You never really think that growing a baby should be difficult, do you? I mean, sure you accept it will uncomfortable at times and you expect sickness etc. but once you've reached that 12 week scan, you are safe right?
Growing a baby feels impossible after you've lost one. The anxieties over ever twinge feel multiplied in a rainbow pregnancy. You no longer believe that your pregnancy is 'safe' and instead have a real belief that this baby could die too.
After our first cardiac scan at 16 weeks, I had a real desire to see my baby where there was no focus on the heart or things that could be wrong. I just wanted a little slice of 'normal' for my baby. So we booked a private gender scan at just over 16 weeks. For the first and only time since Holly's ashes came home, I took her little ashes teddy bear with me to the scan. There was no way that I was going to find out what we were having without her there with us.
Up until the gender scan I had desperately wanted the baby to be a girl. It hurt so much to see little sisters together and I wanted Eleni to have a little sister here on Earth too. It took almost an hour to see our baby's gender as the cord was between its legs but finally we were told, it was a boy! In that instance my heart exploded with love for this little lad and it just felt so right. A new pregnancy, a new start, not another little girl to take Holly's place but instead a little boy with two wonderful big sisters. I drove home and cried. It was just perfect and I was so happy I'd had one normal scan where I could just watched my baby with no focus on his heart.
Unfortunately not all scans were filled with so much happiness.
Growing a rainbow baby takes a massive amount of strength. It requires a lot of love and patience from the people around you and an incredible amount of support and understanding from medical professionals. A rainbow pregnancy is more than just a little testing on your mental health and there can be serious consequences if any of your support areas are lacking. I was receiving brilliant healthcare support from midwives, doctors and consultants right up until my 20 week scan. We found out that Holly's heart was poorly at her 20 week scan and so understandably this was the scan where I felt a massive amount of panic and worry.
Unfortunately the sonographer we had at our 20 week scan was less than empathetic. I had a stillbirth sticker on my notes and so I am sure she was aware of my history but she still proceeded to abruptly tell me to lie down and not talk during the scan. She rudely told my husband not to talk to me and even that I shouldn't talk to Eleni. Maybe she was just trying to concentrate but in an instance I had a flash back of lying in the Evelina Hospital in pure silence when Holly's poorly heart was diagnosed. I asked the sonographer if she could look at our baby's heart first as that was obviously our biggest worry. She said no. I cried silently during the scan, it was just traumatic and horrific. At the end of the scan I asked if everything was okay and she mumbled 'okay, I am getting you into see the consultant now.' What the hell did that mean?! Was something wrong with our baby?!
Our consultant promised us that our baby's heart was looking fine but for every scan after, I refused to see that sonographer again. She showed zero compassion and understanding of life after loss. It made me think, shouldn't sonographers be educated in stillbirth awareness too? I think any staff who comes into contact with expectant rainbow parents should absolutely be trained in understanding baby loss. Our 20 week scan was so much more stressful and upsetting than it should have ever have been. I went home and slapped another stillbirth sticker on top of my notes.
I had started to feel baby move just before 20 weeks and soon realised how my experiences with movements were a different experience in a rainbow pregnancy. With Eleni, I had hated feeling her move. I found it painful, strange and uncomfortable! I am not ashamed to admit that I just didn't like it! With Holly however, she moved so little that it never really got going and I spent her last few days not wanting to feel her move because of the upcoming reality of ending the pregnancy. This baby was different though. I loved every feeling every single movement, it made me feel so close to him and I truly cherished every second. I had a morning routine of listening to his heartbeat on the doppler and then waiting for movements before I would get out of bed. Mornings always felt nerve wracking and this little routine was the only way I could get through the day.
We were given the date of our final cardiac scan to be the 4th July, I would be just over 29 weeks. The electrical conductive systems within any baby's heart aren't fully developed until this point which is why we couldn't get an all clear until this time. I counted down the days and the weeks which were busily filled with scans. Every scan, baby was looking well and so I tried to stay optimistic. I went shopping with my mum and my sister and finally bought some baby clothes. I no longer cared about tempting fate, I just wanted to give this baby the attention he deserved. I was desperate to grasp any normality during the pregnancy and baby shopping at around 25 weeks was the first time I had allowed myself to have a little faith.
Prior to August 2016, I had never heard of Complete Heart Block but quickly it had become my world and my nemesis. We had to endure losing our precious daughter to such a devastating condition but also understood that any future pregnancy would have a very real chance of developing it too.
