was talking about!
Needless to say, I felt pretty relaxed after the scan - as it wasn't like the specialist came flying into the room with my daughters ultrasound, so surely everything looked ok and we could enjoy a normal pregnancy.
That night we were planning on telling the kids the exciting news. I was just bursting for Mat to get home so we could show them the pictures and DVD of their sibling. About 15 minutes before Mat got home from work, I got a call from the ultrasound place. The specialist introduced herself - I knew it wasn't good - doctors don't call to say "congrats on your healthy baby". I said to her "please don't tell me there is bad news, although I know that is why you are ringing". She said I'm very sorry but this baby looks very similar to your first daughter, I have her notes from the file out too. This baby has an increased nuchal fluid and you need to talk to your obstetrician asap, I have already called him and let him know whats going on." I asked her if it was a bigger measurement than E's and she said "a little bit higher". I told her I thought I saw it on the ultrasound too. Im so shocked we are going to go through this journey again. It was terrifying last time and was not an enjoyable pregnancy as was filled with the unknown and fear. I had some hope though, as Ella turned out fine after everything we were warned about.
I hung up and got an appointment with my OB in 2 days time. I HATE WAITING! Everything about a high risk pregnancy is the waiting… hard enough for a patient person, which I am not.
Wednesday, 4 March 2015
Pregnant - Finally...
Its a few days before Christmas and I see the very faint hint of a line on a HPT. Really? Its finally happened? It has been a bit of a journey to get here, a year of fertility treatment, including fertility drugs and needles. We were on our last cycle before a rethink and break and after a long cycle that looked like it was certain NOT to work - it did! Of course, the fertility clinic, my GP etc are all closed over the holidays, so a HPT will have to do at this stage :)
Christmas and New Years is over. I am excited that 2015 is going to be the year of adding to our growing family. At 7 weeks pregnant I go for an ultrasound at the fertility clinic and we are thrilled to see a tiny bean on the screen. I find ultrasounds terrifying which I know sounds strange to many people as they feel excited, but I have a history of receiving not good news in previous ultrasounds - miscarriage, high nuchal fluid in my 1st daughters pregnancy and then possible kidney issues in my sons pregnancy. However, there is a baby in the right spot and I start to feel excited about pregnancy with a few reservations of course due to my history.
I ring to make an appointment with my favourite Obstetrician. They give me an appointment when I am almost 12 weeks. I feel a bit apprehensive about the wait, but hey, I have 2 healthy children, why should I need to see him any earlier, theres a baby growing right now in my uterus!
Christmas and New Years is over. I am excited that 2015 is going to be the year of adding to our growing family. At 7 weeks pregnant I go for an ultrasound at the fertility clinic and we are thrilled to see a tiny bean on the screen. I find ultrasounds terrifying which I know sounds strange to many people as they feel excited, but I have a history of receiving not good news in previous ultrasounds - miscarriage, high nuchal fluid in my 1st daughters pregnancy and then possible kidney issues in my sons pregnancy. However, there is a baby in the right spot and I start to feel excited about pregnancy with a few reservations of course due to my history.
I ring to make an appointment with my favourite Obstetrician. They give me an appointment when I am almost 12 weeks. I feel a bit apprehensive about the wait, but hey, I have 2 healthy children, why should I need to see him any earlier, theres a baby growing right now in my uterus!
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