2 Months after losing Tobias and I am wondering how people do it. By ‘it’ I mean life. How do people live life after baby loss? I would wake up every morning wondering how to motivate myself, what to work towards now, what should my goals be, what was the point in anything if I couldn’t have my baby with me?
During our journey at Addenbrookes we met some amazing people that blessed us with kind words, friendship and support when we needed it most. Strangers became good friends in seconds. Living in the hospital meant that we met other parents in similar positions, we were able to share our worries together, support each other and even celebrate milestones some others might see as insignificant. When you share your moment of holding your baby for the first time, dressing them in clothes or coming off the ventilator, a ‘normal’ mum just doesn’t understand the feeling. It was so lovely to share in the excitement with others.
On my quest to find other parents once we left NICU I went in search for a facebook page. The ones I came across were always ‘Pregnancy and Infant Loss’. I never understood why both circumstances were always coupled together, it isn’t the same thing. Reluctantly I joined a ‘pregnancy and infant loss’ support group online and I now have a much better understanding of the similarities. However, I still stand by my comment, ‘it isn’t the same thing’. Initially I didn’t want to join these groups as I would have felt awful telling everyone about my hospital stay or how difficult it was to watch my baby cry when some parents never even got to see their baby. But now I understand that not many parents actually care what others put, for most (including myself) it is just a space to share stories, photos and memories with other parents who do not shy away from the subject of baby loss.
With this in mind, I have found it somewhat difficult to listen to the 50 posts a day on these HUGE facebook pages. In the early days I found comfort knowing that others are sharing the same emotions and I am not alone, however, more recently I have found the sheer number of parents experiencing the same thing so upsetting. I cannot believe so many people are struggling with the affects of baby loss. What I once thought was a place where I found comfort in others stories, it now scares me of how common it is for families to be destroyed by baby loss. As a result of this, I have created my own ‘Infant Loss Group’ on facebook, a smaller more intimate group used for building relationships with the few members it has. To share memories and become part of each others journey.
One member of the group has already had such an impact on my journey. We met at Addenbrookes and have been able to meet up again since. We often share difficulties, memories and good times too. We support each other where many others cannot and I am so blessed to have her and her beautiful daughter often in my thoughts.
Tobias is my baby boy, he was born on October 11th 2019. We knew from the moment he was born that there could be a possibility we might have limited time together. Knowing this meant that I wanted to make as many memories as possible.
The Louis Box
The hospital gave us a Louis Box. This box is a box of memory making activities. I would love to know how to thank Louis’ parents for such a lovely idea. The NICU gave it to us a week before Tobias passed away. In that time we made foot and hand prints from ink and clay, read him a story, gave him a special blanket and had an angel to look after him. Inside the box were two identical teddies. One teddy for him and one for us. We display this teddy at the heart of our home and when I look at it I am reminded that Tobias is here with us, every though we cannot see him. The value of this little box of memory making ideas is what I cling to today. I sit and stare at his little footprints and it reminds me of how tiny and precious he is. Although it has only been a couple of months, memories sometimes feel so far away, holding his foot prints close makes me feel like his mummy. It reminds me of how it felt to touch is tiny toes and how soft his skin was and how perfect he was.
Strangely, the memory box has enabled me to get excited about the future. We are holding a tiny packet of wild flower seeds, keeping them safe until spring. My husband made a sweet border for his garden while we wait to have a headstone. We are hoping that when the time comes to take this off his garden we are going to bring it home with us, pace it in our garden at home and grow flowers in it to take back to him. To be able to bring part of him home and take flowers from our home to him is what I am longing for. Tobias never came home, but he is and always will be part of our house and I cant wait to give part of it back to him.
While we were in hospital with Tobias we had conversations that are every parents worst nightmare, most cannot even imagine what it must be like to talk about withdrawing care for your baby’s treatment. I am so grateful to the doctors and nurses that had these conversations with us and helped us prepare for what was about to happen. Obviously I never wanted to have these conversations but it meant that we were able to make the most of every moment we had. The last week we had with Tobias we felt like we were just waiting, we knew what was going to happen. There isn’t a word to describe how it made us feel, we didn’t want to spend our last week with him being sad, we had the rest of our lives to be upset. We both made a very conscious decision to be as happy as we could when we were with him, we needed to make this last week the best we could.
