So much time has passed...

It's been over a year since my last post. It's not that I have forgotten about this page, it's just that I needed space to get through my rainbow pregnancy. I read all the comments that have been left on this page, and I will now work my way through replying to them. I apologise it's taken so long, I just needed to switch off and live in a bubble during my pregnancy.

The 40 weeks went past, I won't say they went by fast, as it really was not too enjoyable for me. It was filled with fear and anxiety that something would go wrong. We didn't get a 20 week scan where we were told that our baby was perfectly healthy, we were warned of an enlarged ventricle on the brain that needed monitoring throughout and after birth. But we did get through the pregnancy. 

We met some amazing medical staff, and some staff who lacked empathy. I hated that my file wasn't detailed about Sebastian. So many times we had to retell his story to doctors. However we were also corrected plenty of times when we referred to Sebastian as our first child. "Do you have any other babies?" They would ask, "only Sebastian who died at 20 weeks gestation", "ok so this pregnancy is your first baby". Apparently once we left the hospital after having Sebastian, he no longer counted. 

I could sit here and write a long list of things that were inappropriately said to us by medical professionals, but I won't. I'll save that for a day I'm enraged with anger. Haha!

This post is to provide a sort of closure to my last entry, and to announce that we did get a happy ending. Our beautiful son, Isaac Sebastian, was born on November 1st. He weighed 4kg and was 56cm long. He was born via forceps and had the cord around his throat. Blue and floppy he was swiftly taken away to stabilise. Those moments killed me. I looked at James with tears in my eyes, thinking that we were about to lose another son, that Sebastian wanted a sibling in heaven, the silence was deafening. Finally we heard his little cry as he took his first breath and Isaac was placed in my arms. I have never felt so much relief and happiness in one go. I can't even describe the feeling. 

Today as I write this entry, our little rainbow is 14 months old. He is walking, climbing, extremely noisy, loves to laugh and has a cheeky smile that melts me for days. We are very happy. 

We've celebrated 2 of Sebastian's birthdays, and have changed so much about ourselves and our lives because of him. He taught us not only who is important in our world, but also what is important. Personally, I have just become a qualified counsellor which I hope to one day use to support other grieving parents. I have also maintained my Mumspiration website of sharing stories of other grieving parents. Sebastian was and always will be a huge influence in our lives. I love that little baby with so much of my soul. He will never be forgotten, and as I have always said, I will forever speak to him daily, think about him hourly and live to keep his memory alive. While I may shed less tears (they definitely still happen), I can also finally say that I find myself smiling about him often too. How grateful I am to have been fortunate to hold him and for him to have experienced nothing but love. That brings me so much joy.

While I may write on this blog less, I will continue to write and share stories through mumspiration. Returning to this blog to update on our little family, events or things that occurred that I have remembered. 

In the meantime, thank you so so much for all of your support and love. I honestly hope my story brings hope, comfort and love to others going through this. If anyone is ever needing to vent, I'm happy to listen.

Here are a couple of photos of our beloved Isaac from when he was newborn, 6 months, and now 1 year. 

Something to share

It was Mother's Day 2015 when we told my mum that I was pregnant with Sebastian. I made her a scrapbook of my whole life and the final page ended with "and she lived happily ever after" with a photo that implied I was pregnant. 

It took my Mum and Aunty a couple of seconds for it to 'click' then they both asked "are you pregnant!?" I said that I was and they cried and hugged me with smiles from ear to ear. I remember that day with fondness. As more guests arrived mum was too excited to keep it a secret, so she told everyone! I was on cloud 9, we thought that in a few months down the track our little guy would be here.

Today, my first Mother's Day as a bereaved mother was bitter sweet. I am so thankful to have been surrounded by love and to have received Mother's Day cards and messages. It felt nice to have Sebastian remembered and for what we went through with losing him recognised. I'm not going to lie, this morning I cried. I miss him so much. I wish I could hold his little hand again,  kiss his little face and see his huge smile. I would give anything for another hug with my boy. But I know that when the time comes, we will be reunited again. I have to believe that. It keeps me going. 

A recap of my Mother's Day was not the intention of this post, but anyone who knows me will know that I take any opportunity to talk about our little Sebastian... The point of this post was to nervously honour the tradition of announcing something on Mother's Day (and hoping I don't jinx anything)...

So...

Today, I'd like to share with you that I am currently 14 weeks pregnant with our rainbow baby!!!

I will just let that sink in a little bit before I beg you to pray that this baby is healthy. 

