Ahhhh…. remember how excited we were to celebrate 150 days? That’s when Ellie was given her Nemo suit we thought would never fit her (doesn’t even do up on her now). She was on NAVA still recovering from her pneumonia. We had cake, presents, the boys came in. 150 days felt like such a long time and such a big achievement. Little did we know then what was ahead. Another 51 days in NICU, 5 weeks in CICU and the rest of the time less 6 days, in what feels like our home on C1South.
While we were on our ‘holiday’ upstairs, our room was thoroughly cleaned. We had also pulled down all our photos and rubbed off all our writing from the wall. When we came back it only took me a few hours to redesign. We have different photos up, more of a journey and reminder of how far both the girls have come. Our wall is now also covered in goals for Ellie to get her home, lists of outpatients referrals and appointment we will need to make, a schedule of who is with Ellie and when, as well as a food diary and the rates her milk is given to her at.
My favourite parts of our wall are the photos, Matt gave me an amazing one of the boys today. The 3 of them worked together so that I wouldn’t know the boys got a ‘family’ photo on Levi’s preschool photo day.
The other thing I love is our blood donation tally and the girls certificate for reaching 100 donations. I reread the Mammamia article the other day, in May last year we had something like 32 donations and weren’t sure if we could get 100 by their 1st birthday. Look at our tally now, only 8 more to go to reach double that number. 192 donations! Wow. That is almost 600 lives saved, because my amazing sister started a Red25 group and because my incredible daughters showed strength and courage through all their trials and blood transfusions.
Another busy day today, hospital noises meant Ellie and I were up at 530. This resulted in Ellie sleeping through her physio session – Hannah got to go downstairs for her session instead. Mum arrived for a day visit after this and took Hannah for a quick walk while the Matilda Rose speech therapist had a session with Ellie. After that Mum held Hannah while I ate, then it was crazy time with a cap gas for Ellie (2 nurses to do a finger prick and collect 0.5mls of blood), 2 physios came back to see how Ellie was, a NICU doctor had popped in to say hello, mum, Hannah and I were also in the room along with a screaming Ellie (the prick doesn’t bother her it is the squeezing and holding down that she hates). Anyway after that an exCICU friend who was back for the day came to visit, after the the three of us walked Mum to the bus stop and then had a wonder around the block and sat lounging in the sun in the fairy garden for awhile. It is the furthest and longest Ellie has even away from her bed for. It was almost completely successful…… it only took me 10-15minutes to realise Hannah had been determining how much oxygen Ellie had been receiving with her foot!! To give you an idea Ellie is currently on 800mls and she had been getting anywhere from 0 to 2.5 litres! Thanks to Hannah. 😂😂
Needless to say Ellie was exhausted and settled down quickly, Hannah fought a little harder before giving in to sleep tonight.
Well done if you got through this essay tonight.