It was my birthday that week and the heartache that took over my body was unbearable. I felt broken. At this point it was becoming almost impossible to hold back the tears and pass any positive energy onto him but I knew I had to try, I didn’t want my baby to know something was wrong. The usual conversation with family and friends about what I wanted for my birthday, I just remember thinking it was such a stupid question… What did I want for my birthday? My baby. Just my baby. I wanted him healthy, I wanted him to be safe and I wanted him to come home with me.
The day came around, I knew that my 25th birthday was going to be the best birthday I will ever have. Even with the heartache and constant lump in my throat I was able to hold my baby close to my chest and enjoy every moment. A birthday present I knew I was never going to get again. Knowing that next year he wouldn’t be here and even though I was stuck in hospital and felt the dreaded anticipation of what was about to happen, it was the best birthday I’ll ever have. I am so grateful to be able to have had this time with him and know how special it would be for years to come. I always wanted to get married, buy a house and have a baby before I was 25. Ridiculous I know. Tobias was due 1 month after my birthday but there I was on my 25th birthday holding my baby in my arms. God has given him to me early just to make my dream come true.
I wanted to continue writing from my previous post ‘The Safe Zone’ but I’m not sure how. It is a long story, you may want to sit back comfortably with a cup of tea and prepare for a long and emotional ride, i’ll try to be as precise as a can.
I loved growing a bump; knowing that tiny baby was kicking my ribs, taking my food and crushing my social life was fantastic. I felt so blessed to have this tiny human inside me for 30 precious weeks… Yes, 30 weeks. 30 weeks and 2 days to be precise.
At our 20 week scan the sonographer explained that she couldn’t see the angle of baby’s feet, I went for a walk, rolled over, and even peed to try and get baby to move position, but with no luck we were invited back for another appointment the following week. When we left I made a smug joke about it being such a funny thing to have to check. Hearing lots of stories about people who have to go back for numerous scan because of baby’s position I didn’t even give it a second thought until the next appointment. I’m so glad I didn’t spend the following week thinking about it, it was like I knew that after this next scan it would take up every inch of my mind for the next 10 weeks; every second of every day.
Being completely unprepared I waltzed into my scan at 21 weeks and recieved the devastating news. Baby did not only have club feet but also club hands. Now looking back, in the grand scheme of things this day was nothing! Life would be have been difficult but I would do anything for the complications to have stopped there. As the weeks passed and scans came and went it seemed every scan there was something new to get our heads around. We were referred the Luton and Dunstable hospital to see a speciallist in fetal medicine. This man changed our life, gave us news no parent ever wants to hear but I cannot thank him enough. He made it seem like we could do anything we wanted, he was very clear and explained what he could see on the scan. He was able to give an opinion which up until now no-one wanted to do. Although opinions are often frown upon in medicine I needed to know the chances this baby had, what a professional thought. He explained that the outcome was uncertain, he asked us if we would change the outcome of the pregnancy. If we would consider an abortion then finding out as much as possible maybe more tests would be done, however, these would be invasive and potentially dangerous for myself and the baby. Because we never considered ending the pregnancy we decided we would just take our chances and pray for the best possible outcome.
It was very clear that this baby had more than club hands and feet, his movements were becoming reduced and by 28 weeks I could hardly feel HIM at all. The last 2 weeks of my pregnancy seemed to be appointments every day, checking babys heartbeat and monitoring the size of my bump. I had a large bump (which I was initially very happy with), it turns out this was because baby wasn’t swallowing as much as HE should do. I left L&D with a lump in my throat and a list of items to pack in my hospital bag. Baby was going to arrive very soon, I had to try and be as prepared as possible.
Then it happened. The very next day I went to A&E with chest pains. It turns out now these chest pains were actually signs of early labour but nonetheless because they were chest pains I had to sit in A&E and wait my turn to be seen, spending the night on a trolley before finally being admitted to the maternity ward. Of course, as soon as I was admitted the pains almost disappeared. I spent the next 2 days in the maternity ward begging and pleading to go back home. Late in the evening they were monitoring the baby (as they do every 4 hours) when his heart rate dropped. I was taken to the delivery suit for further monitoring and it happened again at 5am. 5am wake up call for my husband!
It was a scary few hours with no explanation. In all his scans the only positive comments were about his heartbeat, and now his heart rate is dropping, nothing is going right anymore! I sat on the monitor for the duration of the morning until 10am. At 10am, my waters broke. Knowing baby was going to come early wasn’t any surprise so we were relatively calm at this point, glad our baby would be here soon.
