Day 176 -52 weeks corrected

Woohoo!! The original goal was to get 100 donations by the girls first birthday. Well they are 6 months old in 8 days and so many wonderful people have already helped us reach our goal of 100 donations, saving 300 lives! Our revised goal is now 200 donations by the girls 1st birthday on the 16th March 2017. What an amazing present to be able to give them. And a massive thank you to my awesome sister Helen for starting this initiative and motivating so many people to donate, thank you x

On Ellie news, it was really nice seeing Ellie today. Her work of breathing was the best I have seen it in over a week, it was nice seeing her so relaxed and comfortable. The physio came to take a video of the girls today, a team will analyse the videos and try to determine whether the girls have cerebal palsy (a large percentage of prems do due to the journey they have endured). The physio came and captured Ellie’s and said it’s not official but some of the movements they are looking for were very obvious in Ellie….. trying to create suspense – this is a great news for us. Obviously we will have to wait til the video is properly analysed but unoffically Ellie is looking good. Hannah on the other hand is being a bit of a pain in the butt. There are a lot of restrictions when taking the video and Hannah isn’t being very cooperative, I will try to capture her again tomorrow.

Ellie’s beautiful nurse today (one she hasn’t had since she was extremely ill) was not only happy to see her so well but found  different CPAP head gear that will allow Ellie to be cooler and allow us to see more of her beautiful head!

On a side note in honour of RUOK day, I wanted to say thank you to all those who support us. Whether it is through words of encouragement, prayer, meals, gifts (I still haven’t had to buy the girls any clothes yet), help with the boys and just things that make our lives a little bit easier or alleviates a little bit of stress. Thank you to my play group that while they know everything I am going through let me be a ‘normal’ Mum for a couple of hours a week. Thank you to all the nurses that make sure I am doing OK and genuinely care. Thank you to the amazing social worker that has helped us so much over the last couple of weeks. To the other NICU Mums that are struggling through their own journey but still take the time to ask about (or follow) ours. Thank you to the doctors that understand our situation and realise this journey isn’t just about Ellie but all 6 of us. Thank you to those people that get excited with us whenever there is a step forward no matter how small.

Our situation isn’t sad, we don’t need to be felt sorry for. Yes, I in particular have some very crappy days – but 6 months is a long time. And I always remember we have been told both our babies would die, that we should sacrifice Ellie to save Hannah, that our chance of still birth was significantly higher than a normal birth, that Ellie was going to die. They didn’t, we didn’t, she didn’t. We celebrate everyday with our girls because it is one more day then we were told we would have. We are content knowing we have done and are still doing everything we can to save Hannah’s sister who is connected to her in a way we will never understand. Even on the crappy days we try to remember all the blessings we have already received from our girls.

And to reward you for getting through a mega long blog post – lots of baby spam!!

*Deb

Good morning world!

Afternoon nap time

Whack, take that sis. (Hannah)

Haha! I’m big enough to eat you now! (Ellie)

What’s that? Should we pull it out? (Hannah)

Does it hurt when I hit you on the snorkel? Like this! (Hannah)

I wanna hold your hand (Ellie) Stop it, stop touching me (Hannah)