Our "Story"

Itsy's 4th Annual Fundraiser!

2011-11-01T08:01:00.000-07:00

Tickets are now on sale at our newly re-designed website..please check it out! www.itsy.ca

Our bebe is 3!

2011-03-24T18:24:00.000-07:00

We celebrated Story's 3rd birthday last month and had a very special guest - Tinkerbell herself! Story was completely enamored and so were her little friends. Such a fun day for all!

In one way it seems like yesterday that she was born and Mat and I were peering into her incubator at her little 1lb body just praying and hoping that she'd live, yet in another way that time seems like a lifetime ago. We are so unbelievably blessed that Story is here with us today- all 36 lbs of her!

She is the sweetest, most sensitive and caring three year old that I've ever met (of course I'm biased), but she truly is our little miracle who is living her life with loads of love!

We love you so much Story! xo

Catch Up!

2011-01-26T15:49:00.000-08:00

his blog post is LONG overdue....I didn't realize people still checked it, but I've had a few people who tell me they still do! Firstly, I am SO happy to say that I had a full term, 9 pounder on October 15th!!

We named our big guy Leaf. I still think its ironic I had a 1 pounder, followed by a 9 pounder, but Mat and I were so thankful that the pregnancy went so smoothly. Dr. Schmidt followed me very closely and am so grateful for the care I received at St. Joes. No one ever made me feel crazy when I was stressing about things or getting paranoid that something was going wrong; they understood completely the feelings that come following having a preemie. For any preemie moms out there, a subsequent full term birth is possible...have faith! (and a good Dr!)

My belly was massive and it was FABULOUS; I absolutely loved being pregnant!

(39 weeks above)

Life at home with Leaf and Story is great; we are adjusting to having two kids, but so far so good! Story has welcomed Leaf with open arms and is loving him to bits. Leaf's personality is chilled out, smiley and he's started belly laughing, which is pretty darn cute. Here is our little man:

...fast forward 12 weeks and here he is now!

Story is growing up and is quite the little lady these days; she is a polite, sweet and kind hearted almost 3 year old. Here is our miracle girl!

Final goal has been met!! :)

2010-09-14T14:54:00.000-07:00

I am now 34 weeks and SO happy to still be pregnant!! I had multiple goals to reach and 34 weeks marks my last....SUCCESS! This pregnancy has been completely problem free and we are so thankful. I am enjoying the third trimester and am embracing everything that is new to me....and trying not to complain about anything.

I am now done work and taking the month of September to just chill with my girl (and some of my best girlfriends and babes too)!

2010-07-05T12:37:00.000-07:00

Well, I am 24 weeks this week. C’mon week 25 - let’s get here and gone already! Despite Mat and I feeling fairly positive about this pregnancy we can’t help the anxious thoughts that are with us this week, as we get closer to the time when Story was born. I am worrying over every cramp, twinge, ache and pain these days and I’m on the verge of running to the ER almost every day this week..but I suppose that’s par for the course. I am still going to get my cervix measured through ultrasound every 2 weeks (I’m happy to report that it’s still long and closed at 4cm!..too much info?!) and see my high risk OB. My weekly progesterone shots are also ongoing and will be for another few months. So, with any luck I’ll have a big, jolly belly in the months ahead. Please keep our little bebe in your thoughts over the next couple critical weeks!

We are all moved into our new home and it’s wonderful! We have yet to totally settle in, but we’re getting there; once rooms are unpacked I’ll post some pics of the inside. We’ve moved into a considerably larger home now and so the rooms are sparse and echos are quite loud..buit that only means one thing…time to get furniture shopping! Story is loving her new room, all the space she has to run around in and the large fenced in yard; I think our family will be very happy in this home. <3>

2010-06-17T08:27:00.001-07:00

Happy 2nd Adjusted Birthday Story!

Today marks Story’s due date birthday…she deserves two birthdays, right?

Happy Birthday to our girl!

Update!

2010-06-04T07:29:00.000-07:00

Lots of new to share! I’ve been VERY bad at updating the blog..so here’s a brief update all! (if anyone still checks this blog..I have no idea!)

We’ve been keeping very busy the last few months, a ton on the go..as per usual! I wanted to share that the Fashion students at Fanshawe College raised $8,000 for Itsy..how AMAZING and what a fabulous start to out 2010 fundraising year. We had 10 preemie models who absolutely rocked the runway at the show; it was very emotional to watch these former 1 and 2 pounders who are now healthy toddlers strut their stuff…all us preemie Mom’s and Dad’s were so proud.

Itsy has been growing steadily all winter and spring and donations keep coming in, as well as items needed by families. We are VERY close to being able to help families year-round with expenses while in the NICU. Very cool. Itsy’s name has become quite recognizable within the London community and for that we thank the local media for their support in helping get Itsy “out there” and assisting in raising the profile. Itsy has also been nominated for a Pillar Community Impact Award!! (thank to Cheryl Weedmark for nominating us!) We’ll keep you all updated on if we make it further. Lastly, Itsy’s annual fundraising event will be happening again this November..date to be released soon!

More exciting news in our house…we’re expecting baby #2 in October! Mat and I thrilled and Story is equally as excited that she’s going to be a big sister to a little brother. We are quite nervous given my history of premature labour, but we’re trying to stay positive. Although now that I’m in week 20 of my pregnancy the thought is never far from our mind; please keep us in your thoughts and prayers. We’re dreaming of a healthy, full term baby that we can take home from the hospital after birth! I see a high risk OB every 2 weeks (soon to be every week) and that helps ease my worry; I also am getting a weekly progesterone shot (owie!), which has been proven to help prevent premature labour. I also get bi-weekly cervix checks, so that in the chance there is any sign of pre-term labour then appropriate action can be taken quickly. Of course, I am taking is very easy and not doing anything strenuous or lifting Story (which is quite hard, as she’s a 2 year old who loves to be held!) Aside from that, unfortunately there is not much else that can be done for women who have experienced pre-term birth. I’ll be more diligent about updating the blog as the pregnancy progresses. I know I am following other preemie Mom’s as they progress in their 2nd pregnancy and hearing how they’re doing is providing me peace of mind and also I’m learning of other things I can do to prevent premature labour. So, I hope this blog can do the same for some other Mom’s in the same position. A great online resource has been the Pregnancy After Preemie board on Baby Center:
http://community.babycenter.com/groups/a485865/pregnancy_after_preemie

Story is growing and progressing wonderful! Her speech is coming along at a crazy pace; new words and funny phrases every day. She’s been quite amusing lately! She’s loving the summer weather and playing in the kiddie pool..she’s pretty much always waiting at the door to the deck saying “Mama! Go Wimming!"

Last, but definitely not least we’re also moving to a new and much larger house at the end of June! Although we’re excited to be moving, I’m also so sad at the thought of leaving St. James Street..my lovely little home, but it’s time to say goodbye to St James and hello to Erindale!

Preemie Models Rock the Runway on Thursday!

2010-03-30T08:26:00.000-07:00

I’ve been very, very bad at blogging the last few months! I suppose it’s due to working, doing home renos and having a 2 year old..we’ve been BUSY! I wanted to share a very exciting event that is coming up on Thurs, April 1st. The Fashion Merchandising students of Fanshawe College have very generously chosen Itsy to be the recipient charity of their upcoming Futuristic: Wearable Art Fashion Show! The show will feature models wearing funky fashions created from recyclable and unconventional material, in black, silver and neon colours AND 10 preemie models will also be rocking the runway! How cute will this be?! Story will be one of the 10 models taking part and we’ll have to wait and see how brave she is when she faces the catwalk. Given her bubbly and outgoing personality, we think she’ll be fine. I’ll post show pics this Friday..stay tuned.

Check out today’s London Free Press article featuring the show and Itsy: http://www.lfpress.com/life/fashion/2010/03/29/13402901.html

2010-01-18T16:40:00.000-08:00

I've been slacking at blogging, but I heard over Christmas a few times that people still check this blog out every now and then, which is great...but I thought I better do a better job at keeping it up to date.

Story has a wonderful holiday season and yes, she was spoiled rotten. :)

She's has a bad cold that has settled into her lungs. We're getting a bit concerned as she can't seem to kick it and her chest has a definite rattle in it. She has a horrible cough, which interrupts her sleep and daytime activities. She's seen her pediatrician numerous times over the past month and despite various medications and puffers, it's not going away. So, just to rule out pneumonia she's booked for a chest x-ray later this week.

So, keep her in your thoughts that she can get rid of this and her lungs can continue to grow and heal! <3

'Tis the Season

2009-12-14T15:54:00.000-08:00

Christmas this year is going to be VERY exciting for Story! She loves the Christmas tree and takes all the balls off on a daily basis and throws them around the room in true Christmas cheer! J Christmas morning will be a fun one! She’s such a big girl now and communicating more and more every day. She talks in total gibberish with the odd real word thrown in there; it’s pretty entertaining and very cool to see her add new words on a regular basis. Her favourite words are: “there you go”, “thank-you”, “hi Daddy”, “night night”, “shoes”, “coat”, “Lola”, “baba”, “outside” and yes..the dreaded “no!”.

Her health has been wonderful; despite a couple colds she has been very healthy. We do notice a cold does settle in her lungs and a rattley cough often hangs on longer than we’d like, but she does always fully recover. So, for a 1 pounder born with barely any lung buds, on a ventilator and oxygen, with multiple lung tears and collapses…she is definitely doing better than ever expected. J We’re still trying to wean her off the Prevacid for her reflux, but she’s not quite ready yet..as soon as the dose is lowered her reflux will flair and become very noticeable and cause her quite a bit of discomfort. Reflux with preemies is very common, but normally disappears at 1 year of age, so we’ll just keep trying in the months ahead to lower the dose of Prevacid very slowly to give her ample time to adjust.

I can’t even believe Story will be turning 2 this February! Were so thankful for her health, zest for life, happy nature and boundless energy. (really, I have yet to meet another toddler that is as happy or as active as Story!)

Happy Holidays!

Exciting News!

2009-11-27T05:13:00.000-08:00

Itsy is delighted to announce that $13, 262.00 was raised this year!! All proceeds will go directly to helping families who will be in the NICU over the upcoming holiday season.

We can't thank you enough for your generosity and support of Itsy!

2009-11-13T18:55:00.000-08:00

Mat, Story and I were interviewed by Cheryl Weedmark on AM980 morning radio show last weekend talking about Itsy, along with our friends Shae & Greg...it was early, but really fun! You can listen to the radio show here: (click on show archive and we're in the 7-8 am hour)

The upcoming fundraiser (1 week from today!) has been coming along wonderfully! We have about 20 more tickets to sell, before we're officially sold out! :)

Thank you all for your support and generosity! I can't wait to share the total amount raised. Stay tuned!

