Thursday, May 21, 2015

Part II. From Charlotte to Flynn - 5 years.

I can't believe it has been five years today since our baby girl was born. Born with no breath, no sweet indignant cry at being pushed into the world, no pink warm skin, no reassuring rise of her chest. I remember her so clearly like it was yesterday. After she was born, she had one fist curled up resting on her cheek like she was just having a little rest. She was so perfectly formed in every way possible, from the top of her head to the tips of her tiny toes which still had webbing between each one of them - she just needed to grow.  And at just 15cm long, she certainly had a lot more growing to do.

But even though Charlotte was born with no breath or sweet cry or pink warm skin or reassuring rise of her chest… she still left something behind. A legacy of love and compassion and more of an understanding that perfection is of the soul and it doesn't matter what shape the body comes in, down syndrome and all, I loved my baby now no matter what!

But she also left me a gift, one that I did not come to truly comprehend until many many months later. And so the story of Charlotte never ended. It didn't end at "To Italy to Holland to Nowhere". It became "From Italy to Holland to Nowhere to Flynn" because only five weeks later after Charlotte was born, I was pregnant with Flynn. Charlotte sent me Flynn to help heal my heart. 

I've always wanted to record part II of Charlotte's story and today marking half a decade, my heart feels right to write it. Year five was definitely harder at the beginning of the year. I was feeling weighed down with sad thoughts about her when over the past few years I had felt more at peace. I think it hit me when school went back and I realised that Charlotte would have been starting kinder this year and another milestone reached with starting school. 

And so part II begins at the end of "To Italy to Holland to Nowhere".
After giving birth to Charlotte on the 21st of May, we felt like we were in limbo. Our baby was not "old" enough to be termed a still-birth (which in Tasmania is 20 weeks or if it is difficult to determine how many weeks, if the baby weighs at least 400 grams) but at 16.5 weeks, we clearly had a little person and what were we to do with her.

I had given birth to her but there was no recognition of her and according to the world, she did not even exist. I found that to be a big part of my grief.
After 20 weeks, a baby has to be registered as an official death with the Births, Deaths and Marriages department and buried in a cemetery. 

(N.B - in WA, NSW and QLD the law has now changed to include babies born between 12 and 19 weeks to encompass late miscarriages.  It's not legally required as per post 20 weeks but as an option, parents can acquire a death certificate for their baby, so that the presence of their child is legally recognised. My understanding is though, that a private burial or cremation outside a cemetery still remains in place for 12-19 week babies and official cemetery burials remain for post 20 week babies. It is a lovely change to the legislation as it gives parents support in their grief that "hey my baby does exist and is legally recognised". 

I'm on a mission to lobby the Tasmanian Government to follow suit.)

We were living in a police rental house and I could not bear the thought of burying her in the backyard next to the guinea pigs, chooks or feral cat (don't ask) and the midwife at the hospital said "we can take care of her" which I found out meant she would be going to the big hospital incinerator. There was no way I was going to let that happen as even though she was no longer with us, I felt so fiercely protective of her little body. Simon and I discussed it and prayed about it and we decided that we would have her cremated so she could always be with us wherever we were. The hospital had told us that Finney's funeral home were who they recommended to patients and so we rang them and arranged to have them come and pick her up. They were very lovely and asked about dressing her in something or a little blanket but we really didn't have anything that small and the staff never suggested anything. 

Looking back now, I found the staff very lovely during Charlotte's birth, very caring and supportive but once she was born, I wish they had given us more suggestions. We were still in shock and weren't thinking straight. My biggest regret was no photos. It seems strange to think I did not think of it at the time but my brain was hardly working at all. I wish I had brought the girls in to see her. I wish I had been offered something to wrap her in by the nurses . All these things could have been put to me as options and then I could have made decisions but I was in no state of coming up with the options myself. 

The hardest part was leaving the hospital without her. I knew that this made it final, the last connection between us was gone as she was no longer in my tummy and outside the hospital walls, the world continued to move along, having never had the chance to meet her or know she even existed.

So that Friday the 21st and we went home to wait for Finney's to ring to say Charlotte had been cremated and to come and pick her up. The next few days were very surreal and numb. We had some beautiful friends do such lovely things for us, beautiful jewellery, flowers, cards, meals and texts and it helped us a great deal to feel so loved and supported and know that they knew Charlotte was very much a part of our family.