We have no idea yet whether we will get to bring this baby home, and we still won't know whether this baby will have Skeletal Dysplasia for another 5 weeks. We pray that Sebastian has sent us a healthy sibling. We don't know what we will do if history will repeat itself. I'm incredibly anxious about the whole thing and I really wish I could say I am super excited, but I feel like my mind is protecting me out of fear of another loss.

 However, I am so so so happy and grateful to be given the opportunity to carry another baby. To carry a beautiful sibling handpicked by their big brother in heaven. To be given the opportunity to hold another baby in our arms, and to have another little human to love. We didn't think there was enough room in our hearts, but I think our hearts have just grown bigger.

I have already had a 6 week and 12 week scan and so far everything appeared well. However, whilst Sebastian also appeared healthy at this gestation, our Rainbow Baby was measuring 4 days ahead, which for us was amazing due to how small Sebastian was. It gives us a tiny amount of hope. 

Another thing I absolutely love is that this baby is due 2.11.16, while Sebastian was due 2.1.16 - such similar dates when written in that format. A sign of hope? Who knows! 

I can only do my best at keeping myself healthy and taking each day as it comes and praying that Sebastian is watching over us and his little sibling. 

💙👼🏼

To all the mums celebrating Mother's Day today with their child in their hearts, not their arms, I wish you a gentle day and send you so much love and strength. For the mums with their babies here, hug them, kiss them and tell them you love them. 

Signed, sealed & delivered: Sebastian's final autopsy results.

Monday 11th January at 1pm


Children's Hospital at Westmead.




Today we met with the Geneticist and Genetic Counsellor for Sebastian's final results.
I had been so nervous all week; I couldn't eat today and had butterflies in my stomach all morning.
I hadn't cried, but I was fighting the tears back.




I said a prayer this morning and read the book about St. Gerard. I searched everywhere for some hope that we would receive good news. I wasn't sure how I would handle (or if I could) handle any more negative news and today we would find out if Sebastian inherited his skeletal dysplasia from us. We would find out if one of us killed him.. (I know that we didn't intentionally kill him, I know that we would never have known that this was going to happen - but there is so much guilt).


We sat down in the same room we sat in for all our previous meetings. The Geneticist and counsellor were once again all smiles and genuinely interested in our concerns and feelings. I told them that I was nervous.




The Geneticist confirmed they have the results and have had Sebastian's for a little while but were waiting for our DNA results too (mine had taken the slowest as it occurred over the Christmas break), in fact they only received the results last week.


The geneticist explained that Sebastian did indeed have Osteogenesis Imperfecta, a form of brittle bones disease, the worst kind that they had seen. They could not explain why his condition was so severe considering the results showed exactly what they had thought (and is shown in babies who die of the same condition), it is a little bit baffling to be honest.


Anyways, the Geneticist said to us "Baby's gene mutation was dominant. We checked your blood results and neither of you are carriers for this condition. it was random"
I became overwhelmed. I teared up and could hardly string a sentence together, "really?!" I said with tears in my eyes and a huge smile. I was so relieved as the Geneticist confirmed it was not inherited from us. In fact the gene mutation was as small as a spelling mistake, it was a 'G' when it should have been a 'T'. I can't remember what she said after that. I needed time to take it all in. I was in shock and could only keep thinking, "We didn't kill him. We didn't kill him. oh my god, we didn't kill him..."


I was lucky that the geneticist flicked through her files and I saw his X-ray, "is that his?" I asked. "Yes, it is." we looked over his X-ray and looked at his little gorgeous body; his broken bones and shortened limbs were visible, he was still perfect to me, "he is so cute" I said and the others smiled and nodded. I had to get a copy - and I did. I need to keep anything and everything that relates to him - we will never get another photo so anything that I can get my hands on is precious.




So, we did not kill our son but we are still left with the question of 'why?" - why did it have to affect our boy? Why must I have been the 1 in 4 pregnancies that end in loss. I wish our little boy was here, I wish this didn't happen to him. I miss him so much, I always will. I will still cry for him daily and still talk to his ashes. He is our first born son, the first grandchild, our little man with wings who we love so much.

Storms Continue: Sebastian's due date

It's not his birthday, it's just a missed milestone.




January 2nd, 2016.




The day Sebastian was expected to be born. He may have come early, he may have come late, so I cannot say that that date was definitely the day he would have arrived..


