Faith Edona Reming

It's a BOY!

2011-08-03T21:19:00.003-06:00

(Faith waiting for her brother to arrive)
I never went into Labor w/Faith (she was taken via emergency c-section) but I whatever I went through today was pretty close to it! Heart palpitations and coached breathing were definitely a part of this day. After all of that I can tell you that tonight we rocked a beautiful baby boy to sleep. I legally cannot post any pictures, tell you his name, or give any personal details but I can tell you that God’s fingerprints are all over this situation. I can also tell you that although we loved him before we met him (insert cheesy Savage Garden song here) he has definitely stolen out hearts and we feel more like a family (and exhausted) than ever before.

Up in the Air

2011-07-23T21:40:00.001-06:00

I've always been afraid to fly. I blame it all on the movie La Bomba and the crash scene that traumatized me as child. That pit-in-the-stomach-we're all-about-to-die feeling that I get before I board a plane has now become a euphemism for how I feel when faced with an anxious situation.

So when we met with social services last week and they said we were approved and could be parenting another child within the week that feeling in my stomach returned. When we "bought a ticket" into this program we knew where we were heading..but through all the packing..the long, long lines (and intrusive) security check points our destination seemed out of reach.

But as of today our plane has left the terminal and are on a tarmac. We thought we were going to lift off this week..and we were anxiously awaiting on the runway as the captain came on a said there was a minor delay and the plane (our home) is awaiting a maintenance check (a basement window well needs a cover, storage shed needs to be padlocked, etc.). While these tasks were quickly completed you know how airline time lines work and one minor delay has us stranded on the tarmac for what seems like eternity.

If there is one thing my irrational fear of flying has taught me it's to trust in serendipitous events....(missed flight or cheated death?) so when we bought REAL airline tickets a few months ago for a little getaway for THIS WEEK we had no idea that the week prior our hopes of being placed with a child would be delayed yet another week. We had these same plans last summer but they were diverted when Faith was hospitalized before her reconstrive surgery.

So last week when I grappled with the should we stay or should we go guilt, little did I know that air traffic control was really under HIS control. While part of me wished that we would get our child and then I wouldn't have to get on a plane the other part knew that the fear was not from flying but being a foster parent.

I once heard a psychologist say that it is OK to have a fear of flying as long as it doesn't prevent you from getting on the plane. While I've had too many white knuckled, tears streaming down my cheeks flights to count, I've always gotten on the plane.

Since I haven't traveled since Faith has been born I've felt exempt from my phobia the last few years. While I am still anxious about boarding a plane, I have put the fear into perspective. Turbulence has nothing on what we've been through the past four years...a little loss in cabin pressure is breeze compared to seeing your child on life support. While I the idea of traveling out of state and being away from Faith for a few days causes an almost panic attack we (w/a little help from Xanax) are still getting on the plane. And while parenting a child we know nothing about induces sweaty palms, we are still getting on that plane.

SO there you have it. If my airplane metaphor has confused you to bits the cliff note version is we will not be officaly approved to begin fostering until late next week, which will be when Brian and I return from a much needed trip. So here's to taking flight on multiple adventures!

Jen & CO

2011-05-24T20:02:00.002-06:00

The weekend before last was picture day for Faith's dance class. She cried, screamed, tore her costume, threw her hat and wanted nothing to do with the affair. Needless to say our expectations we extremely low for her dance recital debut this past weekend.

Turns out she was holding out on us (and just waiting for an audience......)

And for the encore....

Special thanks to my AMAZING friend Kristin who has volunteered every Saturday for Faith's class (and who encouraged me to find a class like this for Faith in the first place!)

And thank you to all of the wonderful people at Dancin' Dreams for making our little dancer's (and her parents') dream of being a part of something like this come true!

What this picture proves

2011-05-14T20:40:00.000-06:00

We are finishing our basement.

When we moved into our humble abode five years ago we were sure we would not outgrow this house before it was time to move out of what was billed a "starter home." We were not anticipating having a child 10 months after signing off on our first home, nor could we imagine that our house would not be worth what we bought it for when it was time to sell.

So far we've made do with our 3 bedroom, 1 bath, 1,300 sq. ft. home. Faith loves the window seat that overlooks the culde-sac and the spare bedroom is now a playroom filled with her train table and gazillion tiny pieces of this and that (Faith is now in the tiny pieces toy stage- you know the type of Mattel toys that come with a million little plastic pieces that all seem very important when you purchase whatever it is but only days later end up strewn about the house- and forget trying to organizing it all- the pieces are far too random to be categorized.) Needless to say her playroom has served its purpose and we haven't had need to expand- until now.

Oh no, it's not what you think. There is not a bun in the oven, or even something even remotely close to that but we are adding to our family a different way.

Before Brian and I were married we always knew we'd adopt. Two biological children, and two adopted was our plan. We even considered adopting before having biological children- but of course life has a funny way of changing your plans.

We've been thinking seriously about adoption for the past few years. We initially looked into international adoption but could not afford it. Domestic, private adoption was also pricey, and we were not sure we wanted to adopt an infant (we have a child who still does not sleep through the night, so adding another child who needs care in the night is not ideal). So we are going the route less traveled, the route that brings that reaction, "are you crazy?!" We are going through the foster-to-adopt program in our county. We are not doing this because we want to "try a child out" before adoption- believe me- WE WANT TO ADOPT. It just doesn't work that way. We have gone through eight weeks of pre-fostering/adoption classes that have ingrained the phrase, "you are fostering with the HOPE of adopting." The truth is 85% of children who enter the foster care system are reunited with their birth families. We are doing this knowing that we will foster children who will follow this path, but our hope is that we will have one who is a part of that 15% that need a forever family, and we know ours has a lot of love to give.

So there it is- the next step in this crazy journey. Of course we're crazy, of course we're getting into this over our heads- but that's just the type of people we are. Over the past few years we've learned to accept that traditional child rearing just isn't our thing. We are ready to rise to this challenge and we are ready to fill that room with someone who needs it, not plastic pieces.

We will definitely keep you updated, and I am sure I will use this blog as a catalyst to document this journey. We have done all we've needed to on our end (the training, paperwork, etc.) we are just waiting for the home study and final approval- which is sure to give Brian enough time to finish that basement.

Oh and to answer the question from the title, this picture proves it's time for a sibling (or else PETA is going to picket our house). :)

Jen & CO.

Breaking-into-Spring (the only way we know how)

2011-03-29T07:45:00.008-06:00

I had many things to do on my spring break list, one of them being updating this blog. I had a lot to blog about for a change- Faith's new dance class, her attending school, and an exciting new chapter in our lives that is about to unfold. What I didn't want to write about is how Faith is in the hospital battling RSV. But then again, maybe if we weren't held captive (dramatic, I know) within these four familiar walls I'd find another excuse why I can't blog today.

Ok, first the not so fun part- We brought Faith in this past weekend after she couldn't keep her sats up and her oxygen requirements increased significantly. Her lungs sounded horrible and she was working to breathe- all markers pointed to RSV and sure enough it was confirmed. The good news her reconstructed airway seems to be handling this bout of illness fairly well. I have not written about it, but Faith has had a chronic gagging issue since the surgery last fall. It's hard to watch, and I'm sure even harder for her to endure. It just seems as though she cannot clear her secretions very well, and it seems very related to the reconstruction.

On a brighter note, when she's not gagging, Faith is a thriving four year old. She amazes us everyday with what she knows. Her memory and attention to detail is impeccable. Her only audible word is still, "momma" but she's signing like crazy and finds lots of other ways to communicate and "get her point across." The other day she got out a toy that she had played with when she was an infant. Without my prompting she signed, "me, baby, hospital." This was our first inclination that she remembered her first year of life spent in the hospital. A few hours later a commercial came on with a nurse holding a baby. Faith pointed to herself and once again signed, "me, baby, hospital." I asked her if she liked living in the hospital and she signed, "no, home."

