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Tuesday, December 30, 2008

Its the final countdown... (come on, sing the song).

December 27 was Maren's one month birthday. Its insane how fast time flies... and how slowly it goes at the same time.
The difference in this little girl in the past 5 weeks is absolutely incredible. As of yesterday she was off everything - feeding tube, meds... everything. She has vitamins and Iron (lucky for her she inherited my anaemic tendencies).
She is just an ounce under 5 pounds and steadily gaining. I'm telling you she's a superstar.
The doctor mentioned the words HOME yesterday!!!! We were gearing up for at least 3 more weeks but if she continues to rock her world we're looking at next week. I swear I almost kissed the doctor... we've been away for faaaaar too long.
So, there are a few things that have to happen before we can officially go home. She has to go 5 days in a row without any bradycardia or desats (drops in heartrate and oxygen saturation), then she has to be off her monitors for a couple of days. AND she has to pass her carseat test (sit in a car seat without bradys or desats for an hour). She came sooo close today but desatted with 10 minutes to go. I'm guessing it won't be long til she rocks that test too. That's one I don't want to rush since we do have a bit of travel time when we do get released.

Nyla went home with Darryl on the 27th. I cried like a baby, but she's doing great. Darryl has had a few extra days off so she's settling into normal home life. Apparently she went all around the house saying hi to all her things (she was especially happy to see her tubby).
I know its the best for all of us, but its hard to be away from that little pinkyponk (Imelda's little name for Nyla).

Christmas was nice. We got a little tree and Darryl brought decorations with him. Nyla decorated the tree with a tiny bit of help from us... I can't wait to share pictures. She's so freaking funny :)
She was floored that Santa came to leave her presents :) Even the NICU 'Santa' left a present for her (have I mentioned how amazing the NICU nurses are here???).

I'm staying in Maren's room with her now, so I'm finally getting the quality time with her that we both needed. I can't wait to share pictures of this whole journey.
I have great friends and family who have been an amazing support to me. Thanks for listening to the sobbing phone calls (or emails) and rejoicing in all the progress, no matter how small it was.
Thanks to Diane and Imelda for coming to help watch Nyla. Thanks to Hollie and Tracey (and Chloe) for everything you did to help us.
I love you all.
Stay tuned for great news in the near future!

Wednesday, December 17, 2008

And here we are...

We have had an incredibly busy couple of weeks. We were transferred from the Children's Hospital in Vancouver to Burnaby General, then 5 days later to Prince George. So yes, we are now in Prince George :) Its so nice being closer to home. We just got here so things are a bit up in the air, but we're looking forward to getting into a routine here.

Maren is doing really well. She's now up to 4lbs 3oz :) They found a little heart murmur but I don't think that's an issue at all. She was on oxygen last night because we're at a different altitude here so she had to work a bit harder to breathe, but was off early this morning.
We won't be home by Christmas :( and probably won't be home for another month, but we can't really complain because she really is doing well, she just has to grow.
There are a few little issues that are common with these tiny little ones, but nothing that seems to be worrying the doctors.

Nyla is doing really well. She's getting tired of being away from home, but she's making friends everywhere we go :) She's definitely a charmer.

Some of you wonderful people have asked for our address but we don't have an address yet. We're staying at a hotel for a few days and then will eventually be in the Easter Seal House here... so I'll pass on an addy when we know what it is.

We're sad about being so far away from everyone this Christmas, but we are also so grateful to be in a place where they obviously care so much for Maren. The PG NICU is amazing... we love it here and know that she is in great hands.
Darryl will be arriving on Christmas eve and will stay for a few days, so we're very excited about having our family together for Maren's first Christmas.

We hope you're all happy and healthy. Merry Christmas from us! We miss you all.
Lots of love

Sunday, December 7, 2008

She's a superstar

Maren is doing so well its absolutely unbelieveable, she continuously blows me away. She's so tiny but otherwise completely fine. When we first got here she was covered in tubes and wires, but now the only thing left is her feeding tube. She's already putting on weight and is almost back to her birth weight (3lbs 8 oz). One nurse made a comment about us being home by christmas!!! We're very hopeful for that.

Darryl went home today. He needed to get back to work :( Nyla is still here with me (Darryl's mom is here to help). I think one of the most difficult things for me is balancing time with both girls. I know how much they both need me and its been heartbreaking not being able to be with both 24 hours a day. Now that Darryl is gone it makes it a bit tricky,but I think we're going to be ok. I keep trying to remind myself that this will soon be a distant memory. Soon we'll be together at home and we can catch up on all the time we've missed.

Nyla met Maren for the first time. She absolutely LOVES her. She constantly asks if she can come to the hospital to see her,and begs to bring her with us when we leave. I can't wait til they can actually play together.

We're waiting for a transfer to PG. The NICU there is apparently awesome and its closer to home so we're pretty excited about that. We have to wait for a bed, and when a bed is available we can only go if the transport team is available. I have an idea we'll be here for a little while because coordinating both is not proving to be easy. The care she's getting here is so amazing I definitely can't complain about being here.

So, that's the update for now. It couldn't be going better! We're so proud of Maren and her incredible strength, and we're so proud of Nyla for handling this so well. We have two amazing little girls :)

I'll update again when I have a few minutes. Pictures will have to wait til we're home.
Lots of love from us!