On the Monday afternoon, the phone rang and it was my geneticist, Jo, that I've had since Hallie was diagnosed with CAH as a newborn. She said "good news, your baby does not have CAH". I felt so bad as she was so excited to tell me as I know having CAH and Down Syndrome together would have complicated things but I knew that no-one had told her about Charlotte's passing. I felt so bad having to tell her and I was crying and she was so upset that she had upset me and I was trying to tell her that it was ok. I knew she was furious that no-one had told her but she was so lovely about it all. When I hung up the phone the realisation that living cells of Charlotte were growing in a petrie dish in Melbourne (they are grown for five weeks to detect CAH) while she was now dead made me even sadder. I kept having irrational thoughts of wishing we could grow Charlotte back from her live cells.

On Tuesday, we had Nan Triffitt's funeral and that was particularly hard, as the morning we found out Charlotte had died, Simon also received a call from his Mum that his Nan had died too. I was bleeding quite a lot and I asked Simon's Aunty who is a nurse about how the bleeding was increasing that day rather than staying the same or diminishing. She said that I was on my feet a lot more that day and so that may be the reason why. After the funeral, we were in the car and I had a towel underneath me and lots of pads and I remember bleeding through to the towel and being annoyed that there was so much of it. At that exact moment, Finney's rang and said Charlotte was ready and so we drove from Nan Triffitt's funeral to Finney's to pick up Charlotte. I remember walking in feeling stressed that the bleeding was showing on my skirt. Taking Charlotte's urn and discussing the bill with the funeral home, it felt like I was having an out of body experience. As I left the funeral place, an elderly couple walked in and I wondered why they were there, what grief they were carrying and they smiled sweetly and I smiled back but in my head I was screaming "I'm carrying my dead baby's ashes in my arms". 

(Charlotte's little urn)

The next day the bleeding was still bad but not as bad as the day before and so I pottered around and Simon went to work at 4pm. Around 11 pm that night I started bleeding really heavily. I rang the labour ward and they said, if the bleeding soaked through a pad within a certain amount of time and I felt faint then to come straight in. I decided that maybe I should lay down and go to sleep so I went to the bedroom and took off my shoes ready to lay down and I heard a distinctive voice saying, "do not lay down, do not go to sleep". It was so clear and distinct that I froze in my tracks. Instead I went and sat in a chair and the bleeding became so bad that it went through a pad, through my track pants and through a towel. I started to feel really bad and really faint when Simon came through the door and I told him to ring an ambulance immediately as I knew something was really wrong. It took all my strength to stay conscious and when the ambulance came, they laid me on the floor first to lift me on the stretcher and the blood had now gone through two towels and was all over the carpet. I remember thinking, "why is this happening to me now, haven't I been through enough?".

My neighbour Katherine came over to watch the kids and Simon followed in the car. At the hospital they were doing lots to try and stop the bleeding and for awhile they couldn't. They were telling me that my uterus had not contracted after the birth and was still high and they would have to manually push it down. Throughout this entire process, I felt no pain whatsoever in my abdomen, a real blessing as I know what these kind of pains are like. The nurse said to me after it was all over, "goodness you had us all in a bit of a flurry out there". Before the ambulance came, I was really worried and had all these irrational thoughts like, "did Charlotte die so this would happen and I'm going to die too?" Silly thoughts now but at the time I was scared because the haemorrhaging had come on so fast.  After things had settled down somewhat, they admitted me to a ward and said they would do a scan in the morning to make sure everything was gone. They were wanting to avoid a D and C the next day as they said there was a 25% chance of rupturing the uterus. I kept telling them that I was going to Melbourne on Saturday so I really needed to be better and they all laughed at me. The next morning I was wheeled down to radiology and the radiographer said, "good news, there is nothing there". I burst into tears and said "but there is supposed to be a baby there". But it was good news that there was now nothing left because my body could finally start to heal and I was able to go to Melbourne in the end after all.

Fast forward 9 hard weeks and I said to Simon that I didn't want anymore kids because going through everything with Charlotte and then the haemorraghing was awful and I thought we should just count our blessings of the 4 beautiful kids we already had. Simon agreed and I went off to Bridport with my sister Jess to visit my Mum. We went out for tea that night and I felt a little off after tea and decided the pub parmigiana was maybe not up to scratch. ;)  The next day I came home and still felt unwell and I had spare pregnancy tests and decided to test as I was confident I couldn't be after what my body had just been through. Well it came up POSITIVE and I realised I must be at least 4 weeks to be feeling the nausea. I was in shock and couldn't believe what I was seeing. It meant I fell pregnant only 5 weeks after giving birth and 4 weeks after haemorrhaging. Straightaway I thought that I would probably miscarry as my body was not recovered enough to do this. And surely enough I started spotting at about 9 weeks and having never spotted before, decided a miscarriage was inevitable. But later we found out I had a low lying placenta that would need to be monitored (so that I didn't get placenta pre via) and that was what was causing the spotting. My pregnancy progressed like all the others. The fun morning sickness, the CVS for testing of CAH. 

