Tiny baby hat and blanket donation to brighten my day

I was really struggling today at work. I was on the verge of tears for most of the day and I had already started my day in tears. On a break I discovered that someone had put some precious knitted hats and crochet blankets in my pigeon hole. No note of who they were made by, but I had my suspicions and went looking and found the beautiful lady who made these for me to donate in Ava's name. 

She wanted to be anonymous, but I wanted to thank her as I am so grateful to her for the time she has spent on these. It was nice to share how big Ava's head circumference was as most people just can't picture a baby so tiny, yet so perfectly formed. The second smallest hat in the picture would of fitted my Ava's tiny head. 

A grieving family is going to be able to put a hat on their baby and wrap them in a blanket and know that someone cares enough about them and their baby to give them a gift. I know it will mean the world to them. 

Thankyou so much to all the people who have volunteered and also supported Ava Grace - No footprint too small through donations of fabric, wool, materials, money and gift cards. 

Fertility Week 2015 - Our Story

While watching the news tonight I found out that this coming week (September 1st-7th 2015) is fertility week. They featured and interviewed the first baby born through IVF in 1980.

Why am I talking about fertility on this blog? Well infertility has also featured in our journey to becoming parents. Our story is nothing compared to so many woman (and men) who have and continue to battle their way through the heartbreak of infertility and what it brings. 

Our journey starts in 2007 when I was first diagnosed with a condition called ENDOMETRIOSIS. 

I had suffered from this painful condition since I was a teenager. Doctors would fob me off saying how common it was for women to have painful periods and that my cycles would sort themselves out in a few years. That didn't happen. I was in agony and now I have had children and gone through labour I can honestly say the pain that women with endometriosis go through is not unlike contractions women have when giving birth. I would be curled up in the foetal position screaming in pain for at least 1-3 days per month. Being the researcher I am, of course I self diagnosed myself (and my identical twin sister) early on with this condition. However doctors weren't so sure because why would they believe a 16 year old? Both my sister and I were given many different pain medications to try, none of which worked and most had terrible side effects which were at times worse than the pain itself. 

Finally at the age of 18 I got up the courage to demand a referral to a gynocologist. She listened to my story and immediately said it sounded like I had endometriosis. The relief at having someone acknowledge the pain I had been going through for years! She booked me in for a procedure called a 

laparoscopy which is done while you are under a general anaesthetic. When I woke up she said she 

couldn't find evidence of endometriosis, so I had something called dysmenorrhea - which basically means "painful periods" and gave me a script for strong pain killers. I remember being really disheartened as there had to be a reason why myself and my sister were crippled with pain each month. I mean, surely we couldn't just be two people who just had low pain thresholds? I knew that vomiting, fainting, back pain, IBS and contraction like pain wasn't normal!

Because my sister and I are identical she didn't have a laparoscopy performed by the same gynocologist because she said the chances were low that she would find it in her given we had similar symptoms. 

Years later, my sister, sick of still suffering, saw a different gynocologist and one that came highly recommended. He performed a laparoscopy and found it and removed it! I knew that there was no way that her symptoms could be due to endo and mine due to "nothing" so got myself an appointment 

with this fabulous gynocologist who would later become my obstetrician. During my laparoscopy he 

found endometriosis on the outside of my uterus on both sides, and removed it. 

The change was huge - both pain and symptom wise, and I can tell you it was very upsetting that it hadn't been found and dealt with years earlier. 

This brings me to November 2007. After the removal of endometriosis we were advised that if we wanted children that we should not put it off for long, even though I was only 24 at the time. Endometriosis is commonly associated with infertility as can cause blockages and damage. 

We waited a few months and proceeded to try to conceive (TTC). I always thought it would be endo that would create issues when conceiving but it wasn't to be the issue. I was quickly diagnosed with another and very common fertility problem - Polycystic Ovarian Syndrome (PCOS). 

