Laura's Story\

Laura’s Story – Part 16 – the waiting game

It took about a week for Laura to return to normal after her bout of infection but once she was feeling better she looked excellent! Laura loved books – her favourites at this point were The Very Cranky Bear, Are You My Mother and the Dr Seuss ABC book. She also loved playing with the balloon that my parents had bought her when they were here last – we would bring it close to her face, boop her and then release it and she thought it was hilarious!

We always received so many comments from the nurses and RTs about how rarely they saw babies so happy while intubated. Laura had always been full of joy and life. Her face showed so much expression and, even though she couldn’t make sounds while intubated, we always knew what she was thinking.

IMG_0440

Just before Laura turned 3 months old, her favourite nurse, Jen, bought her a couple of outfits and Laura was in clothes! This is such an exciting milestone in the hospital because it means they are well enough that we didn’t have to be able to see every detail of what she was doing all of the time.

Jen was with Laura for 3 months – every time she was on shift (evening shift) she was with Laura – it wasn’t until the very end of our stay in February that she actually took another patient! She loved and still loves Laura so much – she would read her stories, play with her, cuddle her and just all around treat her like the awesome baby she was. They had many midnight parties when Laura didn’t feel like sleeping and Jen never seemed to mind. She would do Laura’s laundry for us when we didn’t have the time and she would seek out books that she could read to Laura – she was an amazing nurse and beyond all that – she was also intelligent and good at her job. Some might say that this is becoming too attached to the patient – I would say that yes, she was very attached – and it’s what made her great. She feels deep pain when one of her babies suffer and she cares for them all the better because of how close she is with them. We never had to explain anything to her about Laura and her routine because she already knew it – it made leaving at night easier and would even allow us to leave early to go to the store or even go home and eat vegetables for supper.

IMG_0477
Laura’s outfit from nurse Jen 🙂

On Tuesday, December 13th, 2016, Laura was extubated! She was put on bipap right away to make sure her lung didn’t collapse and she did so well! We could feel that this time, she would be able to remain extubated. She looked very familiar with her mask on and this time, to help her face out a bit, we decided we would use the small mask during the day and the giant full face mask at night to give her little nose a rest.

We were getting ready for a rather different kind of Christmas but trying to make it as happy and memorable as possible because it was still Laura’s first Christmas. Jen made her an adorable sign and I went to the dollar store to buy a few decorations. We wanted the bedside to be as festive as it could be so that we could still remember Laura’s first Christmas fondly.

 

Laura got a visit from Santa and one of the ladies from Child Life made a Christmas gift for us from Laura while she was sleeping – what an amazing memento of our first Christmas together.

By December 20th, 2016 Laura had begun to realize that she had hands and would stare at them constantly. She liked moving her fingers around and spreading her hand as wide open as it could go. We had become quite used to maneuvering the Berlin Heart and I was now able to pick Laura up myself and hold her whenever I pleased – this was a big accomplishment and the first time it had ever happened!

Laura had also begun learning to hold her head up while sitting! Physiotherapy came by once a day to get her sitting on her special stool (she couldn’t sit on the bed because of her Berlin heart needing to be held at a certain angle still) and we sat her up a few times on our own throughout the day.

We had been getting some new visitors and had begun to get used to the fact that this is what our lives would be for a long time. We started thinking about what to do if we were still in Edmonton come September when A.J was supposed to return to work and how we would be able to both stay with her. That planning was put on hold though while we got ready for Christmas!

The one thing that was still really weighing on my mind was the sign above Laura’s bedside

“All I want for Christmas is a shiny new heart.”

As Laura got stronger, it became evident that this was the best time for her to receive her gift – there was never a guarantee that she would remain healthy so the sooner the better. The problem – I didn’t want Laura to get her heart right before Christmas because as much of a gift is was for us, it was the worst possible outcome for another family. I couldn’t wish that on anyone, especially at Christmas time. It was hard to hope for the gift that would allow Laura to live when we knew another baby would not be growing up with their family. They would not walk, talk or go to Kindergarten – life would be ripped from them too soon. What we held onto were the words of one our nurses who had been with many a family when the time came to decide about organ donation:

Every family that I ever met thought of organ donation as the only good thing to come from a terrible situation.

As horrible as it was that a baby would have to die – giving Laura her heart was not what killed them – they died tragically and this was a gift that could turn their passing into someone else’s miracle. I had to continue to remind myself of this often.

 

Leave a Reply