Busy Weekend!

Team Fighting for Faith had 30 walkers this year (some of our team is not pictured we apologize to those who are not in the pic!). No, that beautiful girl in the kid cart is not Faith- it's her friend from the hospital Noel. (who is trach/vented just like faith) she was her fill in that day- boy was she a trooper!!! Noel's family donated our shirts this year (Thanks Tina & Co.!)
We decided to leave Faith at home since it was cold and windy (she has enough problems going out when it is sunny!)
So Faith just stayed at home at cheered us on her "footprints of Faith" onesie (yes those are her footprints on the shirt!) And yes, she now wears her glasses consistently!
Bottom: Sunday night some of Faith's primary nurses from children's stopped by to say hi (thanks for the yummy dinner guys!!!!)

We are so sorry it's been a while since out last post- we've been having technical problems, which are now all squared away. Things are going great- and yes we are still home (I tell ya we are here to stay......) Faith has had a few doctors appointments at Children's- one of which they dropped her breath per minute rate on the ventilator to 8 (when she is awake...10 when she is asleep) which is a step in the right direction. Faith is proving that she is still fragile- at first we dropped the rate to 8 24/7 and Faith did not tolerate that very well- it's amazing how just a little change can affect her so much. Nothing much to report- we are back at work- just 5 weeks until summer break...(yes...huge plus of being teachers!)When we are at work Faith stays with a nurse. Right now we have 5 days of nursing and 3 nights- the nights have been crucial. Faith is still not the best sleeper. We manage it when we don't have someone but we are zombies the next day. Regardless it is all worth it. Well that's about it for now. Thanks for stopping by!
Brian, Jen and Faith

Born to Fly!

Top: Getting ready for bed. Daddy made me a Mohawk (although it's hard to see in this picture). Below: Look what I learned to do this week!
Faith's first trip to the park and first experience in a swing.
This morning we took Faith on her first trip to the park. Boy did she have a terrible time! As you know she is not very fond of the outside world- but she'll get there. We are trying to get her ready for the March of Dime's walk next weekend. We aren't sure if we are going to take her or not (right now it would be like 6 miles of torture for her) but we are going to take her outside everyday this week to "train her" for the big day. Whether she goes or not Team Fighting for Faith is gearin' up for the big day next week!

Things are finally settling down here and we are falling into a routine. I took last week off of work to help with the adjustment home. I think the reason why Faith is doing so well is because we haven't left her side. Tomorrow I go back to work. I am excited to see the kids again, but a little nervous about leaving Faith. Plus I'm going to miss just being a mom! This week I finally felt like one. It's the little ordinary things that make me feel like a mommy- sweeping the floor as Faith watches TV, making dinner as she plays in her bouncy, not having to ask anyone how her day or night was because I was there for every minute of it.

This next week is going to all about letting go. One of my college professors once told me that the minute you give birth to a child every moment that follows is about letting go. We know Faith won't be home forever (maybe for the next 18 years....or whenever she wants to fly (and believe is we know she will be pushing to fly!) but for now we are enjoying every minute of it knowing that we've had a part in giving her wings to lift off. For now we'll just start one swing at a time.
-Brian, Jen and Faith

Elway and Me

Ahh too many lickies!!!! Can't I getting a momment without tongues around here?
Ok wait...hold the tongue and I'll touch....
Above: Aww he's alright! Below: Snuggling after bath time.
Blogging sure is fun now! There's is lots of happy news to report. It's been a week and Faith is doing fabulous. While at the hospital everyone always told us how kids always do better at home. We were not so convinced. In the past Home + Faith = Disaster. Now.....we see what they were talking about. In the last seven days Faith has blossomed. She is almost an entirely different baby. She is reaching to touch things, she stretches her arms out to be picked up, she squiggles around the couch (we say squiggles because that's what she does she moves her booty around to adjust herself...she wants to crawl but doesn't know how....) she even tolerates putting her in the 4 point position (for crawling) more than she did a week ago. Now we are seeing progress. Now we are seeing that Faith is going to move mountains! She just needed to be set free!!! She is truly like a Caterpillar who waited for spring to get her wings and fly. :)
Thanks for sharing this joy with us!
Brian, Jen, + The Little Butterfly, Faith

"Head, Shoulders, Knees and Toes, Knees and Toes..."

We're still here!!!!

Here are some pics of Faith's room. When we don't have a night nurse we take turns sleeping on an air mattress in her room. After much deliberation we made a decision that we wanted Faith to sleep in her room. This way she'd have a consistent place to be (rather than in the living room on the nights we have a nurse like we did before...) This also makes this time around seem different- we are still a little nervous about having her sleep in the spot where she almost died. The bottom picture is of Faith snuggling with her daddy Sunday morning.

