Monday, May 25, 2009

A step in another direction

One question we receive frequently is whether or not Faith is walking yet. Being someone who creates cheesy movie clips when my daughter conquers the smallest of milestones, you can bet your bottom dollar when the day comes when Faith takes her first steps you will all be the first to know. Meanwhile....we live by this pronouncement...

While walking may be overrated, breathing is certainly not. While she is still dealing with a lot of secretions (and especially frequent nighttime suctioning which, as you can imagine, is a joy for everyone involved) post-hospital, she is back to her "new" baseline; vent-free! Yes, you heard it- Faith officially breathes on her own - with the help of a little O2 of course - but every breath she inhales is hers and hers alone.

I might be biased but I think this accomplishment trumps walking any day!

Have a wonderful week!

Jen & CO!

PS: Oh and I almost forgot! Another Reming reached an important milestone this weekend- My sweet husband has now officially graced this Earth for three decades (bet you thought we had BOTH crossed that threshold already (we get that a lot) while in "stress years" we should be receiving our 15% discount every Wednesday, Brian is the first to officially join the 30+ club. :)

And just because the stars aligned just right, we got to cheer on the Nuggets in the Semi-finals ON Brian's birthday (Thanks Josh&Noel for the tix And GrandMary and Aunt Kristen for watching Faith! You truly made our rare night out happen!)

Sunday, May 17, 2009

All is well

I still cannot believe that a week ago Friday it took 24 hours for Faith to open her eyes, another 72 before we saw the slight glimpse of a smile. And one week later, she is bright eyed, smiling and out of the hospital. :)

While I am relieved that her illness wasn't anything too severe, I am a little alarmed by how quickly she went downhill with this just being a cold. If she reacts this way to a cold, what will happen when she gets something else? The truth is she has had MANY colds this winter, and for some reason this one was just different and hit her another way.

While I do think that this was inevitable, I can't help but think that Faith missing some of her meds might have played a role. We are in the middle of another insurance debacle which has forced us to pay full price for Faith's prescriptions (that's right, without a copay). Most of her meds are manageable $30 here- $60 there- not a huge deal. But a few weeks ago when I went to pick up a low-dose steroid she takes to help her immune system and was asked to pay $400 for it, I declined and prayed she would be OK with out it until we get this mess straightened out . Ten days later she lands in the PICU. Like I previously said I think this strain was so severe she would have been sick regardless (after all, she's had two other PICU visits this year while on this med.) but blaming insurance companies does alleviate my mommy guilt.

On another note, this past Friday the date- May 15th- loomed over me for the entire day. I knew there was something significant about the date but for the life of me couldn't remember what it was. Was it someone's birthday? Did I forget to pay a bill or go to a doctor's appointment? That night as I set my alarm clock on my cell phone and glanced at the date once again it came to me- awww...May 15th, 2007. Faith's due date. A year ago I would have known this date was approaching- like an anniversary of a death, I would have felt great unease in the days prior.

But now, two years later, I gave it five seconds of thought...gave an out loud "Huh." Smiled, turned over and quickly fell asleep.

Such an epiphany can only be followed by such eloquent words..

"When the heart weeps for what is lost, the spirit laughs for what it has found." -Sufi Aphorism

I am so blessed to have found all of YOU. Thank you for sticking with us!

Jen & CO.

Tuesday, May 12, 2009

On the mend

My apologies for not posting sooner. While I have more time on my hands than usual (not chasing a toddler around, off of work, etc) the hospital is full of friends and spare moments have been spent reconnecting with all the people who helped get Faith where she is today.

The good news is Faith is out of the PICU! Needless to say we were thrilled. Not only are the accommodations MUCH more comfortable on the floor, but Faith's second family (primary nurses, etc.) are up here as well. SO when they gave us a choice last night, there really was no choice at all. :) Getting out of the PICU also meant Faith was able to go back on her home ventilator (she was on a more powerful vent prior) which is one HUGE step in the right directing.

They are labeling Faith's junk "tracheitis" which bascially means a baterial infection that got the best of her. She also tested postivie for that's not some strand of the Swine Flu (c'mon people!) or RSV (I was almost postive it was) but the common cold. At first I was baffled- this is the sickest we've seen Faith in a LONG time and she has had many colds since then, why was this time so different? Apparently the hospital is filled with kids with "colds" and for a child with Chronic Lung Disease a cold can become severe (especially coupled with the petri dish that is her trach).

While she can climb up and down stairs, pose in cute Easter dresses, and wrestle with dogs, she is still a medically fragile child (with very crappy lungs) who beat the odds and survived.

Faith is still "working to breathe" this morning. You can see her ribs with every breath, however she is alert, interactive, and sometimes smiling. :) A WORLD away from the kiddo we took in here on Saturday.

The plan is the wean Faith on her vent settings while she gets over this hump. She is receiving two types of IV antibiotics, steroids, breathing treatments, etc. But what she needs most of all is time.

I have to say it has been nice to be able to lay next to Faith and just be. These days she is so mobile she doesn't let anyone hold her for a second, nonetheless stay still for more than two. Here we are free from the distractions of laundry, cleaning, and all the household demands that distract us from what really matters- being together.

