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Sunday, 19 February 2017

Traumatised - again

A rainbow baby pregnancy is always going to be scary. It is a mixture of complete joy mixed with fear. For those who decide to conceive again after loss you have hope that maybe things will turn out differently this time, surely it can't happen again. Unfortunately and heartbreakingly it DOES happen again, to those who have already lost before which just seems so incredibly cruel.

So with my little bundle of hope (mixed with fear) I had a few early ultrasounds. The first to check I didn't have an ectopic pregnancy (based on my history) then there was another ultrasound for the IVF clinic to confirm a heartbeat (we could see but not hear). Then another to hear the heartbeat. We saw the geneticist and genetic counsellor who said they weren't anticipating any issues or a repeat of what happened to Ava but because of how anxious I was and based on my history they recommended serial scanning from early on in the pregnancy and hopefully once I saw early on that there was not high nuchal fluid/cystic hygroma I would be able to relax (a little).

I saw my obstetrician who always does a quick ultrasound in his office at every appointment. It was genuinely nice to be back under the care of my obstetrician/gynecologist who I have now been seeing the last 10 years. All looked good on the ultrasound and of course I am on the look out for extra nuchal fluid, but it is too early to see it. A week later I am back and relieved to not see any extra fluid, but still aware its probably too early.

At 9 weeks and 5 days I am back at my Obstetricians office and he puts the ultrasound probe on me. As soon as the picture comes up on the screen it was immediately obvious what we both could see - a very defined spot of nuchal fluid. I wasn't even 10 weeks gestation. It wasn't even a nuchal translucency scan. I started to shake, cry, spit out words pleading with him to tell me it wasn't what I knew it was, but he knew as well as I did what we were seeing and he wouldn't ever lie to me, though at the same time was trying to calm me.

I had two stories that started in exactly the same way. One of them ended in the fullterm birth of a healthy baby girl Ella Georgia who is now 7 after a scary pregnancy. I also had a traumatic and devastating story of our tiny baby girl Ava Grace that was very fresh in my mind. As positive as I and others had been that Ava would be born healthy just as Ella was, that wasn't the case, so no amount of "thinking positive" would save this baby if their fate was already decided and their lymphatic and vascular system was just not going to develop.

TRAUMATISED ALL OVER AGAIN.

I felt like I was looking in on someone else's nightmare. This was my greatest fear. If I had been told something else was wrong I probably would have taken the news better than I did at hearing the same thing had happened again. Physically my body was under attack. I had been very well up until this point but suddenly had morning sickness rear its head and my blood pressure shot up causing horrible symptoms. My heart was constantly racing and I was nauseated constantly. I was on the verge of tears at all times and had nightmares and very disturbed sleep. I felt like I could faint at any moment which was really unpleasant and downright scary. As much as I felt incredibly close to the situation I also felt very distant, I guess as a way to try and protect myself of the pain that I new was very possibly coming.

I was unable to do anything with the Ava Grace No Footprint Too Small donations that were in Ava's room/spare room/sewing room/future baby's room. Looking at each knitted gown just made my mind go to a place of having to choose an outfit for this baby that I was carrying that I still didn't know would live or die. It was incredibly painful. Was Ava Grace No Footprint Too Small going to have a name change in the future to fit a siblings name?

There was nothing we could do but wait. So we waited and had more ultrasounds. I decided to get the genesyte test which tests for a few of the common chromosome issues - when you have absolutely no control over the situation just doing something felt better than doing nothing, and so I went for the blood test (which would also tell us the gender).

The bloodtest was marked as urgent but of course there were delays that had me on the phone to the company that collects the blood yelling down the phone like a crazy woman as it just added to my torture. We were supposed to get our results at an appointment with our obstetrician but this didn't happen because of the delays. This meant that I received a phone call the following day while I was by myself when I had really wanted my husband to be with me. The results were fine and this is when we found out we were having a sweet little boy. However I had no idea what this phone call would do to my built up emotions! I started crying uncontrollably and could not stop. I knew that this test was likely not to give us any answers, but it really hit me hard and I had to go home from work.

Finding out the gender was important for bonding for not only my husband and myself but our young children. When you lose a baby, the gender of your rainbow baby can become a much bigger issue than you ever thought imaginable. Of course all you want is to have a healthy baby but I am also going to be honest and share that finding out that we would never get another glimpse of what a baby daughter would look like was hard.

I have a really wonderful obstetrician who was happy for me to see him as often as possible and every time I do see him he does an ultrasound. Week after week the fluid kept increasing which just increased my anxiety. My blood pressure was high and I felt constantly sick and like I could not breathe properly. Stress does terrible things to your body! I was also having ultrasounds at a specialist ultrasound centre too where our baby and their organs were looked at very closely and measurements taken of fluid.

