Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Saturday, April 18, 2009

Thanks

Thank you to all of you that sent in ideas. I love the hand tracing Renelle and have already traced Georgia and Maya's hands. Calla was playing outside. We will definitely plant a tree for Georgia, something with pink spring blossoms to remind me of my baby girl. I am also considering making up part of a garden in the yard full of lilies. We would of course put our stepping stones there. I love the angel wind chime too. I have always loved wind chimes. I have two of them in my yard now. I hope that they don't bother you too much Tim and Adrienne and Kevin and Julie. It's funny that when I think of memorializing my daughter many of the ideas have to do with being outside in nature.

If you had stopped by our place today you would have found a bit of a crazy place. The house was a complete disaster for starters and then my mom and Kevin and Melissa stopped by so that we could make two more stepping stones. One was for Grandma and Grumpa and the other one was for us. It has Georgia's footprints in it and we have written "Your love will shine forever". It also has glow in the dark stars in it, much to Calla and Maya's delight.

This afternoon my friend Laura came by to present me with a gift from herself, Krista and Natalie. It is a pendant with the engraved names of my three little girls. Thank you so much. I love it and will cherish it always.

Georgia was downstairs with us for a few hours this morning and then a few more this afternoon. Right now she is sleeping up in her bed. She seemed to have a good day. Mike got to hold her for quite a while as we prepared the stones and I held her for a long time before bed tonight(the girls are at a birthday party with Mike). I just sang Land of the Silver Birch over and over to her. It was just like old times. That's how we used to both fall asleep in the recliner. Sometimes I would hold her long after she had fallen asleep because I just loved that quiet time with her. I got a little piece of it again tonight despite the fact that she refused to fall asleep until I put her in bed with the mask on. Oh well, I'll take what I can get at this point.

If there are still people wondering about sharing our blog I am encouraging you to do it. We know that in some way we are taking a bit of a risk sharing our story with strangers but we have thrown ourselves into Cyberspace and are hoping for kindness and compassion. So far, we have been far from disappointed. The messages that we receive lift us up everyday and knowing that so many of you are thinking and praying for us gives us hope and strength.

Friday, April 17, 2009

Memorializing

Last night we made a stepping stone with the girls' footprints. Thanks for picking it up Mom! We agonized over what to do and what to write and in the end it was easy and perfect. It has 3 footprints of course, and then I wrote Sisters- Friends 4-ever. This is something that I have been saying to Calla since we found out we were pregnant with Maya. We've also stamped Georgia's feet and we've taken more pictures in the last couple of weeks than we would normally take in a year. The Now I Lay Me Down to Sleep photographer has also come and we have some incredibly beautiful shots of our family (to be shared at a later date). My aunt is going to sew a quilt from Georgia's clothes. This will be something that I can cling to and cuddle up with when I'm feeling lost. Thank you Auntie! I plan on getting a locket so that I can keep Georgie's picture with me at all times but other than that I am running out of ideas and time. If you have any idea on how to memorialize our time with our sweet angel please send them.

Today Georgia came down to play for a few hours once again. She just woke up a while ago and we're hoping to bring her down for the evening. When she is down later in the day it feels almost normal.

A beautiful peace lily arrived today from the Plett family. This is a mother that I see once a week at Calla's dance class and shamefully I didn't even know her name. If you're reading this Candace I thank you from the bottom of my heart. I happen to love peace lilies. Thank you to the Ranick's who dropped off a fruit and veggie tray as well. It looks delicious. Another one of my friend's took some pictures and video of Maya dancing today because I no longer attend the classes. Thank you Kristine for you thoughtfulness. To all of you who continue to read and share our blog, who pray for Georgia, who have helped to feed us or run errands for us we continue to be grateful to all of you. All that we can promise is that when our time of need comes to an end we will pay it forward.

Thursday, April 16, 2009

more pictures

Here's a few pictures that I've been waiting to post for a while. I also added a couple pictures to Kristen's last post.

The second-last picture shows what she looks like with the breathing mask on (I don't think we've posted one like that here before).











about the VPAP

Just wanted to comment on something in Kristen's last post .... Part of why we think the VPAP saved her is that if they had waited any longer they probably would've had to intubate, and we feel that once on ventilation she may not have been able to come off.

Even so, for a few days in the hospital it was touch and go and I remember one of the doctors during rounds saying she was "on the fence" about intubating -- if Georgia had worsened at all she certainly would have. Luckily, that was right about when she started to stabilize.


So yeah, as Kristen says, it really does help to look at the additional time with her (esp. since Saturday) as a bonus. It's a lot better than thinking about all the things that we won't get to do with her. Though sometimes we can't help it, and that's when the tears come.

April 16th

Today marks the one month anniversary that I took Georgia into the hospital. It seems like a lifetime ago. I spent the day in Emergency waiting for a room. We arrived up on the ward around 6:00 only to be moved into the PICU by 11:30 that evening. I have no doubt that the team of people who decided to take Georgia up to the PICU and put her on the VPAP saved her life. Thank you to any of you who may be reading this.