I went back to Dr Sue Winspear who was now carrying out my 4th CVS and who I trusted implicitly with the CVS skills that she had. You don't just trust any doctor with one of those procedures. It is a very delicate procedure of placing a needle into the placenta and drawing out cells. She said to me that the reason she asked me so many times about whether I wanted an abortion after finding out about Charlotte's diagnosis is because 95% of women in the same situation under her care, choose to abort and she was just so shocked that I was so sure and confident that we would not be going down that path. It's nice to be sure of some things and have that peace of mind of already knowing your decision and that in actual fact there was no decision to be made.

My geneticist Jo had said to me, she was hoping everything would be ok this time and I said to her, "I know this baby has CAH, I just do". And sure enough when I was 17 weeks pregnant, Jo rang to tell me my baby boy had CAH. She felt so bad again like I couldn't catch a break but I said to her that I felt peace with it because we were lucky in already having Hallie and if CAH is monitored and managed properly, it is not a death sentence.

(I hated the way it was worded  - "the 2nd 2010 foetus".)

At my 19 week scan I was petrified of going and finding Flynn dead on the screen. I was nearly sick driving into the hospital and I was very relieved to see the radiographer that I had with Charlotte. We had a laugh about her becoming my private radiographer as we realised I had her for Charlotte's official death scan, the scan after the haemorrhage, Flynn's 7 week dating scan and now the 19 morphology scan. I said to her, "please just go straight to the heartbeat, I don't care if he has no arms, legs or 2 heads, I just want him to be alive". She understood completely and I got to see a beautiful live baby on the screen. I never had her after that but I know it was a tender blessing for her to be with me through all of that to already know my history an allay my fears.

By the end of the pregnancy, I was so exhausted. The morning sickness had come back after finishing at around 24 weeks and I was felling resentful for being pregnant for 15 months straight with only a 5 week break in between. I was just cross. I was still trying to deal with my grief from losing Charlotte and I felt like this baby boy had invaded her space and I should already have a 5 month old girl, not be feeling blown up like an elephant. I was mentally, emotionally and physically exhausted as your body can only take so much and I had just turned 37 so I was feeling it. :)

Flynn was due the 3rd of April 2011. I have never been on time and sure enough the days ticked by until we went passed my record of 7 days over with Sarra and Hallie and then went into the unknown. I had a scan at 37 weeks and the placenta had moved away from the cervix so a natural labour was on the cards again. At 9 days overdue, on the 12th of April, I was sitting there watching Dr Phil when the pains started. At 2 pm they were 5 minutes apart and I rang the hospital and the midwife said, "you have had 5 other labours so you better come in now." I laughed and said, "I know my body and it still will be awhile yet" as I have never had a quick labour and even tiny Charlotte took 9.5 hours.

So at 2pm we dropped Jonty off at my sister Lisa's house and drove to the hospital. Simon had been trying to find relaxing sounds to record on his phone but I wasn't interested in waves crashing on the beach or rain forest noises, I just wanted the sound of rain pattering on a roof. We couldn't find any but the rain was pelting down driving into the hospital and I found it very comforting and soothing on the car and watching the windscreen wipers go back and forth.

I had the blanket I made for Charlotte before I found out she had died, as I wanted something of hers close to me. At the hospital my contractions were regular but not excruciating yet. I was really worried about how I was going to cope with it as I still had feelings of resentment toward this baby and feeling like I shouldn't even be doing this, that I should be tucked up at home with my baby girl, not giving birth ten and a half months later again. I decided that for once I wanted a pain-free birth and by now being experienced with the whole labour process, I knew the right time to ask - before you need it - when the pain is still manageable because usually after that, they always say its too late. :)

At 5pm I was 5 cm dilated and coping quite well. This was when I asked for an epidural. They did the usual um and ah but once they knew my history with Charlotte less than a year earlier, they were very accommodating. They decided to take me to a private labour room first and as we walked down the corridor, I saw that we were going to the room where I delivered Charlotte. I stopped the midwife and said that I didn't want that room and she said there was no other free rooms and I said, "I delivered my dead baby there last year". I don't how they did it but all of a sudden I was in a different room and I felt so relieved. It would have ben okay but I just didn't want the extra memories on top of feeling like I was and knowing I had a "fun" time of labour ahead of me. 