In April she will begin Preschool again. For the past two months she's been attending a toddler/baby program at Anchor Center for Blind Children. We've been connected with Anchor Center since first learning about Faith's vision loss. They've done everything from hospital visits to regular monthly therapy visits in our home. We're excited to send her to their preschool program two days a week. When she's not at Anchor she will hop on the yellow bus and go to the school she went last year two days a week.

Faith recently started attending a dance class for kids with special needs. She absolutely loves it. It is by far her favorite part of the week. I am not going to be one of those mothers who only seeks out activites that serve children with special needs, but this class serves her so well. There is no need to apologize for her impulsive behavior and she is encouraged to move and free to express herself how she sees fit. In May she has her first dance recital. The kids are dressing like Jessie from Toy Story and dancing to "You've Got A Friend in Me." Too cute. (If you want to see a news story about the dance class check this out.)

Alright folks, well that's all for now. I've got another, exciting update in the works (with some big news attached). Hmm... way to leave you w/a cliff hanger, eh?

Thanks for checking in!

Jen & CO

*******3/31 Update: Faith is home! Just in time go to Disney on Ice, Princess Classics tomorrow. (Yes, you bet your bottom dollar she's going, "post"-RSV and all) Looks like this family finally caught a break!*******

Faith is 4 today!

2011-02-04T08:17:00.000-07:00

Everything we didn't (and some we did) show you from Faith's 3rd year of life...

Merry (almost) Christmas!

2010-12-22T20:45:00.000-07:00

What can only mark the arrival of the Christmas season in the Reming household other than the steady stream of sub-par Christmas movies w/predictable, unrealistic plots on the Lifetime network that I just can't seem to stop watching (it's like a horrible accident on the side of the road- you just can't help but take a look)and my insistent need to begin blogs w/run on sentences? Ah, yes, the awkward Santa photo. For three years running Faith freaked when she approached the man in red which resulted in another momma-being-groped session and left her father with no choice but to stand awkwardly beside it all. Holly jolly Christmas indeed (and once again a little too jolly for Mr. Kringle).

We are officially on winter break and officially enjoying the season. Faith is very much into everything this year and when asked what she wants Santa to bring her she signs, "train" and "barbie car." (Could we have asked for a more balanced toddler? I think not).

Brian's mom is in town for the week so Faith has been receiving lots of love from her Buffalo Grandma. Now if we only could get some snow I think we'd have a picture perfect Christmas.

A little update on the school situation, beginning in January Faith will be visited by a home bound special ed. teacher provided by the district for three hours a week. I think Faith is the most over serviced child in the state (which of course is a really good situation to be in.) She receives home visits from her speech therapist, occupational therapist, and physical therapist each of whom come 2 times a week (for a totally of 6 visits) and we've just started taking her to a feeding clinic at Children's on Mondays. So with her addition of the home school teacher she's maxed out on adults (now only if we could have some kid therapy in there..) After just writing that I realize that might have sounded negative but in reality we have one incredible team of professionals that surround our family.

In keeping with the randomness of this post, my goal this break is to get Faith to wear her eyeglasses (y'up, she still has glasses, you just never see them in pictures b/c she whips them off her face faster then our camera's shudder speed.) I'm on the hunt for "princess" glasses so if anyone happens to come across any let me know (and they have to have an actual princess on them- when I showed her a pair of glasses inspired by Disney princesses she called foul and refused to allow them within 6 inches of her face). We've come to an agreement that if momma can find princess glasses she will wear them (just like the other day I came home from work and she greeted me at the door by requesting a princess potty...we're still negotiating the terms in that contract).

Looks like our little girl is growing up!

Hope you all are enjoying the holidays- it all seems to be coming and going very fast this year, but I hope you are able to savor the season.

Jen & CO.

2010-11-30T21:00:00.003-07:00

Eeek! You know it's bad that you haven't updated your blog when your camera is filled pictures from two major holidays, none of which have been uploaded..and another one is just rounding the corner.

Busyness aside (which is excuse that can only go so far), I think I've avoided updating because I'm really not sure what to say...Faith is "good" but not "great."

Faith has had two bronchs since her first utterances of Momma. The Bronch in October did not look so hot, last week's bronch showed improvement. While her breathing is not labored or stridorus, it is still not normal. She's been struggling with a bout of croup for about 6 weeks now which results in long nights of coughing fits.
Other than that we can't complain. Faith doesn't have a hole in her neck, which I suppose is the goal.

We have been advised to keep Faith out of school for the time being. Something I am having a very difficult time coming to terms with. If you could see her face as it lights every time she runs to thw window as she hears the breaks of the garbage truck thinking it's the bus stopping to take her to school it would make you sad. If you could see how over the past month she is not as affected by the noise of the garbage truck's breaks, it would make your heart melt.

Faith's airway is still considered unstable and exposing it to the petri dish that is her school would not be wise. That still does not stop us from taking Faith out and about every chance we get. She frequents libraries, museums, and Cost-co (Ok that last one's for me- is it bad that I know if I have Faith in tow I can get twice
as many samples? Hey, busy moms have to eat!) Joking aside there is not a day goes by that she doesn't sign "friends" which is just heartbreaking.

Faith spends her days with her wonderful nurse (whose been with us for over 2 years! Words cannot express the blessing she has been to to us!) My mom fills in for 1/2 days on Fridays, which of course Faith loves.

Work has been going well. Brian is teaching art at a school in downtown Denver and I am still at Greenwood (NE Denver) teaching as a math interventionist/coordinator for a teacher residency program at our school. I am working four days a week this year which allows me flexibility with Faith's constant doctor appointments and therapies.

Faith's only word is still "momma" but she uses it for everything. I don't think I'll ever get tired of hearing that. She is definitely experimenting with her voice and is making up for her lost babbling days from infancy.

And I'm finally able to report that I had my not-so-silent-mothering-moment. Three years ago a friend who's daughter was trached assured me that one day I'd be telling Faith to be quiet (she told me this while shhhing her preschooler in the grocery store.) I can now confidently say that every time we take Faith out in to public she is incredibly, ridiculously, MIRACULOUSLY Loud. And I've bitten my tongue many a times when my first impluse is to "shhh."

I cannot part without posting a pic. So here's one from Halloween. I have to admit that my years of picking Faith's Halloween costumes are officially over. And this year she chose something that we'd certainly never expect, after all this is the girl who loves dogs, alligators and dinosaurs. But she chose something that one would expect from a little girl...

Y'up. A princess. This choice not only signifies the end to my involuntary torture of Faith in subjecting her to my choice of Halloween attire, but assurance to Disney shareholders that the stock is secure as they have nabbed another consumer. It was only a matter of time and while she is still demanding dinosaur rides, it's with a tiara on head and wand in hand. And after all she's been through she can have any kind of ride she wants.

Thanks for checking back, I promise to end my blogging negligence!

Jen & CO.

How sweet the sound....

2010-10-12T20:21:00.001-06:00

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2010-10-03T20:26:00.001-06:00

Several weeks ago I wrote a post that mentioned Faith's favorite books are from the How Do Dinosaurs series. In a serendipitous turn of events, a reader (and author, see her books here) who happens to read this blog also happens to be friends with the author of the How Do Dinosaurs series, Jane Yolen. Within a few hours I received a lovely e-mail from both authors. A week later a package arrived at our door filled with dinosaur goodies (books, a DVD, stuffed animal, etc). Last week when Faith was in the hospital, another package arrived, this time it was the just released How Do Dinosaurs Laugh Out Loud? book, signed by Ms. Yolen herself.

The teacher in me was ecstatic to have an autographed copy from such a celebrated author. The mom in me was touched that someone whom we've never met reached out and made our little girl's day.