Yet, when I woke up all I could feel in my chest was tightness. All I could feel was heartbreak.
I cried non stop and asked James "do you think I would have been at the hospital by now? what time do you think he would have been born?". I couldn't help it. I had to wonder about all the 'what if's'.

All I wanted to do was sit and cry. curl into a ball and wish my little boy was with us. I spent the morning doing just that; I hugged the cold plastic box his ashes are in and whispered songs and words of love. I listened to the recording of his heartbeat and wished more than anything that he was with me.


I would give up the world just to have months of sleepless nights because he was unsettled; I would do anything just to have him here - putting up with anything would have been worth it.


Midday came round and James suggested we went for a drive. So we drove to the beach, the same beach we went to when we were told he would die. We again walked along it, collected shells and some sand to go in a little frame I am putting together. We explored the rock pools and I wrote his name on a rock with a piece of chalk. I wish I took a photo of it. It was a nice afternoon and I spent many hours looking up to the sky and talking to him.


These few months have been so difficult and I am surprised we have been able to get through it. I cry everyday, usually when I am alone. I cry because I miss him, because I think of his beautiful smile he had, because he never got to experience the world like he should have and because I catch a glimpse of something beautiful and unusual that I like to think is a gift from him.

Sending our love to heaven for Christmas

Sebastian may not have arrived by Christmas this year, if things weren't the way they turned out. He may have spent it in utero waiting for his due date to arrive.

I remember when I announced my pregnancy and everyone joked that he may come on Christmas Day, to which I would reply that I would prevent it by laying still for all of December.
 

I never expected to spend this Christmas without him. Once you fall pregnant your whole future includes your baby, you never imagine that baby to die. You never consider spending Christmas grieving.It breaks my heart that we had to spend it without him. We considered not celebrating, we have nothing to celebrate. It's so hard to find things to be grateful for when you've had you're baby taken away from you. But we did it. I can't remember the reason why we chose to do it, but we did. Maybe it's because my family subtly pressured us, or because we felt like we would be letting people down..


But we did it.


...And for the parts of the day where we sat with family and friends, we even smiled and laughed. But inside we were dying. At home, where we sat alone, we cried. Why is our boy not with us!? Why us!?

This is just the beginning of milestones Sebastian has missed and we will forever mourn. He may not be with us on earth, but he is with us in spirit.. And regardless of that it was his first Christmas in heaven.

I don't think we would have been able to get through the day if it wasn't for the thoughtful gifts from family members. We were given so many cute momentous to help remember Sebastian and to help include him on the day. If he wasn't recognised in some way I think I wouldn't have lasted. So we were so grateful to have received these. I will post photos of them all soon - they are all so precious.

To all the family and friends who sent their love, prayers, kind messages and very generous gifts, thank you.

It's so hard to explain the pain of losing a baby whose lifeless body you have only met. We love hearing people mention his name and include him on special occasions, whether it's his first Christmas or his twentieth, I don't think it will ever get old.

Speaking mixed emotions, thinking confused thoughts

You will probably guess from reading this post that my emotions are all over the place. I'm battling so many emotional wars I'm starting to feel numb. 

2 weeks ago I returned to work. I have to say I work with some amazing people. I was greeted with morning teas, gifts, hugs and lots of support. It made retuning to work a lot easier. I was a nervous wreck as I walked in the door. I had already cried on my way there. 

It is good to be back in a routine and given a distraction each day, but I can't help but feel like I'm back to where I was before Sebastian. It hurts so much to return to reality like nothing happened. I should be going on maternity leave in 1 week. But here I am dreading a client asking me where my pregnant belly has gone or why I am still at work (or where I have been). I will keep going and pushing myself, I haven't yet felt isolated or silenced about what happened, and people are genuinely interested and happy to hear me talk about him so I find this relieving and comforting. I definitely am glad I took the three months off. I needed it. 

I still cry everyday. If you ever wondered if you run out of tears I can confirm that you don't. It's so hard to find things to look forward to, but I pray that one day I will meet Sebastian again and before then I will be able to give him a sibling. Even if it's just one. I will be ever so grateful (and probably incredibly over protective and full of anxiety). 

Anyways, today we had our first appointment with the IVF specialist. 

I had booked the appointment last month after we got our results. We hadn't (and in our minds still have not) committed to this pathway. However we acknowledge that it may be our best chance of getting a baby that is healthy and alive.. So I booked it. 

I had contemplated cancelling it. I find myself second guessing everything lately as I'm so sick of having an uncertain future that is full of "what ifs". We ended up keeping the appointment and were not feeling any emotion towards it other than "meh". It's just another process - well so I keep telling myself. 