In other news...Story is growing, talking and running like crazy! She has a vocabulary of about 15 words and a whole lot of words that we don't understand yet! She has been so healthy, despite all the sickness going around..she has amazingly stayed very healthy.

Life is good!

Itsy event-3 weeks away!

2009-10-30T09:36:00.000-07:00

Thank you for your interest in Itsy’s upcoming “A Tiny Night” fundraiser on November 20th; tickets are ¾ sold out already! Just a few updates…

There are some amazing silent auction items that will be up for grabs at the event; a few sneak peeks for you….

~Professional snow removal for the entire upcoming winter season
~Round trip VIA rail for two and a night’s stay at Westin Harbour Castle hotel
~Weekend meditation course
~Box tickets for the London Knights
~Bike rental from Rocky’s Harley Davison
~And much, much more!

*Remember our theme is “tiny”! Bring your tiniest purse or wear your littlest tie for a chance to win a great raffle prize

*Aroma’s gourmet miniature appetizer menu will be sure to impress you; there will be loads of appetizers served, please come with a large appetite!

*Discounted hotel rooms are reserved under “Itsy” for all out of town guests; rate is $135/night. Call 519-442-4444 to book www.stationparkinn.ca (must book by Nov 10th for Itsy rate)

*See the Mom and Caregiver magazine’s November issue for a feature on Itsy; send the Mom & Caregiver your NICU story for chance to win free event tix! For more details: http://www.themomonline.com/

*Mat & Laurel Lunnen will be guests on the early morning radio show on AM980, “Saturday Mornings with Cheryl Weedmark”. Tune in from 7-9 am on Saturday, November 7th. Listen live at http://www.am980.ca/

*Watch /A\ Television station, during November, for an In Touch promoting Tiny Night!

* Keep your ears open…Itsy will be promoted on BOB FM during the month of November

*Please see the “Buy Tickets” page on http://www.itsy.ca/ order to reserve your spot for the event. (Please note there will not be paper tickets issued for the event; following your ticket purchase your name will be added to the guest list, which will be at the registration table upon arrival on November 20th.)

Thank you for your support!

Cheers,
Laurel

2009-10-10T18:54:00.000-07:00

Doesn't Story look like such a grown up girl here? We've been just staring at her in amazement non-stop lately at how quickly she's growing up. She chatters all day, gives us lots of sloppy kisses, imitates our every move and crawling is also now a thing of the past...finally! Her favourite things are dogs, cats and babies' we're not sure why she loves cats so much (Mat and I are NOT cat lovers), but she is constantly pointing them out and saying "meow"...it's pretty cute!

Our girly girl!

2009-10-08T17:54:00.001-07:00

Send us your NICU pictures!

2009-10-08T17:37:00.001-07:00

There will be a photo slideshow on display at the upcoming November 20th Itsy event; it will be made up of various photos of the miracle babies that have been NICU residents at St. Joes.

If you’d like to add some of your family's photos (we’d love to see early photos and also current ones!); please send 10-12 high res versions to: itsy.ca@gmail.com

http://www.itsy.ca/

www.itsy.ca!!!

2009-09-28T19:49:00.000-07:00

We are so excited to share with you http://www.itsy.ca/!! Please take some time to look over the website; there is so much to see!

Mark November 20th, 2009 on your calendars!

November 20, 2009!

2009-09-14T11:59:00.000-07:00

Mark your calendars! Friday, November 20th 2009 is the date for the 2009 fundraiser!

Mat and I have launched our charity, “Itsy”, which serves the families and the “itsy bitsy” residents of the Neonatal Unit at St. Joseph’s Hospital in London, Ontario. “Itsy” is a charitable organization, whose mandate will be to assist the families with infants in the NICU with the unexpected costs that arise. We will fundraise throughout the year and our hopes are that Itsy will grow, thrive and branch out in many different areas in the years to come. Emphasis this year will be put on our premier fundraising event, happening on the evening of Friday, November 20th. The cocktail style event will be held at Aroma Restaurant and will feature entertainment, guest speakers, silent auction, raffle prizes, fabulous fare and preemie-tinis to sip…all of which will be sure to impress you! Our theme this year is “tiny”, so expect to find all things small…complete with a gourmet miniature menu!

Itsy’s website will be launched on October 1st, 2009; event tickets will be available to purchase online, along with much more. Stay tuned!

We’re really excited for this year’s event; we have a fantastic group of people who have generously donated their time to sit on the planning committee, guaranteeing a very well executed and successful evening. Hope to see you there!

More info coming soon!

Mat & Laurel

2009-09-13T18:51:00.001-07:00

As you can see, Miss S had a GREAT time at the fair! Despite a goat eating her entire hand, which then went directly into her own mouth, a good time was had by all.

2009-08-27T17:04:00.000-07:00

I had to post these, Story is in heaven with her new princess kitchen!

2009-08-13T06:16:00.000-07:00

Story loves putting on my shoes..

Watching Daddy cut the grass...

I’ve been really behind on blogging lately, I suppose it’s a combination of being back to work and enjoying the summer! We’re finally getting some summer weather around here, so Story’s been enjoying the lake and being out in the hot weather. She’s been changing SO much lately, Mat and I just look at each other in amazement every day at the new words and hilarious things she’s been doing. She’s constantly mimicking and her vocabulary is growing so quickly…among other things she says: “thank-you” (which is so cute it breaks my heart), “don’t do that” (and points at Lola!), “mama”, “dada”, “hello” (and holds the phone up to her ear), “woof woof” (when she hears a dog bark outside), “what’s dat” (and points to everything) and “NO “(yes, the dreaded “no”—when she doesn’t want a kiss or doesn’t want to get out of the bath)….and the list goes on. She is just amazing, we still look at her in awe and can’t believe that this talking, funny, loving little girl was once our 1 pounder…we’re so proud of you Story!

2009-07-25T05:51:00.000-07:00

A $5 find at a garage sale and it's Story's new fav toy!

Auntie Heather visiting!

We took part in an amazing day, all in support of St Joes NICU...Kylies Kause is a fundraiser in memory of Steve & Lisa McGrails daughter Kylie. www.kylieskause.com $40,000 was raised this year!!

So many people out for the Kylies Kause was, it was very impressive!

This is a picture of NICU grads that took part in the Walk, it was neat to see all the former preemies

Our friends Shae and Greg and Story's fellow 25-weeker friend Addy

Story getting love from cousin Kennedy!

Nanny!

How cool is this bouncy castle?! Story LOVED it!

Fundraiser planning has started!

2009-06-24T12:37:00.000-07:00

Plans are now in the works for this year’s NICU fundraiser, set for November 2009! Mat and I have a great group of very talented people, who have volunteered their time to help on the planning committee; we’re so grateful to have great people who are just as excited about it as we are.

For those who aren’t familiar with what we did last year, we raised money (through a hastily organized event that was very well attended) and all the funds raised went to help families who had infants in the St. Joseph Hospital NICU over the Christmas holidays. We purchased day to day items, such as gas cards, restaurant gift certificates, grocery cards, parking passes etc.. that would hopefully ease some of the financial pressures felt by the families.

This year, we have months to plan and with this amazing committee on board, you can expect an outstanding event. I won’t spill all the plans yet, but I’ll keep everyone up to date as the event solidifies. We’re really excited for it and I can’t wait to share what we have in store!

2009-06-21T13:47:00.000-07:00

Happy Fathers Day to Mat, my Dad (Jim!) & Mat's (Andy!)...we love YOU! We spent a great day at a water park here, so much fun! Story rocked her bikini (thanks Grace for the awesome hand me down) and had fun at the splash pad. Next year, we figure she'll really love it there.

Lots of love today to all the Daddy's out there! <3

Happy Adjusted Birthday!

2009-06-16T17:50:00.001-07:00

DJ Story! Does this look like she's rocking the decks? Taking after her Daddy maybe?

Well, tomorrow marks Story's due date! She is "officially" 1 year old now! I think she deserves to have two birthdays, don't you?! I think we'll have to do a little celebrating tomorrow to mark the day.

Story isn't walking on her own yet, but she is LOVING to boot around on her walker. So funny!

We've been doing some home renos lately, so the final pics are below...I wish I had "before" pics, but the description of the bathroom was a retro 1970's motif and the living room a heinous gold. So, we're MUCH happier with these results!

"Happy Due Date Birthday", Story girl! xo!

Pool party!

2009-06-07T18:01:00.000-07:00

Couldn't stop snapping pics of Story's first swim in her outdoor pool! She LOVED it!

Lola's BFF..

2009-05-27T19:33:00.000-07:00

I just can't get enough of these shots!

Story just maxin' and relaxin'

Story's friend, Wyatt

oooohhhhhhhh, we have a Sens fan in the house..that makes two of us!

Well...look at that, Lola has a new BFF (best friend forever!) Who would have ever thought that crazy Lola would actually love a baby!!! She does and it's so funny to see them play together; anyone who has ever met Lola knows exactly what I'm talking about. ;)

It's been SUCH a busy time at our house; we've definately been taking on too much lately and need some downtime. Mat and I both start new jobs this coming week; that combined with home renos, finding daycare for S and just life in general..it's been nuts to say the least. So, my full time Mom life is drawing to a close, but the good news is that we found a great home daycare for Story. She's been doing a trial week this past week, spending a couple hours a day with her new sitter and it's been going great..whew!! Story is so independent and secure, she did just fine...it was more me who needed some reassuring. ;)

Story had her Developmental Follow Up appointment last week, which is when she meets with her former NICU Dr's who track the progress of their former preemie patients. They said that Story is doing AMAZINGLY well and is on target for where she should be, as per her "corrected" age. Great news! The feedback we got was all positive and they said for a 25-weeker, with such a small start in life, that there was no outward signs of delay or developmental issues. We don't need to see them for a year, so another appointment that we can erase from our routine. :)

...on a final note, we have a Sens fan in the house! (thanks Mark & Kari for the sleeper.. I love putting it on Story, but Mat not so much..hehe!)

On the move..

2009-05-19T18:34:00.000-07:00

Patio time!

Cool toy from Uncle Stu & Aunt Kari

Story loves standing at the door watching the action outside!