Here's a pic of Faith "roaring" with her new dino friends.

As it turned out we were on the cutting edge of learning how dinosaurs laugh and we're on the verge of hearing Faith's. When she laughs we definitely hear more air behind it, but it's still a work in progress. For now she's enjoying ROARING with her new dino stuff, and we're loving every minute of it.

A special thank you to Margaret, Heidi, and Ms. Yolen for helping bring out our little dino's laugh.

Jen & CO.

PS: In my excitement I forgot to mention Faith's breathing, which has greatly improved since my last post. It's not perfect, but it's livable. The coming weeks will be telling as Faith is coming off of heavy doses of steroids, which have a history of masking some her her underlying issues.

SOS!

2010-09-22T07:39:00.011-06:00

****Update*****

Just wanted to give you a quick update that Faith is home. The bronch looked "OK" but we still have a long road ahead of us. They did another dilations to balloon it open. Part of the graft also appeared to be "dying" which means there is risk for infection. They will take another look in 1-2 weeks. For now she'll wean off the steroids which will be the ultimate test (can her airway stay open without them?)

Keep the faith!
Jen

Help! We're being held hostage by the hospital!! Ok not really, but it's true they are holding us against our will. ;) Faith is her typical active self but the staff does not feel that she is safe to go home yet. Plus, there is still a debate on whether or not heated high flow (which she is on) can be done at home.

The pulmonologist on service this week made a comment that we are walking a very thin line. He also warned that this will be the most dangerous and critical respiratory season for Faith and we will be seeing these four walls of the hospital a lot. Her airway is extremely narrow and the tiniest bit of inflammation can (or in words, "will") cause need for intubation.

We learned some new information last night that answers some questions we've had. The reason why our ENT isn't quick to re-trach is that one of the grafts is directly over where her stoma (trach opening) was. This is why Faith was never able to have the reconstruction and the trach at the same time. This is also why the decision to "tough it out" or re-trach has not been black and white.

So the plan is to do another bronch tomorrow. If everything looks "OK" (I use that word very loosely....with such a narrow airway perhaps a more appropriate term would be "livable" or "sustainable) then the soonest we can go home is on Friday. Although in rounds today it sounded like we'd be staying through the weekend.

It's very difficult for Faith to sleep in the hospital and she (and her parents) have been doing very little of it.

We'll let you know what we learn from the bronch.

Thanks for checking in,

Jen & CO.

2010-09-19T16:28:00.003-06:00

Just a quick update to say that Faith transferred to the floor yesterday and is in very good spirits. :) She is alert, active, and happy (during the day, nights have been another story). She has been on a high flow nasal cannula, which has been a nice alternative to the bi-pap. The only downside is high flow doesn't exist at home. Hopefully tomorrow we'll talk to the docs about making the transition home in the not too distant future.

2010-09-16T10:33:00.006-06:00

(Think this looks bad? Pretty sure it feels ten times worse...it's kinda like breathing through a blow dryer).

Cruel and unusual punishment or an assistive breathing device? You be the judge. Right now it's pretty much just the former, as Faith has spent the last two night with this bi-pap mask strapped to her face. As for the latter, it has done little to support her breathing. She dropped (dessatted) all night long (about 50 times).

Her ENT does not think she will be able to breathe at night without positive pressure. We don't think we can live at night with positive pressure. She was flipping out so much last night I thought she was seizing.

That's all to report. Still in the PICU- still waiting/wondering what's best for Faith (and for her family too) ;)

Sleeping Beauty

2010-09-13T10:35:00.004-06:00

Remember last go around we were mad that Faith wasn't fully sedated? Well, I take it back. Full sedation is over rated. I do not like looking at my daughter lying lifeless in a hospital bed. She does open her eyes from time to time but is quickly medicated and falls back into her comatose state.

That's how our weekend was spent. This afternoon they will take her back to the operating room for a bronch. We're just glad that there will be movement one way or the other. Trach, or no trach we just want our Faith back.

Jen & CO

************************UPDATE*******************************

The bronch last night went about as well as it could have. The swelling did decrease and they did not feel Faith was at the point where she needed a trach (although the real test will be when she is breathing on her own). The plan is to extubate and put her on bi-pap.Her airway is pretty floppy, thus she needs positive pressure to stent it open. ENT feels we will need to have her on bi-pap at home (hopefully just when she is sleeping). While this is good news we are anxious to see how this pans out once we are home. We don't care about the method in which Faith breathes just as long as she is comfortable.Thanks for all of the prayers!

The How

2010-09-11T09:00:00.004-06:00

I wanted to post another picture of Faith's wide mouthed smile from the past week and post a "how did we get from here ____ to here-_____." But I did not bring my camera.

It's really not as sudden as it seems.

From the day her ET tube was pulled (4 days post-surgery) Faith struggled to breathe. Initially it was thought to be secretions that she just needed to clear. Brian and I both knew there was more to her breathing issues than that.

Where things were left after the last post was if her breathing worsened or did not get better to call the doc. Well, things did not get better. We spent last Sunday in the ED, but were told there was really nothing they could do. A few days later our ENT put her on a high dose of Decadron (steroids) as a last resort. After three days of steroids Faith showed no improvement.

When I got home from work yesterday Faith was gasping for air. After speaking with our ENT she gave us the go head to drive her to the emergency department. As we strapped Faith into her car seat her breaths became shorter and she started turning blue (hence, the 911 call and ambulance ride).

Once at Children's they bronched her and discovered that her airway looked even worse than the swollen pictures from last week (the one in the middle from my previous post). *insert big sigh here* The ENT could not believe how good Faith looked prior to the bronch because the evidence showed a severely swollen airway and how she was breathing through it was unbelievable.

Prior to the bronch the hope was the docs could dilated (balloon) her airway once again. The consesues was the current state of her airway is beyond ballooning. The word "dynamic" was used to describe her airway- something we have heard before.

So that's where we stand today. Faith is intubated and on a ventilator. She is on numerous meds/sedatives and is strapped to the bed.

Not sure where we go from here. The current plan is to give her a "chill out" period where she does nto have to work to breathe. On Monday our ENT will do another bronch.

The "T" word has been thrown around a lot.

While Faith was in surgery last night I said to Brian, "I don't know what's worse- Faith coming out with a trach or keeping things the way they are and not receiving any answers."

Intubation is neither of those things, but it's definitely not where we expected to be.

At this point I am relieved that Faith is not struggling to breathe. It was a very confusing and uncomfortable week watching her work so hard to breathe.

Thank you for keeping little Faithers in your prayers,

Jen & CO.

2010-09-11T00:02:00.002-06:00

Too tired to write in detail but I wanted to put out an update for those who might have received a frantic "prayer chain" phone call. Our story involves a 911 call, an ambulance ride, an emergency bronch, and now- Faith intubated in the PICU.

I will answer the why's/how 's tomorrow...a little unsure of them myself and this point.

Prayers appreciated,
Jen & CO

Two Steps Back..

2010-09-03T18:38:00.006-06:00

We did not receive very encouraging news after Faith's bronch on Thursday. In fact the docs first words were, "we're lucky your daughter can breathe through a very small airway" this was followed by "we don't want to lose her airway."

Hard pill to swallow.

The alleged culprit is reflux, which just seems absurd because Faith has a nissen (a tie around her stomach so she cannot reflux, although I am assured that it can still happen). Faith has also been on Prevacid since infancy. So in an effort not to "lose her airway," ENT doubled the dose of Prevacid, put her on Zantac at night, and added another inhaled ant-inflamitory steroid to her regime (QVAR).

They also dilated her airway which provides a temporary fix if the underlying issues (the suggested reflux) is not controled.