During this time I was in contact with the genetic counsellors who were very supportive and helpful to debrief and ask questions. I was offered CVS testing (again) and after talking it through, praying about it we declined having invasive testing again as it was very unlikely to show anything wrong, based on our history. So we waited.

We waited some more.

At an appointment with our obstetrician he said he thought the fluid was less. I couldnt allow myself to get my hopes up as I knew this was at an absolutely critical time for the lymphatic system to kick in. I knew from everything I had read and be told that 14 weeks was a crucial time. I had an ultrasound at the specialist centre a few days later which confirmed the fluid was now resolving!
Praise Jesus! This is what we needed to see and I had instant relief.

In saying all of this, it is important to remember that just because high nuchal fluid resolves it doesn't mean that you are having a healthy baby now. However it was looking more and more likely that our baby DID NOT have lymphatic vascular malformation like Ava did. High nuchal fluid that has resolved means that it was an indicator that something may be wrong. In our first daughter Ella's case there was nothing wrong and she was born healthy after a very stressful pregnancy filled with the unknown. In this babies case so far he was looking good but he needed to be closely watched so my frequent appointments became a little less frequent. An early and detailed morphology scan was done and then a follow up scan 4 weeks later was performed too. A cardiac scan is needed in these cases as high nuchal fluid can be an indicator of a heart defect (small or severe). Earlier on when the heart was being looked at it was leaning at more of an angle than it should have which had raised the question of him perhaps having something wrong with his heart.

I am very happy to say that the cardiac scan was done last week at 26 weeks gestation and his heart looked very good. He looks to be a healthy baby which was so lovely and reassuring to see.

We still have a few months until he is born, with more ultrasounds and checks to come but I now have more faith that we may be bringing home a healthy baby - this is something that just a few months ago I thought would not be happening, I thought we would be bringing home another tiny urn to sit with Ava's, another baby who had an unformed lymphatic system not compatible with life.

I am almost 27 weeks pregnant and soon into the third trimester. My obstetrician commented the other day that this seems like the longest pregnancy and I said I couldn't agree more. The anxiety associated with pregnancy after loss is not to be underestimated and is difficult to put into words.
I don't know why we have been faced with another difficult pregnancy which has had so many challenges so early on again. It just joins my long list of of "why" questions.

This little boy is so loved and really is a miracle in so many ways. I had a friend once tell me that we have fought hard for every single one of our children and all I can say is yes, we have fought for very one of them. They have all been worth it.

Early on in this pregnancy I found this song. I sang, cried, prayed and listened to this song over and over again and it certainly blessed me. The storm is not over yet but we are walking through it one minute, one day at a time.

Praise you in the storm  - Casting Crowns
https://www.youtube.com/watch?v=L5bLvVjJ4MA




Friday, 20 January 2017

IVF

TTC after loss brings about a whole new range of emotions to deal with and when infertility is added on top of this, it can seem insurmountable and can be incredibly painful. The loss of our Ava Grace and the trauma I was still feeling almost 18 months later was very raw. Deciding to add to your family is a difficult decision because you know that no baby will ever be a replacement for the child that died but there is a gaping hole that you can feel desperate to fill. In our case IVF turned out to be the path we walked.

The path to IVF can be very daunting and it took quite some time before we took that step. It was definitely the right one though and was nowhere near as hard as I was expecting, I think because I was so used to Fertility Clinics procedures after undertaking 17 assisted conception cycles (also known as ovulation induction) I was pretty much swapping tablets for a few needles a day and of course adding in two day procedures (the first of which was not pleasant at all). I feel that these cycles helped prepare me for the IVF process.

We had changed to a much more affordable clinic for IVF as the thought of being financially ruined after every failed cycle as well as being emotionally messed with was not something we could get our heads around. I had a good friend recommend Westmead Fertility Centre and I am so glad she did, even though it meant a much further drive for treatment and appointments!

Dr Ashley Fong was very understanding and compassionate about our loss of Ava and went through our whole history which included endometriosis and adhesions which had included 3 surgeries, PCOS, AMH levels which seem to change every single time I have had that blood test done, a blocked tube due to an undiagnosed ectopic pregnancy as well as looking at my previous response to Fertility Medications, which years ago had worked well, though not when trying to conceive our Ava and longed for rainbow baby. 

