Tuesday, February 26, 2008

Happy Girl

Faith just keeps truckin' along. She is more smiley than ever- loves to laugh (although you can't hear her we know it's laughter) and is just blossoming. She had a bug last week but has seemed to be back to her old self. He glasses have been ordered and are on it's way. That should be fun (can you sense the sarcasm). When we were trying to fit Faith for frames it was like WWII- that girl can fight! It will be an adjustment for her. In the meantime we've been putting headbands on her to get her used to having some compression around her head- even this has been a battle.
Faith had another bronch last week which still showed lots of swelling- so much that the ENT's said if the trach ever came out and it couldn't go back in they don't even think they could put an ET tube (a breathing tube) down her airway. This kinda helped us gauge how long Faith is going to need her trach (quite a while) however just the trach seems like nothing anymore- our goal in the next year is to nix the vent. So that's about it!!!!
Thanks for making our girl a part of your day!
Brian and Jen

Oh yeah this weekend I was in a store and stopped at an aisle I usually pass- the car seat aisle (Faith has outgrown her infant car seat that she got to use 2 times...) I briefly checked out the styles and prices...a step in the right direction even if it's a baby step.....

Sunday, February 17, 2008

Another ship sets sail!

We have some exciting news to share with you today. Remember the little boy we told you about last summer who had been in the hospital a year and a half? Well last Wednesday little Cesar went home after 22 months (2 months short of 2 years) for the first time. Even better he's stayed home. Woooohoooo! And just yesterday I ran into a family who was very similar to us: Their daughter Fiona was born a few days after Faith at 27 weeks.... trach/vented and is going home this week for the first time. WOW! The more stories we hear like this the more courage we get to try it again. As you all know right now it is not under our control..we are still waiting for nursing (us and the dozen other kiddos just like Faith....) but we have begun to think about it.... which is a step. Just yesterday I saw a coupon for diapers....I looked at the expiration date..(5/1/08....) I was tempted to save it...could buying diapers for our own baby be in the future? I decided to toss it.... Didn’t seem like the right time. The case worker at the hospital has been putting in calls in agencies about Faith...no doubt this will take some time but we need to be ready for when it does happen. I think the biggest barrier we will have to overcome is to be emotionally ready to take Faith home. Not a night goes by where we don't remember the screaming...dogs barking...Faith lying limp and blue..the call to 911....I remembering grabbing he phone and thinking this is it...this is how she is going to die....every time we have those thoughts we try to replace them with good ones....us waking up as a family and not having to run out to the hospital at 5 am...sitting with Faith on our deck..the sun shinning down on her..her eyes not squinting..taking her to the zoo (yes.. ventilator and all...) We have to remember Faith is a different baby than she was in September. Yes if she was disconnected from her vent like she was then she would still turn blue but now we'd have more time...she can tolerate begin off of it a little more.... Our goal is this summer. Even if we don't have nursing we want her home (whether or not the hospital will allow that is another story...) summer just feels right. For now we will just celebrate the other ships that have set sail....as we start the first step into setting our own- looking into the horizon and seeing the possibility of our ship leaving it’s harbor for home.

Friday, February 15, 2008

Happy Valentine's Day!!!

I wonder if every parent goes through a child's second year of life a little sad whenever they see "baby's 1st holiday" paraphernalia and realize that there will be no more Holiday firsts.... Yes there will be many more firsts...but it just seems like yesterday we were in the NICU spending Valentines Day. I remember walking into the NICU last year (or should I say hobbling in....recovering from a c-section) and seeing a red dress hanging on the IV pole. Someone donated them to all of the babies. The dress was preemie size (4-5 pounds) but it looked HUUUUUUGE to us. It was 5 times the size of Faith- there's no way she'll be able to wear that we thought....well we were right Faith never got to wear it be because she just grew too fast!!!! Amazing! it still hangs in our closet at home- a reminder of what Faith truly is.." evidence of things unseen...."
Have a wonderful weekend everybody!
Brian an Jen :)

Sunday, February 10, 2008

A Day in the Life of Faith

Good morning world! In the morning I rise and shine and have a heart to heart with my nurses and doctors (no funny business I tell 'em!)
No time for rest- there's work to be done on the farm.
Giddy'up! Time to head into town.
First things first gotta check my e-mail...
time to check voicemail.."You're Fired!" I tell 'em
Now it's time to take a look at how the competition stacks up

A girl's gotta eat....even if I'm tube fed I still like to sit at the table and play with my food!

Gotta work on my girlish figure....exercise time!

I'm exhuasted! Time to read the evening news...

Before bed I gotta update the blog.... (or that Aunt Susan will go nuts!!!!xoxo)

What a day! I'm ready to hit the hay!

Nighty night! All snuggled in for a good night's rest tomorrow's on it's way and I've gotta be my best!

VIP Guests!!!

We've wanted to share these pics with you for a while but we were having difficulty uploading them. For Faith's birthday the infamous Aunt Susan and cousin Michelle surprised us by coming all the way from Texas. As most of you know they have been following the blog VERY closely and share a special bond with Faith. It was wonderful for them to finally meet our precious angel!

Monday, February 4, 2008

Happy Birthday Faith!

M'MMM..Cake? No way says Faith but it is sure fun to play with!
Let's see what daddy got me this time!

My room all decked out for my big day!

As you all know Faith is all about proving people wrong and today that is exactly what she did. To our surprise she met the goal: Faith can now sit up independently!!!! It's amazing! It's like it just clicked for her and it happened to be today! Yes she still falls down (she is learning that hitting your head happens....) she can sit for up to 3 minutes all by herself and we are calling that a HUUUUUGE success. This is a huge milestone not only for a baby whose spent an entire year in the hospital but considering she is only 8 1/2 months adjusted this is a victory. So you go Faith! Keep proving us wrong!!!
Faith had a wonderful birthday- she was a star today. She knows she's a big girl now and apparently she thinks big girls don't need naps! For the past week during her very routine afternoon nap she just lays there giggling and smiling- the little stinker! Coming from a baby who spent most of the day asleep about a month ago even this weird no napping stage is a normal parenting quirk that we are embracing!
Thanks for all of your warm wishes on Faith's special day!Brian and Jen

Sunday, February 3, 2008

What a Party!

Wow. That's all we can say is wow. What an outpowering of love and support from family, friends, co-workers, nurses, you name it. Faith's party was a huge success...emphasis on the word huge. We had well over 50 people come wish our little girl a happy birthday. This meant the world to us. We did not expect this many people would take time out of their weekend to come visit us. We had some very special guests- 6 of Faith's nurses from St. Joe's came which was so very special for we know Faith would not be alive if it weren't for their loving care. Space was very tight and with all the hustle and bustle we did not get to personally thank everyone for coming- so once agian from the bottom of our hearts- THANK YOU!!!!! And to everyone else who weren't able to come-thank you for being an intergul part of our lives this past year. What a year it's been- many of you have been with us every step of the way. There have been many dips in this rollercoaster but this weekend we are celebrating one very huge up- Faith has made it!!!! She is 1!!!!!!!
Happy Birthday Faith!!!!!!
Brian and Jen :)

PS: If Faith's life isn't proof that miracles still exsist- 17-14 Giants works for us! Our super baby strikes again!!! (sorry Paula).

PSS: We forgot to mention another very special guest at the party- yes it's true- the infamous Aunt Susan came all the way from Texas with her daughter Michelle. As our friend Lisa joked, "She's almost as famous as Faith!" Pictures coming soon. ;)