Don't mean to gross you out, but the pictures really tell the story:

Above: This picture was taken on 8/27 when they pulled the ET tube at the first bronch after surgery. The two white areas (top and bottom) are the rib grafts.

Above: This picture was taken 9/2. As you can see the airway is extremely swollen you can't even detect the grafts (the swollen vocal folds are threatening to move the grafts).

Phew! This picture was taken after the ENT dilated (or ballooned) the airway (9/2). What a difference, eh?

ENT asked us to pay very close attention to how Faith was breathing after the dilation vs. how she was breathing the night before (w/a very compromised airway). The bad news is she pretty much sounds the same. In fact, she sounds like she did before she was trached when she was 6 months old which is very, very disconcerting.

They want to see us in another week to repeat a bronch. However if her breathing worsens (once again, listening for the sounds) we need to go in sooner.

Well folks, looks like it's time to up the prayer anti! Good thing we know the right kind of troops to call in!

Keep the Faith!

Jen & CO.

2010-09-01T19:29:00.002-06:00

We're HOME!!! It's hard to believe- we were expecting to stay 2-3 weeks and ended up staying 8 days. Woohoo! Taking the limited sedation route really paid off.

Tomorrow Faith goes back to the hospital for a bronchoscopy. We have to go through the whole O.R. rigmarole and she will be put under anesthesia again. This is to ensure the graft is still in place and everything is healing well. Faith will undergo bronchs like this for the next few weeks.

I'm curious to speak with our ENT tomorrow and get her take on Faith's breathing (which is pretty heavy and often times labored). We're thinking she just needs to learn to clear her secretions, which is probably painful at the moment.

I will update after the bronch tomorrow.

Keep the Faith!
Jen & CO.

Happy Girl

2010-08-30T12:47:00.002-06:00

Thank you for blessing us all with your beautiful comments...they mean so much to us.

My lack of frequent updating means the task of keeping Faith in her room has become frequently difficulty (a good problem to have).

Yesterday Faith came up from the PICU and is now on the 9th floor. :)

And now to the question you may have been wondering..

No monumental sounds yet...I have to say I was expecting Faith to be able fully vocalize once extubated, which has not been the case. We can hear some raspy very faint cries when she is upset, no other than that we are waiting.

She does however sound like Darth Vader. She has tons of secretions and will need to get used to clearing them on her own. We cannot deep suction because it might compromise the graft. Watching her labor to breathe has been difficult but we've been assured that this is par for the course.

ENT said it may take a few weeks for the swelling of her chords to subside. They also say we will know in two weeks if the graft has "took"and the reconstruction was successful (I know, I thought her breathing on her own meant it successful but as we know Faith is a sprinter).

And speaking of ENT, in the end our doc was right. If we stuck to the original plan, Faith would be weaning off sedation today. She was right when she said this approach means a much quicker recovery. In fact, Faith seemed to be at her best when she was off all heavy meds. For this, we are extremely grateful that we have a doc. who knows what she's doing and puts up with us. :)

We're hoping to get out of here sometime this week, which is just AMAZING!

Thanks for checking in,

Jen & CO

Oh ye of little faith....

2010-08-27T19:19:00.001-06:00

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Next Steps

2010-08-26T16:54:00.004-06:00

Tomorrow they will bronch Faith to see if the swelling has gone down. If things look good they will pull the breathing tube- and that my friends is when we find out if the surgery was successful.

Right now Faith is basically breathing with a trach in her nose. When that tube is pulled, the on-her-own breathing begins.

I am not trying to be pessimistic or show a lack of Faith but I do not think tomorrow will be the day the tube is pulled. The average timeline is 5-10 days- tomorrow is only day 5. We all know Faith adheres to a timeline entirely of her own.

If it's pulled tomorrow and she breathes- awesome. If not, a few more days is not going to hurt.

And for those of you who've been wondering....no voice yet (remember she still has a "trach in her nose"). When that tube comes out- so will her voice.

Here's to unexpected surprises,

Jen & CO

2010-08-24T19:07:00.006-06:00

Today was a difficult day.

We went into this expecting our daughter to be comatose for the 7 days her breathing tube is in. Our ENT on the other hand had other ideas. There are two schools of thought on post-reconstruction and we are caught in the middle.

On one side (the side we were prepared for) the patient is totally sedated for the 7-10 post surgery so the airway/graft can heal and there is no risk of the breathing tube (in her nose) coming out.

The side we were not prepared for is the "awake" recovery where patients are fully awake (albeit, still on pain meds) with the tube hanging out their noses. The pro of this side is quicker recovery and no risk of post-surgical infections that occur when patients are sedentary (and due to Faith's chronic lung disease she is at high risk for this). Of course the BIG con is that if the breathing tube comes out- in the words of our nurse today, "it can be life threatening." The tube is not re-inserted like an ET tube and must be placed in the OR.

So while the PICU team is advocating for sedation, and our ENT is very much against it.

Faith is living in an in-between zone right now- she is awake and aware of her surroundings but extremely groggy and thrashing around. There is very little that calms her (except for very temporary boluses of sedatives) and our new job is to be constantly vigilant that her breathing tube stays in place.

Ah-yi-yi! And to think I brought enough reading material to last a week!

We just need to get through the next six days. The plan is to keep the tube in until sometime next week. Until then we are hunkered down in the PICU.

Thanks for checking in.

Jen

**************************************************************************

Update: This morning we have a clearer perspective and are more comfortable with the plan. Faith is still very groggy and agitated, lightening up the sedatives might actually help her come out of this funk. She is still on high doses of narcotics so we know she is not in pain (just annoyed that she is attached to so many different things). Today they took the drain out of her neck, and yesterday they removed the drain from her chest incision (where they removed the rib cartridge). We are moving in the right direction. :)

2010-08-23T21:04:00.005-06:00

May we present to you....

The newest member of the naked neck club.

Ok so you might not be able to tell now b/c she came out with a lot more tubes than she went in with...but these are temporary.

Everything went well- although the real test will be when she is breathing on her own.

The good news is she did it. :)

Thank you again for the tremendous show of support.

We love you all!!

More tomorrow!
Jen & CO

2010-08-23T16:53:00.004-06:00

My wonderful friend Tina just texted this pic of her beautiful family. (Thanks guys!)

We have never felt so supported before. We just wanted to send a huge thank you to everyone who has texted, called, e-mail, commented, and have said prayers for our little girl today.

We are blown away by your support.

Faith has been in surgery for the past 3 hours and we were just told we have a "few more" to go.

I will definitely post a picture tonight.

Keep the Faith!!!
Jen & CO.

All Systems Go

2010-08-22T22:05:00.001-06:00

Make an on-line slide show at www.OneTrueMedia.com

Surgery is at 1pm and is estimated to be 4 hours. We will update as soon as we can.

Thanks!
Jen :)

Mysterious (Dino) Ways...

2010-08-16T21:30:00.002-06:00

Lately Faith has been into dinosaurs. She loves to watch them on TV and play with tiny plastic dino figurines, but most of all she likes to read about them in books.

When she was a resident of TCH she received the book, How Do Dinosaurs Get Well Soon? Which, of course she loves. So when her LTR surgery was approaching we decided to peruse the internet for more books from the same series so she had something to look forward to post surgery.

The titles we found couldn't have been more perfect:

How do Dinosaurs Go To School? (click, click)

How do Dinosaurs Play With Their Friends?
(Faith's favorite word is "friends." Whenever she sees a child she signs "friends.")(click, click)

How Do Dinosaurs Play With Their Dogs? (click, click)

How Do Dinosaurs Play With Their Cats? (very enthusiastic click- Faith is also very into cats at the moment).

Before I knew it my online shopping cart had reached Free Shipping mode. (Always a sign you have purchased too much- it's how they get ya!)

