HEART AND LUNG TRANSPLANT
It would be the first infant heart and lung transplant to be completed in Canada and there are many complications they need to consider before putting her on the transplant list.
They would need to relocate to Toronto and it can take up to 18 months to receive organs. Millie may not have the time it would take to find her organs and she could die in the Cardiac Critical Care Unit. Once she gets her organs she would face many new challenges, including possible rejection. Once she recovered, the whole family could go home. Although she would require follow-up appointments at the Toronto Hospital for Sick Children, she could go to daycare and play with other kids.
"The only catch is that lung transplants always reject eventually, usually within three to five years. So Millie would not have a full life," says Caroline.
MILLIE’S BUCKET LIST
Doctors also began discussing palliative care options for Millie. She is being treated with prostaglandins that keeps a duct open in her heart and allows her to live. Her mother says because of the medical treatment she is receiving, she has to stay in critical care. Without such treatment she would have days to live. Palliative care staff asked Caroline and Derek to make some goals for Millie's life, things they wanted to achieve. This would help staff make a plan for her, to do whatever they could to give her the experiences her parents want for her.
"So we have been addressing Millie's bucket list," said Caroline.
She's been able to breast feed her baby, even though infants with heart defects often breathe quickly and are not able to breast feed. "It's amazing," said Caroline of the experience.
She wanted Millie to meet a dog before she dies. "Dogs have brought so much joy to my life and I wanted her to feel that," she said.
Millie is now visited weekly by Moxie, a Portuguese water dog. Moxie brings great happiness and a sense of relief when she comes to the family.
Derek wanted Millie to see outside so the team arranged for the family to go for a short walk to a window and look out on Toronto.
The team also arranged for Millie to have a sleepover in the hospital with her parents over the weekend. They'd never spent the night with their baby in a bed and had never held her lying down.
"I also want her to watch the movie Shrek with me. In the mornings I tell her stories about the adventures of Shrek and donkey. I promised her we would watch the movie together some day," says Caroline.
Right now, their biggest goal is for Millie to see her home and to sleep in her nursery, even if it's for a very short time.
"We want her to feel what it's like to be in her own space, surrounded by her things and all the love we poured into the room. The doctors know this and have promised that no matter what the future may bring and how Millie's condition progresses they will do everything they can to make sure she gets to her nursery in Yarmouth before she passes," says Caroline.
"Right now we are just living every day for Millie. That's all we can do. We love her so much and are treasuring every moment we have with our little miracle,” says her mom. “We have good days and bad days but Millie makes it all worth it. Being a parent is the most amazing feeling. We feel very lucky to be Millie's mom and dad."