I've been slacking on blogging lately, now that I know people still check our blog (thanks for your comments!) I feel like I need to keep on top of it, because I don't want to lose ya! With the great summer weather we've been having, Story and I are too busy being outside soaking it all in. We spend alot of time walking downtown, visiting friends on patios and just loving not being housebound. Story loves sitting on the Starbucks patio; a girl after my own heart...wink wink! ;

She is so mobile now, not walking yet..but pulling herself up on absolutely everything and cruising from the coffee table, to the couch and over to the dining room table, so funny to see her concentrate so hard to get somewhere. She's also mastered climbing stairs, so we quickly had to baby gate everything in site!

Eating issues seem to be a thing of the past (am I really saying that!??), but yes, we are having no issues with Story regarding her eating. She is loving food! She will eat anything we put in front of her and seems to be really enjoying herself, which is so great to see. Her bottles are easy, now that she only has three a day and we've just started introducing water/juice. She is no where close to ready to drink out of a sippy cup, due to choking..but a slow flow nipple on a bottle seems to work ok. She chokes a bit on the looser liquids, but we're working on it and I'm confident by summer she will be drinking water/juice with no problems.

It's been a busy time here in the Lunnen house; Mat's been working alot on fence work on the side and we've been completely renovating our downstairs bathroom. Who knew a bathroom could be so much work! We are just working on the finishing touches, so I'll post a pic when we're done, for all the renovation junkies out there.

I'll try and get back to blogging at least once a week, so stay tuned!

Sad day...

2009-05-12T14:38:00.000-07:00

I'm not sure how many people remember little miracle baby, Kayleigh, who I've mentioned a few different times on this blog. Well, she went to heaven last night and is now out of pain and suffering. I've never met Kayleigh, but have been following her blog since she was born 11 months ago and feel so unbelievably close to her and her family! My heart is so sad for the entire family, I can't imagine the loss they are feeling. Kayleigh was never supposed to live right from her conception and she faced so many hurdles over the past year; her family was blessed to have loved her and seen her determination and strength...but this has got to be the hardest day yet. Mat and I will give Story some extra love and cuddles today and be thankful once again for her life.

Please keep the Freeman family in your thoughts and prayers; you can visit Kayleigh's blog here.

I'm back bloggin'!

2009-04-26T16:21:00.000-07:00

Story is loving the strawberries...

Here is what I walked in to see one day after a afternoon nap!

Literally, the happiest girl we know.

Story's new dollhouse, after Mat spent hours putting it together...really, hours!

I haven't written a blog post in so long, although maybe nobody noticed; I have no idea who (if anyone) reads this anymore! I dropped our laptop a few weeks ago and broke it (sorry honey!), but it's back now..I didn't realize how much I used the internet, until I didn't have it. Major internet withdrawal. :) Anyway, things are great...Spring is here...life is good! Story is growing and changing like crazy these days; Mat and I can't even believe how many accomplishments she's had lately. Just to name a few....eating is FAB; she is loving to eat pretty much everything. She hates eating off a spoon, but now just eats chunks of whatever we're eating for lunch/dinner. Big news, we've been able to stop thickening her milk and we're practicing with juice/water, but we're going to have to take it slow with the thinner liquids, as she still chokes alot, which is due to her paralyzed vocal cord. We're now done with our OT/feeding specialist, who feels Story and I don't need any additional support in the feeding department. BIG progress!

She now crawls around like a maniac, pulls herself up on furniture and every day when we get her in the morning she is standing in her crib, smiling and shrieking at us! too cute!! She is babbling alot now and we're really impressed at how loud her voice is; until now we weren't sure how loud her voice was going to be with only one functioning vocal cord. We're pleasantly surprised that her babble voice is fairly loud..maybe a bit hoarse, but when she tries to project or cry we can barely hear her. We're ok with that and just happy that she'll be able to speak fairly loudly.

Here are some pics; I know there's a ton..I just can't choose which to post, so here's all of them!

Nanny & Poppy Visit

2009-03-30T19:34:00.000-07:00

She likes to stick her finger in her nose these days, a new game! ...or more and more like her Dad every day! ;)

Nanny visiting...

Poppy and sleepy Story; she rarely slows down long enough to cuddle like this!

2009-03-27T18:31:00.000-07:00

Our home had turned into a playground, so we turned our spare room into Story's playroom and she loves it!

This gate was originally meant for Lola, but here's Story pulling herself into a standing position all by herself!

Cute little bum!

She's quite the Daddy's girl...<3

We took a Sunday trip out to a sugar bush, yum!

Our beautiful girl napping in the car...as usual!

Shy Story and Visiting the 3 L's...

2009-03-21T11:39:00.000-07:00

We took a little road trip to Orangeville last week to visit my friend Gillian and her three beautiful L's...Lacey, Lyla and Lucia , shown in the above pics! Gillian is my very talented photographer friend, who once again took some amazing pictures of Story; she'll post a sneak peak her blog, so stay tuned! If anyone is looking for fabulous, unique family photos Gillian is your girl. Really, her pictures really capture that magical something that is rarely caught on film.

Story has made some major eating improvements over the last few weeks! She now can drink her milk with alot less thickener, we finally transitioned to a normal nipple for her bottles and the big one...she can now drink a bottle somewhere other than her room, with the light off and all swaddled up! This is HUGE! It makes our life alot easier and feeding way less time consuming for all of us. She is preferring to stand to drink her bottle, which is funny...but we don't care how she does it, as long as she drinks! yay! We're now able to have some flexibility if we're out and she needs a bottle, our life is revolving less and less around feeding time.

She's also is getting shy on me. Now when she sees the camera, she gets all serious and I can't get a smile out of her for the life of me! I gotta really work for them now. ;)

Birthday Pics!

2009-03-01T12:01:00.000-08:00

New birthday toy!

Uncle Mark

Nanny

Nanny & Poppy

Grandma and Grandpa

Grandpa

Granny

Aunt Julie

Uncle Rick

Aunt Lizzy & Uncle Mark

She was SO happy when we were all singing happy birthday, it was so cute!

This is Karen, she was Story's primary care nurse while she was in the NICU. We became really close with Karen; she was a very important part of Story's life. Thank you Karen!

Jewelley box from Mat and I

Of course, whenever my Dad comes to visit he gets put to work! He was putting in a new kitchen faucet here.

Ta da! All finished and looks fab!

Day 365

2009-02-27T05:39:00.000-08:00

This is the night you were born, you were so tiny..but we couldn't believe you were OURS!

You are 1 month old here and only 1 lb 7 ounces...

This is your first bath, you loved it! You were almost 3 lbs now.

Here you are now getting bigger. You absolutely hated this yucky contraption you had to wear for months, but it helped you breathe.

Now you're 3 months old and we're all living in Care By Parent together in the hospital and you're 7 lbs.

You're finally home! You loved sitting in your pink papasan chair, we never wanted to let you out of our sight, so you napped your days away in the comfy chair. You didn't like the tube in your nose, but it was how we fed you because you were too sleepy to wake up!

Here you are sitting in Daddy's lap and you are tube free! This was a really good day for us and you were probably really happy to get that tube out of your nose too, huh?

Getting even bigger now!

Grinning away, as usual!

Your hair is finally growing a little bit now! You're becoming such a big girl.

..and here you are now at 1 year old and 20 lbs!!!!

How far you've come...

Story,

You are the best thing that ever happened to your Dad and I. You changed our life in so many ways and even though when you were born we were scared, ever since that day you only brought happiness, joy and so much love into our life.

You have an amazing smile that never ends and to wake up to your squeals of laughter every morning is something that will never be taken for granted. You had a tough start in life, but you showed us how strong, resilient and AMAZING you are! You weren't about to let being born 4 months early stop you!

I am watching you scoot around the floor on your bum right now and trying to crawl; you are too cute for words! Soon enough you'll be walking, talking and telling us who's boss...and we can't wait!

We love you up to the moon and back again; Happy Birthday!

Love,

Mommy & Daddy

Day 363

2009-02-25T19:46:00.000-08:00

Story opening an early birthday present, thanks Sash!

Story and her friend Sloane. Sloane started to cry and Story looked very concerned!

Story loving her jolly jumper..yes, that's a whole lotta drool on her hoodie below!

Story and Auntie Heather

Wow, well we're almost at Day 365! How quickly this past year has gone. It was a 1 year ago today that we went to the hospital after I had labour symptoms, never thinking our baby girl would be born only 3 days later. We're celebrating Story's 1st birthday this Saturday with our family and we can't wait, we have SO much to celebrate!

Day 353

2009-02-12T10:33:00.000-08:00

I'm pretty happy that Story's hair can finally be gathered into a mini pony tail on top of her head! :)

Story's new favourite game...lick Daddy's head while on his shoulders! hehe!

Well, Story is slowly getting better, but this cold definitely hit her hard. She had her regular appointment today at the Respirologists who had a listen to her chest and said it sounded as though her right lung is slightly "junky" (in her words), so she prescribed a couple puffers that we can use if she doesn't sound clearer in the next 48 hours. She explained that because Story has chronic lung disease, colds will be harder to get rid of for at least the first 2-3 years of her life. The Dr said that lungs continue to grow till children are 8 years old, so right now Story's lungs have alot of scar tissue on them..but as time goes by new lung tissue will grow over the existing scar tissue. Story is at a higher risk for asthma/allergies, both from prematurity and genetics.. so we are praying that she won't have to deal with either of those, as it would be very hard on her lungs.

In other news, our good friends Lucia & Jonathan left for St. Maarten today to await the arrival of their baby! I am anxiously awaiting the phone call from you, Jonathan! We love you guys!

Day 348

2009-02-07T19:51:00.000-08:00

Story got a little tired while playing..she needed a power nap!

Well, I'm a little behind on blog updates, but I've been busy taking care of my sick girl. yes, that's right Story has her first cold and it's a wicked one. I knew it was bound to happen sometime, but it's still really upsetting to see her so sick. We took her to the Dr's yesterday where she was given some antibiotics for an ear infection and some drops to loosen her nose..but tonight she got a really bad cough and we thought it sounded like it went to her lungs (which is what we really don't want!). So, we took her to emergency and thankfully they said that she has a slight wheeze in her lungs, but it didn't sound super serious right now. We'll just keep watch on her symptoms and hope she starts to get better soon. It breaks our hearts to see her suffering, but through it all she has stayed amazingly happy and full of laughter and smiles! What a happy girl we have!

The emerg Dr actually said that she was probably the best looking 25-weeker he had ever seen, so that was really great to hear and just reminded us once again of how blessed we've been.

