Sunday, September 30, 2007

We've Moved!!!!

Sorry it has been a while since our last post- there has been a lot going on lately! This big news is Faith has a new home! Yesterday The Children's Hospital moved! Everything went very well- Faith was moved by a flight for life team- she felt right at home in the ambulance (she has had her fair share of rides) and fell right asleep. When we arrived at the new hospital we were blown away. It is incredible. Words cannot even describe it- it looks and feels like a fancy hotel- we've been calling it the Hyatt! The rooms are great- every room has a plasma TV and an X-Box 360 (which Brian is excited about) it also has a lot more room for Faith! There are huge windows that face the mountains and we have our own bathroom and shower (in the old hospital we had to travel to another floor to shower..and there was often a line!) Everyone kept commenting on how healthy Faith looked there- it really is a healing place!This hospital was recently ranked the 4th best children's hospital in the country- and now we know why! SO now we are never going to want to go home! ;) We will post pictures soon- we forgot our camera on moving day- our apologies!!!! Well that's about it- Faith is doing great- she is smiling more, grabbing onto toys and THRIVING! :)Pictures coming soon.....
Brian and Jen

Saturday, September 22, 2007

Above: Another rare shot of Faith- no leads (for her monitors) Faith takes a nap after a bath. Below: I'm working on holding my head up! I am still a little wobbly- but hey it's hard when you have tubes sticking out of your neck!

As always no news is good news! Yesterday Faith was discharged from the PICU and is now on the floor. Usually parents are happy when this happens but we were a little bummed! She is monitored so closely in the PICU- on the floor she is in a room by herself. Thus, we've begun trading off spending the night at the hospital with Faith. The good news is a week from today the hospital is moving! When we first heard about this move a year or so ago (before Faith) we thought that would be crazy- to move all of those sick kids! Well I guess we will experience it first hand! We are very excited about the new hospital- it is very state of the art and everything is so nice and well, new! It is farther from where we live, but closer to where we work. Other than that not much more to report- Faith is just hanging in there! They are working to get her on the right ventilator settings (it's really a trial and error thing- lots of pricks- poor Faith!) Well will continue to keep you updated!

Thanks so much,

Brian and Jen

Sunday, September 16, 2007

Very Bad Luck

Both my parents are teachers so of course I love to read (they can only hope!!!!!)
This is often how Faith looks- as you can see her left eye is often lags behind the right.

Oh I just love looking at that flash!

It seems as though this has not been our year. After some investigating we have discovered the reason for the problems; our durable medical equipment company set up the equipment wrong. Faith was not receiving adequate humidity because the technician set up the heater incorrectly and she became disconnected from the vent that night because there was a part missing that holds everything together. Boy, oh boy. Yes, Faith is a fragile girl but if her equipment was working properly she would still be home. :( SO now we are trying to sift through all of this mess. Now we are so freaked out by what happened even with equipment that works and competent nurses we don't know if we can every trust that our baby will be safe at home. Moving on now Faith is doing well. She still has the plug, but it seems to be breaking down. She is breathing a lot more comfortably, and is getting lots of sleep! Yesterday was her adjusted birthday- she is now 4 months old corrected and almost 12 pounds! Yay Faith! We will continue to keep you posted!

Brian and Jen

Friday, September 14, 2007

Back Again

Alright here's the update; The night of the last post Faith had another episode. We took her in and she had another episode at the hospital. They admitted her to the PICU and she had a Bronch- the bronch showed that there is a mucus plug trapped in her lungs. This was unrelated to her episode of being disconnected from the vent, but did relate to a problem we had that day. The heater that delivers humidity to Faith's trach was not working properly, therefor she was drying out. This caused a plug. So basically Faith's problems were related to human and mechanical error. How ironic that this would happen to us. And of course when this is happening our dog Buffalo has to have emergency surgery (yes it is about our 10th vet visit in the last 2 weeks). Anyways Faith is so fragile that the smallest slip up can threaten her life. Faith is still having a difficult time breathing and has been upgraded to a more powerful ventilator. So that's where things stand now. We are hoping Faith will stay in the intensive care for a while because most of the time she receives 1:1 care. Thank you all for your support and prayers. I am sure a lot for you are tired of hearing about all of this drama- sometimes it feels like a broken's crazy how Faith has born in winter...spring and summer has passed and suddenly there is that chill the in air again that tells us we've been doing this for all too long.
Well thanks again,
Brian and Jen

Wednesday, September 12, 2007

Faith Must Think The Hospital Is Her Home!

Alright....we're back again. We are not there yet. They want us to try to make it through the night then they are going to admit us to Children's in the morning. The reason we are not there now is because we'd just sit in the ER, and they want to wait until the pulmonary team is on. If we have another emergency we will go there right away but for now we are just trying to make it through the night. We have a very good nurse tonight, but we are still not sleeping. We are kind of traumatized by last night. As you all know Faith has been resuscitated MANY times- but we have never seen her as blue as she was last night. It freaked us out so much we want her in the hospital long term. Everyone has agreed that she is just too fragile to be at home. We look at the boy next door to Faith who has been there a year and a half and we want that to be Faith- at least he is alive. If we keep pushing for Faith to be at home who knows what could happen. SO we are going to tucker down and make the hospital our home again. If Faith dramatically improves and ONLY if we have COMPLETELY competent nurses who are very well trained on trachs and vents will we even consider going home again. This is all very devastating but at this point we just want Faith to be alive and if this is what it takes then so be it.'
Alright hank you all for keeping Faith in your prayers,
Brian and Jen
PS: Yes, we canceled our ENT visit today- that would have been too much!

