THERE SHE GOES!

I think I might know how the parent of an Olympian or child prodigy feels. Lauren is crawling! She looks a bit like Bambi on ice but she has finally had enough of crawling backwards. It has taken her a long time to build up her muscles again after the hospital stays but she has done it! Go, little one!

TAKING A BREAK

I thought that Christmas was going to be nice and relaxing but I should have known better! It was an amazing whirlwind of activities and we all had a blast but I feel like I need 3 solid days of sleep. That also might have something to do with the fact that Lauren is cutting her fourth tooth in three weeks. Ugh. I should just have her on an Advil drip. She has a special whine that she reserves for all tooth cutting and it is the sort of noise that just pierces through your head and your patience. But it does ensure that she is constantly cuddled or given whatever she wants. It's a scary precedent we're setting.

Lauren was spoiled for Christmas (and so were we). Her most memorable present would have to be the larger than life bear that Lauren was given. He doesn't have a name yet because, considering his size, his name will have to be epic.

I was given a flash bouncer which will allow me to go even crazier with the number of photos that I take!

WE'RE SO EXCITED FOR CHRISTMAS

We wish you and yours a fabulous Christmas and a year full of blessing. Thank you for all of your prayer this year. We are enjoying our first Christmas with the best gift we have ever been given. 

 

YEAR IN REVIEW

I don't even remember our lives before Lauren and it is getting hard to remember Lauren's life before the hospital. We are so grateful for the miracles that this year has brought and the amazing people who have come into our lives. 

Writing this blog has been a great way to have people live through Lauren's experiences with us and support us in prayer but not everyone has been with us from the beginning. Some of the most memorable posts are The Beginning, A Haunting To-Do List, My Cup was Half Empty, Everyday Miracles, For Amanda and Matt, and Your Scar. 

Thank you to everyone for joining us on our journey. We still have a long way to go but we are so thankful that we are not walking through this alone.

SET YOUR DVR!

The build up continues. Tomorrow is the big day at Edible Canada and Lauren's outfit is laying out, ready to go. But before all of that happens, Eric, the owner of Edible Canada, and one of the chefs are going to be on the Noon News at Global talking about the dinner and Lauren's story while they do a cooking segment. The segment will be on at 12:40. We've got our DVR set, how about you?

JUST A REGULAR BABY

The last seven days of Lauren's life have been pretty busy. She has had a pacemaker put in, cut her top two teeth and started to take assisted steps.

When she does things like a regular baby, it always amazes us, but after all is said and done, she is just a regular baby.... A regular baby who has figured out that she can make eyes at all the nurses, doctors and hospital workers and they will pay attention to her. That is why she does things like having her chest x-rays with not a single peep. Then the radiologists gush over her. She's a smart one!

Today Lauren's check up with the surgeon showed that she has a bit of congestion in her left lung though there is good air entry now and that there is some fluid on the side of the pacemaker. We are praying that the fluid can be absorbed by her body and that no more builds up.

It's crazy to love someone this much. What a fabulous experience!

PRESS RELEASE

Edible Canada has put out a press release about the special day on Sunday for Lauren. Check it out here. It made me cry a little (which is really hard with this anti-depressant that I'm on!). We hope to see you there!

And they have removed the seating times so you are able to make a reservation for any time that works for you. Reserve at OpenTable, or via phone at 604-558.0040. 

Edible Canada Press Release

UPDATE: Tables are filling up fast! If you want to attend, make your reservation as soon as possible.

PEOPLE LIKE THIS DO EXIST

In a previous post I put a teaser about some exciting news that Matt and I were given. There is an event that we hope you will join us for....

On Saturday I woke up feeling sick, hating one-ply toilet paper and aching for some real daylight. Poor me. I was having a serious case of self-pity. Not a pretty thing.

Just as Lauren was starting to cry once again, someone knocked on our hospital room door. We weren't expecting anyone and I thought that it was another doctor, but when I looked up it was someone that I've only had the pleasure of meeting once face to face. Eric Pateman from Edible Canada Bistro on Granville Island was standing in the door with two massive bags of delicious, piping hot food. He has visited us once in the hospital before when Lauren was first admitted to the ICU and his restaurant generously and faithfully provided us with breakfast and lunches on the weekends for the entire time that we were in the hospital (see this post here).

I am in love with their gluten free french toast. Don't even get me started! They have taken it off of their menu this season and I was heartbroken to see that. After Eric left, Matt unpacked the bags of food and at the bottom of mine was an order of delicious, not-on-the-menu-right-now, french toast.