Th epidural was great until about 9 cms when it started to wear off. I knew this because the midwife was feeling around for Flynn's head and couldn't figure out what his head was doing because it was sitting a little diagonal and not down in the cervix nicely. None of my kid's heads have ever engaged until the last possible moment so I was like "great, no wonder my labours and pushing go on forever". I tried to top up the epidural but nope nothing and at 9.55 pm it was pushing time. The Dr decided that I may need a vontoose to help extract Flynn and popped my legs in the stirrups. I decided I didn't want that as I had that "lovely" experience with Oliver and didn't want a repeat. I don't know what I found but something deep inside me took over and I pushed and pushed and as Flynn's head came down, the "lovely" Dr put her hand in and turned his head while I pushed and then at 10.24pm he was born and I kept pushing and the Dr was laughing saying "Simone you can stop pushing now". I was so pleased with myself because 30 mins was my record for shortest pushing time. (longest was 5 hrs- thanks Oliver). The paediatrician, Ben, was there next to my head waiting for Flynn to be born and as soon as he came out they popped him on my chest and he was all grey and quiet and for a mini-second we all just stared at him and then Ben said "right" and whisked him away to a table and did something for about 30 seconds and then we heard the loudest blood curdling indignant cry I have ever heard in a newborn. My friend who is a midwife and delivered Jonty came on shift at 10pm and was looking after me and she and Simon and I all looked at each other and I said "can we put him back". It was ear piercing. This was the first post following Flynn's birth.

As we knew Flynn had CAH, he stayed in hospital for 7 days as part of the special-care nursery. Those days were hard as every time I looked at Flynn I felt resentful of him. In my eyes he was not even the right gender. I look back at myself back then and I don't feel ashamed as they were very real feelings at the time. Some people would say how ungrateful I was, that I got another baby so soon and so that should fix everything but it didn't. In fact for awhile it made it worse and a nurse in the hospital said to me, that often after a loss, especially as it was not that long ago, the next labour brings all the emotions back to the fore again.

(courtesy of Lisa King)

For the first couple of months following the birth of Flynn, I felt like I was a robot going through the motions. It didn't help that he didn't settle or sleep very well. In actual fact he ended up my worst sleeper out of all of them and still today sleeps with someone (Hallie) as he loves that closeness to another. I knew that I loved Flynn, I felt it deep down but I felt like I was under water and looking at Flynn underwater and nothing seemed clear and vivid and I felt the love for him but felt like there was this barrier between us stopping me from tapping into my love for him. I know it was me trying to protect myself from letting myself love him too much because how much would it hurt if he left too. I wasn't innocent or naive anymore. I didn't have stress-free pregnancies anymore - hard things could and did happen. 

(courtesy of Lisa King - 12 hours old)

It wasn't until Flynn was about 4 months old and I was holding him in the shower as it was something that  really settled him and all of a sudden, without warning while I was gazing at him, the wall crumbled, the barrier was down and I saw Flynn clearly for the first time. It was like my eyes were opened to a sacred experience. I felt such overwhelming and overpowering love for him . I felt Charlotte there seeming so pleased with herself. She was probably thinking "goodness I thought I would have to knock her over the head with a brick". I could not believe the fierceness of the love I had for my baby boy. It was a very spiritual moment and I feel so blessed to have experienced it.

(Flynn at 4 months)

From then on I knew without a doubt that Flynn was a part of Charlotte and Charlotte a part of Flynn. I knew that she loved me and wanted me to know that Flynn was a gift not just from God, but from her too, knowing that the presence of Flynn in my life would bless me and heal me in ways I didn't think possible. Gone was the resentment and although the grief from losing Charlotte was still present and ever-present, a peace settled over me. The jealousy I had felt at other Mums who had children with Down syndrome and their babies had lived, seeped away as I came to accept that Charlotte was not meant to stay and in her place, she had given me Flynn.

Jan this year - 3yrs old.

In an ideal world, Flynn and Charlotte would have come together, according to Hallie, so we could have both of them here but I know that one day we will have both of them together, that Charlotte will always be a part of our family and one day we will see her again and until then her story lives on in Flynn and whatever remainder of time we have left on this earth as her family.

(courtesy of Lisa King)
(5) Charlotte (Charly) May - 21.5.10


The Kings said...

Beautiful and sad post at the same time. Love you so much. You're an amazing Mum and Charlotte is lucky to be a part of your family. xxx

make it perfect said...

You write so beautifully Simone. You are such a rock and your family is perfect. Love you x