Hello everyone! It may come as a surprise to you but most people who have lost a baby are supported by charities. This may look different depending on your location and circumstances but I would love to share with you some of the charities which supported us and why I am asking you to help support them. I’ve seen some other inspiring mums also fundraising for the charities that supported their families whilst losing a child and it got me thinking. We collected money at Silvers funeral and divided it between The Sick Children’s Trust and Tiny Lives. Both provided life changing support for us. We even got a certificate of thanks for Silver Rose’s donation from her funeral funds. Many people expressed a wish to me to be able to donate that were unable to attend the funeral. As Tiny Lives had a more direct impact on Silver herself I have set up a just giving page so that people who wish to support their continuing work with the NICU at The Royal Victoria Infirmary Newcastle can do so. It would only make sense if I tell you a bit more about them and what the money actually goes towards and more importantly, exactly how Silver and ourselves benefited from their support and services.
The first time I heard about Tiny Lives was when I was wheeled from the surgery recovery ward on my bed to see Silver. I had only briefly got to see her in the operating room before she had to be whisked away to the NICU. As soon as I saw her in the incubator I was in awe. My beautiful girl laid so perfectly asleep with pipes here, there and everywhere. Most importantly I was looking at a breathing baby, something we didn’t know if we would get to see. I was then presented with a “Mini Boo”. It came in a pouch and I was then told Silver had hers with her. It was given free of charge (RRP £24.98) and is a way of exchanging scents. At the end of each day I would give Silver the one that had been tucked in the top of my bra which would smell of me and my milk. I would then take hers which of course smelt like her and tucked it back into my bra. It was a way of comforting me and also encourages milk production which I know is so important for mums to be able to do and some really struggle, so something like this is invaluable. I didn’t actually have any issues with milk production at all, it was pouring out of me! But it was nice to have her smell for emotional comfort and at times Fabian would wear it too so he could bond with her as well, also vitally important in the situation when time is so precious. We did our last swap when she went to her post mortem and now she has one with her and we have hers safely put with all her other keepsakes.
Tiny Lives also provided all the bedding for Silver. Something she enjoyed making sure was changed frequently by cheekily weeing when we would change her nappy or she would have X-Rays to check her chest drains were in the correct position. We were even lucky enough to help change her bedding too and they had matching muslin squares which would hold up her ventilation tubes or cover her up to keep warm when she would come out on the tray. Of course these are all essentials but are what my little girl lived in for 16 days, in comfort and pretty colours making it a less daunting environment for us all. We were lucky enough to get to keep one of the muslin squares too which now sits proudly on my bedside table along with her photo frame. I can’t tell you how invaluable it has been being able to smell this muslin square, it was actually freshly washed but due to all her bed changes she always smelt of fresh laundry so it is a familiar and comforting scent.
Another amazing thing Silver benefited from was a specialist physiotherapist, provided by Tiny Lives. Due to anhydramnios (no amniotic fluid) Silver was very cramped inside the womb and one foot in particular was bent back almost level against her leg. She didn’t actually seem in much discomfort but of course it was something that if not treated soon would most likely have required surgery in the future. One thing that truly surprised us is how involved we were with Silvers care. You would think with her being so fragile only the professionals would be allowed to do such things as physio but no, we were greatly encouraged to be hands on and were shown what exercises to do with her feet. So each time we changed her nappy (every 6 hours) we would do the exercised too. I think this is such a fantastic service they provide which goes so perfectly alongside the amazing nurses work.
There was also some personal touches along the way which made our time so special. One day we arrived to the incubator to a beautiful hand made card which was funded by Tiny Lives and made on the unit. It was full of pictures of Silver the nurses had taken whilst we weren’t there and what was such a beautiful pick me up is now a most treasured keepsake. Not only this but a lovely nurse also provided us with a teddy from Tiny Lives with a hand written tag especially for Beau to include him in the experience too. It can be so easy to forget the outside world when you are a NICU parent and as my parents were looking after Beau for us too he had got a little bit waylaid so it was lovely to make him feel special and a part of Silvers journey.
If you’ve ever been a parent of a NICU baby though you will know just how draining an experience it can be and also can impact finances and work commitments. We were very lucky to be provided a social worker by Tiny Lives whom was a shoulder to cry on, provided practical advice and also financial support. She managed to put in an application for a small grant which helped us support ourselves away from home and away from work, a true life saver. She had also planned on sitting down with us and sorting all our finances out however unfortunately Silver passed away before we got this chance. I can’t tell you how grateful we were to have the friendly face who was always nearby or on the end of the phone to talk to and support us through such a difficult time.
