The first time we came across Tiny Lives Trust (TLT) was on the special cars baby unit.. We came back from having a costa coffee break and found that one of the nurses had put a small bear with a TLT t-shirt on it in her incubator. A lot of the other babies had teddies and keepsakes in their cots and incubators and we hadn't done that yet.. I think I was still in shock and just scared. We asked a nurse what this was and she told us all about the wonderful charity.
Looking back it was clear to see what they do to support the unit and at the time I just thought that it was a great unit but didn't realise how much they do.
For me personally one of the big things was helping with breastfeeding. When I was pregnant Gordon and I had discussed how we wanted to feed Our future baby and decided on breastfeeding. I said that I could probably express some milk sometimes so that daddy can do a feed but I was sure on my decision. Let me just say that I don't have anything against formula (and in fact her first feed was formula) but it was a choice I made.
But when she was born, It was clear that she couldn't latch.. Apparently it's a skill that babies develop later on in the pregnancy.. Who would have thought! We actually ended up trying for 16 weeks before I stopped but in SCBU they encourage you (if you wanted to already) to try and BF and also to express milk.. They have a dedicated room for it. I used to either use that room or do it on the ward and trot along to the ward after each time (2-3 hours) to give the staff the liquid gold.. And I would give it to Islay through her NG tube.. Such a proud moment! The staff were incredible.. They were so chuffed for me when my milk started to come in.. Even when it was only 10-20ml.. They treated it like it was the most precious thing and really kept my spirits up! Expressing is a hard choice.. It's hard to express when u are out.. It's hard when ur baby wants to be held and all u can think is about the pain because u haven't expressed for the last 2 hours.. The first few months were very tough. There were many times when I wanted to give up but for me I was determined.
I managed to express for almost 2 years (she was 2 last week) and I'm proud of my achievements. It made me feel a bit more of a 'normal' mum from an experience which was far from normal! TLT started that journey for me.. I left SCBU with a hand held breast pump funded by them and without that may not have gone down that route!
They do much more than that.. They provide comfort aids for babies.. Little nests for them to sleep in and weighted things to make them feel comforted as possible whilst not being able to be held.
They also fund miniboos. These were incredible.. We got two.. They are like little towelling dolls.. I wore one on me and Islay had one.. I would swap them over every time I saw her and they would transfer her and my smells between us.. It really helped to make us feel closer when holding her was simply not an option.. They also helped to bring my milk in! :) I used to let Gordon have one sometimes as well once my milk came in so that he could feel that special bond with Islay too! :)
Even after leaving the unit, we continue to be supported by them.. We got to a buddy group for parents of SCBU babies.. It's like a play group.. All the children play and it's a space where we can talk and celebrate our children's experiences whilst swapping advice on which consultant is good (or not.. Lol) I love my SCBU family and wouldn't know where we would be without them.. They get it and I love that. I love that I can message any of them at any time and in fact a lot of Islay's friends at her party were from that group.. They truly are all amazing .. Both the children, their siblings and their parents.
These are just a few of the things that TLT did for us.. There are so many more things they help other parents with so please do check out their website! http://www.tinylives.org.uk/
Thanks for reading.. Pop back for further updates on my running.. I'm still running as slow as a stoned tortoise but I'm getting there!! If you would like to sponsor me and my running journey, please click on this link http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=365milestoseptember My goal is £365.. £1 for each mile I am running, so please help and sponsor a mile or two :)
Kirsty
Kirsty
