Holiday Update

We've taken so many pictures lately and have not had the opportunity to share them with you so we decided to make another slide show. We are in the process of making a page of pictures for those of you who cannot access the you tube videos.

Time has sure flown by! We had a nice Christmas- it was a different kind of a day- we were surprised with lots of snow (twice this week) which has made it difficult traveling to the hospital (we live about 30 miles away-in bad weather or traffic it can take over an hour to get there) but nevertheless we made it (our theme song this week was.."Ain't no mountain high enough....") First Christmases are funny. The kids have no idea what's going on- nor do they really care it's the parents who often have high expectations for the day- we are learning that as parents of a special needs child (or any child for that matter) you have to learn to let things go. Like on Halloween when Faith was sick and we forced her into the kangaroo costume...should have let that go....well here's my letting go story for the week. Getting Faith's first picture with Santa was a big deal to me- we get our dogs pictures with Santa so of course we had to have Faith's. Faith did meet cyber Santa but that wasn't good enough for me.... we were told that Santa would visit the kids on Christmas day but he may not be able to go into the rooms whose kids are in isolation. We understood this but still were holding out for the chance that the jolly old man would make an appearance in Faith's room. SO Christmas morning rolls around- Brian is at the hospital early that morning and realizes he doesn't have a camera....well not a big deal we figured Santa would come later... I (Jen) was stuck at the house because my car wouldn't make it out of our culdesac turns out Santa shows up at 8am...but have no fear Brian grabs the video camera...just as Santa comes into the room Faith starts turning blue and has an episode (turns out she had a plug)!!!! Now I know everyone has Santa stories like this...but they don't usually involve a resuscitation bag!!!! We just have to laugh at this one...so Faith did not get to have her picture taken with Santa....we didn't get to get it on video.....but you know what we have more than anyone could ask for, this year we were given the gift of life!!!!
Alright well we have many more stories to share but we are wiped out. We hope all of you had a wonderful Holiday!!!!
Cheers!
Brian and Jen ;)

Merry Christmas

"There's no place like the hospital for the Holidays...."

Once again our apologies for not updating more! We are officially on winter break so we will have more time to spend with Faith and more time to update you (once everything calms down here!) Faith is doing alright. Just the other day we were thinking..boy it's been a while since Faith had any drama and sure enough we had a vent problem and sure turned blue....no big deal it was just mechanical but it was a nice reminder of why we are in the hospital. While it's impossible to go anywhere without hearing a Holiday song talking about home we are having a pleasant time spending Christmas in the hospital. Children's has been very good to us- and Faith has had some very special visitors. She got to meet some Broncos players (Yes, she was wearing her cheerleaders outfit she wears every Sunday!) Avalanche players, she has had hoards of carolers (from the FBI to the fire department and hundreds of bikers..you name it....) she even got to meet Cyber Santa! (Since Faith has MRSA the real Santa can't come in so Faith got to "talk" to Santa over a computer.....is that funny or what what an age we are living in!) This week the hospital did something called the "snow pile" where we got to fill a huge bag of toys for her. We felt bad because in all honesty Faith does not need anymore toys..but it did make being in the hospital during this time a little brighter. We have tons of Christmas pictures to share with you..but they will have to wait..there are cookies to be baked and presents to be wrapped. We will post again in the next few days.
Thanks for checking in today!
Merry Christmas eve-eve!
Brian and Jen

PS: Please continue to pray for Faith's friend Emily.....we are blown away by her strength and perseverance! We still need a miracle!

In order to keep sibling rivalry at bay we had to post a pic of the boys. The other night when Brian got back from the hospital they attacked him with love. Do they look like they've been neglected or what? ;)

Really no new Faith news to report this week. We dropped her vent rate to 12 which is wonderful- she seems to be handling it alright but we get the erie feeling she's on the verge of getting sick again (we can smell it in her trach...)

Really I didn't want to post about Faith tonight. And really I should not post about what I want to because of patient privacy but I know how many people read this blog and we know prayer makes a difference. One of Faith's "friends" (at the hospital) is not doing very well. We can't go into details but things do not look good. Please, please, please lift up this precious little angel in your prayers tonight. We need a miracle.

He makes ALL things Possible!

Brian and Jen

We know many of you check the blog numerous times a week. As you know we have not been very good at updating lately. Yes, we are busy but to be honest there isn't much to report on these days. Faith is doing so well, we would sound very repetitive if we updated as frequently as we used to. You can count on a weekly update, usually on the weekends. Like we said Faith has been doing great. While she is constantly fighting off colds and bugs but she is hanging in there. Her ventilator settings has been weaned significantly. In September she was receiving 22 breaths per minute- now she is receiving 14. When she is asleep she "rides" the vent, meaning she does not breathe on her own at all. This doesn't mean that she couldn't. Really she can breathe on her own, as we've said before the purpose of her being vented is to open up her bronchiole tubes. The goal is for her to use all of her calories for growing, not breathing. It's really working, too! Faith is almost 16 pounds (about 7.2 kilos, which is almost there!) She is quickly growing out of her 6 month sized clothes and onto 9 month! Our big focus lately is development. Our goal is that she will be able to sit up on her own by her first birthday. This is a very lofty goal because right now she is very wobbly. She receives lots of OT and PT throughout the week to help her reach these milestones.
That's about it! We hope you all have a wonderful week!
Brian and Jen :)

Say aaahhhhhhh

Faith has gotten to the point where she doe not tolerate ANYTHING in her mouth. The pacifier she used to cling to in the NICU- no way. Baby food, bottles, toys- not a chance. Lately she's been sticking her own fingers in her mouth so we assumed she might be teething. It was very hard to tell because every time we tried to look she'd freak out. Until a nurse put on a latex free glove and Faith opened wide- and sure enough she felt a poke; it's the beginnings of a tooth!!!! You can tell Faith has grown up in the hospital because now the only other thing she'll allow in her mouth (besides her own fingers) is a gloved hand! If you're not wearing the glove- forget it! We guess she likes the way it feel when we rub in on her little toothers! What a milestone this is! Makes sense- she's had soooo many secretions lately and has been drooling up a storm!

In other news earlier this week Faith broke the 15 pound mark! In fact as of today she was about 15.3 pounds and 23 inches long! On Tuesday she will be 10 months old! :) Not bad!

Well our apologies for not updating the blog more- as always no news is good news.

Thanks for checking in today!
Brian and Jen :)