Day: October 11, 2019

Hope #44

Published on by bettydora2 Comments

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Today’s blog is dedicated to hope. My hope came in the form of little Vinnie. Today my Rainbow baby is 3. Not so little anymore! We are so blessed to have this little rocket in our lives but the journey with him has not been easy.

There is no denying having another baby after the death of another not only restores hope but for me it provided a renewed purpose. It has however also added an additional layer to my grief.

Firstly I must explain that Betty was to be our Rainbow baby after suffering a miscarriage 2 years before her. After we lost that baby we were so rocked and in shock we just weren’t expecting it (not that we were the next time) but it really shook us and we didn’t try for several years for another baby because we were so scared. The first baby was a ‘missed miscarriage’ at the 12 week scan it was found that at around 9 weeks the baby had died.

We decided to start trying for Betty in the January of 2015 and were very fortunate to get pregnant on the first try. Once I got to 20 weeks I really did feel ‘out of the woods’ if you like and I never even contemplated that I would loose her. At no point, it just wasn’t in my thoughts at all – I was so naive.

After Betty died it was strange, you would of thought it would be worse or similar to the scared feelings of the first time, but this was different. Both myself and Scott knew instantly we had to try for another baby. We knew it wouldn’t replace her no baby could do that, but our arms were so empty, the house was empty we decided that we would wait for my period to return if it did (I wasn’t sure if my body would work at all after everything that had happened) and then we would try but not put any pressure on ourselves, if it took a year or longer so be it we just needed to try. To our shock and absolute delight and I guess terror we were so lucky to fall pregnant on the first try again (I don’t even know how this happened) I thought it would take months after all my body had been through.

I was so scared but we had to try this. I needed to give myself hope again. I felt like I had let so many people down this was going to be my chance to restore faith, of course it was so much more than that. I had to blinker my thoughts, Scott would frequently give me pep talks and tell me they wouldn’t let this happen to us again, they simply wouldn’t. We were under a top consultant and from early on we were under the care of the hospital, we had an early scan, then more frequent ones with the consultant. I was tested for gestational diabetes more than once as there had been a suggestion with Betty that some of the results from our post mortem pointed towards gestational diabetes (the test they missed out was the one that would of confirmed this either way which was why it was so frustrating) when we had the 20 week scan me and Archie went together as Scott was working away, when they said it was a boy he said he wanted a sister and I cried because I wasn’t sure how I felt! Deep down I was relieved because I had never thought I would have a daughter and I never thought we would so this just confirmed my intuition. I knew this boy would be strong, although I was anxious deep down I had to believe we were going to take him home.

In a twist of fate the hospital had planned to induce me if I wished at 38 weeks but this was going to fall on Betty’s birthday I explained that I just didn’t think I could cope with going in on or just before or after her birthday, I hadn’t been back in the maternity unit since the day we left her and it was a huge fear of mine. I just felt like it would all be too much and there was no way I could risk taking this pregnancy to 39 weeks. It was agreed I could go in just after 37 weeks and it was a comfort to have an induction date along with going in for monitoring twice weekly from 30 weeks, my midwife would see me mid week every week so I never had to go longer than a few days without seeing anyone and of course if I wanted to I could go as much as I wanted to be monitored.

As much as I found all the extra monitoring a comfort the thing I found most stressful was the extra scans, because they are looking in so much more than with a low risk pregnancy I felt things were being discussed or brought up that wouldn’t normally be discussed the fluid levels were a huge stress for me. I constantly looked at the diamond on the fluid line and it stressed me out every single time I got the piece of paper, I studied every one afraid they had missed something or I had. I didn’t take hardly any pictures of my bump, with Archie I took 1 photo of me right at the end and I wished I had taken more pictures, with Betty I decided that once a month I would do a bump pic but then with Vinnie I was too scared to document my bump incase I jinxed it – so I have this one which was taken on the 11th October the day before he was born!