The good news is she's started drinking her bottles again! Her strike lasted 13 days and we don't know why she occasionally does this, it might be reflux related..but it's really hard to pinpoint what is the cause. So, we did almost 2 weeks of 100% sleep feeding and now were back on the bottle bandwagon..thankfully! It's so stressful when she stops eating and we worry about dehydration, but at least she still sleep eats like a champ to get us through the rough bits.

oh ya...we have a 19 pounder!

Day 334

2009-01-24T07:26:00.000-08:00

Enjoy these cute pics of Story! She is such a ham for the camera..she really knows how to work it! (which she gets from Mat, of course) ;)

She's been having a good week, but is on a bit of an eating strike. We're not quite sure why she doesn't want to drink her bottles, but we've resorted to driving her around till she falls asleep and then giving her the bottle while she is dead asleep, which she takes with no problem. Sleep feeding isn't the best scenario, as it doesn't help her learn how to want to eat..but at the same time, sometimes you gotta do what you gotta do!

Day 328

2009-01-18T14:31:00.000-08:00

Sleeping Story....she never falls asleep in your arms, so this is a treat!

Even when she cries, she's cute...she didn't want to get her picture taken.

...but then quickly got over it, smiles again!

Fell asleep, sucking her thumb in her exersaucer...aww.

I can't resist the sleeping shots...

Day 321

2009-01-12T19:16:00.000-08:00

Our appointment with ENT went well today; Story barely fussed when the camera went down her nose and she stayed pretty still the whole time. Since she was much calmer this time, so was I....last time we were both crying! The Dr said that her right, functioning vocal cord looks like it has now compensated for the left one and now swings over further than it should in order to make contact with the left. This is great news and explains why Story's voice has gotten much louder lately and why she swallows her bottle easier than ever before. YAY Story!!

She's also made some other huge accomplishments this week. She can now sit alone, unsupported and play with toys on the floor and in even bigger news, she cut her first tooth! She was biting on my finger when I felt this razor sharp sting and when I pryed her mouth open, there was the top of this little white tooth! wow...our baby is growing up!

Story wants to be held alot and loves being propped up on my hip, so I bought a new sling that let her just hang out in a little pouch on my hip; she's a happy little pea when she's in it. We're heading out to a baby-wearing support group tomorrow, so we'll chat and walk with some other baby-wearing mamas :)

Day 320

2009-01-11T07:20:00.000-08:00

Well, I hate to even say these words..but I am heading back to work in only 16 weeks time! wow, that doesn't sound very far away, does it? auughh!! From the day Story was born, my work showed nothing but kindness, generosity and flexibility; I've been extremely luck to have had over a year off. I'll never forget how my co-workers raised hundreds of dollars for Mat and I the week Story was born to help with the unexpected costs we ran into or how much money they raised by holding a chili lunch with all donations going to our fundraiser in November. It was really amazing! I've really come to appreciate my job and realize how blessed I am to have great bosses and an amazing group of friends where I work. Thank you everyone!

So, along with going back to work in May, comes the hard job of finding daycare for Story. She can't go to a regular centre or home daycare, because her immune is still too fragile to be around that many kids and we all know what a germfest daycares are! I am looking for possibly a stay-at -mom (of one child) who may want to welcome Story into her home to provide a playmate for their own child and a way to make some extra money. I know there are some great moms out there who would be interested in this, but the hard part is finding them! Other options are a nanny who would come into our home, which we're looking into.

If you know of anyone who might be interested in this and would be a good fit for our family, please let me know. I would love to be able to find someone through a trusted friend and begin the process of getting to know them well before I head back to work. We know it will be hard to find the right person, so any recomendations anyone can offer would be greatly appreciated. Put your thinking caps on and let me know!

(Story's ENT appointment was cancelled last week and moved until Monday, so I'll post the results tomorrow)

Day 313

2009-01-04T11:37:00.001-08:00

Story has started to REALLY smile, as you can see in the above pics..it's pretty funny!

Bottling has been going well, every now and then she will go on a bit of an eating strike, but for the most part she is getting what she needs. We're having a ton of fun trying new foods and we're doing something called Baby Led Weaning; which basically means we go straight to finger foods and skip purees. We're doing a combo of purees and fingers foods, but she definitely prefers feeding herself, so we're going with that!

We have an appointment this week with ENT (ears/nose/throat) to take a look at her paralyzed vocal cord. Despite her getting scoped, which is awful..I will be interested to hear whether her other cord has learned to compensate. Both cords need to meet in the middle to make a sound and Story's left cord is paralyzed slightly off of midline, so we're hoping that eventually the right cord will learn to swing over further than its normally would to meet the left cord and therefore make a louder, clearer sound. We've really noticed that she has gotten alot louder lately, so we're hoping that there has been some positive changes.

Day 307

2008-12-29T19:44:00.000-08:00

Happy 1st Anniversary, Mat! What a year we've had....let's see...we got engaged last September, 3 months later got married, 8 weeks after that Story was born, 4 months later she came home from the hospital...WOW, we can handle anything that 2009 wants to send our way! It's been quite the ride, but I wouldn't change a thing. We love you!

Day 309

2008-12-29T19:10:00.001-08:00

Story and Granny..

Visiting the Stewarts..

Uncle Mark

The "other Laurel" ;)

Great Uncle Rick

Great Aunt Julie..

Grandpa...

Cousins!

Nanny...

Morgan, Kennedy and Biscuit!

Story's Aunt Jen and Morgan

Day 301

2008-12-23T18:45:00.001-08:00

Merry Christmas from our family!

Day 295

2008-12-17T08:44:00.000-08:00

I'm not really sure who reads this blog, but I know there are a handful of preemie moms who follow it and I'm sure there are others who I don't even know about. I know I'm guilty of regularly reading a few blogs of people who I don't know, but share a common interest. I have learned so much from other parents of preemies who many times have offered me the best advice and that's because they have first hand, day to day experience and their expertise is often better than the many Dr's and specialists we see.

So, I will share some of our own tips/information that hopefully will be useful to any other parents out there who have babies with similar struggles. This is what has really worked for us; it doesn't mean it will work for you, as all babies are different, but if anything here is useful and can help your baby, then that's great! ok, here goes...

Severe Reflux:

Keep baby upright for 30 minutes after feeding (longer for formula fed babies)
Raise crib mattress, we put two phone books under one end of Story`s mattress
Don't put diaper on too tight
Burp every 2 ounces when bottling
Prevacid did wonders for Story's reflux, much better than Ranitadine; which was what she was sent home from the hospital on
Wearing Story in a sling for alot of the day helped
If you`re breastfeeding, be aware of what you`re eating that might contribute to the reflux...examples: dairy, citrus, fatty and caffeine
Thickening milk helped tremendously with Story`s reflux (more info on thickening below)
Great forum here (<----click) for reflux; as well as motility issues, aversions and g-tubes.

Oral Aversion/Sensory Issues:

Story stopped eating for about an 8 week period before we realized what she needed in order to bottle in a comfortable way. She was experiencing some sensory issues and she needed a quiet, dark and stimulation free place. What made the world of difference was swaddling her in large blanket, this immediately helped her become more focused on the task of eating. Rocking her, a white noise machine, a dim room and holding her slightly tilted towards me (breastfeeding position) also helped. We still need to do this for her, as she eats the easiest while in a sleep state, but we're starting to bring back some stimulation a little bit at a time. For example, turn on a small light in the room to start, then a few weeks later take away the noise machine etc... There is a great article on sleep eating here.
There is a great website/blog written by two occupational therapists who specialize in feeding disorders in children and have a wealth of knowledge on preemies, click here for their blog
Our occupational therapists recommended putting milk on toys you know will go in the baby`s mouth, as a way to help with oral aversions. Aversion is often because the baby was ventilated or tube fed long term and therefore associates things going in their mouth as being very unpleasant. One tip that was given to us was to put the nipple in Story`s mouth from the side, rather than front; that would hopefully feel different that be ventilated or having a tube put down their throat.

Thickening Milk/Pumping:

Many preemie mom's pump for their baby and we all know how extremely difficult it is to do long term, but breast milk is so important for all babies, but preemies in particular because of their compromised immune system...so we do what we have to do! There is a great website/forum for moms who are exclusively pumping and has any question you can imagine on it, from how to increase milk supply, pumps, freezing or just some support for those days when you feel like throwing the pump out the window! Click here.
I loved the Medela Symphony hospital grade pump. I was able to rent it from our local health unit for half the amount I was paying when I rented the old school pump from the hospital
Due to Story`s paralyzed vocal cord, we`ve needed to thicken her milk to prevent choking and aspiration. For breast milk, the only thickener available is called Simply Thick and can be purchased through the Specialty Food Store in the Children`s Hospital in Toronto. Since all other thickeners available are carbohydrate based, a natural enzyme in breast milk breaks down the thickener very quickly and the milk will return to its original, thin consistency. Simply Thick is gel based, rather than carb based. I`ve just recently learned that the FDA is looking into a preservative called Sodium Benzoate that is used in Simply Thick and it might not be safe for infants under one year, so if you use Simply Thick I would bring it up to your pediatrician or Dr. We just didn't feel ok after hearing this, so we stopped using it immediately.
If you feed your baby formula and it also needs to be thickened, there is Enfamil A Plus Thickened and if its not quite thick enough, there is a commercial thickener available at drugstores called Thicken Up and you can continue to thicken up the formula by adding a little until you reach the desired consistency. We found that if we added too much Thicken Up it would make Story`s reflux out of control, but she seems to handle half a teaspoon per bottle.
Here is a link for breastfeeding a premature baby
Nipples: we found that the Haberman nipple worked best for Story. They are expensive, hard to put together and a pain all round...but they are a variable flow (great for thickened milk) and closely resemble the breast and for some reason Story can`t seem to suck on anything else quite as easily. They are only available for purchase online or in hospital pharmacies.

Preemie Parenting & Info:

Baby Center has a great forum here for parents of preemies.
Blog on the latest in premature baby research here
Mat bought this book at Chapters the week Story was born and it helped tremendously in preparing us for the first few weeks and assisted us in deciphering the many medical terms we heard in those early weeks.

Day 293

2008-12-15T09:46:00.000-08:00

I love my new fireplace!!!

Story enjoying broccoli a little too much...

Lucia, Jonathan and baby bump

Lu and Story...