It was so thoughtful! But to extend their thoughtfulness, the staff at Edible Canada had a meeting on Saturday morning and Lauren's story, combined with the terrible events of Newtown, made them feel that they wanted to do something to make a difference. Eric told us that this Sunday, December 23rd, Edible Canada is hosting two seatings of a three course meal and 5% of everything that they bring in this day is being given to Lauren as a bursary for her education! What a blessing!

Because of Lauren's periods of CPR and the lack of oxygen to her brain, the hospital staff has prepared us for learning disabilities down the road. To give her the best chance, we have already signed her up to attend Westside Montessori Preschool where the learning that the children experience is amazing! However, the school isn't cheap. Now that Lauren has had another surgery, Matt and I have decided to postpone my return to work since there are still so many feeding issues that we are working on with her and ongoing appointments with many different doctors. While I cherish the extra time that I will have with Lauren, it makes it more difficult to save for her schooling.

On this morning, when I woke up on the pity party side of the bed, I was overwhelmed by the amazing care and generosity of Edible Canada. There are so many people out there who love us and support us.

Now let's celebrate a beautiful Christmas by heading to Edible Canada for dinner on the 23rd. Can't make dinner? Pop down for a delicious brunch or lunch with great gluten free options. The dinner seatings are at 5:30pm and 7:30pm and it is $35 per person. You can make reservations online or by calling 604-682-6681. Hopefully we will see you there. Lauren already has a dress ready for the event!

HOW TO ENTERTAIN A BABY IN THE HOSPITAL

It can be really hard to keep a baby who wants to do nothing other than jump, stand and take a few wobbly steps entertained in the hospital. So here's what Lauren suggests...

Lauren's List:

1. Eat all of your toys. Drop them repeatedly on the hospital floor so that someone has to wash them over and over again.

2. Relax. Watch Secret of the Wings. Over and over.

 3. Smack windows. Bonus points for fingerprints left behind.

 4. Eat chocolate ice cream. Smear on face. Start flapping arms like crazy as you enter a sugar overdose.

5. Collect Tinkerbell and other fairy band-aids after any and all blood work.

5. Recover. 

 6. Have loud fits of squealing. Also do this while dancing to Gangnam Style. It will bring all the nurses running.

7. Bundle up and go for walks. Have your nurse super nervous while you're away but, don't worry, you don't eat on walks.

8. Have an in-room picnic with plastic food. If you're super cool, wear the mini picnic blanket on your head.

9. Be creepy.

10. Play with your syringes, name tags, tubes and all medical parifinalia that comes within a one foot radius of your person. Put anything and everything possible into your mouth with lightning speed. Oh, and rock the bed head hair.

Last, but certainly not least, charm anyone and everyone who walks into your room. That's right, work those baby blues. The more charming you are, the more they will come visit and you don't have to stare at your mom and dad's faces all day.

THAT'S ALL FOLKS!

Here is what Lauren is doing at this exact moment:

She's playing "Toybox", one of her favourite games where she takes all of the toys out of her toy boxes (hence the super original title), and sitting in front of the Christmas tree AT HOME!!

After a rough night last night with a nurse who seemed determined to wake Lauren up every chance she got, this morning Lauren woke up with a smile and the doctors determined that she was doing well enough to be discharged. Yesterday she had a bit of a fever but that has gone down.

It is so nice to be home. Lauren went down for a nap and, just like at the hospital, she woke up with a loud cry after only twenty minutes or so. We watched her on the monitor and she looked around, realized where she was and settled herself back down for another hour and a half. It was bliss. For all three of us.

Hopefully every day her incision and sternum feels a little bit better and she is more comfortable. Thank you everyone for your amazing outpouring of prayer and love. We have an exciting and overwhelming love gift to tell you about shortly (no, I'm not pregnant). Stay posted!

And in other news, the same day that Lauren had her surgery, she also broke her two front teeth up top. Now she has all four front teeth and she delights us with the sound of her teeth grinding. It makes me gag. Thankfully I don't vagal.

PACEMAKER SURGERY UPDATES

Lauren has her pacemaker surgery today. Please keep her in your thoughts and prayers.

7:40 AM - Lauren has just been taken downstairs for her surgery.

8:15 AM - Lauren has been successfully intubated with no complications.

9:20 AM - The surgeons are just starting to do the closure and will be up to talk to us soon.