I think for many women the thought of giving yourself needles can be one of the hardest parts of IVF.
I knew my husband would not be able to do them for me as he is needle phobic and goes pale just talking about them! So it was up to me! During my nurse appointment and subsequent day that needles began the nurse demonstrated to me and talked me through the process. I had decided to
schedule the needles in the morning so if I found that I really couldn't do them myself I could always go to the clinic to have a nurse do them for me. I can remember her telling me the Gonal F needle feels like a knife sliding into butter and when I did it I would have to agree! It really didn't hurt, although luveris was a much hardr needle to do and stung as well as the orgalutran. I just kept telling myself short term pain for long term gain and that I wouldn't be looking back and regretting it once I was holding our baby in my arms.

The day of egg pick up arrived and I was really sick with a heavy cold and was scared they wouldn't go ahead which would be a waste of a cycle and money down the drain. I also do not respond well to anaesthetic but the anaesthetist was amazing going over my previous reactions and what medications I had been given beforehand so she did everything she could to prevent this. My husband went off in one direction of the hospital to play his part and I went to my part of the hospital where I waited and chatted to other women waiting for their turn. I was quite surprised that all of the women there waiting looked relatively young, I know that IVF is often thought of being used for older women but it just demonstrated that infertility can affect anyone at any stage of their life, not matter how young or old or healthy or unhealthy they are!

I was taken in and met the doctor who would be doing my EPU and was put to sleep very quickly. When I woke up I was in recovery and in pain and out of it but awake enough to check my hand for how many little eggs they retrieved which was more than they had told us to expect. I was finding it difficult to breathe so had oxygen and fluids via an IV and more pain meds and was then moved to
the sitting waiting area, where not long after I fainted (for those that know me they won't be surprised). This happened within seconds of my husband arriving and me holding up my hand grinning while telling him about me little eggs). The nurses got me into a wheelchair and back to the bed where I proceeded to faint again. A little more oxygen and talk of keeping me in overnight and I came good after being violently sick ridding my body of the pain meds that I reacted to. One of the scientists came and saw us and explained that my eggs looked good and what the next stage in the process would be. I was really disappointed knowing we wouldn't be able to do a fresh transfer 5 days later due to one of my hormones rising too quickly but I understood this was also to make sure no viable embryos were lost because of it.




A phone call the following day told us how many embryos were created through the in vitro
fertilisation process which had all gone well so far. Our embryos were now going to be frozen.

My hormones are always all over the place so I had to do a medicated cycle for the Frozen Egg Transfer. I also had to wait almost two months which felt like years. Finally the time came for that cycle to start and I was taking medication that I had taken before for many times during ovulation induction cycles (letrozole). However for some unknown reason for the first time I had no response to  it, the cycle looked like it was going to be cancelled. After speaking to my FS it was decided I would start doing injections again to try and get my body responding how it should. So again I started jabbing myself and finally it worked after a very long cycle and an ultrasound where my ovary was not seen till the last minute and it was time to trigger (with another needle at midnight).

Transfer was the following week, it was a quick process and was quite amazing seeing our embryo on the screen. I was sad to hear that some of the embryos had died off in the first 2 days of the thawing process  but the one being transferred looked as good as they get and we were given an excellent chance of it sticking! Even with this information I was still very pessimistic and was talking to our FS  about how soon we could transfer again if this cycle failed. I think when you have had so much disappointment ad delays during  fertility treatment it is only natural to feel like this. The procedure was over before I knew it and we were back home again.

For those who know me, know I a man a serial tester when it comes to pregnancy tests. You are told the day that you are supposed to test with a home pregnancy test, however I cannot handle the suspense and would rather know early if I think worked or not. I had taken a trigger shot needle which is the HCG hormone so can give false positives. I tested that trigger out every day until it was gone, then after one full day of seeing no double lines, the next day was the faintest  line. I didn't really believe it so of course I did about 4 other tests  that same day with various brands of HPTD. This continued until the "official test day" where I already knew the answer! I was pregnant with our rainbow baby! This led to a mixture of feeling overjoyed and so grateful yet terrified at the same time as I knew very well that a positive pregnancy test unfortunately does not equal a live baby screaming in my arms 9 months later.

This journey didn't end here, but the IVF process seems so long ago. Now as I look back and reflect it was very difficult emotionally, as you feel like you have little control over anything (which for me is very difficult). People also have their own views on IVF and I had to ignore these and go ahead with what we felt was right for our family and in the end had such a peace about it.

A rainbow pregnancy (a term used in the babyloss community for a pregnancy after loss) is always going to be hard and full of emotions, however at the time I was completely unprepared of what was ahead in the coming weeks and months but nevertheless this is where our rainbows journey began and we are truly blessed and grateful to God for modern science and technology to help us complete our family.

A special thankyou to Dr Ashley Fong and the team at Westmead Fertility Clinic.