Christmas is almost here and we're SO excited! Tree is up, presents bought and we're looking forward to heading to Mat's familys on Christmas Eve and then onto Perth on Christmas day. Mat surprised me and gave me my Christmas gift early, but I'm so glad he did, so we can enjoy it right away....it's a beautiful fireplace! I've been wanting one for a long time and this one is beyond what I had hoped for. Thank you honey!! <3

Our good friends Lucia & Jonathan are moving to Saba in a few weeks time; which is off the coast of St Maarten, where Jonathan is in med school. I'm really going to miss them; thank goodness for Skype! Lucia will be giving birth in late February; what an amazing adventure for them! Lucia is giving Story some goodbye lovin' in the above pics.You can follow their travels at on their blog <-----click.

Story is doing great, feeding is fairly smooth and she is sleeping like a champ...we really can't ask for a happier baby!

Day 290

2008-12-12T22:11:00.001-08:00

Day 288

2008-12-10T10:30:00.000-08:00

We received a nice comment on the blog from parents of Kylie, who was born in 2004 at 29 weeks. Sadly Kylie only lived two days. Her family does an annual fundraising event called "Kylie's Kause" (www.kylieskause.com) and the money goes towards purchasing GIRAFFE OMNI beds, which are the top of the line incubators that greatly improve a preemies chance for survival. The Giraffe beds weren't available when Kylie was born, but thanks to her family Story spent her first few weeks in one. Kylie's Kause has raised $128,000 in total!!

Kylie's family saw our story in the London Free Press and contacted us; we will definitely be taking part in Kylies Kause Walk/Run this coming July.

We've received a ton of positive feedback from people who saw the article in the paper; it's been great in spreading awareness about prematurity. It's also been a means of sharing Story's journey to those parents in the NICU and hopefully provide them with a sense of hope and encouragement. I know personally when we were in the NICU with Story, we found so much comfort in seeing the babies who were also 25 weekers and were a few months ahead of Story; it gave us some light as the end of the tunnel. There is a board outside the NICU that has pictures of formers preemies on it, now as healthy kids and we would scan the board and stare at the former micro-preemies and just imagaine that one day Story would look like the healthy kids we saw in the pictures. We understand how important it is for parents to see that these little, fragile, sick 1 pound miracles can grow and thrive. We know that not all preemie parents have a baby with a happy ending, alot of preemies don't survive and our heart breaks for those families. Our goal of the fundraiser and this blog as well, is to provide some relief and a feeling of hope...because we know exactly what they are going through!

I sit here all teary eyed and overcome with emotion, I wonder when I will be able to talk about our NICU journey without crying. People's generosity in donating to our fundraiser has really touched me and made me a bit of an emotional mess these days! For example, yesterday I opened our mailbox to find a xmas card with a $100 donation in it from someone who doens't even know Story, but was touched by her story. Thank you Frine!

The pics are of Lucia carrying Story is a sling that is actually for Lucia's baby, but since her baby isn't coming until February Story had to try it out first. Heather, Sandra and I bought the sling as a gift for Lucia and Jonathan, it's amazing...check out the website here.

Day 287

2008-12-09T08:15:00.001-08:00

Day 284

2008-12-06T13:55:00.000-08:00

Check out the London Free Press newspaper today for a column on our fundraiser!! Meredith Clarke was so great in attending and then featuring it in her "People You Know" column; thank you Meredith for everything!!

Check out the link here!

As we get closer to Story's one year birthday, many people have been mentioning how much Story has changed over the last 10 months. She has come SO far, we're so proud of her and everything she has been through...all the while with a smile on her face! Here is a before and after picture of our miracle; starting out as a 1 pounder and now a healthy 17 pounder.

Day 281

2008-12-03T18:43:00.000-08:00

Donations are STILL coming in!! It's amazing; so we have yet to reach a final amount raised, but it looks like it will be close to $3,000!

Enjoy the Story pics; she is quite the messy eater these days!

Day 277

2008-11-29T13:45:00.000-08:00

Last night was a HUGE success!! Cello was packed and people were so generous with donations and purchasing raffle tickets; we were so happy! We don't have a final amount raised yet, as we're waiting on the donation from the martini sales to come in...but we're already well over $2,000!!!

A large group of NICU nurses came as well, which was a great surprise. They all stayed well past midnight and we're the last ones with us on the dance floor!

We are just so amazed and thankful at how many people assisted in getting this fundraiser off the ground and raising so much money...thank you to each and every one of you!

Enjoy the pics! (does anyone else find that photo of Mat holding the martini to be really funny?! Mat with a martini??? haha!)

Day 275

2008-11-27T11:04:00.000-08:00

We're super excited for our fundraiser tomorrow night! I'll update the blog on Saturday with pictures and details on how it all went.

As you can see in the pics, Story is a VERY smiley girl these day!

Day 268

2008-11-20T11:52:00.000-08:00

One week to go until our fundraiser at Cello! We've continued to receive a TON of donations. People & community partners have been so kind to donate items for our raffle and we've got some great items so far! I just found out today that November is Prematurity Awareness Month, so how perfect that our fundraiser happens to fall on this month! Maybe this can be an annual thing for Mat and I; every November we could plan a bigger and better fundraiser. So, stay tuned!

Story is doing great; her eating situation is even better! She still needs a quiet, distraction-free place to eat..but she is eating like a champ and it's not an upsetting activity for her anymore. She calmly takes her bottle, as long she is wrapped up cozy, rocked and shhhhh'd. We've learned alot from our feeding specialist and found what she needs to make eating a good experience. I've also done alot of researching a found that eating is often a challenge for preemies, for a variety of reasons. Preemies often have some sensory disorders and we think Story finds it hard and basically impossible to eat if there is any distractions. Even the slightest noise can disrupt her enough to make her stop eating. We swaddle her up, put on a white noise machine and rock her and that helps her go to a semi-sleep state; which is when she eats the easiest. It took awhile for us to find out exactly what she needed, but now we have; which has taken all the stress away for her and for us.

Day 261

2008-11-13T14:23:00.000-08:00

Good news for Story's virtual friend Kayleigh! She's come through her heart surgey and is healing wonderfully. Such good news! It's amazing how much you feel connected to other preemie parents; it brings me right back to when Story was in the NICU in those early, stressful days. Here is a pic we sent the Freeman's..Story giving Kayleigh a virtual hug!

www.kayleighannefreeman.blogspot.com

Day 258

2008-11-10T09:57:00.000-08:00

We're getting such a GREAT response for our fundraiser; we're so excited!! Our first donations came in on Friday...thank you to Nina Stewart, Aly Mulder & Helen Keys for being so generous and quick to support us!

Other exciting news, Mat and I will be on A-Morning (the A-Channel Morning Show) to promote the event. Tune in at 8:20am on Monday, Nov 17th to catch our big debut!

In other news, Story has been doing fabulous..eating has been going much better. She has gained some weight (wooohoo!) and tipped the scales at 16 lbs! If things keep going like this, I think we will be free and clear from any sort of tubes. yay!

Thank you again everyone who is there for us in so many ways, rooting for Story, praying for her and supporting us with our event. We're really blessed to have so many great people in our lives!

The above pics are of Story's cousin Morgan; too cute!

Fundrasier for Families in the NICU
Friday, Nov 28th 8pm
Cello Supper Club, 99 King St, London

Day 252

2008-11-04T14:55:00.000-08:00

(click on poster to see larger version!)

We've already gotten such a GREAT response for our fundraiser!! We're just so amazed by the feedback and support we've recieved from our family, friends, workplaces & even complete strangers. I have a feeling we're going to be able to raise a ton of money from donations and it's going to make such a big difference in a few families lives. Thank you to everyone who is helping; we really appreciate it!

A friend of Mat's has donated his time to create this great poster for us..thank you Neil! The poster is in the shape of an incubator; how cool is that?!

Hope you all can make it on November 28th!

Fri, Nov 28th
8pm-1am
Cello Supper Club, London ON 99 King Street
An evening of music, hors d'ouevres and raffle prizes!

Day 251

2008-11-03T07:21:00.000-08:00

Mat & I have some exciting news! We are holding a fundraiser at Cello Supper Club (here in London) to raise funds for families that currently have babies in the NICU at St Joseph's Hospital. Donations will be accepted at the door and all money raised will go towards items such as: medical supply rentals, parking passes, gas coupons, dinner gift certificates and other necessary items families may need during their NICU stay. During our four month NICU stay we saw many families struggling to manage...so we want to help!

The evening will consist of music, hors d'ouevres and raffle prizes. Cello Supper Club is a beautiful lounge with great ambiance; it will be a fun night out for all who attend! www.cellosupperclub.com

We've had a great response from people so far, but some who are unable to attend have asked about donating anyway..which is GREAT! We've set up a PayPal account to make that possible. If you are interested in donating, please let me know and I will send you the Pay Pal request, where you can donate online using your credit card. (please include how much you would like to donate in your email). My email is: laurel_mikolaitis@hotmail.com

Poster coming soon..stay tuned! Thanks so much for all your support!

Laurel, Mat & Story

Fri, Nov 28th
8pm-1am
Cello Supper Club, London ON 99 King Street
An evening of music, hors d'ouevres and raffle prizes!
http://www.facebook.com/event.php?eid=55895614808&ref=mf

Day 246

2008-10-29T07:26:00.000-07:00

Story had her first taste of rice cereal this week and despite not much going down; she loved playing! By our 3rd try she was swallowing a little and seemed to have no problem taking food off a spoon; which was great. It was fun to watch her face as she tried a totally new thing!

Feeding has been going better; we seem to have a string of good days...followed by a few no-eating days. All in all, the overall eating situation has been slowly improving and we're in a way better place these days.

Lucia bought Story an early Christmas present, Sophie the giraffe...she's been obsessed with it..eating, biting and sucking on it all day. :) Thanks Lu!

Story has a preemie friend, Kayleigh, who we only know from each others blogs...but she is in need of prayers right now. She has defied all odds from the moment she was born at 1 lb, but now 4 months later she is faced with her biggest hurdle yet. She is in desperate need of heart surgery, but the Dr's are waiting until she is strong enough to handle it; basically it's a race against time. Please check out her blog and send special thoughts and prayers her way: www.kayleighannefreeman.blogspot.com

Day 239

2008-10-21T12:52:00.000-07:00

Fall is definitely here! We had a fabulous Thanksgiving weekend enjoying the last of the summer weather. Mat, Story and I went to Appleland and Story actually had a blast! We weren't sure if she was too young to care, but I wore her in my sling and she loved staring at all the people and stuff going on.