PCOS affects approximately 1 in 5 women. Some will have no trouble falling pregnant and others will have great difficulty. I am lucky that my gynocologist is very proactive, after 6 months of TTC 

and lots of tests it was clear I wasn't ovulating and when I was it was very irregular - not helpful when trying to have a baby! After lots of discussion we were told about the fertility drug "clomid", which would hopefully make my ovulate therefore giving me a much greater chance of conceiving! 

Before starting this drug I needed to have a bloodtest to see where I was in my cycle. To our  surprise we found out I was pregnant! We were overjoyed but that was short lived as I went on to suffer a missed miscarriage which resulted in a D&C at 10 weeks. 

Months later as my PCOS was in full swing I started my first cycle of clomid. We were very fortunate  that I fell the first cycle on it and 9 months later after a horrifically scary pregnancy that started off very similar to Ava's, Ella was born screaming! When we started TTC a sibling for Ella I told myself I wasn't going to stress myself out again, but it's hard when you have a 3 month cycle with no hope of conceiving and can see the months stretching out before you, where a fertile person will have at least 

12 cycles in a year, I was only having a couple and some of those were annovulatory anyway. I saw my gynocologist after about 5 months and started clomid and conceived on the 2nd cycle with a higher dosage. 9 months later with a much smoother pregnancy thought not without its scares, Oliver was born!

We knew (well I knew, my husband may have needed some more convincing) that our family wasn't complete. My PCOS was quite out of control for awhile making weight loss extremely difficult, but once I was put on the right pill it began falling off with exercise. It was also at this time that after having some tests done it was thought by doctors that I was possibly about to start early menopause - scary when your only in your 20's! My egg reserve was very low and hormones out of control. After more tests and talking to my specialist it was recommended that if there were to be any more babies now was the time we needed to try and make it happen, so try we did! Clomid was used month after month, dosages put higher and still no success, we  were referred on to a fertility specialist for more help, had needles added to the clomid  cycles  (pregnyl) and tried some more. We were on the last cycle that the fertility specialist would allow before taking a break for more invasive tests to be done when I fell pregnant with Ava - on a cycle that was looking extremely bleak with hormones not cooperating and a second lot of clomid added in later in the cycle. 

I remember feeling so glad that our journey with infertility was over now I was pregnant with our 3rd child. I wanted to put that all behind us. 

When you are staring down the barrel of two different conditions (endo and PCOS) both of which cause fertility issues and then also given the label of unexplained infertility later on, it can take  the joy out of making babies! We are incredibly fortunate to be able to access incredible specialists and the associated costs that come with fertility treatment. My fertility is just another part of our story, our journey to creating our very much wanted family which I even spoke about at our wedding 10 years ago in my vows. 

My heart goes out to women who are childless, and not through choice. The loss that they feel is huge and should not be underestimated. I won't even to pretend to understand their pain. My journey pales into insignificance when next to these courageous women and the decisions that they must make and face. 

I've had people say " why try so hard? You obviously weren't meant to have babies, just be thankful for the ones you have". 

1. Easy for them to say. 

2. They are so worth it.

This is the longest post I have ever written, and deeply personal. However, if it helps encourage someone else to continue to push for answers, or  ask for treatment then  it will be worth it. 

Ella Georgia was worth it. 

Oliver Noah was worth it.

Ava Grace was definitely worth it. 

 

I prayed for this child and the lord has granted me what I asked of him. 1 Samuel 1:27 (NIV)

#fertilityweek #breakingthesilence #endometriosis #pcos 

yourfertility.org.au 

Facebook

When Ava Grace died I wanted Ava's life to be acknowledged. I wanted people to know that her life counted even if her time on earth alive was spent growing inside of me. I have two Facebook pages and have provided the links below.

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

This FB page I share links to my blog posts and also share my thoughts on what other things I am learning through being a part of the baby loss community that no one wants or chooses to be in. I want to raise awareness, talk about and acknowledge the babies that are gone too soon. Miscarriage, stillbirth, neonatal loss happen so frequently and these families need a voice.

