Christmas eve came up very fast and we were excited to have our first Christmas with Laura! We brought her a special Christmas eve dress and brought some of the things that she had already received from A.J’s mom and sister. The unit was decorated nicely and Laura’s bed side was all decorated for the holiday.
Christmas is our favourite time of year. The lights, the stillness of a snow covered landscape, hot chocolate (or coffee) and treats – not to mention the birth of Christ. This would be our first Christmas eve without a church service – it was a bit weird but it was more important to spend the day with Laura. This was her first Christmas and as much as I tried to push the thought from my head, it could be her only Christmas.
It was wonderful to spend the day with Laura while we put the final touches on the plan for Christmas day. We took Laura’s footprints so that I could make cards for our families and we had a few other little special things that we were planning.
We got up bright and early, packed up the Christmas tree and decorations and headed to the hospital. We were determined to have a Christmas tree for Christmas so the night before, Jen had promised to find us a spare bedside table to put it on. This would not normally have been possible but when we entered the unit, it was a bizarre sight. There were only 3 kids left on the unit! Everyone else had been cleared out to spend Christmas either upstairs or at home. The other little girl who had been on a Berlin Heart had recovered, had the Berlin Heart taken out and headed home the week before Christmas (she had been in hospital since the May before)so Laura was the only kid on a Berlin Heart in the whole hospital. It was so quiet!
Jen had found us a couch and placed it at Laura’s bedside so that we could have a comfortable and “normal” Christmas. She knows all too well that these kids don’t always get the chance to have more than one Christmas so she wanted Laura’s to be special – for us and for her.
We set up Laura’s Christmas tree and shortly after that Laura received a special guest! Santa came! He came bearing gifts from Child Life and we even convinced him to hold Laura so we could have a picture of her with Santa – he was less than comfortable but I’m impressed that he went for it. The Berlin Heart could be a bit scary for someone who wasn’t used to it.
On rounds that morning we got an amazing Christmas gift from Lindsay – Laura was going to have two 20 minute low-flow trials! We’d be able to see our precious girls’ face for the first time in ages 🙂 That gift was so amazing and allowed us the chance to get some real Christmas pictures. She had her days and nights mixed up though so she wanted to be sleeping – it made for some excellent pictures of Laura’s pout.
We had an excellent and relaxing day – we opened gifts, read books, played with new toys and A.J even changed his first diaper! This is a big feat – especially with the Berlin Heart – you can see in the pictures that it hangs directly over Laura’s diaper, so you have to hold it out of the way with one hand while you change the diaper – not so easy. Laura got a pretty big haul of gifts for such a little person and my family hadn’t even arrived yet!
At the end of the day, Jen took some family photos of us during Laura’s second low-flow trial. It was nice to have some pictures of us as a family.
We headed home that night feeling pretty tired but having had a lovely Christmas day. It was now time to prepare for Christmas #2 with my family!
Boxing Day 2016 – my family came down for Christmas! It was nice to have them with us and we spent the next day and a bit eating, taking turns on the unit with Laura (only 2 allowed at a time but with the unit so empty, they let us go in 3 or 4 at a time) and hanging out. It was nice to have visitors to change things up a bit.
On December 27th, 2016, Laura got to have another procedure! She got a neonatal PICC line put into her scalp – she needed more access – her arm PICC line would be used for drawing blood and this new one would be for her bivalirudin infusion – the only medication she was still receiving via IV. It took 3 hours to get the PICC line and it lasted 2 days … by this point she had been moving around so much that she pulled it out almost immediately – it was a good try though.
We said goodbye to my family and just like that, Christmas had come and gone.