Nevertheless we gave in as wanted nothing but the best for Faith as she recovered. Just when I was about the check out I glanced at a blurb for the up and coming How Do Dinosaurs Book:

How Do Dinosaurs Laugh Out Loud?

OMG! Heaven couldn't have come up with a better title.

(CLICK, CLICK) This was going to be perfect.

To my disappointment this set of double clicks did not result in the book being deposited into my shopping cart.

"Book Not Yet Available- Pre-Order Today for September 1st Publication"

Of course I took this as a sign. I even wrote another post about it, that of course did make my blogger publication when her surgery was canceled. I promised myself I would not purchase it until we learned how Faith could laugh out loud and lamented about how unfair it was that the world would now how dinosaurs laugh before my daughter does (melodramatic, I know).

I was wrong.

(CLICK, CLICK).

As it turns out we will find out how Dinosaurs and Faith laugh out loud.

Monday, August 23rd.

After receiving the information that we would have to wait another year we received another call that there is a new opening- and after this date there would be no "third chances."

The timing couldn't be worse. August 23rd is the first day of school for Brian (the for third me).

But God's timing is perfect and we have full FAITH that HE ordained this special date for Faith. While we will never fully understand the plan for the flip flop we know there is a PURPOSE, because HIS timing is so perfect He knew it was time for Faith to laugh with the dinosaurs.

Jen & CO.

Best Laid Plans

2010-08-02T12:21:00.005-06:00

If we were here:

We wouldn't be able to be here...

And we certainly wouldn't be able to do this...

And this would be out of the question...

Exploring new places....?

Meeting new faces?

Forgetaboutit!

But while the whole situation still rubs us the wrong way..

Least we forget that we still have this..

So we pledge to do less of this...

And a lot more of this...

So it's time to put on our big girl/boy ~~panties~~ hats and see where this new detour takes us.

Thanks for all of your words of encouragement. They mean the world to us.

Promises to update more often,
Jen & CO.

PS: Faith finally turned a corner today. She is now walking (for those of us who know her spunk it's hard to imagine that she wouldn't walk for 9 days) and our diaper quota is back to normal.

2010-07-30T13:55:00.004-06:00

Last week I had written a post I had intended to publish titled, "What we are looking forward to most..." It was not hard to come up with a very long list of what this surgery would mean to our family...and most importantly to Faith.

The number was being able to hear her laugh.

Three years ago we met a family who had a daughter who had been trached. I'll never forget when the mother told me that hearing her daughter laugh after decannulation was her number #1.

"That day will come for you Jen," she encouraged "someday you will hear Faith laugh and it will be the sweetest sound you have ever heard."

Today, we learned that that day will not be Monday, August 2nd.

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. -Matthew 7:7-8

We have asked, sought, and knocked so hard our fists are sore.

And yes, we received.

We received the answer we did not want to hear.

But perhaps the answer isn't "no" just "not now."

Someday there will be a now...but it doesn't take away from the hurt that after getting so close...being able to hear our daughter's laughter remains a "someday..."

:'(

Jen & CO

The Numbers

2010-07-28T13:12:00.006-06:00

2 - Very tired parents who just want one night of uninterrupted sleep.

1 - Night booked for two at Della Terra Mountain Chateau for Monday, July 26th.

177 - Days since Faith's last visit to the children's emergency department

2 - Overnight visits to the er in the last 36 hours, the first being on Monday, July 26th.

5 - The number of days Faith has been lethargic, not wanting to walk or even sit up.

10 - The average amount of diapers changed per hour due to this nasty, nasty stomach bug.

5 - Days until Faith undergoes major surgery to reconstruct her airway.

4-10 - The number of days the docs at childrens have seen this G.I. bug wipe kids out.

24 hours - Faith has to turn a corner before the surgery is canceled (their words, not mine).

1 year - The time we'd have to wait for the opportunity for this surgery again (it is only done in summer and the OR is booked solid for the next month).

2 - Very, very tired and sick parents who just want to catch a break.

Drum roll please...

2010-06-08T20:39:00.000-06:00

We. Have. A. Date.

August 2nd.

Not as early as we had hoped, but after three years of waiting it’s soon enough.

On August 2nd Faith will undergo laryngotracheal reconstruction. We are still unsure of all of the details but found this great website that describes the procedure:

http://www.cincinnatichildrens.org/health/info/ent/procedure/ssltr.htm

Faith will need both an anterior and posterior graft (from rib cartilage). We have been told the recovery for this will take months and to expect about a month being inpatient (now you know why we were hoping for an earlier date- our schools begin in the second week of August). She will be sedated and intubated(in an induced coma) for 7-10 days post surgery.

This surgery will be a big deal.

Not breathing through her neck and being able to vocalize will be an even bigger deal.

The scheduling of this surgery is not without controversy. On one side of the coin some feel she is not yet stable enough to go through such a lengthy surgery and the risk of her getting sick and needing intubation may result in a trach being placed again (and in the doctor’s own words, “undoing all of the work of the surgery”.)

The other side says, why hold back on “what if” scenarios. What a shame to would be if we elected not to do the surgery and she never needed the vent again?

In the end we choose to have FAITH. We choose to give her every possible chance for success that we can.

Yes, she will still need oxygen (that's an entirely different issue) and yes, trying to keep a nasal cannula on a roving toddler will be difficult but her being able to make noise when she cries, laughs, and to be able to learn to speak will be well worth it.

So until then we are going to enjoy every ounce of summer we can. We have no doubt this one is going to be very memorable!

Thanks for checking in!

Jen & CO

PS: As many of you know I am horrible at keeping up with non-work related e-mail. A fellow trach mom e-mailed me a few weeks ago and I accidentally erased it before I was able to respond. If you are that mom I'd love to talk to you more. Please e-mail me at jennifer_reming@dpsk12.org (I have much better luck with that one) :)

Chompin' at the bit

2010-04-28T20:49:00.005-06:00

24 hours after surgery we came home.

About 4 minutes after that Faith proceeded to run around the house defying the doctor's "do not do" orders (you know running, wrestling, exerting oneself etc.)

Fast forward to the present and she is still our wild child who refuses to milk the "I-can-watch-all-of-the-TV-I-want/get-out-of-jail-pass "that goes along with surgery.

I know children have high pain tolerances but coming from someone who has had her tonsils and adenoids out (on separate occasions) I know how much it hurts...and our little girl isn't even batting an eye (and btw the only pain med. she came home with is over the counter Tylenol).

Incredible.

And now onto the question that is on every one's mind...(at least I think it is...)

What's next?

Still no definitive answer as of yet, but we get the sense that there is a big change on the way...

We'll let you know more soon!

Thanks for your prayers and well wishes,

Jen & CO.

Today's the day!

2010-04-26T07:45:00.002-06:00

Remember how bummed we were last month when we had to reschedule Faith's tonsillectomy? Well did this day sure creep up on us or what because today Faith is getting her tonsils and adenoids out. Perhaps more interestingly to note she is also having a bronch which will hopefully begin the discussion on if or when Faith will have reconstructive surgery on her airway.

So big day for us! They want to keep her overnight so our bags are backed and we're ready to go.

Your prayers are greatly appreciated!

Jen & CO.

The Cat's Pajamas

2010-04-22T22:10:00.001-06:00

My daughter wants alligator pajamas.

In an attempt to give our toddler her own sense of independence one of our nightly rituals is having her pick out her pajamas (Note that I am not ready for her to have this type of control over her daytime attire...she's aiming for independence not style, plus I am taking advantage of these years while I can). And every night the dialogue goes something like this...

US: "Faith do you want to wear polka dots or monkeys?"

Faith: (signs) Monkeys.

US: Princesses or monkeys?

Faith: Monkeys.

US: Monkeys or owls?(a sort of control group...you know in case her choice is based on the last word she hears)

Faith: Monkeys.