I couldn’t stop thinking about what he would be like when he came. Would he look like me or his dad? What colour eyes would he have? Shall I call my mum to be here when he arrives? Where shall I take him on his first outing? How shall I introduce him to family or friends? And of course, my husband turns out around, deep in thought and says ‘It’s going to be a long day, I haven’t had breakfast. I’m going to get a McDonalds do you want anything?’ Do I want anything!? I’m about to deliver a baby and he asks if I want a McDonalds! (I wont tell you what I said) but anyway, off he went to get his McDonalds.
Within a couple of hours we have met what felt like everyone in the hospital. It become clear that this baby was going to be in need of all the help he could get. As the risks became clear I was wheeled in for an emergency c-section. Within a few minutes a whisper over my shoulder said that the baby had been born and they were trying to incubate him (to you and me this means he wasn’t able to breathe by himself and needed a breathing tube). After many attempts, we were taken out of the room and put into a bay, where we prayed and prayed for our little boy to make it through. I prayed repeatedly over and over again just see and touch him. All I wanted was to be able to see and touch my baby. People rushing past into the delivery room and constant messages from the midwives to update us with no news for 30 minutes. Until they finally got it in! I burst into uncontrollable floods of tears. My prayer was answered.
My first touch
In our private delivery room, he was brought to us. We named him Tobias. Tobias means ‘God is Good’, he had been so good to us. He gave us our most precious gift and answered our prayers. I reached out to hold his tiny hand. The little baby was so delicate and fragile, he had fought so hard. A quick exit up to the ward to attach the tube to a ventilator machine meant that I would no longer see him. Family brought me photos and share news about my baby I felt so far away from. Upstairs but it felt like an impossible distance.
After a few hours the ANTS team came to assess Tobias. The midwife came to explain the words I will never forget ‘They will decided 1 of 3 things; to take him to Addenbrookes, to take him to L&D or to leave him here for as long as he can so he can spend time with his Mummy and Daddy.’ Wow! My heart sank.
You will not be surprised that when they said they wanted to take my baby away I was over the moon! The midwives were baffled as to why we were so happy for them to take him away. This meant they thought he had a chance. I was happy for him to go anywhere he needed if it meant giving him a chance. Tobias went to Addenbrookes, NICU, The Rosie, Room 5. This is where Tobias lived.
Tobias lived his whole life in that little room and wow what a blessing it was. That room kept my baby alive for 51 days. 51 days we had with a baby who never took a breath on his own. We stole 51 days with him, we knew we should never have had. We are so thankful for the time we had and to every person who became part of our journey. Our journey would never be long enough and we will never lose the whole in our heart left by Tobias but we will have memories that will last forever.
Up until 20 weeks I had the best pregnancy. From not really knowing what to expect and having history of being quite a sickly person anyway I presumed I was destined to have many mornings spent with my head in the toilet or in bed having run out of steam, however, much to my surprise, that was not the case. I had a very healthy start to my pregnancy. The best part without a doubt, was able to eat WHAT I wanted, WHEN and WHERE I wanted (even a roast dinner for bed for breakfast) no-one would dare to say anything to a pregnant lady who had barely even opened her eyes.
One thing I learnt from pregnancy is to embrace it! Embrace the mum tum that starts to appear and make you look like a a hippo bobbing on the swamp. Embrace the gums bleeding, hair falling out, spotty skin and big bags under your eyes, you know why? Your body is doing something amazing. Growing a tiny human means that there isn’t a lot of goodness left for you. The hormones, the greasy hair and tight clothes are all signs of your body making changes to give your baby the best it possibly can. Your body is incredible for even beginning a journey into pregnancy, within the first few days your body has gone through so many changes and we don’t even know it! Finally, listen to your body and if you have cravings that wont go away or need to nap 3 times a day, you do it, it is probably your body telling you what it needs!
I don’t know if you have been pregnant and wanted to keep it a ‘secret’ before. I use the word ‘secret’ in inverted commas because I still to this day do not know 1 single person who has wanted to keep pregnancy a ‘secret’ and they have actually managed it. The first 12 weeks felt like eternity.
After a grand total of…. 3 days. Yes, 3 days, we had told pretty much everyone we had seen. Our family knew we were expecting, our close friends were in constant conversation asking about me or the Jelly Bean that was growing inside me, they wanted to know all the gruesome details that come with pregnancy.
