Tuesday, 9 October 2018

Life after Baby Loss

Please be aware there is a small shared blurred photo of our stillborn baby shared at the very end of this article underneath the baby loss awareness week banner.

[Print from @kitty.makes - Stone from @my_story_stones_rock]

I never used to understand before when couples who had lost a child or a baby or struggled to get pregnant would see their marriage or relationship fail following. I used to think surely after going through that you would be stronger than ever and need each other even more?

It is not until you have experienced it yourself that you can see the ways in which emotions and feelings can break everything you knew before and build up walls you never saw coming. 

I thought I was ok. I thought I was coping well considering. I thought I had no time to break down because I had my other children to look after and be a mum for. I thought I had hope of a healed heart through a rainbow baby in the future and I thought nothing would break me or us. I declined counselling at the time from the bereavement midwives as I generally thought together we would be fine and get through this. What I can really recommend is never decline help and support, it might not be until you go to your first appointment and it all comes flooding out that you realise how much you did need to speak to someone about it all. 

What I hadn't considered is my way of dealing with the loss of my baby was to shut myself down to further hurt. My mind tunnelled into as long as Logan and Evie are ok then I'm ok. I didn't consider how my focus might distance me from my husband and I didn't see myself drowning in a depression I thought I had avoided. 

Just a week after I had given birth to our angel baby, Martin surprised me with the news he had booked us onto the family trip to America to see our families that 7 of our family were already booked to go on in October 2018. It would be our something to look forward to, a trip we had previously declined joining as we would have a 4 month old baby and a new car to buy. 

The doctor had told me we would need to wait two cycles before trying again for a baby to ensure everything was back to 'normal' and we had a positive chance to conceive a healthy baby. Due to our holiday, we calculated we would need to leave at least 3 cycles to ensure I could still travel on the holiday even if pregnant. I even made a spreadsheet of dates to help me focus on the wait. I'm glad the doctor told me to wait cycles. I know otherwise I would have wanted to jump straight back in to try and get pregnant as soon as I could. 

I used these months to focus on getting in the best shape I could to get pregnant again. When Evie was 13 months old I made the decision to stop breastfeeding her after a nasty week of tonsillitis and the suggested antibiotics were not suggested alongside feeding. I was terribly sad about stopping as she hadn't show any signs of weaning and I was quite happy to continue, however I knew before it had taken us much longer to fall pregnant while still feeding and I wanted to gain back control of my period dates and cycles and subtracting any added hormone changes was my way of ticking something else off the list. It helped that I had suffered days of horrible fevers and feeling the most poorly I had in years to say give me the pills and I will stop feeding. Luckily Evie was completely fine with not feeding anymore and we still had that close comfort of co-sleeping and she (just like her brother) would have her gentle nipping of my skin as a comfort for falling asleep. 

I had also by this point been taking anxiety tablets for nearly a year to help manage my phobia relating to illnesses and sickness. I had been having CBT since the October and I had personally felt I'd come a long way in managing my panic. Maybe going through what we did and losing our baby put things in perspective for me but I no longer felt it weighed the most on my daily brain thoughts and so I made the decision to come off the medication. I know they are safe to take while pregnant and they were not the cause of anything that happened with the baby we lost but in my head I didn't want anything in my body that wasn't natural. 

Things seemed to be going ok for us. We booked Butlins for a week in May and Martin booked Legoland for Logan's birthday in June. I enjoyed a few drinks out with friends and overall felt I was coping quite well and had a control on life. 

April came around and we could finally try for our rainbow baby. I must have asked Martin many times if he was sure he was happy to try again and that the time was right and we both agreed. 

Our niece would be born a week later and be my first upfront situation where I would have to deal with a baby being born that I couldn't avoid. A couple of friends had babies in the months previous and I had enjoyed newborn cuddles and been ok. When we walked into the hospital room to visit her for the first time I cried at the sight of her all wrapped up in the hospital blanket. I was so happy to see such a gorgeous little baby but then all of a sudden it felt like an enormous weight came down on me about how precious she was and my arms felt so heavy with loss of our baby. I enjoyed many cuddles with her those first few weeks and enjoyed settling her and having her close but looking back I can see how the cracks in the wall I had built up were starting to show from April. I really missed my baby. 

The weight of the last few months would start to come crashing down on me and I would start to spend everyday feeling overwhelmed by life. At Evie's one year check I had raised concerns that I didn't think she was hearing completely as she never startled or turned to look at you when you spoke to her, she would then score low in her physical check at one year old and we would be referred for follow up. At the follow up more concerns were raised regarding her development and I would end up breaking down in front of the health visitor after nodding along to everything she had been saying we could try. I would end up holding her tighter and promising myself I would do anything and everything for her and to me she was just perfect. It would be the start of my sole focus on just my children and the start of my shut down into a sole player in our previous teamwork partnership of marriage and parents. 

