Friday, October 26, 2007

#1 Fan

Faith can easily relate with being the underdog- and she knows a thing or two about miracles! So she's not giving up!!!!

Isn't it weird seeing Brian in Rockies gear? As a Yankees fan from New York he'll do anything to cheer angainst the Red Sox!

Not much to report on this week. We've been having a fun cheering on the Rockies in the World Series (ok. games 1 and 2 were not that fun....) Faith keeps trucking along. Can you believe she is 14.5 pounds? Wow! She's been having very good days but her nights have been a little touch and go. She does this really weird thing where she is asleep then she will wake up and her heart rate will go from 80 to 190. She will act will irritated for about 60 seconds then go right back asleep. This happens all night long so she nor us gets any sleep. They completed a study this week where she had to where a special heart monitor for 24 hours. The monitor will document these episodes. We've been giving Faith more meds so she'lll sleep a little better- but we hate adding another drug to her already large list of medications!We will let you know what they find. Thanks for all of your prayers!

Brian and Jen :)

Saturday, October 20, 2007

Wow- has it really been two weeks? We are sooo sorry! Time has just slipped away form us. As you know we spend the night at the hospital every night (well we switch off- one night Brian stays the next night I stay) and when one of us is home there is a lot of catching up to do. Last weekend we celebrated our 3rd wedding anniversary. We didn't do anything fancy- we just sat on the couch and watched some baseball- but to us, this was heaven. It's crazy how much you don't appreciate things until you don't have them. I don't know when we will be a "family" again- but the sacrifice is worth it. Faith continues to show us how she needs to be in the hospital. Last weekend she had a little episode where she choked on her own saliva and had to be resuscitated. She has also shown some suspicious signs of seizure activity again. They did an EEG which didn't really show anything (it only really shows something if you have a seizure when the probes are on your head) but it did show that Faith's brainwaves are a little "slow" for her age.Which basically means what we already know- she is developmentally delayed. The neurologist said this is to be expected considering she has spent her entire life (minus the fours days at home) in the hospital. She has also been working to breathe a lot more than she has this past month. She is showing us she needs to be on steroids long term, which isn't ideal (there are side effects) but necessary. Even with all of this Faith continues to be a delight. She is a lot of fun to be around. We have a blast playing with her and seeing the different sides of her personality.
Thanks for keeping in touch. It means so much to us that you all check the blog regularly (even when we don't post!) and keep our little angel in your prayers!
Take care! (And GO Rockies!)
Brian and Jen

Wednesday, October 10, 2007

More Smiles!

Nothing new to report- just wanted to show off some pictures!!!! Faith has a very wide faced smile where her whole face scrunches up and her eyes sparkle- we are yet to catch this on camera (the flash always bewilders her...) but these smiles are cute too! Faith keeps truckin' along! She's doing more amazing things everyday! Yay Faith- You GO Girl!
Brian and Jen :)

Sunday, October 7, 2007

Junior Rockie

Faith chilling out in her chair watching the game with Dinger. :)

Not much to report on today so we thought we'd update you on the general progress of Faith.

NUTRITION: Faith is still unable to take anything by mouth. She receives about 4.5 ounces of breast milk (that is fortified with extra calories) every four hours through her g-tube. Occupational therapy works with her everyday on oral stimulation. At this point they have advised us to back off trying to give her anything by mouth because it will contribute to her already significant oral aversion. While she is getting her feds through her tube we dip her pacifier in the milk and give her little "tastes." She does not like this very much- but if we can get a 1/2 of a ML then it is a success. We strive to keep all feeding experiences positive.

DEVELOPMENT: Faith really seems to have taken off in this area lately. Just last week she started really reaching for things- and just this morning we caught her looking at her hands!!!! This is a HUGE success! She has also been putting her hands to her mouth. A few months ago Faith's arms were so stiff you couldn't get them above her shoulders- now she lets us play with them. She is reacting more positively to touch. Everyone that comes to visit comments on what how she looks like a "normal baby." :) We've also been working on keeping her head up. Ever since she was trached she hates being on her tummy- she always coughs and gags. We've been working with physical therapy on this one. Everything that comes natural to other babies is difficult for Faith because she has tubes hanging out everywhere. It is also difficult for her to move her head around because the trach gets in the way. Nevertheless she is a trooper!!!

EYES: As you know we've been concerned with Faith's vision for quite sometime. The good news is as she gets healthier the more it seems she can see! She did have an eye exam a few weeks ago with a new eye doctor who confirmed that her vision in her left eye is next to none, but the right eye looks ok. Faith amazes us everyday with how much she is looking at things. Just the other day she started following people as they walk across the room! This is huge! Although she still does not make direct eye contact she smiles when we smile so we know she is looking at our faces. She has also been tracking objects!

TRACH/VENT: A lot of people have asked us about how long Faith will need her trach and the vent. While Faith could be weened from the ventilator that is not the point- the point is to make her comfortable and allow all of her energy to be used for growing. Like we've said before when babies are around 18-24 months (corrected age) their tracheal malacia can be managed without receiving positive pressure from a ventilator. As for the trach Faith's upper airway is still very swollen. A few weeks ago she had another bronch- her airway was so swollen the docs couldn't fit the smallest sized catheter they have down her airway. SO basically Faith will need her trach for a couple more years. This sounds like cake to us- if we can get her off of the vent in the few years the trach will not be a big deal!
So that just about sums it up! If you have any questions about Faith please do not hesitate to ask!
We appreciate all of your prayers and support!
Brian and Jen

PS: We forgot to add that Faith is now 12.5 pounds. :)

Thursday, October 4, 2007

All Smiles!

Happy 8 month birthday Faith! Wow can you believe it's been 8 months already? Even though we've gone through some tough times, we are so blessed with our little miracle! She's sure come along way! Faith is smiling more than ever now- we've waited 8 months to see a "reactive" smile- she just started doing this last week. Interestingly she only smiles in her crib! We are glad she has a place where she feels safe and happy! Faith also looks the best she has ever looked. She is breathing MUCH easier (she's not even retracting!) and sounds pretty clear (she still receives breathing treatments every 4 hours to clear her lungs). Even though she is in the hospital we are all very happy. The move was refreshing for us, and we are so pleased that Faith is making progress. SO what's next? Well, even though Faith looks stables she is still a fragile girl. Before the h word can be mentioned again she needs to be REALLY stable. We also are waiting for nursing- we lost most of our nurses so we are in the same boat as all of the other families who are currently waiting for 24/7 nursing. Which we don't mind at all- it's pretty ironic but home is the LAST place we want to be with Faith! Although it is a sacrifice we are perfectly content with her safely growing in the hospital! (Funny how things change, huh- well if you'd see your baby almost die twice after coming home you'd be feeling the same way!)
Well that's about it today!
Thanks for stopping by!
Brian and Jen :)
PS: Faith wants to say "Go Rockies!" She's enjoying watching the games on her new TV! (Pics of this coming soon!)