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We had our induction and everything was pretty straight forward, I had been induced with Betty so I knew what to expect, I had a lot of worries about going back to the ward where we were with Betty, luckily we weren’t in the same bay as we were with her. When we eventually went through to delivery the lovely midwife who delivered Betty and looked after her came in to see us, she had seen we were in and wanted to come and say hello. She told us that she often thought of Betty – this was such a lovely thing for her to do and it strangely put me at ease – I’m sure her name was Jo I just can’t remember. But she told us she is now dealing with a lot more of the bereavement side of midwifery and she was so kind and caring with us I know she will be a great help to others who sadly have to meet her. We were in hospital for a day and a half waiting for the induction to work but once my waters were broken Vinnie didn’t take long to arrive. I cuddled him as soon as he was born but it was clear to us there was something wrong, he was breathing strangely, I knew straight away he wasn’t right he was breathing strangely the midwife said it would just be some mucus but within a few minutes someone from NICU had come down and in an instant they took him away, Scott went with him and I was left alone.

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I think I was too tired to cry, I called my mum and dad and told them what happened and they came straight to the hospital and sat with me whilst I had a shower and waited to go and see him. Scott was with Vinnie and he said they were so amazing in the NICU, they had to put a cannula in his tiny hand and they did it effortlessly. It seemed almost unbelievable that we had waited this long for our baby and now he was poorly too. I was wheeled up to see him and I couldn’t touch or move him I just had to peer into his little incubator and hope he would survive. No one really knew what was wrong with him, he was 7lb 10oz so he was by far the biggest baby in there. Things weren’t meant to be like this, the staff were amazing. They gave me a side room so I didn’t have to sleep in with all the mothers who had their babies and I visited all day everyday. It was on day 3 that I finally held our baby boy. I couldn’t believe it when I went down that morning and they asked me if I would like a cuddle with him! I had been longing for this moment. It was wonderful. The next day I was able to try and feed him as up until that point they had been giving him expressed breast milk through a tube, I had been asking to feed him as I just knew the milk would make him stronger and get him out!

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Sure enough he started to turn a corner – I knew he was going to make it. He was such a fighter. Unbelievably we were nearing Betty’s birthday, I had never wanted to be here on that date and it was looking like the hospital wanted me to go home now and just come back to visit. They asked if I could go the next day, the 17th I explained to them that there was just no way I could walk out of that hospital on October 17th on what would of been my daughters 1st birthday and leave another child behind I just couldn’t. They were very understanding and they agreed I could stay a few more days, they would find a way! The 17th arrived, one of the midwives came to see me in the morning, she said she knew what a special day it was and she gave me 2 little knitted characters, a bunny and and bear. Vinnie still has them in his room, I will cherish them forever.

Scott arrived and we walked the corridor to see Vinnie for the day, as we arrived the nurses announced they had a surprise for us, as we walked round the corner Vinnie was out of his incubator and he was laid in a little cot, he had made such an improvement over night. His eyes were the widest we had ever seen them and he was looking at us as if to say, mum, dad I’ve been waiting for you in here. He was going to be able to come back to the ward with us that day. We were on cloud 9 of all the things that could of happened that day it was a sign from our gorgeous girl if nothing else, she was looking after her little brother and he was getting better and he was coming with us where he belonged. If I could ever describe a moment when I had such hope it would be this single moment in time. I can’t explain it properly it was just simply amazing.

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(this was who greeted us)

We wheeled his little cot back to our room – we felt like we were stealing him, it was so strange to have him with us. He was jaundice so we had to stay a few more days and we were moved into the main ward (which was an experience) but it didn’t matter we had him our little rainbow and then the most magical thing happened Archie met Vinnie properly for the first time, he held him and he smiled so much! He was so proud to finally have his little brother in his arms not just peering through his plastic cot. He was so happy because we could tell him we would be coming home, he had missed me and was worried after loosing his sister.

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So a week longer than we expected but we finally took our little Vinnie home to our family, our friends. Home with us where he belonged to start living our lives again. Having a baby after loosing one was never going to be easy, it hasn’t and isn’t easy even now. But as this little bean turns a whole 3 years old today I am so grateful that we got to keep him, he has such a spirit and the last 3 years for so many reasons have been hard but I wouldn’t change any of it. To have this little boy our sunshine in amongst all the darkness. It doesn’t make your loss easier to have another child but it gives you a chance. A chance to give them all your hopes, your dreams and ultimately be a family.

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Without our losses we wouldn’t have our hope. I can’t even contemplate what may of been. He is my light, he is my dark, now he sleeps he is definitely saving my sanity. I would do it all over again for this chance, the chance to have my children, boy or girl it doesn’t matter they are mine and Scott’s, they come out of our unconditional love for one another, they are ours and we are theirs and we have been so blessed to have 3 beautiful children. We will always be forever heartbroken that Betty couldn’t stay but eternally grateful we got another chance and we have her brothers.