I'm not sure why this happened. Martin has always been an excellent step-dad, Daddy and partner and always told me we could get through anything together. I don't know if it was to do with me feeling so out of control with everything that I was trying to gain my control by focusing just my brain on the outcomes I wanted for everything but somewhere that month I distanced myself as a partner and I saw nothing but my children. 

Evie's first hearing test would see her fail 3/4 frequency sounds and confirm she couldn't hear most day to day speaking and noise. I sat in that room with her on my lap feeling my heart break at hearing those sounds and seeing her show no reaction to them. I saw as the lady would try the test repeated a few times to see if it made any difference. I tried not to cry and wondered what I'd done to deserve such a crappy year after such an amazing one. I listened to the possible outcomes on what could be the problem and the realisation we would have to retest in 3 months and until then we couldn't do anything but encourage her to engage in sounds and speaking the best we could through eye contact and signing and to continue talking to her like she could hear. I would have to start explaining to everyone that she couldn't hear them and she wasn't just ignoring people and seeing her same age friends come out with words and sounds that she wasn't. 

We would however get our positive pregnancy test on the 15th April 2018 for our rainbow baby.

You would think this might have solved a lot of things and brought us together as a family and happy but the memories of previously took away a lot of the happiness of a positive test and the milestones to reach started. 

As soon as I found out I was pregnant I phoned to get an appointment with the midwife so I could discuss everything and feel like there was a plan. However I was told I couldn't have an appointment until 9 weeks but I could have a telephone call from the midwife. I would voice my concerns regarding what happened last time and asked again what the plan of action would be this time - an early scan for starters? 

However apparently because our miscarriage was chromosome related, it was highly unlikely it would happen again and this pregnancy should be treated as normal. 

I couldn't wait 8 weeks to find out if my baby was ok so we revisited a 4D baby at 8 weeks to get a peak. Much to our relief, there was a little baby with heart beating and measuring right as it should. 

While we should have been caught up in the whole magic of a new baby - I was very much still isolating myself. Martin had been doing a lot of overtime and I continued to feel overwhelmed with everything at home, looking after the children, attending various checks for Evie and worrying about this baby in my tummy and how to keep it there. 

I was not myself, I was properly an uptight moaning person who felt very out of control with everything and not really sure what to try and get a grip on first and therefore failing at everything in the meantime. I remember asking Martin over and over was he happy we were pregnant and was he looking forward to it. 

I had my booking appointment with the midwife and it was agreed that they would try and get us in for our screening test the earliest possible which I believe was 11 weeks 4 days. Having to talk about what had happened previously was hard, it would be the start of having to discuss our baby so open and matter of fact. The midwife remembered me, she remembered having to turn up at my house unexpected to deliver that news and she said she remembered getting the news to cancel my next midwife appointment because our baby had died. 

We had our trip to Butlins in May and while it should have been a happy family time, we were distant as a couple and I was consumed with worry about everything. On the Tuesday night on holiday I would go to the toilet in the evening and find bright red blood and pass a huge blood clot the size of my palm and continue to bleed until the morning. I was 10 weeks pregnant. The bleed brought back painful memories of delivering our sleeping baby and I cried all night thinking I must have passed the baby and was having a miscarriage. I didn't feel like Martin was as concerned as he should be at the level I was and at the time I felt like I was dealing with it all on my own. He is naturally more laid back than me and has the approach of 'we can't do anything about it regardless of the level of worry'. 

I wasn't in any pain so I felt like A&E wasn't the answer. All I could do all night was continue to check the level of bleeding and read a million other google stories on forums all night long. Where as last time I had dark blood, this was the 'worst' bright red blood that nearly everyone concluded was a miscarriage. 

To make matters worse, we were on holiday with friends and hadn't yet told them about the pregnancy. 

The next morning I had to wait until 9am to phone my local community midwives to find out what I needed to do. I was stressed and I was emotionally torn. Today was the day all the Teletubbies were going to be out for a photo and they were Evie's absolute favourite. Martin headed with the kids to the main centre and I hung back and sat on hold for half an hour to speak to a midwife. When I finally got through, they informed me I would need a scan but that they couldn't arrange it from there end so I would need to find out the nearest hospital that had an early pregnancy unit and phone them to book in. 