205 days we had to wait for a final diagnosis, 205 days of intense anxiety mixed with a broken heart. As I lay down for my scan on the 4th July, silent tears rolled down my face as I watched the familiar routine of a cardiac scan. Watching the little heart and praying that this time we would be okay. "The heart looks perfect and we won't need to see you again." Tears and tears of relief that finally we could close the door on heart block, stamp on its ugly existence and throw away the key forever. Tears of devastation that this wasn't our Holly's outcome, that she wasn't so lucky and still so sorely missed.
I had never liked the term 'Rainbow Baby' up until that point but then I understood. The storm was never Holly, the storm was the Complete Heart Block and on that day the storm had been lifted. On the 4th July we learnt that our baby was safe and I will always be forever grateful to our little guardian angel who looked after her brother.
The hardest part to our journey was over but losing Holly had opened me up to the world of baby loss. The reality that babies die at anytime in pregnancy and soon after birth felt real and scary. We had over come our biggest battle but we still had another 10 weeks until I could hold a baby, with a perfectly beating heart...
My husband and I decided early after Holly's death that we would try again for a baby. The way we saw it, whether we tried now or in 5 years, the worry would still be the same. Whenever we fell pregnant we would still have a 20% chance of another baby with a poorly heart like Holly's. I had decided to take my full maternity leave with Holly and so decided if I was going to be pregnant again, lets do it whilst I was not working and had one less stress to worry about.
We are lucky that we don't struggle to fall pregnant. Holly died in the September and on December 10th I discovered we were pregnant again. I cried with relief at seeing those two little pink lines. This baby was never going to be a replacement for Holly but instead, another much loved sibling for Eleni. I remember sitting in the car with my husband and letting our imaginations run wild. It was the first positive news that we'd had in four months.
That evening I started bleeding and that was the end of that.
One month on and we saw two new pink lines (I told you we fall pregnant easily) but this time there were no tears of relief and no excited smiles. We didn't dare let ourselves believe that this baby was going to actually stick around. Our minds were very much focused on our raw grief for Holly and the previous months events meant that we purposely didn't allow for this new pregnancy to have much time of day. The recent miscarriage had just been another kick in the teeth that this time we didn't dare feel hopeful that this one would live. In all honesty, I wondered if I was capable of carrying a live baby anymore.
We made an early doctors appointment as I knew from our post mortem consultation that I would be going onto medication in a subsequent pregnancy. We saw a consultant who immediately put me onto an immunosuppressive drug called Hydroxychloroquine. The cause of Holly's poorly heart was the presence of specific antibodies in my blood. The antibodies normally attack secretory glands (Sjogren's Syndrome) but in pregnancy they attack the baby's developing heart. This medication was hopefully going to suppress these antibodies from doing it again. Additionally, I was put onto a daily dose of Aspirin, Vitamin D, Calcium and Flucloxacillin for my recurrent urine infections. We maxed out all the doses in the aim of giving this baby the best chance possible.
We were to be under the care of the hospital where I had Holly and the Evelina Hospital in London as they specialise in heart conditions. The plan was for 2 weekly scans to commence from around 16 weeks to observe for heart block. Cruelly, heart block can't be picked up on scan until 16 weeks and can actually develop any time up until 30 weeks gestation. It was going to be a very long journey and a case of one scan at a time.
We chose to not announce our pregnancy on all platforms of social media and I decided not to blog about the pregnancy either. I wasn't worried that we would 'jinx' the pregnancy as I had gone past the point of believing that a pregnancy announcement could be the cause of heart block. Instead, I felt that I needed to keep a safe and separate place for Holly. For a long time they felt like two separate parts of my life and I felt uncomfortable in merging them.
I think part of me must have been worried what people would think about another pregnancy. I wasn't worried that people would think it was too soon or that I was trying to replace Holly but I just worried more that a focus on a new pregnancy would mean Holly being forgotten. I didn't know if this new pregnancy would end in a live baby and so back then, I couldn't give it my time that could have otherwise been used remembering for Holly. It was just another bizarre way in how my grieving mind decided to cope.
I very quickly realised how different this pregnancy would be to my pregnancies before Holly's death. Gone were the hours browsing pregnancy announcements ideas on Pintrest and gone were the daily checking of the pregnancy app to see what was happening that week in the pregnancy. Instead, announcing the pregnancy was now met with worried faces because the people who loved you wanted to protect you from more pain. The pregnancy was so very, very wanted but so very, very scary.
We reached the 12 week scan but what formerly felt as the most nerve wracking part to our previous pregnancies, now felt unsurprisingly manageable in comparison to what we knew we were up against.
Our rainbow journey had begun and all we could do was hold onto as much hope that our grieving hearts could muster..