Thanks for all of the prayers!

Jen & CO

Sunday, May 10, 2009

Mother's Day

The ultimate gift...

My Faith.

Today's gift also included open eyes....but perhaps the greatest gift is of all is the reminder to not taking one day of this precious life we have for granted.

Happy Mother's Day to all you beautiful moms out there!


Saturday, May 9, 2009


Faith gets sick a lot. There is hardly a week that goes by where her secretions aren't yellow tinged and her stoma smells. Knowing this, we are so use to her frequent illness that we take them in stride, and probably are a little too nonchalant about it. When the doctors tell us to come in, our response is usually "naaaa...she's not THAT bad."

Last night, when Faith started to go downhill (very quickly) once again we erred on the side of non-caution - and that lead us to where we are today: The PICU.

One minute Faith was fine. The next she was unable to breathe on her own, retching, retracting, extremely high heart rate and respiratory rate. We took her into the ED, they transferred her to the floor, the docs up there took one look at her and she was sent to the intensive care unit.

The past two times Faith was in the PICU this year were not like this. This afternoon she is non-responsive, lethargic, and breathing really, really hard (on full vent support).

I don't usually worry when Faith is sick. We almost pride ourselves on being able to keep our cool when she is hospitalized.

This is different.

Maybe it's because when I was out with friends last night, a sudden feeling of alarm came over me and I was immediately worried about Faith. I have no idea why... when I left her with Brian she was her happy go lucky self. I had no reason to suspect anything different. But my mind played the "what if" game.....and then when I got home and Faith was in respiratory distress, I knew this time was indeed different.

I will update more when I can.

Thanks for checking in, and thanks for keeping little Faithers in your prayers!

Jen & CO.

Sunday, May 3, 2009

If Newton only knew...

That his theory of what goes up, must come down.......

could mean so much!

(my apologies for the poor quality of video, sharing this new milestone couldn't wait for daylight!)

Friday, May 1, 2009

In our shoes

"And whoever compels you to go one mile, go with him two." -Matthew 5:41
(or in our case, 6!)

We marched, and we froze. We celebrated life, and we walked to support a dream- that one day all babies will be born healthy.

Once again, we were overwhelmed by many who walked with us this past weekend. This was our biggest team yet - we had 45 walkers! The night before I frantically searched the city for yellow visors, and bought 40 thinking it would be MORE than enough. Little did I know that friends, family, and colleagues (who are included in the two prior categories) would come in an outpouring of support.

Not many people will sacrifice their time and walk 6 miles with you on a Saturday, and we are blown away by the selflessness of those who did. A HUGE THANK YOU!

Thank you to all who sponsored us on this walk. We raised over $1,000! Your generosity goes to help such an important cause,and we can only hope that you will see the benefits of your efforts.

OK, enough of the fluffy, fuzzy stuff. Here are some pics from the day:
Faith greets her GrandMary before the walk.

My Brother and his NEW fiancee. :) Y'up that's right, Faith's favorite friend is going to be her cousin!

Apparently in Colorado, when the forecasters say it' going to be in the 50's, that includes a 30 degree deficit. Needless to say, we were not prepared for the cold. As least we had semi-appropriate "just in case" attire for Faith, for you never know the weekend will bring in this state! Weather aside, Faith had her daddy to keep her toasty.

Representing Faith's "RN Team" (cute, Beth!) is one of Faith's primary nurses who took care of her at Children's.

Faith and her entourage: Ms. Beattie's middle school girl's club (from the school we teach at)walked for Faith for the second year. They even made special "Hope for Faith" shirts, with butterflies on the back. (Kristin, you know I am your biggest fan, and I can only hope that one day Faith will have a teacher who is a dedicated to their students as you are!)

In what can only be a result of one's body trying to preserve itself from the bitter cold, Faith fell asleep went into hypothermic shock . OK, I know that's a little dramatic but it was a bit odd (and a little too ordinary) that our over stimulated baby reacted to the chaos by falling asleep...maybe she just saves the head banging/meltdowns for doctors offices and home. :)

Brian just finished reading the book, "Into Thin Air" and was a little too familiar with frozen, dead when she did fall into a comatose sleep we were constantly checking her to make sure there was still a pulse. It's not often we see our little girl sleeping so peacefully. :)
Hmmm...not sure if there was a pulse in this picture...perhaps her eyelids were frozen open? At least her pursed lips don't require breathing. (And no, we did not dress her in shorts, her baby jeans are just causing some major wedgie action. Speaking of dress, no, our 21 pound child (yes, she is still 21 pounds and wears size 12 month clothes) did not balloon as a result of her hypothermia- she's just really, really layered). And now that I am justifying my child's wardrobe over the Internet, I will stop talking. :)

Joking aside, I cannot tell you how impressed we were by Faith's behavior. Yes, she wanted to be carried for half the walk, but she was very interactive and alert- something we don't see a lot of when we are in public.

Thanks for the outpowering of support - whether you walked, donated, or are along for the ride on our journey of Faith. :)

Jen & CO.