Monday, 9 January 2017

The grief of infertility on top of babyloss

Losing a baby can be soul destroying. Dealing and living with infertility on top of grief over the death of a very much wanted baby is something hard to describe. It is incredibly painful.

Bereaved parents don't set out to replace their baby that has died. They are well aware that no one could ever take the place of their loved one. However you are left with a burning hole that feels like it will never be filled and the truth is there will always be that hole, but perhaps that hole can be a little bit healed by the arrival of a sibling and not end on such a sad note. It was never the way it was supposed to be and I think our family will always be incomplete as Ava's absence is evident daily, but to bring some sort of completion to our family with the arrival of a healthy baby will hopefully bring some healing to all of us.

I have shared a bit on our infertility journey in previous posts, going through 17 rounds of assisted conception, 1 IVF cycle and 1 FET cycle over the past 9 years to complete our family. Without modern technology and medications it is highly likely that our family would consist of my husband and I and no children. I know to the outside world people probably assume we have had little problems forming our family where in actual fact we have had to fight for every single one of our children. The only naturally occuring pregnancy ended quickly with my first miscarriage in 2008 and that was just before starting fertility treatment. I also realise our journey has been much faster than many couples going through the maze of infertility and I am also blessed that I have always had very proactive doctors who were willing to treat me quickly with surgeries and medications and also try new treatments. I cannot even begin to imagine the pain of the loss of a dream to form a family with children and it must come at a great loss to these families, so I do want to acknowledge the absolute blessings we have been blessed with when some families were desperate to just hold one baby.

We are never guaranteed anything in this life and many times I have wondered when do you say "enough is enough" and move on and sell all the baby things. I have been told by many people that maybe I should of taken losing Ava and then subsequent infertility as a sign that we shouldn't have anymore children - which is a very hurtful statement. If that were the case many, many families would never have children or make use of modern technology to assist in creating their families.

Was it worth going through all the tests, surgeries, pain, invasive ultrasounds and bloodtests where I now have blown veins from having blood taken so frequently over years that I now have permanent scarring on my arms? Was it worth the breakdowns just thinking about sticking needles into myself and swallowing pills that would turn me into a hormonal mess? Was it worth the disappointments that came month after month after month? Was it worth the money that felt like it was being tipped down a drain and being gambled month after month?

Yes. I had hope. I had more hope than fear that our family may be completed, maybe not the way that I had imagined, but I had HOPE.

Ella Georgia was worth it.
Oliver Noah was worth it.
Ava Grace was worth it.

This baby boy is already worth it.

                                                                WORTH EVERY TEAR
                                                               




It's been awhile since I have blogged...


It's been awhile since I have blogged and I have some news. Our family is expecting a little boy to join our family in May of this year. It has been a long, hard, and at times a completely torturous road but I know it will be worth it when I am holding our baby in my arms in a few months time!

 This was our announcement picture we used, of course I included Ava, how could I not? She is very much a part of our family.

20 week bump pic


I will be sharing some more of our journey of  our "Rainbow Baby Pregnancy" (a term commonly used and identified with in the babyloss comunity) in coming blog posts.

Thursday, 13 October 2016

Ava Grace making an impact in our local community

Today a bit about our Ava was shared in our local paper, The Penrith Press. Tomorrow I will be sharing Ava Grace's story and legacy at Nepean Hospitals Pregnancy Loss Remembrance Service.
http://newslocal.newspaperdirect.com/epaper/iphone/homepage.aspx#_articleb53569b1-f5b4-4e6c-97d0-9669f9aa973b

https://www.facebook.com/permalink.php?story_fbid=674156152742303&id=456622537829000




Sharing about Ava, breaking the silence around miscarriage, stillbirth and infant loss are all things that come naturally to me now after living with this grief the past 19 months. However, it is also still incredibly painful. I hope I can keep it together tomorrow for both my talk and when my husband and  I share a song that is very meaningful to me.

I am grateful to all my family and friends who have and continue to support me and our family and also to the wonderful, generous volunteers who continue to help Ava leave her legacy through Ava Grace No Footprint Too Small.

#breakthesilence
#saytheirnames
#miscarriagestillbirthinfantlossgeneticinduction
#avagracehttp://www.dailytelegraph.com.au/newslocal/penrith-press/ceremony-to-remember-our-lost-babies/news-story/325cb0b494a0b6d92e8c0e6cce565aaa

Saturday, 10 September 2016

Infertility after loss

Infertility after loss - what sad, depressing words. Yet for many bereaved parents this is another painful part of their journey. 