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

This Facebook page was set up for people who want to volunteer or support the work I am doing to create blankets, clothes, hats and nappies for these precious tiny babies. These are then donated to my local hospital. I am hoping to expand and be able to send the packages to hospitals Australia wide one day. When Ava was born the midwives treated us and Ava with so much respect. Having her dressed went a long way in giving her the dignity she deserved. It meant so much to us that people had taken the time to create these tiny clothes for our daughter and to be provided with blankets to wrap her in and cherish. 

If you would like to join and follow these pages please do! I would love you to join my family on
this journey as we try to honour our daughter Ava Grace Johnson. 

If you would like to contact me you can through either of my Facebook pages or by email ejohnson4811@gmail.com

I'd love to hear your babies story of you want to share it with me. xxx

And bang... i fall apart

 

Shared from The Mariposa Trust (sayinggoodbye.org) with permission.

The statement above says it all...

This is definitely how I feel at the moment. I wonder if people can see through the facade?

I haven't cried very much in the past couple of months, but I have certainly made up for it the past few days. It really is true that when grief hits you, it really hits and their is nothing you can do about 

Watching my daughters performance at school today, it hit me that in 6 years time Ava would have been in kindergarten doing her first performance. I'd be well into my maternity leave right now. I would be 39 weeks pregnant tomorrow and I probably would have been holding her in my arms right now.

People say to me to "stop thinking of the what if's" because she isn't here so these things couldn't happen anyway, but for a grieving mothers and fathers the "what if's are very real and present in our lives. It's something we need to process and work our way through. I know when Ava would have been starting school and it's not something a parent can forget for their living child, so it's definetly not something a bereaved parent will forget.

Just the thought of life moving on without her, changing all our plans for our family, seeing the empty spare room every time I walk down the hallway, seeing Ella dressing her dolls in her old baby clothes that had been brought out for Ava. Having cots, highchairs and strollers packed away not knowing if they will ever be used again in this house. There are no more babies in this house, my baby boy is now an independent little man at almost 3 and a half. 

I always knew her due date would be a hard day. I just didn't realise the the lead up to it would be so painful.

So when people ask me how I am and I say I'm fine, I'm not because I simply can't describe the pain, and if I started to tell you how I really felt, how the pain really felt of not holding your baby ever again then I probably would never stop. There's nothing that anyone can even say that will make me feel better or take the pain away but thankyou for trying anyway.  

The pain is raw.

The pain is deep. 

The pain is real. 

Lisa's story

After my first miscarriage in 2008, I felt very alone. The comments I had after it happened were not very encouraging and it felt like everyone's answer was to "just try again", which is so unhelpful to someone who has just lost their baby - it's not a new baby they want, it's the baby that they lost! You can't replace your living children, so replacing one pregnancy with another and expecting the person to be able to pretend it never happened is wrong. Of course, many women do go on to conceive again quickly after their loss and the reality is a lot of those babies would not have been here had they not lost their first. My daughter Ella is one of them! The first time I was pregnant I was due May 21st 2009 and my daughter Ella was due October 12th the same year. I will be forever grateful for my Ella, and the fact that with the help of fertility treatment I didn't have to wait long for my rainbow! Being pregnant again gave me something to look forward too, but it also didn't take away from the pain of missing that baby that stopped developing very early on. Anxiety was high for the entire pregnancy, due to having the innocence of pregnancy ripped from beneath me at 8.5 weeks, as well as   other complications which is another story in itself!

A few years ago a friend of mine wrote a blog post about her miscarriages and I know it really impacted me at the time. I was glad that someone was talking about babyloss and not hiding it away as so many of us do because of the reactions we fear and sadly often receive. I really identified with the feelings she shared.