It never ends...

Well it wouldn't be a homecoming without a call to 911 would it? We had another emergency last night. Faith became disconnected from her ventilator in the middle of the night. The nurse freaked out, didn't know what to do and yelled for us. We came down and started bagging her. This time it took a while for her to come back but by the time the paramedics arrived she was better. Oh boy. They wouldn't really have done much anyways because they looked at us and said, "you guys know how to help her more than we do." That's always reassuring- even when you call 911 people don't know how to help your child. Well, the good news is we know how to take care of her and up until last night we felt pretty comfortable. We'll just take this as a learning experience. Alright, well here's to 24 (ok..that may be pushing it lets say 12) drama free hours. We have to make a trip to her ENT today which is always a little nerve wrecking (getting her out of the house is quite an ordeal, and having her off her humidity is always a little scary). So please say a prayer for us this afternoon, and please pray for Faith- boy she is something else her will to live is incredible!
Brian and Jen

Tuesday, September 11, 2007

Home Sweet Home; Take 2

Cutting off the hospital bands we wore for the past 6 weeks.


Well she did it! Faith is FINALLY home AGAIN!!! After 215 days in the hospital we are a family under one roof!!!!The transition went very smooth- and Faith is doing very well. In about an hour she will be reuinted with her brothers!!!!!! Thanks for all of your prayers and support. Faith is going to do it this time! Home she will stay!!!!!
Brian and Jen :)

Monday, September 10, 2007


We've come along way since our wedding vows (to love and cherish each other, except for when the Broncos play the Bills). In a true bipartisan effort we agreed to disagree as Faith cheered for both teams on Sunday.
She started off the first half cheering with daddy, then finished off the second with mommy in orange and blue!

Of course Faith finally came to her senses and realized she was born in Denver therefore she's gotta stick with the home team! And it sure paid off- Below: Faith celebrating the win in her Broncos jammies. (The game sure put her to sleep- except for the last minute of course!)

She's a winner! Yes, it's true. Faith is coming home tomorrow. Yes, she is still sick but since we have a nurse at home the docs feel comfortable sending her home. The good news is she didn't need the pic line today (she will receive her antibiotics through her g-tube) and her MRI looked great. In fact the neurologist said her MRI looked great for a preemie! Alas- something that Faith doesn't have!!! Yay! So everything is on schedule for tomorrow mid-morning. We will have quite an entourage; the rehab respiratory therapist from the hospital, the rt from the medical supply company and our primary nurse are meeting us at the hospital to escort us home. The Mission: Stay home! To do this we need to keep Faith infection free which might be a challenge with RSV season gearing up. Nevertheless she's gone through soooooo much winter doesn't have anything on this girl!

Alright well we'll let you know and post our second homecoming pictures as soon as we are able to breathe!

Brian and Jen

Saturday, September 8, 2007


What a difference 7 months make! Faith has had her picture taken with this bear every Monday night. Above: Faith at 1 pound 3 ounces (her lowest weight). Below: Faith at 11 pounds, 4 ounces!

Is this the "I just did something naughty" look?

Above: Some babies hold toys, others hold rattles, our baby holds her feeding tube (but hey at least she is holding something!) Below: Yes, the IV is back. Faith has been poked so many times the only "good veins" she has left are in her head.

In typical Faith fashion, the minute we start talking about the h-word she has another set back. She is sick again. Her x-rays show some pneumonia (which is a chronic lung disease thing) and her blood work shows that her body is fighting some sort of infection. SO yes, the IV is back, and yes the pic line is coming. Faith has also had something else going on this week. There is a suspicion that she might be having seizures. To rule this out they've done an EEG (which came back ok) and they are going to do an MRI on Monday. Since she has to be "put out' for the MRI they will attempt to place the pic line in at the same time. So yes this means Faith will not be coming home on Monday. The good news is if she is healthy enough she can come home with the pic line since we will always have a nurse with us. Alright, so basically Faith needs to get better!!!! In some happier news, this week a vision therapist from the Anchor Center for Blind Children (never in a million years did we think our child would need those services, but anyway..) to evaluate Faith. They found out what we already know; Faith loooooves to look at light. In fact, when we shined a light on my (Jen) face, Faith reached and touched my mouth! This was the first time she has ever reached for anything before. Everyone in the room teared up! She found her mommy! So now we just shine away by putting light on anything and everythiing and Faith looks at it. :) Once again, it's always the little things....
Thanks for praying for Faith to get well so we can bring her home!
Brian and Jen

Tuesday, September 4, 2007

Happy 7 Months Faith!!!

Hooray! We rarely get a shot of Faith smiling (she still only smiles about once a day) but today must have been our lucky day because we got her just in time! Below: Party time! (Thanks for the balloons Nikkels!)

Today marked Faith's 7th month of life! Never did we think we'd spend it in the hospital, but then again there were times we wondered if she would even make it to 7 months so today was a day of celebration! Faith is a growing girl! A month ago when we got to Children's (yes, it has been a month already) she weighed 9 pounds 6 ounces. Today she is a whopping 11 pounds 4 ounces. It seems suddenly overnight she just stopped fitting into her new born clothes! The beauty of the ventilator (if there is such a thing) is that it allows Faith to grow and not waste any calories on breathing. Well that's about it for today. We are a little worried that she might be getting sick (totally our luck, huh?) but so far all of the blood work, x-rays, etc. look ok. SO please pray for increased health so we can get out of there!

Thanks so much!

Brian and Jen