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(the first time he had both his boys together – it was a wonderful moment)

Even tho Betty died I would risk it all again to have that moment in time with her, she did exist, they exist and we are a family. A family of 5.

So as I tuck my little 3 year old into bed tonight after ‘the best day ever’ as he put it. I thank him for letting me be his mummy and I look for my star in the sky, she is always with me in everything I do, everyday and I try my hardest to be the best I can for all of them even on the days when I have to tell them off (most days), on the bad, the good and the calm days. Everyday I try to do my best as in my opinion parenting a child that is no longer here is probably one of the hardest jobs of all.

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To be continued..

Jen x

 

Despair #43

Published on by bettydoraLeave a comment

Despair – definition: the complete loss or absence of hope.

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After the initial shock of the news of what had happened came the despair. In fact despair mixed with fraught and irrational feelings. At the start I wanted her to be born and see if we could save her, once she arrived I wanted time to turn back time so I could do something differently. Afterwards I always struggled to find my place in amongst the charities and people doing amazing and wonderful things for their babies. My daughter was stillborn but I didn’t notice a reduction in movements that I could recall, she didn’t have a medical condition which contributed to her death in fact she didn’t have anything wrong with her at all. There was no cause of death found.

At her funeral we asked people to give a monetary donation should they wish rather than flowers to SPRING which was the charity that funded the bereavement suite we stayed in at the hospital. As much I didn’t like the hospital as a whole for what had happened I was very thankful to have a room away from the main maternity unit to have Betty and then spend time with her. I know many do not have these facilities at the hospitals where their babies were born.

Once home, despair came in a different form. Firstly, telling Archie. It was such a sad moment in my life, to tell my little boy that his sister couldn’t come home with us and that she was now living amongst the stars. To this day he has not seen or ever asked to see a picture of his sister. I have to be honest I was too scared to show him, I worried so much that he would take it badly. If he had asked I would of shown him but he never did. This year on her birthday I hope that we will show him and Vinnie her picture. He is already counting down the days to her birthday and now he is 8 I feel it is time.

One of the worst things imminently after her death was deciding if we wanted her to have a post mortem, the thought her little body would essentially be taken apart and dissected made me feel ill. But if we didn’t do it we would forever wonder ‘why’ which is ironic as it was ‘inconclusive’ so we will infact still always wonder this. Another thing which I felt prolonged our suffering was the length of time it took to receive these results. She was born on the 17th October 2015 and the PM was done promptly that week in Southampton, but we waited until the end of January 2016 to have a meeting to discuss the findings. We were told time was needed for certain tissue samples to culture and Christmas and New Year also held up the process but I just felt this was far too long. The wait was agonising, as if you aren’t going over it in your head enough, what you did wrong, the wait, the wait was cruel and unessarary in my opinion.

One of the absolute worst encounters in the formal process of Betty’s death was receiving those results. We had most harrowing experience with the rudest consultant who may have had intelligence but his compassion and common sense was that of a flea and had I been more mentally unstable that day and didn’t have my families support I genuinely think I would of thought about committing suicide. He was so rude, he was dismissive of our child and the medical information he was supposed to be explaining and he ended our meeting telling me that I have a nice family and a son I should be grateful for them and go home to them and ‘get on with things’. If only I had thought to ask him which one of his children he would be happy to loose in light of the fact he had others anyway! It was one of my lowest points after losing Betty.

As she died under the hospitals care a serious incident report was also conducted. We got the results of this in February sometime I don’t remember the date. For months in my despair I trawled medical journals and guidelines, I spoke to a few other loss parents who gave me further knowledge of the questions I should be asking. I was desperately searching for answers. My research ended with me finding out that there was a test missing and the way we found out felt underhand and I was very paranoid as a result. I asked the medical professionals who were apparently doing a ‘through investigation’ what the result of this test was at our meeting, it may have been a key indicator in our case and it was not done. A panel of experts allegedly sat round a table and went through our case step by step, doctors, consultants and experts, yet none of them asked each other for the results of this tests or choose to highlight it had not been done. I am certain they would of talked about it but I also think they decided they would not write it into their findings in the hope that having no medical knowledge we would be none the wiser. Little did they know the journalist in me was busy researching and looking for answers. However, this really knocked me and even now I can’t think or talk about this much as it still feels like a conspiracy but I often wonder if it is despair that makes me feel like this. Maybe it was just a genuine error. But to me there can’t have been that many babies that died that day so in theory they should have been able to go through their guidelines and check list methodically and accurately. What it really highlighted I think, was that they were too busy dealing with ‘live babies’ they were understaffed and over populated the night I went in which is why we waited in the first place.