YAY! DAY 5!!! We made it. Faith has now been home the longest she has ever been home in her life! WOW!!!! I think it's funny how I call people and their first response is..."WHERE ARE YOU? Are you still home?" YES! We are here!!!! Faith is enjoying every minute of it. We are pleasantly surprised with how much she has adjusted (not that she doesn't miss her home at Children's- and not that we don't either!) We'll be back....we have almost weekly appointments at the hospital. In fact Brian was there afternoon getting approval for his sixth graders to paint a mural on the wall next to Faith's room. (yes, don't worry he's going to sneak a butterfly in the picture for Faith!) Other than that that's about it....goodness what are we going to blog about now....I guess no news is good news! Now is the time to blog about celebrations and happy times...you have all stuck with us through the mud and the muck now it's time to see rainbows!

DOn't worry we'll keep you in the loop (we're not going ANYWHERE!!!)

Brian, Jen and Faith :)

Home Sweet Home (the third time around..)

Faith watches her "shows"

Just like last time ELway is the more interested in Faith then Buffalo.


This is a funny story. We hung a net above Faith's bed for her stuffed animals. While she was taking a nap yesterday they all fell on her. I walked into her room and she was covered with them. To our surprise she was very content and seemed to enjoy that her friends came to visit. She truly has learned not to sweat the small stuff!

Guess what....we're still here!!!! Day 3! Woooooowhooo. I know- we are besides ourselves. The night we came home we went to cut off the orange hospital bands we've worn for the past 8 month..Brian didn't want to cut his off because he said he wanted to keep it just in case we had to go back...my reaction wasn't "don't worry we're not going to go back.." instead I said.."Oh honey they'll just give us a new one!!!" ;) Ok well it looks like that's not going to happen!

Faith is doing great... it's like she's always been home. We're still working out the kinks of having to get around with her and all her equipment. Right now we just have one ventilator set up which is very heavy so we have to haul it up and down the stairs. Next week we will hopefully be getting another one which will make life a lot easier. Nights have been a little rough on all of us. We have an excellent night nurse a few times a week however we are still getting use to the idea of us sleeping while someone else is watching Faith. Last night we didn't have night nursing and it was pretty tough- Faith needed a lot of suctioning and was pretty fussy- plus her vent alarms quite often. Luckily it is the weekend so we can nap when Faith naps.

That's about all the report today. We'll keep you updated!

Brian and Jen (and now Faith too!!!)

Home at Last!

TOP: It's time to strip everything. Farewell Children's! Bottom: A few of Faith's primary nurses stopped in to say goodbye. They all have become our family! It was very tough saying goodbye!




We were not 100% positive that Faith was going to come home yesterday but a few of our friends took a gamble and surprised us by giving Faith a hero's welcome complete with signs and balloons (Thanks JoEllen and Irene!)
Wow this room is bright! And I thought those isolation gowns were yellow!!!! Faith takes it all in. What a difference this time- she is actually aware of her surroundings.


Faith is reunited with her brothers. Faith giggled and grinned as they said hello!



Well we made it! Yesterday we took our baby home. Wooooowhoooooo!!!! It's been a whirl wind...it does not seem real...and we are getting a big sense of deja vu...but a little different/ Faith is very aware of where she is and her surroundings. We thought she would be a little freaked about leaving the comfort of her room at the hospital but quite the contrary she is having a ball at home. She's just her happy go lucky self! We are exhausted of course, so we apologize if we have not been very good about returning phone calls...we promise we'll catch you all up soon. Ok well we will take more pictures and share more stories of Faith's homecoming asap. FOr now we're just trying to make it to day 3..(we seems to never be able to make it to that day...but that's all gonna change!)
Here's to day 3....5.....and 500!
Brian and Jen

Within the next week we are going to have a baby. We don't know the exact date but the doctors have told us it is going to happen sometime next week. Our nerves our fried, our excitement is heightened. We've been doing all the typical things that expecting parents do. We've been putting together cribs, highchairs and organizing toys. We've been washing baby bottles and rearranging furniture to make room for the little one. As we sleep in our beds with each night that goes by we know that nights will no longer be the same in our empty house, which is a good thing. The boys know, the have been sniffing everything we bring through the door. They know a baby is about to be brought home.
All of this is true expect for a few things.....our baby is 14 months old and instead of putting together a crib we are dusting it off. Everything that has sat stagnate in her room anxiously waiting for a place and a purpose has been cleaned. Instead of washing bottles that she will use to take her first meals we are washing them to be used with her feeding pump. We are rearranging furniture to make room for her ventilator and oxygen tanks. Everything we are going through this week is a lot like what parents go through when they are expecting a baby, in a way we are pretending like we are, we are starting over, beginning anew. But then again it's not the same, it is different, much different. SO to answer all of your questions we do not know the exact day Faith is coming home next week but the important thing is she is coming. No need for Lamaze or a to-go bag for the hospital, just a deep breath and finally.......maybe finally an exhale.

A few pictures to brighten your day.........
Faith on St. Patty's Day
Our little Easter Bunny......