Why can some people seem to fall pregnant in an instant? How do people manage to fall pregnant in consecutive years? What's with having 4 under 4? 3 "surprise" pregnancies! Why did my baby die after everything we went through to have them? These are all statements and questions that women share on the journey. 

I am fortunate that I have two healthy living children that I am eternally grateful to be able to hold in my arms and watch them grow. I also have three waiting for me in heaven, including Ava. 

I have been told the words "I'm sorry there is no heartbeat, your baby stopped growing weeks ago", I have been shattered hearing that my fertility has been reduced even further due to damage caused by an ectopic pregnancy. I have held my tiny baby Ava Grace in my arms and then had to let her go. 

I have also been on the path of infertility. 

Infertility - It's another word alongside miscarriage/stillbirth/early induction that can at times provoke an uncomfortable silence but more often that not, well meaning but utterly devasting comments that hurt to the core.

Just relax 
My husbands brothers cousins friend had to do IVF and they had triplets!
Go on a holiday, that worked for me!
You obviously aren't meant to have more children 
Why would you want another, you already have a pigeon pair (well they forget about Ava) 
More kids cost more, think yourself lucky 
Quit while your ahead 
Don't roll the dice 
You might end up with another baby who has something wrong 
What if you miscarry again
You know another baby won't replace her
Do you wish you didn't use a favourite name for her and saved it for another?
The older you get the more risks there are that your baby will have something wrong with it 
The age gap will be way too big
Are you the only one in your family that has issues falling pregnant?
Doesn't your twin sister have 3 healthy children?
You'll have a spoilt child since you will have two kids at school and another at home 
I didn't think you would want another after losing babies
I wouldn't try again if it happened to me 
Can the medications your on (for infertility) cause your baby to have birth defects? Was the medication you took to fall with Ava the reason for her birth defects?

The list goes on and on and these are just some of the things people have said to me.

Some of it is well meaning and I know they say it because they don't know what to say but I can tell you now telling someone to relax and then it will happen is a ridiculous thing to say to someone who has both physical and hormonal reasons for infertility. 

I have only ever had one natural conception where no intervention was needed and that was more than 8 years ago, so I think it's quite reasonable to assume that 8 years later that a naturally occurring pregnancy would have to be in the miracle category! 

I have completed 17 rounds of ovulation induction which is a type of assisted conception using medication. I have done 1 full IVF cycle and 1 frozen embryo transfer. I have swallowed pills,  I have given myself countless needles - at one point 3 a day, I have hundreds of blood tests to the point of now having blown veins and scars which are visible on my arms. I have endured multiple surgeries and invasive tests. I know way to much gynaecological and fertility language that only doctors and nurses should know. I understand hormone levels and what it all means. I know the disappointment of cancelled cycle after cancelled cycle and just wanting to have a chance! 

I am incredibly grateful to modern medicine and living in a country where I have access to safe and affordable treatments. A few generations ago my story would have been very different. These days specialists can do wonderful things to manipulate hormones and bypass physical issues that may be working against you. 

Infertility in itself is a lonely, soul destroying, joy crushing journey. Infertility after loss just adds another layer to your grief. I have come across way too many women who have conceived their miracle after years and years of infertility only to lose their baby in an instant. Every month that you aren't pregnant after loss just reminds you of what you have lost and who isn't here with you now. You live trying to reconcile with yourself just how much you wanted the baby who isn't here with you now, but also how desperate you are to be pregnant again and growing a life inside of you. You are fully aware that another baby is not at all a replacement. You just don't want your story to end the way that is has. Trying to conceive after loss is incredibly scary. You have to leave yourself open to possibly exposing yourself to incredible pain once again. You have to push the fear to the side to make way for a tiny speck of hope. You have to believe that through the pain and tears that it will be worth it because that's the only thing that picks you up to try again the next month. 

After all, 
Ella was worth it.
Oliver was worth it.
Ava was worth it. 

Hopefully this journey we have walked the last few years will end with holding a living baby that gets to come home and use their siblings things that have been packed away for some time now. I hope my kids get to greet a sibling that will let out a cry, not one that is silent. There are sadly many families who are parents to children they can't hold. There are also many families who go through the loss of fertility and the dream of having the family they dreamed about. 

This is just part of my story, it's not the start and it's not yet the end...



Friday, 12 August 2016

Pregnancy and Infant Loss Remembrance Day advertisement

For all bereaved families in the local and wider community, you are invited to the Pregnancy and Infant Loss Remembrance Day ceremony held at Nepean Hospital on the 14th October 2016. If you are not in the Penrith area, many hospitals and support services also hold their own Remembrance Day services. I feel honoured to have been asked to speak and share about Ava and her legacy at this years event.