Not only this but Tiny Lives also paid for our months parking pass, the value of £40! This enabled us to bring our car up to Newcastle enabling us to actually be able to get to supermarkets for food shopping without a long walk whilst I was still recovering from surgery. It also meant we were able to go home on the train and pick up our toddler Beau so he could now come and live with us and we could be a family away from home. This was invaluable to helping us have a sense of normality and relieved the stresses of transport and finances.
Unfortunately now I also have to talk about Silver’s passing and our life after loss. Though this was a sad time I can’t say how amazing the support was from this charity. Tiny Lives actually provide a quiet room on the ward, something I came to realise is only really a room used when there is bad news. Despite it being the room she passed away in it did actually turn out to be a great source of comfort the following days after her passing. I am not sure how many people know this, but it was actually me and Fabian who made the decision to remove the life support that awful morning. We are so grateful to have been able to move her with mobile ventilation support from her incubator to this room where she passed away in her daddy’s arms. She was very blessed to pass in such a peaceful environment and we gladly used this many times in the following five days. One such occasion was when Remember My Baby came and did a beautiful free photo shoot for us to capture some amazing images which we now hold dearly.
We had the pleasure of being able to do some of the “firsts” which every parent looks forward to with a new baby. On the day she passed and the day after we were lucky enough to bath Silver Rose and were provided with tiny clothes which made her so pretty and was her first time wearing outfits. Of course it was bittersweet as we wanted all these firsts to be with a living baby but nonetheless they meant the world to us to even get the opportunity to spend this time with our little girl. This room also provided a safe escape from the four walls of the flat we were provided. It hurt too much to really leave the ward as I would see babies and burst into tears all the time so it was nice to simply have that change of scenery and also a place for family to come visit silver and say their goodbyes along with enjoying their last cuddles with her.
Let me tell you more about the flat we were provided. They actually have three on the ward, two of which have oxygen support ready in case of an emergency. Usually these are used as transitional flats where parents can get used to looking after their sick baby independently with the support of nurses nearby should anything occur. We however had a flat for 5 days. It meant we were able to have Silver sleep with us in a cold cot and spent invaluable time doing hand prints with the help of a nurse and simply being able to get her out for cuddles as and when we liked along with reading her bedtime stories.
We were provided with three memory boxes believe it or not. The main one which was funded by Tiny Lives included many items such as a frame with a space for clay hand prints on one side. Paper for “ink-less” prints, a story book for us to read to Silver (which we did), a book to explain to Beau when he is older where his sister is, some key chains to put her hair in, a candle, balloon and angel ornament. It was so precious to have all these little items that we could cherish and remind us of our little girl. It also came with two teddies which as you might have seen in my funeral blog we kept one and laid one to rest with Silver.
Even through this blog I don’t feel I can even express just how much their support meant to me, Fabian, Beau and our families. Not only do I wish to repay them for the amazing support and services they provided for us and our little girl but knowing the impact they have on parents lives who are going through the toughest journey a parent may face I want nothing more than to give back and support the future parents on ward 35 at The Royal Victoria Infirmary. Believe it or not I always used to say I would never support children’s charities, whereas so many other people I know found it so easy to support them. I always said I’d rather support animal charities, and I still do but let’s just say before children I was not maternal nor social at all. So I gravitated towards animals, until one day I got hit with baby fever, even though I didn’t like children! In all fairness I’m still not super maternal and I’m awful with other people’s children. I do however have a new understanding of a type of love I feel blessed to experience every day. The love of your child is the most cherished and esteemed emotion to behold, and also the most nerve wracking experience to go through. It tests your patience, your strength and just how much you would do for someone you love. Going through this journey I have learnt just how much I would do that terrified me just in the hopes of it helping Silver, I now understand the value of support on what can be a lonely and daunting journey. I can’t tell you how much I value the care that was provided for my little girl and how it brings me to tears when I think how lucky she was to be cared and supported by such amazing people.
Please help me to help other parents of miracles just like Silver Rose. Help me make a difference for these tiny innocent beings, who I’ve come to realise are such fighters and with the right support not only can babies thrive but also parents can survive. It is a mental battle field being an NICU parent and I know just how much the support helped both me and Fabian do what was right for our mental health and helped us process the situations which arose. So I urge you to take a look at my just giving page and please if only 50p, it all makes a difference for these amazing little ones who are quite literally fighting for their lives.
Thank you for taking the time to read this post as it is something so dear to my heart. If you would like to donate please click here.
Until next time,