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Wednesday, 18 October 2017

Update October 2017

Hi and thankyou for reading my blog. If you have found my blog because your baby has been diagnosed with a cystic hygroma/lymphatic malformation/vascular malformation or because your baby has passed away or if you are being faced with the biggest decision you will ever have to make I am so sorry to hear this.

I am two and a half years on from last holding Ava and I miss her just as much. Just because I am not blogging regularly, does not mean that I think of or miss Ava any less. The pain is still huge and some days I cant help but break down because I miss her so much and wish she was here running around as a toddler. My grief is not raw like it was 2 years ago but it is still deeply painful and has forever changed the person I was.

I have been on a break from my volunteer group Ava Grace No Footprint Too Small, however I have still been able to donate many boxes of sewn, knitted and crochet baby outfits and wraps to hospitals across Australia and also to individual families. The word is getting out about the quality of the baby things as I have had hospitals contact myself asking for more since I have originally sent out boxes to them.

I was able to attend the Pregnancy and Infant Loss Remembrance service at Nepean Hospital last week. This was a lovely service which honours all our babies gone too soon and also is a time I can connect with other bereaved parents and friends and the wonderful staff who looked after us at Nepean.

I was attending both the Bears of Hope and Pregnancy after loss support groups earlier in the year prior to having our latest addition Jesse and I hope to get back to it soon. Those support groups are what has got me to where I am in my grief and I know I am in a much better place because of the wonderful support Bears of Hope provide.

I have made some very close friends with others who I have got to know through the support groups and I treasure the times we meet to laugh and talk about ALL our children.

Having Jesse come into our family has meant I have been asked lots of times how many children I have (as often Ella is at school and Oliver preschool) or I am questioned why there is a big age gap between Jesse and the older two. These questions used to cause me to freeze. I used to dread being asked questions about how many children I have because I didn't want to leave Ava out but I also hated the awkwardness that can happen when I answer and tell them I have four children but only three are here with me. I am much better at answering questions about my family now but it still puts a tiny dagger into my sensitive heart and I still cant bear when you see people relax after they ask at what gestation she was born as if it doesn't matter so much because she was so tiny.

Having a baby means I venture into the baby clothes section often. This also means I am surrounded by pretty girls clothes. I try and avoid looking at anything that would fit Ava as it hurts (physically and emotionally!) It is hard not to imagine what Ava would look like as Jesse looks so much like Ella and Oliver and I know Ava would of too. Ava would of been old enough to do dancing this year and she would of been in her first dance concert with her older brother and sister this year which is hard not to think about. So I have learnt that the milestones (or lack of) still keep coming even when our babies have been gone for years. She is always on my mind just as my living children are. Having a rainbow baby has been very healing for my broken and shattered heart, but at the same time it makes you wonder would Ava have done that, worn that, liked that....

I still feel incredibly grateful for the time we spent with Ava and the place she now holds within our family. My children talk about her often in the most natural of ways which is really lovely to see.

Thankyou for everyones support and for reading this long and somewhat disjointed blog post!

Sincerely,

Ava's Mummy xxx

Wednesday, 7 June 2017

Our Rainbow Baby


A baby born after loss is called a rainbow baby. This is because even though the storm may not be over the rainbow is a symbol of hope.

Our rainbow baby boy Jesse Lachlan was born Friday 12th May 2017 at 6:18pm.
Weight 3.48kg
Length 51cm

Name meaning: Jesse - gift from God, Lachlan - warrior (so meaningful)

He has completed our family even though there will always be a missing piece. One of the first things I noticed was that Jesse has dark hair. It may turn fair and be like his living siblings or he may have dark hair and take after myself. I had always wondered whether Ava would of had brown hair and looked like me and seeing Jesse made me think it would of been possible.

Having Jesse has brought some healing to our hearts and we are so grateful to have him in our arms after a very long and stressful journey through infertility treatments and then a pregnancy that early on looked like it was traveling the same path of our pregnancy with Ava.

We miss our Ava Grace just as much as ever and I wish I had her here running around getting into mischief just as toddlers do. In no way is Jesse replacing Ava but he has brought so much joy to our family and we thank God for our gift!

Thankyou to everyone who has prayed for us and encouraged us over the past 2 years.

We walked out of hospital on the 16th May 2017 with our arms full which was exactly 2 years and 2 months since losing Ava and walking out with empty arms.

. Please click the link below to be directed to my Ava Grace FB page.
https://www.facebook.com/permalink.php?story_fbid=799496410208276&id=456622537829000




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