When I asked them about the test the ‘risk manager’ went to the page of results and there was a big circle on the page where this result would/should be. Myself, Scott and my dad all saw it, she promptly closed the page and said she would have to go back to the unit and ask them about this! It left me paranoid and deeply disturbed. A few weeks later we got a letter apologising and letting us know after investigating ‘the test was omitted in error’. It may have been negative but either way we were denied the knowledge for this careless error. There are a lot of blood tests done after you have a stillborn baby, it felt odd to me that every other test was done on the numerous tubes of blood they took from me, but this one, this particular one was not there.

The consultant thought it would be helpful to provide the analogy that if they had tried to get her out in time if they had noticed a deterioration then there is no guaranteeing what condition she would of been in, she would likely of been brain damaged. There is no consolation in this situation and I feel comments like this to bereaved parents are both unnecessary and mentally scaring.

So much of my despair and mental torture came from health care professionals, it appeared to me and still does from other stories of loss that I read that there is a serious lack of education and compassion in the process of baby death. I know the situation is harrowing for all involved, and I don’t like to criticise midwives, doctors or consultants as they do such a wonderful job everyday at bringing babies alive and healthy into this world. But there are people like me who seemingly fall through the cracks in the system and drown in the unorthodox comments, the substandard treatment and the backward way these things are investigated and conducted all whilst trying to process the trauma of what has just happened. I hope that one day maybe I can make a difference to this. But not now, not over the last 4 years, it’s still too raw, too sad and it damaged me.

For the last 4 years since Betty died I have been concentrating on having another child which I will talk about in tomorrow’s blog post but also re-building mine, Scott and Archie’s family unit. Our little world previously untouched by grief and terror had to be restructured and rearranged all whilst trying to continue with all of everyday ‘life’ that carries on around you. The biggest being paying the bills, going to school, going to work, keeping a house and trying to keep sane.

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(the only picture we have as a family of 4 with Betty in my tummy)

It has taken everything I have ever had to keep going. Everyday I survived I felt stronger, some days now I feel invincible, I know surviving this has made me more resilient than I could ever imagine. Some days I feel like wonder woman, other days I feel like a limp leaf blowing frantically in the wind falling down and blowing back up, just desperately trying to find a place to ground myself, I think that is just what happens when you are going through grief and despair.

I have had to learn to compartmentalise certain aspects of what happened, especially after falling pregnant with vinnie a matter of months after Betty died. I had to let certain things go even tho I wanted so badly to fixate and pursue them but I had a new focus I had to keep this new baby alive, I had to show myself and everyone else that I could do it, that I wasn’t a complete failure and in doing this I couldn’t fight for Betty like I wish I had, wish I could of. It is my hope that one day I can better understand it all and look at the facts and decide if they were right or wrong. But I don’t know if I will ever be able to do it without bias because that raw emotion will always be there. I will always be angry with someone wether that be myself or the NHS for the death of my daughter. But in order for it not to eat me up and completely destroy me I have had to tuck those feelings away for they do not change the situation, they do not help anyone. She will always be dead now, she will always be gone and once the despair subsided I had to start learning to deal with that realisation and start to ‘accept’ (I hate that word because I am stubborn and accepting things is not in my nature) but this is where ‘hope’ came into play and that my friends I will talk about tomorrow when I tell you all about my little Vinnie.

In order to find hope I feel despair is necessary. Riding the storm of emotions is essential to get to where you are going even if you don’t know where that is at the time. Just like crying can be healing and a release, experiencing despair, fear and frustration are all natural feelings and emotions that will guide you to your next stage in your grief, these are the hardest emotions in my opinion but for me they have led to better days even tho at the time I didn’t know where I would end up.

But I am here and able to tell you all our story and for that I am so lucky.

Jen x