By the 7th week my clothes were very tight and I had to resort to leggings on most days. I was bouncing around in my leggings and the most baggy tops I could find with a spring in my step, a smile on my face and camouflaging my tiny little Jelly Bean pouch that my work colleagues knew nothing about. I loved that work was my place to keep my little secret, only I knew about my little Jelly Bean, it was mine and only mine. I was convinced I could keep the little bean a secret at work quite easily for the whole 12 weeks. I couldn’t imagine having to break the news to work colleagues if we didn’t make it to the ‘safe zone’ so i thought it was best to keep it a secret. That is the rule we made up in the end. If we wouldn’t be want to talk to them about a miscarriage then don’t tell them about the pregnancy until we were ‘safe’. I don’t think anyone at work had noticed my gradual change in clothing or the smile that kept subconsciously creeping onto my face when I thought about having a big bump in a few weeks time. I was covering it up quite well until the fluttering, butterfly feeling in my tummy turned into something more, something worse.
The morning sickness, caught me completely off guard. I had felt amazing! Some would say I was glowing. But the morning sickness, oh dear! I couldn’t move, I didn’t know what to do. I rang the only friend I had told that had had a baby and told her how awful it was. If you’ve ever had morning sickness you will know the feeling deep, deep in your stomach. If you move to quickly, breathe out of rhythm, of the wind touches your face on an outwards breath you could thrown up at any moment! My friend, very sympathetic as always, told me I would be OK. It wouldn’t last long and morning sickness usually calms down after 12 weeks, all I have to do is eat. EAT. That was the last thing I wanted to do!
However, most of the time she was right and I felt so awful I would have tried anything she told me. So I managed to get some sugar coated cereal next to my bed and eat. WOW, she was good. Eating made me feel better instantly. Every morning I would eat a good portion or dry cereal before even leaving the bedroom. Somehow it worked and I managed to stay in work and just keep that trusted cereal by my side all day, every day closely tucked away in my desk drawer where no-one could see it.
That was it, pregnancy symptoms over! Everything else was fine. God had been so good. Falling pregnant had been so easy, the first weeks had filled me with so much joy, I was sure that my easy ride would come to an end soon. (No-one has a pregnancy like this!) I began to ‘show’ much earlier than I expected (which I loved). As I approached what we thought was the 12th week of pregnancy the excitement began to build even more.
Thinking it was the 12th week, my husband and I went along to our first scan. That when we saw our funny little jelly bean bouncing around in my tummy and the sonographer (scanning person) broke the news that the 12 weeks we had been longing for to be over were actually only 8 weeks and we still had a few weeks to go before we were in the ‘safe zone’. This felt like the longest 12 weeks of my life!
Still, we left with a smile on our faces as proud as punch. Knowing this tiny little jelly bean was growing healthy was all we needed to hear. We googled the statistics (which I know you shouldn’t do) as we had to find out how ‘safe’ we were. It turns out if a healthy heartbeat has been at 8 weeks the chance of an early miscarriage drops considerably. Because of this, we managed to convince ourselves it was fine to tell the world! I went to work to tell my boss and Jake did the same with his. We told extended family and some more friends, the only people we waited to tell was work colleagues and the crazy world that is social media acquaintances.
The next 4 weeks felt like eternity. I was still munching discretely on my sugar coated cereal throughout the day and deep breathing when needed but I was certain I had covered up my little bump leading up to that 12 week scan.
Finally, the day came for scan day! What a magical day it was! Seeing the legs on this little beans, kicking and waving around, its arms moving, and every few seconds it would completely flip upside down and confuse everyone. I never knew which end was up and which was down! We managed to hear its tiny little heart beating and everything was healthy. I remember lying back on that very uncomfortable hospital trolley, in the dark silent room, I couldn’t wait to leave. I was wishing for this day to come round for so long, I couldn’t wait to see our jelly bean again. I finally got to see it, and then i couldn’t wait to leave. I couldn’t wait to leave so I could ring my mum, my work, my friends, and everyone on social media. I wanted to tell everyone that we had a healthy, strong baby and we were FINALLY in the ‘SAFE ZONE.’
Well, I don’t know where to begin or how to make this blog less than a 400 page book! I guess I’ll start from the beginning…
My husband and I were very honest with each other regarding our plans for the future right from the word ‘go’. When we first started dating it became apparent that we both were on the same journey and the end destination was always the same, TO BE PARENTS. We dated for 18 months before moving in together, 18 months later, we got engaged, 18 months later, we got married and finally bought a property of our own (which is never easy)! It was made that little bit harder as neither of us were willing to compromise. We wanted a home which we could have a family in. It had to have a garden, garage, driveway, 3 bedrooms (at least), be in a village or town with a shop and most importantly be close to family!