At this point it was getting very close to the time of the photo and I really didn't want to miss out on seeing her face. I started to walk towards the centre while goggling nearby hospitals. I finally found one and got through to their switchboard and asked to speak to the early pregnancy unit. They would tell me they could see me but I would need a referral from my local midwives first. You can imagine my stress levels at this point. Back on hold to my local midwives for another half an hour all while lining up to meet the Teletubbies. 

I finally got through and darted out the queue to find a quiet corner to explain my situation again. They confirmed they would phone the hospital and I gave them the details and now I would have to wait for an appointment. Satisfied I had at least got somewhere, I managed to join the others back just in time to meet the Teletubbies. 

If there is one thing I've learned through the last year is how to put a smile on in front of your children even when you are crashing down inside. It was always important to me to never cause them more upset then required and to help protect their childhood innocence as much as possible. 

We got a phone call later that day to say they had no more appointments left for today but could see me tomorrow at 10am. It would feel like the longest day of my life walking around not knowing if I had lost our baby or not. The only comfort was I had stopped bleeding which I tried to see as a positive, I thought if it was a full miscarriage then I still would be but it didn't mean our baby was still alive and I needed to see that to be reassured. That evening we messaged our friends to update them on everything and to let them know we wouldn't be about in the morning. They were lovely and did offer to have the children for us but I wasn't sure how Evie would be and so we decided I would go to the hospital by myself and Martin would stay with the children. 

The next day I cried in the queue for the hospital desk in a strange hospital I had no idea of the layout or where I was supposed to be. Women were checking in for their antenatal appointments with big bumps clutching their notes. The queue took forever and I kept trying to distract myself with anything I could to prevent the tears from falling down my face - I read every leaflet on the wall and stared at all the ceiling tiles while I waited to get to the front. The lady directed me round the corner and as soon as I sat down in an area clearly marked off for potential upset the tears came crashing down. I was alone in a strange hospital away from home and I was about to find out if the baby that I was holding all hope on healing me was still alive in my belly. 

The midwife came out and asked if I was ok. I managed to cry something about being on holiday and a bleed and not knowing if the baby was ok and then kept saying I'm ok, I'm ok. They were really lovely and got me in and explained we would have a look. As soon as I saw that screen and that heartbeat I cried so much that it made the baby jiggle about in my stomach and I had to calm down so they could put the monitor back on again. I remember thinking my goodness you are ok, you survived, maybe luck is finally on our side. 

They couldn't find a cause for the bleed at all that was obvious on the screen. I'll be honest it still worries me now, especially because the smear test I had before I fell pregnant came back as inconclusive and I needed to be retested but couldn't because I was now pregnant. I do remember though when she did the test that it made me bleed, so they have said it could be the blood pooled there and this was the cause of the clot. 

I messaged Martin straight away to say our baby was alive and was ok. 

I held onto my babies even tighter that night and hoped our luck was going to change. 

Our screening test and scan came around the following week and we enjoyed seeing our baby on the screen again. We had our scan on the Monday so I'd hoped we would be lucky enough to get our results back quickly. They were great in marking on our bloods regarding our previous loss and the reason why and we ended up getting a letter in the post on the Wednesday to state baby was low risk for any chromosome issues. 

After this we finally started to share our news with everyone of our little rainbow. They had an adjusted due date of the 20th December 2018 and so would be our rainbow and hopefully our Christmas baby. They were originally due the day we found out we had lost our other baby. I find comfort in thinking this baby could be born the same day as our other baby but certainly helping to heal that memory of leaving the hospital without a baby at Christmas time. 

Charlotte did us another lovely photo to share our news with everyone and we told Logan who was so excited again. 

The month of June that followed however was the most strained. It was the hardest for us as a couple even though we had received the screening results back that baby had a low risk for any chromosome issues and we got to share the news with everyone we were expecting again. Our original due date was the 20th June - moved to the 27th June and my mind was so foggy this month that I forgot so many things - I had hardly prepared birthday presents for Logan's birthday on the 16th, I got his card but forgot to write it and even though I had bought a paper first wedding anniversary gift weeks ahead - I misplaced it in the home and couldn't find it and then I forgot to get Martin an anniversary card. I was angry at myself because I felt me slipping away and I was losing control of all the things that I was usually on top of and good at. I hardly wanted to go out and do anything and the heatwave we then experienced made it even harder to venture out as I was just exhausted. I felt myself feeling overwhelmed by being behind with everything in the house but at the same time when Evie did nap - I couldn't bring myself to find the motivation to get anything done and I just sat there thinking about all the things I had to do. 