The eating situation is about the same; we have good days and bad days. She still only will eat if she is sleeping, so if she naps alot one day...then that's a good eating day as well! Basically, as soon as we see her drift off, we run to get a bottle ready asap...because if she wakes back up, then we're out of luck. She hasn't been weighed again, so not sure if she is gaining or not.

I forgot to mention in earlier posts, that we saw Story's eye Dr a couple weeks back and she is no free and clear of ROP!! It was such good news to get because the eye Dr and his eye clamps were VERY traumatic....probably more so for me than for Story. Now we only have to see the eye Dr once a year; preemies who had ROP are prone to be far sighted and also have a lazy eye..so the yearly exam will watch for those things.

My bestest friend, Lucia and her husband Jonathan, are going to have their first baby is February. Super exciting that Story and their baby will only be a year part! The above pic is of Lu at only 21 weeks!

Day 228

2008-10-10T14:25:00.001-07:00

Story and more friends at the pool; Sloane and Wyatt!

Day 226

2008-10-08T09:52:00.000-07:00

Just returned back from Story's pediatricians, who is really happy with Story's progress...other than she hasn't gained any weight over the past 2 weeks. Our good eating roll has been coming to an end and it seems now she is back to eating when she is sleeping or really tired. Our Dr is going to refer us to the surgeon who deals with g-tubes, so we can discuss that possibility. The referal doesn't mean we will definatley get the tube, but it does help us learn more about it and if the time comes when she may need one, then we are already connected to the Dr who would do the procedure.

I am super sick with a cold this week and praying that I don't pass it along to Story...so far so good and with the antibodies to my sickness she is getting though my milk, we're hoping that she can ward it off..(GO breast milk!!) :)

Our Dr also said we could take Story to swim classes at the pool! With chlorine killing alot of bad bacteria, she thought it was safe and good for Story's muscle tone to take her swimming weekly. yay, so fun! We're going to go this Fri; can't wait!

Also, the deck is DONE! (well for the most part anyway and it looks fab!)

Day 223

2008-10-05T09:27:00.001-07:00

Story and her friends Sloane, Yasmina and Mateo (still inside at this time!)

Day 221

2008-10-03T08:59:00.001-07:00

We all had a great time at Mark and Liz's wedding..congrats you two! (I still can't believe my baby brother is married!) The first pic was taken back in high school when they first met..wow, how young they look!

Over the past month Story's eating has been going downhill, to the point where she would only drink her bottle at night when she was sleeping. So, we were packing it into her all night long...BUT the good news is over the past 4 days she's decided she wants to eat again. yay!! So, we`re really hoping that this keeps up! We were getting really worried about how much milk she was getting and one day we even had to put the dreaded tube back in (not a good day!).

We`ve got a ton of support from our Dr`s and we`re now seeing a feeding therapist weekly to help us through the rough parts. It`s hard to know exactly why Story is dealing with some oral aversion, but like I mentioned earlier it`s not uncommon for preemies. We`re just really hoping she stays on this good roll and we don`t have to look into more drastic measures to get her food into her. We`ve talked to Dr`s about the possibility of her getting a g-tube; which is a surgically placed tube that runs into her tummy from her belly; which would allow us to tube feed her through it...rather than the ng-tube (which is through her nose and is not meant for long term.) The g-tube is a last resort if she stops gaining weight or feeding altogether; we are prepared for this now, if the time comes for her to need it.

Otherwise, she`s doing great...happy & healthy!

Day 196

2008-09-08T17:05:00.000-07:00

We were at the pediatricians today and good news is that Story is still gaining weight, despite her reduced intake of milk. She is now 14 lbs 8 ounces; can you believe that?!

Our nutritionist watched Story feed and thinks that she's developed some oral aversion. Unfortunately, this is common for preemies who were ventilated, tube fed, have severe reflux and vomit more than usual...all of which Story has. She is associating eating with other not so pleasant things...poor girl. The solution is to never force her to eat when she doesn't want to and to try and make eating as pleasant, calm and slow as possible. We don't want to make the aversion any worse....because the only solution if it does, is THE TUBE!!!!!!! (and we're bound and determined that is not going in again)

The plan to deal with her aspiration is to see a respirologist who will take a look at the condition of her lungs via x-ray and see if the aspiration is causing any damage or a build up of fluid. If not, then we will just continue to thicken her milk and hope that the aspiration lessens as she grows.

Mat, Story and I are on our way to Perth again this week for my brother and Liz's wedding; really looking forward to being home again and introducing Story to some of my family who has yet to meet her. Lanark County here we come!

Day 190

2008-09-02T19:24:00.000-07:00

Miss Story has decided to take break from eating these days; it's a little worrisome, as we don't know the cause. It's been about two weeks since she has started showing little interest to drink her milk. Her Dr's and specialists are aware and keeping close watch on her; we're just really hoping it doesn't turn into a bigger problem. Preemies often have oral aversions, sensory disorders and eating disorders...so our fingers are crossed that this is just a temporary problem that resolves on its own.

Story had her barium swallow test this week and unfortunately the x-ray showed that she was silently aspirating her milk; which means some milk was going into her lungs..but we were unaware because she wasn't coughing or choking to let us know. This is happening because of her paralyzed vocal cord that is unable to fully close and therefore protect her airway. Aspiration is especially dangerous because over time the fluid in her lungs can cause pneumonia. So, we are seeing a respiratologist to see how much fluid is collecting in her lungs; as well as a speech therapist who can work with us to try and lessen the aspiration through feeding techniques.

In other better news, we went to Bayfield (Mat and I love this place!) and spent some time at the beach enjoying the fabulous weather this past weekend!

(Story is SUPER excited to meet her new best friend this February...yay, Lucia & Jonathan!!)

Day 187

2008-08-30T10:58:00.001-07:00

Make video montages at www.OneTrueMedia.com

Day 184

2008-08-27T13:07:00.000-07:00

Granny & Story

Story's learning how to hold onto her own bottle!

Homade birthday card Story gets from Nina & Chuck Stewart EVERY MONTH on the the 27th!! Along with the monthly cards also comes a great book for Story; Nina was a librarian in Perth for years, so she knows the importance of reading. Thank you for your kindness!

Aunt Julie with Story while we were visiting back home

Rockin' her new Bumbo...

Happy 6 month birthday, Story girl!

Day 173

2008-08-16T16:50:00.000-07:00

I don't have a ton to say on this blog anymore..I guess that's a good thing though. I'm going to try to keep it going for at least a year, if not more. I read alot of preemie mom's blogs who I don't know, but our common interest is our premature babies. I am always thankful that they keep updating their blogs into their child's first year. It's interesting to me to see how their kids grow and what challenges, if any, they face as toddlers. Most of the blogs give me a sense of relief to see the kids grow up happy and healthy, but those that aren't so fortunate also help me prepare and be educated on what could lie ahead.

Story and I are headed off to Perth this week for our first little getaway! I'm really excited because I haven't been home since last August and I really miss the country and can't wait to show it all to Story.

My good friend and VERY talented photographer, Gillian,<--(click for her blog) took some pictures of Story and our family yesterday, so I am really looking forward to seeing them. Gillian was the same photographer who took the amazing black and white photos when Story was three days old. I'll post asap; I know they are going to be wonderful! Thank you Gilly!

Day 169

2008-08-12T11:38:00.000-07:00

I received some very sad news today. I learned today that one of Story's NICU preemie friends, Larry, passed away.

Larry was such a little fighter who made it through heart surgery and an infection so bad that Dr's said he wouldn't make it, but he did. When we left the NICU in mid June, Larry was doing very well and was pudgy and a happy little man. Larry took a bad turn on July 1st and went to heaven on July 4th. Please keep his family in your prayers.

The above pics were taken as Story said bye to Larry the day we left the NICU.

Day 163

2008-08-06T16:32:00.001-07:00

Day 150

2008-07-24T15:16:00.000-07:00

A pic that Lucia snapped while at the falls in Arkona. Beautiful place!

Happy Story!

Things are still going so well for Story; as well as Mat and I. We went to the pediatrician today and she was so pleased with Story's development. She said she is doing above and beyond what they would have expected from a 25 weeker! Such good news to get; I have a lump in my throat even typing this...she is just such a miracle and we're so thankful.

Story is being seen my ENT (ears, nose, throat) next week to check on her paralyzed vocal cord and to do a barium swallow test. This will tell us if she if any milk is going into her lung due to her vocal cord not being able to protect her airway. Hopefully not, but if its is it means will be have to continue to thicken her milk to prevent aspiration.

So, that's about it to report...we're enjoying the summer, deck is almost done and Story is one happy baby!

Day 145

2008-07-19T18:58:00.001-07:00

Chillin' at St. Mary's quarry

First smile caught on camera!

Thanks Sherisse for the pretty dress!

Day 136

2008-07-10T18:19:00.000-07:00

Things are GREAT around our house these days!

The tube is gone FOR GOOD! woot woot! Ever since we took it out, she started waking up and even crying for her feeds. She lets us know when she is hungry and according to her nutritionist she has gained well beyond what is expected for a baby her age and size. She has gained a whole pound since she's been home, so now weighs in at 10lbs 11 ounces!

We have now started to thicken her bottled breast milk because she was choking on it and that increases the risk of her aspirating it into her lungs. Since we started using the thickener, it has stopped the choking altogether. The only thing Story is dealing with now is reflux. Some days are worse than others, but it does cause her discomfort..poor baby. We're trying to lessen it by keeping her sitting upright after feeds and tilting the mattress on her bed, hoping that it helps. Reflux is very common for preemies and they often have it till 6-8 months of age, but we hate to see her suffer from it.

Aside from that, everything has been going great; we're really happy and enjoying life with Story! She has quite the personality and keeps up laughing most of the day..we love her so much!

Happy Birthday to Mat!! You're an amazing husband and Dad to our daughter...thank you for everything you do for our family. I love you!

Day 125

2008-06-30T13:11:00.000-07:00

Tube free...hopefully never to return!!

We have a 10 pounder! Story is getting so fat; it's awesome! She sure has come a far way from her 1 lb days!

Story had her eye test last week and the eye Dr was happy with her left eye and says the ROP has gone, but the left eye still has some ROP in the inner corner and he wants to watch it for another month or so. Nothing to worry about, but she may have some decreased vision in one eye, but nothing major.

Big day today because Mat and I took her feeding tube out! She has been waking up for most of her feeds, so we're doing a 48 hour trial to see if she will take all 8 feeds per day..if she does, then the tube is gone for good! If not, then we'll just put it back in and try again in a few weeks time. She looks SO CUTE without the tape and tube on her face!

