Setting Sail

The time has come. On Monday April 7th our ship is set to set sail. We are bringing our girl home!!!!!!!!!!!!!!!!!!!!!!!!!! What a whirlwind this has been. We thought we were going to be taking Faith home this week then that got squashed- we let go, gave it to God and we were at peace with whatever was going to happen. Then a miracle happened- everything starting coming together on the same day- everything fell into place. The miraculous thing is Brian and I are totally at peace. Yes, there is some natural fear but we feel like the timing is right. WOOOOOOOOWHOOOOOOOO!!!!!! We can't imagine what life is going to be like- for the last 14 months this has consumed our entire life- it still will but in a different way. What
is it going to be like to not wake up every morning and head to the hospital at the crack of dawn- or to just go home after work...... we can't wait to find out!!!!!!
We are going to need lots of prayers this next week- this is a HUGE step for us. We are trading the safety and security of the hospital for the dream of being a family at home. As you all know this is a risk, but one that we know is well worth it, after all "ships are safe in harbors, but that's not what ships are for." Amen!
Brian and Jen :)

Spring Fever

There are days, like the day of our last post, when we are at peace with the whole going home situation. Then are days like today (or should we say this week) where we are chomping at the bit to get out of dodge. WE WANNA GO HOOOOOOOOOOME!!!!!!!!! We know it the grand scheme of things we will look back and this will all seem like a blur- but it doesn't right now...and that doesn't help right now!!! It must be that spring is in the air. We're currently on spring break which has been wonderful. Just being able to play with Faith all day is a blast. She's just really fun to be around. We've decided that she's going to be an actress when she grows up (if she so chooses.....believe me we're not going to get any say in the matter!) Faith LOOOOOOOOVES an audience. She sits on her mat (which one of her rt's has claimed as the lowest throne in Denver...) and just waits for people to come to the door and dote on her. When her audience arrives she just beams- she gives winks, smiles, and laughs- anything that gets a reaction. She's also found this to be true with her glasses. When we put them on her she rips them right off then laughs like she won the battle. Of course this makes her onlookers laugh and giggle which is in turn reinforces her behavior so the comic does it again (everything I know and have learned from being a teacher I've failed it it comes to my own child!) Nevertheless her antics makes the days seem shorter and the weeks and months to go by quicker. She's a ham, that's for sure!
Thanks for checkin' in!
Brian and Jen :)

Not so homeward bound

It's been a roller coaster around here. Last week on the way to Emily's funeral we got a call from our nursing agency- they said they had a few nurses to take care of Faith at home. We had a date; we had our hopes up. It was perfect; Faith was set to go home spring break. We were terrified but very excited. Through it all we felt an uneasiness about the whole thing (although neither one of us wanted to admit it) so we had major prayer time. We wanted it to be right, we wanted it to be God' timing. We spent last weekend cleaning our house, picking out a car seat and getting Faith's room ready again. Then we heard a voice..."no.....not yet...it's not time...just wait....." I was very mad when I heard this and I argued with God.."YES!!!! YES NOW! We can't do this any longer!!!!" The voice persisted..."Trust me....for I know the plans I have for you....." Truth is I didn't care what this voice was saying we were going to take our baby home! Then the inevitable happened- everything fell through from the nursing to the equipment to Faith getting sick and getting this weird rash all over her body. It was as if every single door was closing before our eyes. We were devastated...but also relieved...relieved that we weren't going to repeat what happened the last two times we tried to go home...relieved that it's not all up to us...but up to Him! There's an old Garth Brook's song (I know some of you are rolling your eyes..just bear with me) called Unanswered Prayers. The chorus rings.."some of God's greatest gifts are unanswered prayers...." Sometimes we feel as if we are in purgatory....that we will never see the light of day then there are other times when we feel a soft whisper that gives us peace..."Trust me.....Have Faith....." And that, we will.

Emily is Home

Last Sunday Emily went home to be with Jesus. In her 22 months of life she touched many hearts with her unsurpassing joy and relentless spirit. If you would like yo view a tribute to this little angel go to www.emilykane06.blogspot.com
Please continue to keep her family in your prayers.

I don't wanna see!!!!

Something tells me we are going to see more of this look in the future (especially in the teen years.....)
No she's not smiling in this picture....she is having a meltdown. Glasses and babies just don't mix- at least at first. Faith finally got her glasses this week. It's going to be an adjustment. Not only the fact that she has to get used to something around her face (which she is very hyper sensitive about...) but she has it get used to seeing a whole new world. A lot of people comment to us how they think Faith's vision is better than the docs say..we agree to some extent but we also think Faith has learned to cope with her vision loss. She has exceptional hearing and smiles big whenever she hears a familiar voice. The glasses have opened up a whole new world for her. It's going to take a while but just like she's gotten used to all her extra hardware we know she'll cope with this!
Thanks for checking in!
Brian and Jen :)

Little Girl, Big World

Last weekend we had a picnic outside on the hospital grounds.
Even daddy is having a hard time keeping his eyes open!

As you can see Faith is not a big fan of the great outdoors (she's getting better..) and yes she has sunglasses- she can only tolerate them for so long.
Her favorite toys helped her feel at home!
Safe and sound back in my home away from home.

Yikes! We know it's been a while..our apologies. We no longer have a home computer so it has been difficult to blog! Nothing big or new to report. Faith is doing great. When the weather is nice we are able to take Faith outside (which you never know in this state...when we had our picnic on Saturday it was 75 degrees...less then 24 hours later we had 6 inches of snow at our house!) Nevertheless we are very grateful to the hospital for allowing us to do this because she is in isolation. It's also good for us- not only because it gives us a chance to get some fresh air but it gives us a sense of independence. I (Jen) even took her out by myself yesterday..another step in the right direction. We are still aiming to go home in early June....sooner if nursing comes together (which we all know how that goes) we believe that we will go home when it is meant to be. Interestingly the last time we went home I remember sitting on the couch with Brian and Faith and he kept saying.."I feel like we are doing something wrong..." we both brushed that off thinking that it was because we had spent the previous 6 months in the NICU, but as it turns out we were doing something wrong- we weren't meant to be home at that time. When we think of all the people we have met at Children's it crazy to think that if we had never come here we wouldn't have met them. We know we would not be the same people we are today if this were true. Ok so I know I am rambling again. We'll do the best we can to keep you updated!
Thanks,
Brian and Jen :)