At one of my routine midwife appointments I noticed they had all my blood results on the screen in date order and I asked if they could see our full results back from our testing on our lost baby's placenta cord. The midwife couldn't see on the screen but said she was going to the hospital later and would look in my file notes. I got a phone call later that day to say our baby had been a little boy - just like I always thought he was. I found peace with this news as I felt it confirmed what I thought and I now liked to remember him as our little baby boy. However this news for Martin was more heartbreaking and we reacted different to learning this. Throughout our whole baby loss journey we have both experienced things differently and reacted different to news, days or memories. It just goes to show you can't take one care path and apply it to everyone as we all grieve in different ways. 

The anniversary of baby's due date came and we bought sunflowers for him and visited his grave as a family. It is so strange after 6 months since he was born that we should be holding a newborn baby in our arms at this time. I imagined the heatwave and the fact I should be on maternity leave and how clingy Evie still was with me and it was hard to imagine we would have had another little being slotted in our lives right now. After the loss of a baby it is strange how after a few weeks pass and the physical evidence disappears that it really was all just future time predictions of what you thought your future and life would be at a certain point in time. We had booked up so many things that we wouldn't have if baby was born that it was strange to imagine we should have a newborn. The due date anniversary kind of glazed over me and I didn't feel a particular extra grief that day compared to my usual missing of my baby, maybe because when he was born we had already erased all those future dates and we were already missing him every day. 

With Evie we had an early gender scan at 16 weeks with a 4D baby and I was keen to do this again for this baby - any excuse to check in on them really on a scan! I booked the scan for the 30th June but we must have had a communication calendar breakdown because I didn't realise Martin was going to be away for the weekend visiting a friend. I should have rearranged it but if I changed the date I would have had to wait longer and I really wanted to check in on baby, I had been holding out for that date, so I decided I'd go and find out and then get a reveal balloon for Logan and Martin to pop together so it would be a surprise. 

My mum came with me to the scan, I choose not to take Logan for fear something may be wrong and I'd have to explain it to him. Everything however was great and baby showed off lots of kicking and movements and we got to hear her heartbeat out loud for the first time. I wasn't taking any chances this time round and I requested to purchase a heartbeat bear with her heartbeat on. I only ever got to see our baby boy's heartbeat on the screen in sound wave format rather than hear it and I'm sad I won't have that recording of his heart beating. 

I was actually clueless through the scan if baby was a boy or girl! I didn't think it was obvious at all, so at the end when she passed me a bag with some pink booties in I was generally shocked! 

I kept the news secret until the Sunday afternoon when Martin was due back and Logan. Some of our family came over to watch the reveal as well. 

Evie is crying in the video because she had just tried to climb into the paddling pool fully clothed and the wind was up that day so for a split second Martin and Logan couldn't even tell what colour the confetti was inside! It isn't a perfect video but it was fun revealing to them all that we were having another little girl.

Now all we wanted was a healthy baby after the loss of our other baby and I certainly didn't care if it was a boy or a girl this time round and when I found out another girl that would be 2 years younger than Evie I had visions of twinning girls growing up together close in age and I was smitten with the idea. I felt however that Martin was dealing with some emotions after finding out the baby we lost was a boy and this baby (our last baby) would be another girl. He has always treated Logan like his own son and of course just wanted a healthy baby but I think sometimes when you have in your head what gender your baby would be then you do struggle when you find out its the opposite. 

I spent the next week feeling a mix of emotions of aloneness in my joy and anger at him because I felt he wasn't fully excited about our new baby girl. Of course this is my own impression of the situation and properly the pregnancy hormones talking but I felt very protective all of a sudden of the baby girl in my belly. Logan slept every night with the heartbeat bear of his little sister and we would listen to her heart every night before we went to bed. I felt so alone at what should be such a happy time and I kept constantly questioning if Martin was excited for this baby or not. 

July that followed was not great for me. Everything was angering me, things that I would normally scroll on by and ignore if I didn't agree with such as other peoples parenting choices would play on my mind for days and days and I couldn't get them out my head. I would replay conversations over and over and it would nag at me constantly. I felt like people weren't appreciating their children as I longed for my lost baby and even though I'm no stranger to sleepless nights (Team no Sleep member 5 years plus) or struggles that come with children - I suddenly felt like I couldn't moan or complain about anything and became really defensive when people would tell me things like I needed to get Evie out of my bed or I needed to stop doing this or that because my children would forever cling to me. What I felt like screaming was they can cling to me for however long they wish because I should be holding another child in my arms and I couldn't and so my children could have me whenever and wherever they needed and they would never be left to cry or feel alone or feel sad. I felt so strongly that I would often do near all nighters by myself to ensure Martin wasn't disrupted with his sleep and I would never complain about it either. The only thing that helped me through was the strong power of emotions seemed to give me the gift of surviving on very little sleep. 