Life around here is definitely busy. Between feeding Story, giving meds, pumping, sterilizing; by the time we're done everything..it's time to start everything all over again! Not complaining though; its wonderful to be doing everything for her and having her thrive! One thing we need to work on is getting Story to know the difference between day and night..she definitely has her days/nights mixed up. Alot of late nights and tired days for us!

Story also passed her car seat challenge last week, so now we're free to come and go easily. She is also really loving her stroller and we go for walks every day; it's been a dream to go with Mat and Story to sit on an outdoor patio for lunch, get ice cream or just walk around our neighborhood. This is going to be a great summer!

Day 116

2008-06-21T07:26:00.000-07:00

Our deck!

Socks on Story's hands to keep her from pulling her tube!

Story's burp face!

Tummy time!

Story's room

Things at home have been going great; we still wake up in the morning and can't believe she's sleeping right beside us in her bed! We have a good routine that keeps us super busy, but in between it all Mat's been building a huge deck off the back of the house. We can't have alot of visitors in the house because of Story's immune system, so he's hoping to have the deck done in the next month, so we can spend the rest of the summer safely out in the fresh air.

Here are some guidelines that we need to follow to ensure Story stays healthy. I'm posting them here, so everyone's aware and therefore we're putting Story's best interests first!

Please don't...

Presume Story is a "normal" term baby, because although she appears to be healthy her immune is still very fragile and will be for the first couple years
Visit if you or any of your family members are sick or if you've recently been around anyone ill. The most important thing you can do when coming to visit is to wash and sanitize your hands as soon as you enter the house.
Touch or handle Story
Bring young children around Story
Smoke anywhere near Story, as she has chronic lung disease. If you do smoke, once re-entering our house immediately wash/sanitize hands and rinse mouth
Bring large groups of people into our home

Thanks for understanding!

Day 110

2008-06-16T20:32:00.000-07:00

Story loves her new papasan chair!

Lola and Story meet...and the outcome was good!

Story failed her car seat challenge, so she came home in a car bed instead, shown in a pic below.

Leaving the NICU after 110 days!!

Cruisin' in her car bed on the way home

We're home!

Story and one of her nurses, Trista

Story and her primary nurse, Karen

Story says bye to her friend Larry; a 25 weeker

Day 109

2008-06-15T11:37:00.000-07:00

Happy 1st Fathers Day, Mat! You're an amazing, gentle, loving and fun Dad to our daughter; we LOVE you!!!

BIG NEWS....we're going home tomorrow!!!!!! Other big news is that Story is off oxygen!!! This is her 3rd day of no oxygen; we're just so happy. It's one less thing to go home with and we now have the freedom to pick her up and walk around without being attached to the wall; it's amazing!

It seems so surreal to think we'll be home in our own home tomorrow, but after 110 days it's finally happening. We're all ready for her and the nurses have us trained and set up for tube feeding, medications, vitamins etc...we've learned alot over the past few weeks and feel completely ready. We'll have weekly home visits from a nurse and a nutritionist who will monitor Story's health, weight gain and nutrition.

Story is now a whopping 8lbs 12 ounces!

Happy Fathers Day to mine and Mat's Dad as well! xo!

Day 103

2008-06-09T12:18:00.000-07:00

Unfortunately, Wednesday isn't our discharge date after all. On Saturday night Story had a bradycardia (when her heart rate drops very low), so that bought us 7 more days in here. :(
Not sure why she had the brady, but we woke to the sound of her alarms ringing and saw she had pulled out her feeding tube and oxygen. We're thinking either the oxygen being off her face or the tube coming out may have caused it.

We're hoping to be discharged early next week, but we're not getting our hopes up. One day at a time!

Mat and I have both mastered tube feeding; the first few times were scary, but now we're comfortable. So, we do everything for Story now without the nurses assistance! We take turns at night getting up for feeds; Mat offered to get up for the 4am feed (what a good husband, huh?), so we have a routine that works, sorta.

Story's now 8 lbs 2 ounces!

Day 98

2008-06-04T11:09:00.000-07:00

Well, we have a discharge date....next Wednesday, June 11th! (my due date!) Story has her eye test early Wednesday morning, so if her eyes are still improving then we'll be discharged later that day! woo hoo!!!

She will be coming home with a feeding tube and we feel ok with that. Mat and I will be learning all about the tube this week, so we'll be prepared and feel comfortable at home.

Her hemoglobin is very low again, but aren't going to transfuse because that just tricks her body into thinking that she has enough red blood cells. We will let it rise on its own, as well as give her iron every day to help. Her low hemoglobin is probably the reason why she is so sleepy and can't seem to wake up for her feeds. So, after a few weeks her red blood cells should be up and therefore she will also have more energy.

Things here in Care by Parent are also getting a little easier. We're getting into a routine and I'm also trying to get out every morning for an hour or two before Mat goes to work, so that's helped improve my mental head space ALOT! It also gives Mat some Daddy & Daughter time, so it`s nice for him as well.

Well, that's our good news of the day!

(oh ya, she is also 7 lbs 12 ounces!)

Day 96

2008-06-02T13:00:00.001-07:00

Daddy and Story time...

Using Daddy`s nose as a soother...

All milked out!

Our home away from home...

Day 95

2008-06-01T20:00:00.000-07:00

I'm feeling quite a bit better the last couple days (thankfully!); that was quite the downer post I wrote previously, huh? Thank you everyone who gave me a little pep talk or just let me cry on their shoulder, it's helped alot to just let it out.

Things haven't really changed a ton, but we're still working on increasing the amount of oral feeds Story gets per day. She varies from 4-5 per day, but the good thing is she has totally got the hang of breast feeding. She is much more stable breast feeding than she is when she is bottling, so we're sticking with what works!

The plan is to stay here for another week and see if any progress is made. If not, then we'll learn how to tube feed her and come home!

She's now 7 lbs 5 ounces and is getting cuter by the day! Pics coming shortly...

Day 91

2008-05-28T16:32:00.000-07:00

So, we've managed to get the internet in our hospital room via our laptop...thank goodness! (I'm so sick of daytime tv!!)

Things are going ok...the good is that its been a DREAM to wake up beside Story and just be with her all day, every day. Unfortunately, she hasn't really made any progress since we came here a week ago. She doesn't seem to want to wake up enough to take bottles, so she is being tube fed alot. She takes a few bottles a day, but she normally has a bad bradycardia (when her heart slows and she turns blue), which is really scary. When that happens it instantly adds a week onto her hospital stay because she can't go home when that's still happening, even if it's just once in awhile.

I'm really finding it extremely difficult staying in this little hospital room and I can't even imagine another week in here...but it looks like we'll be in here minimum a week if not more. I've never understood the true meaning of cabin fever until now! It's very small, hot, with no privacy...sharing the common area with 3 other families makes it a very noisy place. I think it's extra hard because we're so close to the end of all this, but just not there yet. It's frustrating to know that there's only one more thing she needs to accomplish before we go home, but she just can't quite get it yet. We're just hoping one magical day she will start waking up for her feeds; because once she takes 48 hours worth of bottles consecutively,then she'll be discharged. If in a weeks time there is still no progress, she might come home on a feeding tube. I am ok with this, if it means we can leave. The nurses will teach us how to insert it into her tummy and feed her when she won't take a bottle. Over time she'll get stronger and start waking on her own. It's common for preemies to be too tired to even wake up and eat; we can't forget she's worked so hard over the past few months when she should have still been lounging inside me!

Real life as parents has really started for us, that's for sure...we're up every 3 hours for about an hour for feeds/change/pumping etc...so we're sleeping in 2 hour increments. It's hard, but I think life will be a little easier when we get home because we won't have Nurses, Dr's, Nutritionists, Eye Dr's, Respiratory Therapists, Lactation Consultants etc coming in at all hours...(need I say more?!?!??!?)

The good news is that she had her eye exam today and her eyes have gotten a little better and the Dr doesn't think she'll need laser surgery after all, but he'll check her again in 2 weeks to be sure. She also passed her hearing test, which is great because its really common for micro preemies to have hearing damage. She also hit 7 lbs today...amazing!

My due date was June 11th, so I'm really hoping that she makes it home before that date..fingers crossed!

Day 84

2008-05-21T13:09:00.000-07:00

BIG NEWS!!! So, things move pretty quick we've realized in the NICU...we got a phone call this morning telling us we are moving into Care by Parent tonight!! The decision to move her into Care by Parent came because she caught onto bottling alot quicker than expected and she's doing great on low flow. So, I'm packing up for our stay right now and looking forward to our first night with Story!

We'll probably be there for the next week or two, so my next post will be once we're home!

yay!!!!!!!!!!!

Day 81

2008-05-18T18:19:00.000-07:00

Ms Story took her first full bottle today! She did better than we all expected...as she always does! She has a super strong suck and at times took too much milk than she could handle, but she finished 50 mls in about 20 minutes. She did choke sometimes; which scares her and makes her stop breathing, which then makes her heart slow down...but all times she recovered quickly. The plan is to give her one bottle a day for now and tube feed her the other 7 feeds, but over the next few weeks increase the bottle feeds until she is taking all 8 feeds orally. Once she is off the high flow and onto low flow and taking all feeds orally...SHE WILL BE COMING HOME!!!!!!! We expect her to be home in about 4-5 weeks time. The week prior to her discharge Mat and I will be moving into Care by Parent, which is an apartment area of the hospital that you move into with your baby. There are nurses there if you need them, but basically you take full care of your baby..but if you need help or have questions the nurses are there. By doing this I think it will help us feel completely comfortable bringing her home and able to deal well with any medical issues that may arise.

We are just in awe of Story these day and how far she has come over the last 12 weeks. It`s hard to believe our little girl was so sick and frail only 3 months ago....wow. She has shown us true strength and determination. We`re so proud of you Story!

Day 78

2008-05-13T18:42:00.000-07:00

Story's cousin Morgan (Mat's niece) made this card for her...she loved it! You can tell by the little smile!

Story was seen by ENT (ears/nose/throat) today and the floppy skin that was falling over her windpipe has now corrected itself; which is great. The Dr had a closer look at her paralyzed left vocal cord and saw that it's paralyzed in the closed position. This is alot better than it being paralyzed in the open position, as it will help her swallow without aspiration. He did say that sometime in the next year the damaged vocal cord muscle will soften and may start to open...at that point she would need to have surgery to permanently put the cord back to the closed position. The good news is that tomorrow we are going to try to feed her a bottle of breast milk for the first time! She may not do so well, as preemies have a hard time being able to master the art of sucking, breathing and swallowing at the same time. It may take alot of time for her to be able to feed exclusively from bottle or breast, but tomorrow we'll start that learning process. I know she isn't a fan of her feeding tube down her nose and can't wait to be free form it...so wish her luck!