We also weren't sure whether it was premature to be going as we were still unsure of when we will get Sebastian's final autopsy results, especially as they said it could be years away... But as we walked out of the house today, totally out of the blue, literally on our way to the IVF clinic, we received an email from the Genetic Counsellor. Our results should be ready by January 11th. Holy crap. This just got real. 

I became a little excited for the IVF appointment after that, so off we went.. 

The doctor was extremely nice. He told it how it was but he was honest. I appreciated that. 

He did some tests (internal ultrasounds & blood tests) and talked us through the cost and process. Steady yourself for that - there is nothing easy about it at all. 

He looked at my ovaries to see whether I have PCOS and endometriosis, which he decided I'm "borderline" for PCOS. I must admit, I became filled with rage when he even contemplated those things wrong with me. I had never felt like anything was wrong with that stuff and I didn't need him throwing another spanner in our works. Nevertheless, I kept it to myself. I'm still unconvinced I am "borderline" . He wants me to lose 5kgs.. Which I feel like if I do before the next appointment, he will be more convinced I don't have it.. Right?

We will be going back to see him on January 28th. By that stage we will have the autopsy results and be able to better plan the process (if we haven't convinced ourselves to try naturally). If everything goes to plan and they find a healthy embryo to transfer first go, I could be pregnant by May 2016. Watch this space? 

So how do I feel? Well to be honest I feel numb. I should be 36 weeks pregnant and I absolutely hate that I am not. I hate that we have to go through with this process and that I have failed in my job of being a woman. 

I am still so incredibly skeptical of the process. I tend to concentrate on the low success rates we  are likely to experience due to having two genetic conditions. I wish I could see just a glimpse of my life in 18 months time, so I can see whether to give up now or not. So whilst I am hopeful, I know that there is a chance it won't work. The doctor said it may take 2-3 attempts to get it right. 

A lady at my work gave me a religious book that the women in her family read after they had experienced a miscarriage or stillbirth. It's a little bit of a family heirloom with a superstitious and religious undertone. I'm reading it. Daily. All the women who used it fell pregnant with healthy babies afterwards. I feel like I have nothing to lose and it helps restore my faith and hope into our future. 

The next few weeks are going to be really hard for us. We have Sebastian's first Christmas in heaven, his due date on January 2nd and then the autopsy results on January 11th, followed by IVF appointment on the 28th. I apologise now-in advance- for any emotional venting that may occur here on my blog, or in person. Feel free to avoid me for the next two months. No offence will be taken.

***

i don't really want to include this in my blog as I don't want financial stress to be something that I write about, but I will put the price below in case you are going through this process and would like to know what the price breakdown of the procedure is (I'm only putting this as I was desperate to find out aswell). But please know this is relative to PGD testing and is the "maximum" amount (it's actually a little more than the below price as you pay for consultations and tests before even getting to IVF). It may differ for you depending on your circumstances and clinic.

This is the price breakdown...

Most expensive case (they have 5 or more embryos to test and get a normal embryo) $20,200 total. But $13096 out of pocket after Medicare (not including consultation fees and tests before). 

If they don't do a transfer because there was no healthy embryo the out of pocket expenses are $10645 ($16165 before Medicare).

If the first cycle is not successful The second attempt (and thereafter) will cost $6739 out of pocket  ($11815 before Medicare). Then on top of that will be $2450 if there is a healthy embryo to transfer. 

Of course with the current proposals by the government the price may increase after January 2016. 

***

To everyone still reading and following our journey, thank you. The overwhelming support and love we have received is the only thing that has been keeping us going. I would have given up by now if I didn't have you. 

Smiling but dying inside: our DNA results

I haven't slept properly since my 20 week scan back in early August. Each night I lay awake until around 3am wrestling with  my grief for Sebastian and my anxiety for the future. I've lost all my passion for everything I once loved, whether it be my work (although I have not yet returned) or my never ending desire to save every animal. I just can't find the energy to fight those battles when I now have my own.

This past week has been no different. 

On Thursday we found out the first half of our DNA results. We were given the news that the microdeletion of chromosome 15q11.2 that Sebastian had was inherited through me. Whilst this is not a fatal diagnosis and was thus secondary to Sebastian's skeletal dysplasia, it is known to affect people through the routes of autism, mental health, learning difficulties, epilepsy and some other physical disabilities also. I am, an unaffected carrier and my parents are now being encouraged to also be tested. 