By the end of July things needed to change and Martin and I had a very big heart to heart about a lot of things that had been going on in our lives. We realised that the loss of our baby had effected us both in more ways than we realised and it had broken down our love for everything we were before and made us forget what we were like as a happy couple and one full of hope and dreams. We had to make big changes to save our marriage from falling apart and we both had promises to keep to make things right again. I distanced myself from all the things that were causing me anger and upset and I tried to focus back on just us as a family and not worry about other people and what they were doing. 

Martin showed he was truly excited about our baby girl and things were then back to how they were during my pregnancy with Evie when we would lay and feel her kick in my belly and spend time talking about what she would be like and what we were looking forward to. We put our phones down more and had more family time together and tried to calm our hectic schedules down a bit so we felt more relaxed. 

I learnt then that however strong you think you are as a couple that no one truly knows these emotions and the pathway you go down until they experience them. We had previously had 3 years of love and excitement, baby news and marriage, a new house and the togetherness of our new family. We were strong because we had been fulled by happiness and love and dreams for the future. When we lost our baby it was the first time we had experienced bad news and our dreams shattered and we lost ourselves with it all and the year that followed trying to regain that happiness and find confidence again in believing in dreams and the future when we had been betrayed before by it. 

I'm so happy to say that from August things were better. We had been reminded of our love for each other and our family and what we wanted from life. We still miss our baby boy so much and we will always have worst days and still cry for him but we will always remember him and he will always be a part of our family. We know we are a team and we will rise through this with everything we have learnt and all the mistakes that have been made and be a better family for our children and our rainbow baby girl. 

I recently reconnected with the bereavement service and they offer a 'rainbow clinic' for those who have experienced baby loss and now pregnant again. It was great to go in and speak to the midwife about how we had been feeling with this pregnancy with so much anxious thoughts weighing over us for this baby to be delivered to us safely. They were amazing and told me I could go every week if it would help give me that reassurance needed. I often find myself panicked that if something happened to this baby that I would truly lose it all. Nearly having our family break this time round has made me anxious with the feeling I could lose everything at any point. For so long I was holding out everything on our rainbow baby to heal us but what I have learnt is you need to talk about feelings, about grief and about emotions first. You need to address these things to build strength and build back the foundations before you welcome a rainbow baby to the equation. 

My eyes have certainly been opened the last year as to being more aware of baby loss. I'm sad it has maybe taken me losing a baby to gain entry into that 'club' as such of people wanting to raise awareness of it and get more people talking about it. I know sometimes its hard for people to see and hear and I'm the same in relation to not knowing what to say when someone experiences a death in their family due to cancer for example. What I have learnt is that ignoring them or the situation is not the answer and even though it might make the person upset or cry that you should ask about their lost one or ask for their name or something about them - what they remember - anything - they will properly love the opportunity to talk about their lost one. 

So many people think that giving birth to a baby prior to their full term gestation must be horrible and while the situation itself is - if you ask that person about their baby they will say they were perfect. Our little boy was small and precious but he was perfect. He had the tinest little formed limbs and hands and feet and the most precious little nose and mouth. I thank those few people who messaged me and asked to see a picture of our baby, for us to share him with you also. I thank those few family members who remember him, talk about him, visit his grave - especially my dear Grandad who tided it all up for him at the start of Summer. I understand there will always be some family members who won't acknowledge him, wouldn't ask about him and those special dates of his birth and due date will pass by them. I get that its not everyones cup of tea to talk about a baby that has died or that was only 13 weeks but he will always be our baby and I will continue to always talk about baby loss and raise awareness of it and help people through it.

Whether you choose to share your loss on social media and talk openly about your lost baby or if you keep them close to your heart and within your immediate family is a personal choice. Since my start of motherhood, I have found so much support and help via instagram and social media. I've made friends with people I've never met and I've offered support and been supported by those people. It always fills me with happiness when someone can tell me - thank you so much for your message, it really made me feel better/helped me out/ improved how I felt. Therefore I will continue to be in the public eye with my story and my life because it is always worth it if you can help just one other person. However you can help by simply liking a baby loss awareness post or sharing one of the educational videos being shared this week regarding emotions and how people have dealt with baby loss. 

I'm sharing my experience of life after baby loss on the first day of baby loss awareness week 2018 and on the 1st anniversary of getting our positive pregnancy test for the baby boy we later lost on the 22nd December 2017 and who was delivered earth side on the 30th December 2017. 

Baby Humphreys - Loved always