So monkeys it is and usually is (she has three pairs), until the other the night the conversation went like this...

Me: OK Faith do you want monkeys or stripes?

Faith: Alligators.

Me: Alligators?

Faith: Yes, alligators (not sure what the sign for alligator is but Faith takes two of her hands and snaps them together like an alligator's jaw).

Me: But Faith you don't have any alligator pajamas. How about the monkeys?

Faith: Alligators.

As it turns out this was not the first time she had made such an eccentric request. When I summoned Brian into the situation he said that she had asked for alligator pajamas earlier that day (we're both not sure how she got that point across since neither of us knows the sign for pajamas or alligator).

This prompted my relentless search for alligator adorned pajamas (which has been extremely difficult because apparently manufacturers have the impression that five year old boys are the only interest group of predatorial reptiles.) This also prompted the realization that our little girl has reached a new level of independence. That night marked the first time she "talked" about something without us giving her the words. Up until this point her vocabulary has been one dimensional. She can only say things that we teach her and only says them when prompted. This often causes us to wonder what she thinks about but cannot say. That night she had her own thoughts and opinions and by george monkeys just wouldn't do. Even more impressive, she was able to say it.

So the search for alligator pajamas continues meanwhile we have taken her to the zoo JUST for the alligator exhibit, watched The Princess and the Frog (where I think her fascination with alligators began) numerous times, and replaced any and every familiar song with an alligator(turns out Old MacDonald might have had a farm in Florida...)

And whatever is going on in that little head of hers keeps snapping (yes, pun intended) 'gators and all. :)

Jen & CO.

PS: It's kind of a non-event for us this year but just wanted to get the word out in case I get any "you didn't tell us"comments after the fact-The March of Dimes' March for Babies is this Saturday. If you haven't got anything better to do then walk 6 miles in the rain (yes, rain again!) then come join us. We're meeting at Civic Center Park in Denver at the MOD family tent at 8:45).

I...er I mean.... She Did it!

2010-03-18T08:05:00.002-06:00

To the other places..

2010-03-16T20:56:00.004-06:00

"Out there things can happen and frequently doto people as brainy and footsy as you.And when things start to happen, don't worry, Don't stew. Just go right along. You'll start happening too. "-Dr. Suess (once again from Oh, the Places You'll Go!)

My nerves are shot. The pit in my stomach feels endless.

Tomorrow at 12:05 a yellow school bus with the Jefferson County Public Schools insignia predominately displayed across it’s middle will pull up to our curb. This 13 ton vessel of steel will transport my daughter (and all that goes with her) twelve miles (that’s an hour or bus time) to Fletcher Miller Special School where she will attend her first day of preschool.

And I will be at work. Where I should be. Because if I wasn’t and I had to watch that 13 tons of steel drive away with my daughter- the first time she will be in someone else’s care outside the home (and hospital, of course) the strongest prescription of Xanax wouldn’t suffice. So I will sit at work, watching the clock, counting down every minute until my baby girl begins her first day of school.

And she will enjoy every minute of it.

This might come as a shock with the post that preceded this one, especially when the next few months hold such huge implications for Faith’s future health. Yes, we are running the risk of exposing her to lots of germs- ok it’s not even a risk- there will be lot’s of germs. Yes, she is bound to catch a something. Yes, this could risk her not being able to have the necessary surgeries that could result another year with the trach. But really when it came down to it there was no choice.

Childhood is waiting, and it’s time for Faith to have her fair share.

:) J & CO.

The Waiting Place

2010-03-11T21:17:00.005-07:00

"You will come to a place where the streets are not marked. Some windows are lighted. But mostly they're darked. A Place you could sprain both your elbow and chin! Do you dare to stay out? Do you Do you dare go in? How much can you lose? How much can you win?"-Excerpt from Oh, the Places You'll Go by Dr. Seuss

I have been hesitant to post because I so desperately wanted to write that Faith is back to her healthy, vibrant three-year-old self but that's just not true. She's yet to make a full recovery from RSV and in fact has gotten worse then she was about a week ago. We managed to wean her off the vent at night only to have the docs tell us to out her back on (Ugh). She is most likely fighting a post-secondary infection (like pneumonia). During the day she is happy (when she is not coughing/gagging) but nights have been another story. The constant suctioning and fall out from the steroids (which they want her on for two more weeks!) have meant little sleep in our home.

On another disappointing note we had to reschedule Faith's tonsillectomy/bronch that was set for Monday. This was a step in the direction that would lead to reconstructive surgery, which might not even be a possibility due to her recent time on the ventilator. That's the million dollar question for which I have no answer for. When I was probing our ENT's (the person who will ultimately make that call) nurse she said that this recent bout of illness has definitely set Faith back. When I discussed this a day prior with her pediatrician I received the, "if Faith needs another year with the trach/vent then that's what she needs."

For me it's not about the trach. Heck, we'd much rather have Faith on oxygen with a trach than a nasal cannula. The part that's difficult for me is that it means one more year of silence. Living with a child who cannot make noise is pretty depressing some days. If she could make noise with her trach I'd say leave it in.

Ok now I am getting all dramatic. Nobody has said that the reconstruction is NOT going to happen but some have hinted that it's probably not going to. Ultimately we just need to trust that God is in control and His plans are bigger than ours.

Thanks for checking in!
Jen :)

Phee-wee!

2010-02-19T12:58:00.004-07:00

There are a few things I've learned about the whole hospital/doctor thing lately...

1.) Communication break down is 99.5% of hospital snafus.... this is not anyone's fault, a lot of time people just go off of assumptions. For example when the pulmonologist gave us the news that Faith would most likely need the ventilator for the next few weeks, thus we would need to remain in the hospital for that duration he didn't know that we have a ventilator in our basement, albeit covered with dust, it has sat for the past eight months ready to switch into gear when called.

2.) I've also learned that when a patient perks up and is literally trying to crawl out of the bed it is supposed to be confined to for the next "few weeks" that it's just point blank not going to happen.

So needless to say at rounds yesterday I begged to do this at home. The doc's eyes widened, "YOU HAVE A VENT AT HOME?" And when he gave us the ultimatum if we could get the vent to the hospital that day, and it checked out OK we could leave.

You better believe we moved Heaven and Earth to make that happen (that and my awesome cousin dug it out of our basement and brought it to the hospital).

The result was that WE'RE HOME!!!

While Faith is full of energy (hmmm...'roid rage anybody?) she is still sick. This morning I was questioning our decision to leave when she was working pretty hard to breathe. We also are finding it difficult to keep her on the vent (Thank you Lord for not allowing our child to walk until she was 2 1/2 and not attached to 10 pound-plus machine by a 3 foot cord) so we are allowing her to be off for periods of "freedom" laps. The result is her running around like a banshee while gasping for air. This is when I find myself thinking, "was trying to keep her confined to the hospital bed better than this?"

I guess we'll have to wait and see. But if I have learned one more thing about the whole doctor/hospital thing it's that home is a healing place.

Thanks again for all of the prayers!

Jen & CO.

2010-02-16T10:34:00.001-07:00

Perhaps I was a little premature on that last one. Faith looks worse then yesterday. The pulmonary team just checked her out and said there is not a rush to get her off the vent. The doc. also said that it could be "a couple of weeks."

*Big sigh*

2010-02-16T08:57:00.002-07:00

Faith is doing better since our last post. Yesterday she was able to sit up more and wanted to read books (which is her absolute favorite thing to do when she is feeling well and it was a big indicator how crummy she felt last week when she would shove a book away). Her overall disposition has improved dramatically. Sticking to the original plan we took her off the vent yesterday just to do her nebs and it became apparent that she still really needs the positive pressure. So, she's still on the vent, but perhaps we will trial her off a little today.

That's about it from here.

Will post more soon.