9:50 AM - A couple of the cardiologists just came in and told us that everything went very well.  We should be able to see her soon.  They will be watching her in the ICU for the day and night to make sure that everything continues to go well.

10:05 AM - Dr. Campbell just came in to let us know that she did really well during surgery. She is extubated and breathing on her own. They didn't have to pace her at all during the surgery, her heart was strong enough to handle the anesthesia and the surgery.  They brought her incision down further than it previously has been and only had to do a partial sternectomy, which will hopefully mean less pain for Lauren. She also had no bleeding, so she does not have a drain. We will be going downstairs to the ICU to see her in the next 15 minutes. Thank you for your prayers, they are working!

SURGERY TOMORROW MORNING

Tomorrow morning, around 7:45 AM, Lauren will be having her pacemaker surgery.  After surgery, Lauren will be spending one night in the ICU and will then be back on the ward for a couple more days of healing. We ask that you please join us to pray:

1. That the anesthesia goes smoothly and that Lauren does not have a vagal episode during intubation.
2. That the surgery goes well, with no surprises or issues.
3. For Dr. Campbell and the rest of Lauren's surgical and care team - that He will guide their hands and help them care for Lauren.
4. That Lauren comes out of surgery able to breath on her own.
5. Quick and complication-free healing.
6. That Lauren has to spend as little time as possible in the ICU.
7. That Lauren is not scared before, during or after the procedure.  That she is able to feel the love and comfort from her parents, family, and God.
8. That this surgery does not set back the amazing strides in development that Lauren has made in the past months.
9. For strength and comfort for Amanda, Matt, and the rest of us that walk through this journey with Lauren.
10. That Lauren can safely come home as soon as possible.

Thank you for your prayers and support. We will update the blog with Lauren's progress throughout the coming days.

INSERT WITTY TITLE HERE

Ugh. For those of you who are getting our Christmas infographic, you may have to cross out 41 as the number of days that Lauren has spent in the hospital and replace it with... who knows. I would love to give this post a positive tone but I'm so tired and I don't know how much longer we will be here.

When we came in here it was for an investigation. Today Lauren had an episode and it was caught on the heart monitor. It was her scariest and longest episode yet. The heart monitor showed that her ventricle stopped contracting for between 4.5 and 10 seconds. Not good.

While this issue is obviously related to Lauren's eating, they are going to put in a pacemaker to intervene when her ventricle doesn't contract. That means another surgery.

So here is our list of prayer requests if you could join us in prayer:

1. That Lauren doesn't have any more episodes before she is able to have the pacemaker put in.

2. That she is able to have the surgery very soon (before the weekend).

3. That the surgery goes smoothly, she doesn't need any intervention for her heart, and that the pacemaker is installed perfectly.

IT'S A MARATHON

On Friday morning Lauren had another vagal episode where she passed out. This hasn't happened for two weeks and we were so excited about her progress.

Now the cardiologist wants Lauren to be admitted to the hospital again so that they can investigate these episodes. Initially they wanted Lauren in on Friday but we managed to settle on Monday since no testing would have been done on the weekend and it is so much nicer to have Lauren at home.

I'm dreading going back to the hospital tomorrow. Dreading it. When I was thinking about it, my brain said to me, "Two steps forward, one step back." However, it's more like a marathon forward and a 5K back. Lauren has come so far and this is just an issue that she has that needs some investigation. I'm praying that there are no serious issues that are causing these episodes other than a feeding issue. It will be nice to have it checked out but it is scary nonetheless.

Today I will be packing and prepping for our time in the hospital. It is like packing for a trip but the destination just isn't as fun. We aren't sure how long we will be in there. They want to see an episode so I have planned to pack all of the foods that have caused it in the past. I feel terrible wanting to cause her to have an episode because I've worked so hard to make eating a fun and safe time for her but I also know that the faster an episode happens, the faster we can get back home and living like a family again. The stress of this all is getting really hard to deal with for all of us. 

SOMEONE'S CHILD LOVES SANTA...

...it's just not mine.

Case and point - Monday Santa visit at the mall. Lost it.

They chose to give us one where she was most composed but the picture below shows you a more honest image of her visit. Her friend, Harrison, is a super chill baby but for some reason, Lauren inspired him to join her cry choir. Lauren's reaction even goes like this at home when Matt just puts on his Santa hat and she was really upset that Santa had invaded her big moving picture box. Oh Lauren. It's a good thing we don't believe in Santa.