With Lisa's permission I'd like to share her story here with you:

http://mummysundeservedblessings.com/2011/08/my-story-dealing-with-miscarriage-and-fears-of-infertility.html

BOH Ball - Ava's name on the big screen

Bears of Hope Ball 2015

My husband Mat and I attended the Bears of Hope ball last night. It was amazing to be surrounded by so many men and women celebrating their babies.

 

It was made even more special because I won the competition they were running. We had accommodation provided at the lovely Quest Apartments (Homebush) and my hair and makeup done too! I booked the tickets for the ball back on March, today I looked up the exact date and it was only 9 days after Ava died. I must have known at the time that we would need something to look forward to in the next few months. I remember feeling such an overwhelming need to have Ava's life acknowledged and the BOH ball did an excellent job of this! 

The room was of course full of bereaved parents, grandparents, aunties, uncles, friends and supporters. I have wondered what the mood would be like for months. Would it be full of a room of crying parents? Because let's face it, I'd understand if it were! Instead it felt like (and it was) a celebration of all the babies gone too soon. Of course there were tears, we all miss our babies terribly and wish we were celebrating their birthdays and watching them grow up, but overwhelmingly I saw alot of smiles of proud parents! 

It was lovely putting faces to names and names to babies meeting people for the first time that I have only got to know online in my support groups. I kept thinking how amazing it is that I can remember the stories and pictures of so many precious babies now - the same babies who are in heaven playing with Ava Grace right now! 

My brother and sister in law came to support us which was really lovely, and I also want to acknowledge their two losses before going on to have my gorgeous neice Harriet! 

Bears of Hope do an incredible job of acknowledging the loss of our children through the many ways they provide support and the advocacy and education they do in breaking down the barriers and talking about miscarriage, stillbirth and neonatal loss. 

One way our babies are acknowledged at the BOH ball is the candle lighting ceremony. On each table are candles and matches and we lit these rembering our babies. As we were doing this a presentation of our babies names were displayed on big screens. I was so taken and overwhelmed by my candle I was lighting for Ava that I missed seeing Ava's name because she was right at the start! 

I am blessed I got given this photo of her name afterwards though! 

There is something powerful that happens when we see our babies names. It gives life to those that are not here now. It is a visual demonstration that our babies were here, even for just a short time, whether just in the womb of minutes in the arms of their parents. It acknowledges those parents who are left with empty arms and who don't get to hear the words mummy and daddy daily. 

Thankyou Bears of Hope for creating such a lovely evening. I look forward to attending this event and seeing Ava's name up in lights again! 

Daffodil's blooming

Within a few days of Ava passing away some of my best friends in my mothers group came and brought me a box full of dinners in take away containers for my family - which was so lovely because I could barely string a sentence together, let alone think about what to cook for dinner and I definitely was not ready to go out into the world to go shopping! My church was also very supportive with providing meals too. I think all up we didn't need to cook for about 6-8 weeks! 

It was at the same time that my friend gave the kids and us a packet of daffodil bulbs. She said if we planted them they would bloom around the time that Ava was originally due. She was right!

Yesterday as we left home to go to the Bears of Hope Ball Mat noticed that the first daffodil was about to bloom! 

It felt very bittersweet, as Ava's due date approaches. She quite possibly would have already been born in the last few days as my daughter was born at 38+2 and my son at 39.

When we arrived home this morning , the first thing we noticed was the daffodil was in full bloom. 

Was nice to see, and to know our girl is always with us, even though she feels so far away. 

International Day of Hope - August 19th

"August 19th is about coming together as a whole community to openly speak about these children and celebrating their short lives" - Carly Marie 

https://www.facebook.com/CarlyMarieProjectHeal

Please don't ask me 'that' question

Last week I was caught off guard. The dreaded question was asked for the first time since losing Ava.

Person: "I've been told your pregnant, are you pregnant? Such exciting news"
Me: "no, I'm not pregnant"
Person: "are you sure?"
Me: "yes, I am sure"

I am not sure why I was asked if I was pregnant again, because I'm not. It's also not a question that someone should be asking anyone, let alone someone who knows what you have lost and how recently you have lost. If and when a person falls pregnant, it is up to them and their partner to decide when and who they tell that they are expecting a baby.