Our Little Valentine

2010-02-14T14:33:00.003-07:00

Usually when Faith is hospitalized she is at her worst during the admit phase. This go around was completely different. Faith was sick when we brought her to the hospital but she really went down hill in the days that followed. For the past three days she has been lethargic and really working to breathe. Nights have been very rough around here. Last night she was on 70 percent oxygen, heart rate in the 180's (and this was when she was "sleeping") with very high respirations. Needless to say she was placed on a ventilator for the first time since last June.

The morning started out rough, but once her settings were adjusted she began "perking up a bit." by this I mean she smiled for the first time since Thursday and will tolerate sitting up for a few minutes. Her color has improved slightly, although she still has an overall dusky tone.

The plan is to keep her comfortable and vented for the next 24 hours and then begin weening.

Thank you for your continued prayer and support.

Jen & CO.

Here we go again!

2010-02-12T22:15:00.002-07:00

Guess what Faith got for her birthday?

RSV!

A thank you note is on it's way to the Chuck E. Cheese in Louisville, CO. Yes, we knew when we took her the oversized rodent's petri dish that we ran the risk of Faith getting sick, but we were willing to take that risk. It was her birthday after all and she deserved to be at the place where, "A kid can be a kid."

And so now our kid sits in the Children's hospital- not the outcome we hoped for. We tried as best as we could to let this run it's course at home but we simply did not have enough oxygen to support her. Wednesday night she was on 8 liters sating in the low 80's. We have home tank at home that goes to 10 liters, but at that rate we'd blow through it in a few hours. So needless to say we are here where there is an endless supply of O2.

While Faith is on antibiotics, steroids, and frequent breathing treatments, there isn't much they can do to treat RSV. At this point it's all about keeping the virus at bay so it doesn't create secondary issues.

Joking aside, it's very easy to use Chuck E. Cheese as our scapegoat and blame this infiltration on taking Faith out but I am not going to do that. Even if she did get sick there (and yes, when she was literally licking the bumble bee machine Brian and I both flinched and said a few "Hail Marys".) we are not going live our life in fear of warding off the next illness. Yes, Faith is fragile, yes she catches things very easy, but if she were given a choice of going and having a ball and knowing it would come with the consequences of spending a week in the hospital she'd say,

"Bring it on!"

Looks like we'll be in for a little while. We'lll update more soon.

Jen & CO.

Heaven's Special Child

2010-02-03T12:45:00.024-07:00

A meeting was held quite far from Earth

"It's time again for another birth,"

Said the angels to the Lord above, "This special child will need much love."

Her progress may seem very slow. Accomplishment she may not show.
And she'll require extra care from the folks she meets way down there....

She may not run or laugh or play. Her thoughts may seem quite far away.

In many ways she won't adapt and she'll be known as handicapped.

So let's be careful where she's sent, we want her life to be content.

Please Lord, find parents who will do a special job for you.

They will now realize right away the leading role they're asked to play.

But with this child sent from above comes stronger faith and richer love.

And soon they'll know the privilege given in caring for this gift from Heaven.

Their precious charge, so meek and mild is Heaven's very special child."
-Author unknown

Happy Birthday to our precious Faith.

Love Speaks

2010-01-01T13:25:00.008-07:00

Happy New Year everyone! We hope you all had a wonderful Christmas.

There is an old song by The Nitty Gritty Dirt Band we Coloradans like to sing as our anthem this time of year. The chorus goes, "The closest thing the heaven on this planet anywhere is a quiet Christmas morning in the Colorado snow." And that exactly sums up our holiday. It was very calm, quiet and relaxing. Other then spending the first night at the hospital (pneumonia, of course) I can't even remember what we've done this past week, and that my friends, is a very very good thing.

And because life is too short not to watch little tikes waking up on Christmas morning....

Make an on-line slideshow at www.OneTrueMedia.com

If you would like to see more pics, click here

Now it's time for me to get all sappy and reflective (I'm due for one of those posts, don't you think?)

I digress...

If I had to pick THE highlight of Faith's year it wouldn't include her walking, or staying out of the hospital long-term. However monumental those accomplishments may be, her biggest victory was finding her voice. No, not audibly of course, she's still as silent as Ariel (The Little Mermaid), but she (or perhaps, once again it was US) has learned that the capacity of communication reaches beyond our expected norms.

This sounds like a give-in, but at this time last year it was something we were very concerned about. From the time we knew Faith would not be able to verbally communicate we began teaching her sign. Week after week we practiced the simplest signs with her. Many therapists shook their heads in frustration when at two years old, Faith was not taking to any signs. Thus began an evaluation at Children's where she was diagnosed with extreme communication delays. They recommended her for augmentative therapy, and ordered a communication device. We began talking her to Children's for the therapy (this was on top of her receiving speech therapy and occupational therapy, each twice a week).

Faith's inability to communicate was very frustrating for her. She was at the age where she wanted to tell us things but did not have any means to do so. The result was a lot of head banging and a lot of tantrums.

It wasn't until the following summer we learned that Faith was talking, we just didn't understand her language.

When Faith was hospitalized last June, we noticed that she was rubbing her face frequently. Did she have a rash? Was her teeth bothering her? We soon realized that when she did it she was happy. Then we discovered a pattern...every time Brian or myself would enter the room, she'd rub her face. Then it occurred to us- she's trying to say mommy and daddy! The actual sign for "mom" is signed at the chin, and dad is at the forehead. While she used the same motion for "dad" and "mom" we were just thrilled that she was talking.

A few weeks later we were reading, "Guess How Much I Love You." I told her how I loved her, and asked her if she could say "I love you." Her response was patting her chin like she does when she signs, "mommy." I took the gesture for what it was, and decided that one day I would hear those precious words, "I love you" from my daughter.

Yes, I was too thick headed to realize that she had been saying them long before I understood them. You see, every time we would tell Faith that we loved her, she would sign "dad" and "mom." Finally we realized that for Faith, the words "I love you" are synonymous with our names. Mommy and daddy are love. I don't think there is a spoken word in the English language that could have meant more to me then knowing what my daughter's interpretation of love was.

I no longer long for the day when I will those three words from Faith lips, because she tells me with her heart and that speaks volumes.

Seven months later Faith knows about twenty signs and uses about five of them on a day to day basis. While they are far from ASL, she has created her own language and uses it as a means to communicate. The use of her communication device has been slow, but that's more on our part than hers. The fact is, she is talking. And even more importantly, we are finally listening.

Jen & CO.

2009-12-25T15:25:00.002-07:00

Hope you are all having a very merry Christmas.

Us. :)

Dear Santa, waiting to see if we made the list...

2009-12-17T14:26:00.007-07:00

Would you believe me if I told you....

That they did this all on their own? Well, it's true. :)

If you haven't heard from us in a while it's because "all is calm, all is bright."

We've had a very uneventful transition into winter- just the way we like it. Last July Faith was put on a prophylactic antibiotic. This is what's kept her out of the hospital. Just when it looks like she is going to get really sick, she recovers. It's amazing! She even was exposed to the swine flu a few months ago, and other then coughing blood for a few weeks came out unscathed. In addition to the antibiotic, she is on an inhaled steroid which is also boosting her immune system.

As I posted last summer, this winter has huge implications for what this next year holds. If she has a "decent" cold/flu season she will be a candidate for re-constructive airway surgery this summer and if successful would mean decannulation.

Brian and I are looking forward to a two week break from teaching. We love what we do, but it will be nice to just hang out with our girl (btw, Brian's school was on the front page of the Denver Post today, neat little story here).

For those of you who have not done so already, you can sign up to receive e-mail alerts when the blog is updated. I always feel bad when people tell me they check the blog so frequently and I have not updated in a while. I will be sure to update more in the coming weeks...it's a much more manageable task when I am not working.

Hope you are all enjoying the Holidays!