She is still doing really well on the high flow and they are weaning her off it a little more every day. We have been told that it's very likely that Story will come home on oxygen. When I first heard this I felt really disappointed and scared...but now that I'm used to the idea, it's no big deal at all. If it means we can bring her home, then we're fine with it!

6 lbs as of tonight!!!! woo hoo!!

Day 70

2008-05-07T19:42:00.000-07:00

This is a really cool "hand" that Yannie sent us as a gift. It's called "The Zachy" and was invented by parents of a 25 week premature baby named Zach. It's feels like a bean bag and it's purpose is to mold to your babies body and provide comfort. I slept with it for a week prior to bringing it to Story and I'm hoping she can smell me on it. She especially likes it when we wrap the hand around her head; all preemies seem to be comforted when they have a hand cupped on their head. When Story was at her smallest and was in distress, as soon as we put our hand on her head she immediately settled down. Thanks Yannie for the cool gift!

Story had her eye test last Wednesday and her eyes have not progressed any further this week, so that was great to hear....not getting any worse is a good thing!

She's still doing really well on the high flow and is now at 30% oxygen. She started at 40%, so hopefully those numbers keep going down.

Happy Mothers Day!

(oh ya...she is 5 lb 8 ounces!)

Day 69

2008-05-05T19:00:00.000-07:00

Well, we have a 5 lb daughter!! More good news...Story is off the CPAP for good!!! She's been on high flow for five days now and loving it! She seems so much happier to be free from the tight hat and nose prongs. So great!! The nurses told me that when they took her off the CPAP, they came back after a few minutes and her hands were clasped together in the praying position and her face looking upwards...as if she was thanking God!

She's been practicing breast feeding this week as well, not a ton of luck, but she's trying. Her paralyzed vocal cord could pose some problems when feeding and it's something that we'll have to take slow. The risk is that she could aspirate some of her feed, since her vocal cord won't automatically close to stop any liquid from entering her lungs. Basically, choking could be an issue...but we won't start to try any swallowing until she is stable and on low flow; which is still a few weeks away yet.

Lucia hosted a wonderful baby shower on the weekend and Story received so many great gifts...along with the funky stroller you see above. I am so thankful for all of our great friends....thank you girls so much!!

My Mom and Mat's parents held Story for the first time; which was a wonderful moment for them... It's been a REALLY good week for all of us!

Day 65

2008-04-29T16:48:00.000-07:00

Story's moved into a big girl bed! She's left the incubator behind and has upgraded to a crib! At 4 lbs 9 ounces (wow!!), she can now regulate her own temperature. As you see in the above pics, we also put together her crib at home, so it's ready and waiting for her. When I said "we", I actually meant Mat and Lucia put the crib together... ;)

She had her eye test yesterday and unfortunately the news wasn't quite as positive as last time. Her eyes regressed and are now into Stage 2 ROP, which means the vessels are still growing abnormally at a quick pace. The Dr will continue to check on her weekly.

Now the best news of all....as of noon yesterday she is off the CPAP! We're not getting our hopes up too high because she may not last, but it was so great to walk in nnd see her precious face free of the CPAP and only on high flow oxygen. Great day!

Day 60

2008-04-27T19:28:00.000-07:00

Story's now a big girl...4 lbs 4 ounces! Well, not big...but definitely bigger!

The Dr's were a little concerned today why her eyes and feet were so swollen. They aren't sure exactly why, but she's now on a diuretic to reduce the swelling. The Dr's are thinking she might actually be getting more fluid than needed, so her feeds have been reduced to 31 ml of milk every three hours.

Her hemoglobin was also very low, so she had to have a blood transfusion tonight. That was a little scary, as she hasn't needed a transfusion since her first few weeks of life. Hopefully the transfusion will give her a big boost in red blood cells and will help her lungs become stronger and heal quicker.

Story had a good weekend visiting with my Dad and soon to be sister in law, Liz. My Dad holding Story for the first time was really emotional and we were both we bawling like babies! It was beautiful. :)

Day 56

2008-04-23T06:31:00.000-07:00

Story's 8 weeks old today and weighing in at 3 lbs 14 ounces!

Well, some not so good news yesterday. The Dr's were getting concerned why she wasn't able to wean off the CPAP; since she was growing so well. An ears/nose/throat Dr came to take a look and found two problems.

The first is that Story's left vocal cord is paralyzed; which happened as a result of her heart surgery. The surgeon had to move her vocal cord over to get to her heart and by doing that the nerve was irreversibly damaged (we were told there was a 10% chance that this would happen). This open vocal cord is making it an effort to breath, but as she gets stronger she will be able to compensate..but it does mean she will have a very raspy voice forever. Depending on what position the vocal cord is paralyzed in, it could cause some issues with feeding. The specialists will follow up with her in a few weeks time and we'll know more then.

The second issue is that she has some soft tissue that is flopping over her windpipe every time she takes a breath. That's why she only last 2 hours when off the CPAP; she is fighting that tissue that is collapsing every time she breathes. Basically the Dr's are hoping that with more growth the muscle surrounding the tissue will get stronger and fix the problem, if it doesn't then surgery can fix it..but that's a last resort.

What all this means is that we've just hit a setback...she needs alot more time to grow before she can get off the CPAP and that means learning to feed must also be delayed. It's too bad that she's hit a bit of a roadblock, but at the same time...we've been VERY lucky to not have had any scares or setbacks until now. She's been such a strong little fighter, I know that she'll be fine in the end...and her little raspy voice will make her even more unique that she already is, right?! :)

Day 51

2008-04-18T20:29:00.000-07:00

Baby girl is packing it on...now a whopping 3 lbs 9 ounces!! Not a ton to report (which is always a good thing!), but she had a good week. Her eye exam came back GREAT! Her eyes actually improved since last week; which was surprising to her opthomologist. His exact words were "I can't believe I'm looking at the same baby's eyes". How amazing is that?!

Story received a special letter along with a stuffed toy today, see pic above...thank you Ava!

Day 47

2008-04-14T17:24:00.000-07:00

Looks like Story inherited her Dad's crooked pinky!

Story's been on a good roll for the last week or so...just eating, sleeping and growing. She's now 3lbs 4 ounces!! She gets weighed every second day and we're celebrating every single ounce.

We're still kangaroo'ing every day; which is great for all of us and during that time she "sprints" on low flow oxygen. She still can only handle about 2 hours max of the low flow before needing to go back on CPAP, but with her continued weight gain it will be no time at all before she is off it entirely.

We're about halfway through her hospital stay and so we've been slowly starting to work on Story's room preparing it for when she comes home. Her crib is ordered, bassinet is waiting and she already has a mini wardrobe of trendy clothes waiting in her closet.

Spring is the perfect time for her to come home since it's not cold/flu season, but we still have to be really careful with sickness, especially for the first year of her life. Her lungs wouldn't be able to handle a cold and her immune will still be very fragile. Unfortunately, we can't have alot of visitors or have her in closed spaces with alot of people/kids. So, this means a low key summer for us with lots of outdoor air...we're counting down the days!

Day 42

2008-04-08T20:52:00.001-07:00

Story had her eye exam this morning and the results were that she has early Stage 1 ROP; which wasn't surprising news. 85% of preemies who were born under 26 weeks will have some stage of ROP, because of this the opthomologist has her as high risk in her file. She will continue to have weekly eye exams to track what's happening with her retina and when it gets to a certain stage they'll then decide if laser surgery is required. I feel so bad she has to have her eyes checked weekly because it's not a very nice procedure to go through, but at the same time ROP can progress to blindness very quickly, so I'm thankful they are keeping on top of it. During the exam they have to keep her eyes open with something that looks similar to a paperclip, put in eye drops to enlarge her pupils and then do the exam. Our poor baby...she has to go through so much.

The respiratory therapists tried putting her on high flow oxygen last night (see above pics!) and she lasted 12 hours before she got tired and had a bunch of bradycardia spells..that's her way of saying "I've had enough". So, they've put her back on the CPAP and say they'll try again in a couple weeks. Her lungs just aren't strong enough and without any reserve (extra body fat) she just gets exhausted from working so hard to breath. She hates the CPAP and is starting to pull at it wanting it out; I think when she's ready she'll just yank it out and start breathing on her own! At least that's what I'm telling her to do...

The good news is she's now 2 lbs 13 ounces! She's started to get some nice cheeks on her and looks like a totally different baby than when she was born. I look back at the pics from 6 weeks ago and I can't believe its the same girl. wow!

Day 41

2008-04-08T20:05:00.000-07:00

Bath time! I just got in from the hospital and had to post these adorable pics of Story getting her first bath. It was too cute for words; she loved it...no more stinky Story!

Day 39

2008-04-06T18:28:00.000-07:00

2 lbs 11 ounces tonight!! Story is is now at 15 ml of milk every 2 hours and is gaining and growing like crazy; it's such a relief to finally see her little tummy, legs and bum fill out!

We can't even believe how much she has changed over the last few weeks. She's so alert and stares right up at you when you talk to her. Her little eyes don't see much right now and she is often cross eyed (which is so cute!), but her eyes definitely look toward our voices.

She is still on a certain type of oxygen apparatus (called CPAP) and it requires her to wear a little white hat with straps that come down over her cheeks to help keep the oxygen prongs firmly in her nose. You can see it in the above picture. I feel bad for her because the prongs give her a little piggy nose and the straps dig in to her cheek quite badly. It will be a happy day for all of us when she can get off the CPAP and onto low flow oxygen with a little nose tube. Her lungs aren't quite ready for the low flow yet, but hopefully will be in a couple weeks time.

She is getting her eyes checked this Wednesday for ROP (retinopathy of prematurity), which is the abnormal growth of the blood vessels in her eyes. The majority of preemies born at her age and weight will have ROP to some extent and the damage can range anywhere from mild (needing glasses) to severe (blindness). Odds are Story will require laser eye surgery in the next 8 weeks to stop the blood vessels from growing any further and detaching from the retina. We will know on Wednesday what stage her ROP is at now and she will continue to have eye exams every week or two to keep on top of how her eyes are progressing.

Story's nurses tell us she is doing so well for her age and they wouldn't be surprised if she would be coming home a couple weeks before her due date of June 11th! So, we're not getting our hopes up, but it was a great thing to hear. Go Story!