As you can imagine, being 22 and walking into an estate agents asking for all these things was not easy. After viewing over 10 houses we managed to find our future family home. It was perfect, everything we ever wanted. The day we moved in I was imagining which room would be the nursery, how we could extend to have the 4 children we desperately wanted and planing the layout of the garden to make room for a swing or slide. To say I was excited would be a huge understatement.
It was definitely a ‘dooer-upper’ but it didn’t put me off!
5th April 2019.Baby Jackson is on its way!
The first 12 weeks of pregnancy I remained very aware that this little bundle could disappear at any moment. Having a couple of close friends who unfortunately experienced early miscarriage made me extremely cautious and I tried so hard not to get excited until the 12 week scan.
The 12 weeks scan came around and I could not believe our luck, there is was, Baby Jackson, its little heartbeat loud and clear. Our plans were all falling into place, I couldn’t believe how easy it had been for us. God had been so good to us, I felt his hand on us.
Join me… I created Puzzle Pieces of my Heart to bring together parents who are learning to live with the loss of a baby. Creating a blog maybe a different way of approaching the subject everyone seems so frightened to talk about. People often shy away from a topic so awful but actually it is really tough to live life after a loss. We need to talk about baby loss more, support each other and guide one another through the difficult days. Every day is bringing new challenges (some of which shouldn’t even be considered as a challenge) but everyday mothers of angel babies put one foot in front of the other and achieve what can only be described as a miracle; living life as a mother but without her baby by her side.
Living life after the death of my baby is so difficult. No-one knows what to say or do around you. They want to talk about your baby but do not mention his name for fear of upsetting you, they want to see photos of him but are unprepared for what the images show, they want to hear stories about the time spent with your baby but do not know how to ask so everyone carries on like nothing ever happened. Not anymore!
This is a safe place to take that step, one step in front of the other, one moment at a time, to live our lives with our babies as a piece of our heart. To reconnect and find You again by doing the things you love.
I chose to write this blog as a way for parents to come together, share the same interests and connect with the world that once felt so full.
What You Should Expect From Puzzle Pieces of my Heart.
I am aiming to make your experience here as supportive as it can be. I want you to get five key things from Puzzle Pieces of my Heart:
Discuss and share topics and conversations that complete my heart, and hopefully yours too.
Connect with other parents who are living everyday with their babies in their hearts.
To discuss the daily challenges and find ways to overcome them together.
The share our hobbies and interests. What do we do in the quiet moments to fill our hearts and share what we love.
To welcome you into my crazy life. Join me on my journey to finding me again!
I can’t wait to share my journey with you, please follow my blog to hear about my progress, tips and lifestyle changes.
This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.
This is an example post, originally published as part of Blogging University. Enroll in one of our ten programs, and start your blog right.
You’re going to publish a post today. Don’t worry about how your blog looks. Don’t worry if you haven’t given it a name yet, or you’re feeling overwhelmed. Just click the “New Post” button, and tell us why you’re here.
Why do this?
Because it gives new readers context. What are you about? Why should they read your blog?
Because it will help you focus you own ideas about your blog and what you’d like to do with it.
The post can be short or long, a personal intro to your life or a bloggy mission statement, a manifesto for the future or a simple outline of your the types of things you hope to publish.
To help you get started, here are a few questions:
Why are you blogging publicly, rather than keeping a personal journal?
What topics do you think you’ll write about?
Who would you love to connect with via your blog?
If you blog successfully throughout the next year, what would you hope to have accomplished?
You’re not locked into any of this; one of the wonderful things about blogs is how they constantly evolve as we learn, grow, and interact with one another — but it’s good to know where and why you started, and articulating your goals may just give you a few other post ideas.
Can’t think how to get started? Just write the first thing that pops into your head. Anne Lamott, author of a book on writing we love, says that you need to give yourself permission to write a “crappy first draft”. Anne makes a great point — just start writing, and worry about editing it later.
When you’re ready to publish, give your post three to five tags that describe your blog’s focus — writing, photography, fiction, parenting, food, cars, movies, sports, whatever. These tags will help others who care about your topics find you in the Reader. Make sure one of the tags is “zerotohero,” so other new bloggers can find you, too.
Puzzle Pieces of my Heart 