I guess I shouldn't be shocked, I mean I have had it asked before (thought it to be a bit rude) but brushed it off nevertheless. However, this can be such a triggering question. Think about the woman who is currently battling infertility. How would that question make that person feel? Think about how it makes a person feel who is currently going through a miscarriage, and the women who have lost their baby they birthed recently. You don't know how long it takes for families to receive autopsy results and genetic testing and counselling. You don't realise how long it can take some women to recover physically and emotionally from their babies birth.

People don't know other people's stories. They don't know how emotionally triggering that question can be. A year ago I could have shook the question off (albeit a bit distressed as I was already going through fertility treatment at that stage) but today, a few months on while I'm still deep in my grief - it cuts like a knife and it literally took my breathe away. I'm actually surprised I was able to answer. I'm very thankful I had a friend standing next to me who I know was ready to catch me if I fell.

So, next time you hear some gossip going around, please don't share it around. Please don't assume that a newly bereaved mother is going to be jumping for joy if and when she does fall pregnant again. Please don't ask her "if she's sure" and if you do, please apologise and walk away. The pain inflicted is huge. The pain is something you don't understand and if you did, you wouldn't be asking...

Countdown to Ava's due date

This Friday, the 14th August, it will be my 32nd Birthday. It also will mark when I should have been 37 weeks pregnant. But instead I am no longer pregnant and Ava has been gone almost 5 months.

Where has that time gone? It feels like yesterday that I found out I was finally pregnant!

These next few weeks will be hard. I always thought Ava would be an August baby as both of our other children were born the month before they were actually due, at 38+2 and 39 weeks.

So the fact that I should be 37 weeks pregnant, huge and at the stage of waddling, on maternity leave and nesting leaves me feeling like I just want to cry - all the time - yet I don't. I feel like I'm in a constant state of tears sitting behind my eyes, just waiting to spill over, yet they don't come every hour of every day like they did that first month she was gone. The lump that I used to feel in my throat has returned and I can feel my anxiety rising.

I don't know why Ava's due date is such a milestone that I am both looking forward to but also not looking forward too. In one way it will be a date I can put behind me, but then when the time does pass, there won't be any more milestones related to my pregnancy with her. There will be other milestones related to her but not related to my pregnancy. We will have our first Christmas coming up without her (which will have the reminder that I felt I got my Christmas wish when I first got a positive pregnancy test on Christmas) and then before I know it, her first birthday will be here.

It will be hard celebrating my birthday when I won't be anticipating my baby arriving any day. I have so much to be thankful for - so before you say it, yes I know I have plenty to celebrate, but until you have lost a child please don't tell me to be thankful for the two children I already have and move on from mourning our loss because I am sure you couldn't choose what child you could give back. I say this comment only because it is what I have had said to me most of all since losing Ava. So, when  you see me crying this month - or not crying because I've gotten very good at putting my mask on, just let me be. August is hard and it's just getting harder as the days roll over. Maybe I'll feel better in September? Probably not though. I'm doing the best I can... I miss my Ava Grace.

Ava's sunset name in the sand...

I ordered this photo a few months ago and have been eagerly awaiting it. I first heard about the work Carly Marie does years ago after a friends daughter passed away. What she does is amazing and has grown over the years. So many grieving families have been comforted by what she does through her creative heart. I love how she acknowledges these babies gone too soon. 

Ava's sunset photo is unique and this is hers, the photographer takes 1 photograph for the baby who's name she writes in the sand. The beach it is taken at is in Perth Western Australia, so over the other side of he country from where we are from. 

My plan is too print a large copy of this photo to hang in our home, for everyone to see our girls name. 

http://theseashoreofremembrance.blogspot.com.au/2012/06/gallery.html?m=1