Tomorrow will be two weeks that we've had Georgia home. This time has been a gift. Mike and I consider the days since last weekend a bonus.

Yesterday and today have been good days. We didn't take Georgia outside yesterday because she slept most of the afternoon and she doesn't seem to bothered. She just loves hanging out with us and watching her sisters. Her favourite spot is of course her swing. She was in there again today. Dr. Mike made the comment that she looks like the queen holding court and we all laugh when we think about that now. She just looks around perfectly content like she knows something that we don't.

There is still lots of smiles and laughter. Yesterday she had us laughing though. Mike decided to grind up some flax seeds and the sound is very similar to her suction machine. She quickly looked around and sealed her lips shut. "You're not gonna get me!" She is obviously very alert still and we are enjoying every second with her.

Tuesday, April 14, 2009

no expectations now


I should have known Georgia would have a good night when, driving home from the airport after dropping off my sister ("auntie trish") we saw the Blue family's Christmas lights on. Calla and Maya were very impressed when I explained why they were on, and it's fitting that most of the lights are twinkling stars.

As Kristen mentioned the good night carried into the morning, and as it turns out Georgia had a great afternoon also! We took her mask off and she was a bit fussy at first, we wanted to take her outside and even hooked up the portable O2 canister, but she didn't seem ready. So we were about to put her mask back on but Kristen tried laying her down in our bed and she suddenly perked up. So we played with her there for quite a while (see the attached video) and then put her in her baby swing where she hung out happily for over an hour. The palliative care team (two doctors and one nurse, fantastic people all of them) arrived at this time for their daily visit, and were very impressed at how well she was doing. Her improvement is amazing after they had told us she only had "hours" left. Prayers really do work!


After the scare we had Saturday night I really feel like there are no expectations now. Kristen and I both understand that Georgia could leave us at any moment. Questions with numbers for answers -- hours? weeks? how many? -- are almost pointless. How can we enumerate that which is infinitely precious?

So we just take it day by day, hour by hour, sometimes minute by minute. And thanks to all the help we've been received (friends taking C & M to play at their place, meals, prayers, etc.) we are able to focus more of that time on what really matters.

She Laughs!!

Georgia had another good night and woke up this morning a little bit irritated. Maybe that had to do with the very full diaper she way laying in, poor thing! We took the mask off to clean her face and all of a sudden she smiled and then.... she laughed and she laughed and she laughed! Daddy has never been funnier. We read her stories and played with her for about 45 minutes and then decided to put the mask back on because she seemed to be getting tired. She is now watching her mobile drifting in and out of sleep. 45 minutes of bliss, I'll take it!

Monday, April 13, 2009

How does one face death?

How does one face death? It marched into my room the other night surprising us all with its speedy arrival. It stood behind me for several hours staring at the babe in my arms. Then, just as the sky was beginning to lighten it retreated back into the shadows where it bides its time. During those moments Mike and I thought that we were ready to let Georgia go but it cares not. It will be Georgia who makes that final decision and we will be but heartbroken bystanders. I do my best to face the days and nights with love and hope and never fear. So, how does one face death? I have no idea.

Georgia continues to rest peacefully. She had more awake time today and I am crossing my fingers that she'll have more tomorrow and maybe, just maybe feel the sunshine on Wednesday.

10:00 AM April 13th

Georgia had a good night last night. She slept peacefully and we had no scary episodes. This morning she was awake for a little while but a little bit cranky. The mask kept riding up on her face and blowing air in her eyes. She also had a very full diaper so I am hoping that these are the reasons for her unhappiness. We have yet to try taking the mask off again except for a few minutes to wash her face. We'll just have to wait and see. Once again, Georgia is sleeping peacefully and Mike and I are able to take a few deep breaths while she rests.
Granpa Bob left yesterday and Grandma and Auntie Trish took the girls out for a playdate this morning. I have come to a point where I treasure these quiet moments. The possibilities during these times seem endless.

Sunday, April 12, 2009

6:00 PM April 12th

Georgia seems to have stabilized for the time being. She actually has her eyes open now and was watching her mobile and crazy sisters playing around her. Nobody is actually sure what set her off that quickly or why she seems to have stabilized. We will just wait and see. We have been able to back off the morphine a little bit which is why she is awake again and we started a course of antibiotics last night. My mommy instincts were up all day yesterday and she did take a turn for the worse. Last night however I was convinced that she was leaving us and yet somehow she is still here. We will continue to fight with her for as long as she chooses and let her go when the time comes. We are learning to trust ourselves as her parents and to trust Georgia to lead the way.

Thank you for all of the words of encouragement and all of the prayers.

12:30 PM

Georgia continues to rest comfortably but the air doesn't seem to be getting down as far any more. Every once in a while she still opens her eyes and moves her arms.

Good Bye?

Georgia took a turn for the worst last night. We had the palliative care team here until 4:00 am and the family had come to say their good byes. This morning she is seems to be resting better which is why I have taken the two minutes out to write an update. Nobody knows what the day will hold. Please pray for Georgia.

We ask for no phone calls or visitors during this time.

Thank you.