When we were told of this news we were shocked. The doctor told us as if we were expecting it to have been the case. But we had convinced ourselves it was spontaneous in order to get through the past 7 weeks.  As we sat in her office, the same office where she told us that Sebastian was going to die, we stared at her with hope in our eyes, She paused for a moment and looked at me as she said, "Lauren we found that you are the carrier to this microdeletion" 

At first I was shocked. I turned to James and said "it was me!" As if he hadn't been sitting next to me the whole time. We had taken taken bets on who had it but neither really believed we did. 

After the initial shock my heart sunk. 

Tears welled up in my eyes as I came to terms with the fact that I had given our little boy this diagnosis, another potential struggle if he was to survive. I couldn't believe it. To be honest, I still can't. 

I feel like our job as a mother is to protect our babies, to fight their battles for them and to give them strength to get through life - all three things I now know to have failed at with Sebastian. Why couldn't this have been spontaneous? Didn't the universe know I have enough guilt to live with? Why did it need to kick me when I'm already down? If we next find out that I have also given him skeletal dysplasia, the condition that took his life, I honestly will give up. My heart breaks just by thinking about it.

My family have all asked me how James is regarding these results, and to be honest he is doing well. He is being incredibly strong for me and has not shown one ounce of disappointment, even though I know he is feeling it. He is trying to be supportive to me and lessen any blame or guilt I put on myself. He does not see the microdeletion as a big deal as now that he knows I have it, he believes Sebastian (or our next baby) could also have been just fine too. It's a positive way to look at it, I guess.

So, what next? We don't know. 

The results for the skeletal dysplasia could still be months or years away (although the geneticist is going to try and have the tests completed at an alternative lab to get it faster), and the worst is that we may never know what gene mutation caused it. 

As many people who know us would know that we would like to give Sebastian a sibling as soon as possible. Our arms literally ache just at the thought of not being able to hold and cuddle Sebastian, or to complete my pregnancy. It was just today that I opened my emails to be reminded by a subscription I joined that I should be 33 weeks pregnant. I can't even bear to be near a pregnant woman lately. The wonder of what size my belly would be if Sebastian was still here, or whether I will get to ever experience that again is so overpowering.  It controls my thoughts until I end up crying. It's hard. Really hard. I am crying now just at the thought of it and I know eventually I will be numb to the whole idea because it is that tormenting.

I know that at the moment we have three options (which is great if you are an optimistic person, but I struggle with optimism at the moment). Our options are:

A) try naturally and risk it all. They can do a CVS at 10 weeks and determine the presence of microdeletion; and then if we choose we can terminate the pregnancy if we don't want to gamble the chances of the baby being affected or not (yes, that's right they give that option to parents who have lost a baby - like that decision is made so easily).

B) start IVF with PGD. Now that we know this microdeletion is inherited, there is a 50% chance for each of my eggs that they are affected. Whilst The PGD part of IVF is very expensive, there is no guarantee of success, as embryos may not last the biopsy, they may not "stick" once transferred and they simply may not collect any eggs that are unaffected. However due to the costs of this process we will probably be only able to afford one attempt as the money will come from our mortgage, so it would be smarter to wait until we get all the results so that they can check embryos for that too. We are able to start making appointments though and going on wait lists.

C) wait for the skeletal dysplasia results and then decide to either do option A (if skeletal dysplasia is not inherited) or B. 

I really, really hope that we are not carrying a defective gene for the skeletal dysplasia as our chances then to find an embryo (naturally or through IVF) that is healthy become much less (25% chance baby will have skeletal dysplasia on top of microdeletion's 50%).

We are well aware that we can get eggs donated (and I have had amazing people offer theirs) and adopt children, and they are at the back of our minds. But for now we need to fight for our chances of having our own as otherwise we will always wonder. 

I have no idea how I am able to move forward from here. There is now some concern as to my own health in regards to the microdeletion as it has been known to adversely and significantly affect people in adulthood, so I have that thrown in the mix. 

But I also don't know how next week I am going to return to work, back to a routine like nothing happened. How I am going to live each day without knowing when I will find out the remaining results, or how to decide on our options. The constant concerns taunt me 24/7 and as I write this at 3.52am, I wonder whether this is my new normal, a sleep deprived battle full of anxiety. 

Some days I wish we didn't have the technology we have now as the knowledge we have about our genetics can be overhwhelming and just taunts us really with all the "what ifs" - I wonder how blissful it would have been to not know any of this information...