Jen & CO.

2009-11-08T13:12:00.002-07:00

I know I am a week late and a dollar short on posting Halloween pictures, but better late then never, eh?

We had a great Halloween night. We actually took Faith Trick-or-Treating! Always the social butterfly she enjoyed herself (and we enjoyed eating all of her candy!) ;P

Unlike the past two years, I had no agenda for what I wanted Faith to be for Halloween. We didn't have to think too hard about what Faith would want to be if she could speak for herself. In fact, sometime we think she things she is already one!

So without further ado may I present to you our third canine companion..

Ok, I know she looks more like Max from Where the Wild Things Are, finding a puppy costume was a little tricky this year (that and she had already outgrew one I purchased for her a month ago...)

Hitting the streets w/Grandma by her side (and yes, all of that snow melted the very next day...something you'd only understand if you lived here).

Hmmm..perhaps this is why our approach to Faith's feeding therapy isn't panning out.
Faith's favorite part of the evening was greeting the trick-or-treaters who came to our door. Every time the doorbell rang she would run to the door (little did I know learning all about Pavlov in college would apply in such a circumstance).

These aren't the best pictures but they do capture her adoration for her "brothers"- I just couldn't resist.
Hope you all let your LIGHT shine this Halloween!

Jen & CO.

A Not-So-Spooky Tale

2009-10-30T19:58:00.004-06:00

'Twas the day before Halloween when all through the Reming abode
Not a machine was alarming, not even the heater set on invasive mode.

The g-tube extensions were hung to dry by the sink.

due to our little girl who will still not take a drink.

No one was nestled all snug in their beds,
for life with a toddler brings an early wake up call instead.

When out on the lawn there arose a clatter
As Faith sprang from her chair her tube feed went splatter

Away to the sliding glass door we flew like a bird
We opened the blinds and saw something truly absurd.

When what to our wondering eyes should appear,
but two feet of snow, alas, Faith’s final frontier.

With a little toddler at our feet, so lively and quick
We knew that her first time in the snow would be a kick.
More rapid than doctors running to a code,
We knew that our girl was ready to hit the road.

“On Elway! On Buffalo, let’s go,

it’s only October and I've never seen so much snow!

As we stepped outside we thought she'd want to flee

but to our surprise, her face lit up with glee.
We had not a sleigh in sight, but the laundry basket would do,
We pushed on the boons, and her oxygen tank too.

She spoke not a word, but we knew what her smile meant,
We knew if she said "no", she’d surely relent.
With her fists in the air she signed, “C’mon, let’s Go!”
So her daddy pulled her through the mounds of snow.

Her mommy stood there documenting everything in sight
For Faith’s first experience in the snow was a pure delight.

Oh what a day, oh what heaven!
How far she’s come from room 827
For this is what boots and jackets are for,
Not collecting dust as a child lives on a hospital floor.

While the pumpkins may have gone rotten on the front porch due to ice,

This year's Halloween has turned out really quite nice.

For in life we have learned to take each day with stride,

even if there is snow, hop in and enjoy the ride.

So whether this year brings you ghouls, goblins or a vampire bite....

Happy Halloween to all and to all a good night.

2009-10-26T21:08:00.000-06:00

October just wouldn't be complete without a trip to the pumpkin patch, nor would our blog be without the traumatic pictures to show for it.

Enjoy.

Still traumatized from last year's "mom-forcing-me-to-sit-on-a-pumpkin" debacle, Faith was not going to make that mistake another year.

Oh thank you for saving me daddy, you are always the voice of reason in this relationship.

The highlight of it all, of course was the petting zoo. Faith lights up whenever she sees a furry friend. She is completely trusting, and laughed when the animals gave her some nibbles.

da-na. da-na, da-na-na-na, da-na-na-na. Faith's proximity to animals should come complete with an alarm playing music from Jaws- a warning that the animal torturer is near.

"Hmmm...you know they make g-tubes so you don't have to deal with that sort of thing Mr. Cow"

I could probably come up with some cheesy "seeing eye-to-eye" pun for this one, but I'll spare you the cheese.

Yes, we let our 2 year old daughter stick her hand in a horse's mouth (no, there was nothing to feed them, just fingers) And they say we have a hard time "letting go."

And yes, as we made plans for the patch that morning I had a fluttering of hope that I could finally get the "perfect" hay bail picture we failed to capture last year.... Yes, perhaps without lugging a ventilator around (I still cannot believe we did that) this would be the year we'd capture our little pumpkin sitting poised perfectly on top a hay bail.....

Turns out, the ventilator had nothin' to do with it.

Sera, sera.

2009-10-15T13:36:00.015-06:00

October takes the cake (or should I say, pumpkin pie) for being is busiest month of this year. In the past few weeks we've battled H1N1, job loss (and then job-gain), car woes, and multiple weddings. The latter of course, being the highlight of it all.

This past weekend my brother Josh married his beautiful bride, Noel.
This was Faith's first wedding and will surely be her last (well, OK not for a long time.) Simply put, toddlers and weddings do not mix. With the help of Brian's sister Kristen, and my cousin Margie, who helped out tremendously by corralling Faith (carrying an oxygen tank and chasing a toddler in heels is no easy feat), we had a lot of fun.

Per usual with these type of events I got home realizing I did not take enough pictures (especially of the actual wedding) but here are some snip-its from the evening:

The happy couple.

Dancing queen. All Faith wanted to do was dance- even into the late hours of the evening when her droopy eyelids were giving way, whenever we stopped dancing she'd point to the floor demanding more.

Run Faith, run!

MMm'mmm...who needs wedding cake when you can have frigid glass?

And speaking of weddings, five years ago today, Faith's daddy and I pledged to love each other through "sickness and in health" on a blistery October day. Never in a million years would I have imagined facing such adversity with my husband. Never in a billion years could I have chosen a more perfect partner to walk down this path with. Today I was strolling down memory lane and came across a song we had played at our wedding. At the time, we thought we'd already been through a lot, little did we know how prophetic these words would be.

Luv ya hun!

2009-09-23T12:23:00.001-06:00

I was gently reminded by a friend that it is now officially fall and it is not prudent to have a picture of your child in a swimming pool under such circumstances. (what if we lived in Florida?)

I took that as a hint that it is time to update the blog. Fall has brought a time of transition for us. Both Brian and I are teaching at new schools which has been an adjustment in of itself.

Faith is doing tremendously well. However cliche it may be, she has exceeded all of our expectations. The girl who showed no understanding or connections to words six months ago is now continually adding to her repertoire of about 15 signs. She now knows words carry meaning and can follow simple directions such as, "Go give Elway a hug" (which is her favorite).

The girl who would make eye contact or acknowledge people in a room is now a social butterfly who demands the attention of anyone who steps inside our home.

The girl who we took home from the hospital who clinched her fists and whose high toned body became rigid at any source of external stimuli, recently put her hands in a tub of butter while we were cooking and rubbed it all over her body.

The girl who was not crawling at this time last year is now walking up a storm, falling down stairs, and forcing her parents to put up all of the unused baby gates (remind me every time we put one up and it chips the paint on the walls that the need for such a barrier is worth far more than the drywall.)

And the girl who did not breathe on her own for her first two years of life has not been hooked to a ventilator since June.

I have stopped diagnosing her. I've stopped marking time in terms of milestones unmet and I am simply enjoying my daughter. Perhaps it was not Faith who needed to make gains, but me. Once I finally accepted who for who she is and all that she is going to be, she proved me wrong on both accords.

Thanks for keeping up with us.

Hope your fall is as warm and cozy as ours.

Jen & CO.

2009-08-26T14:35:00.001-06:00

"Hey Mom! Summer ain't over 'til the trached lady swims!"

Playing Catch Up....

2009-08-21T16:30:00.002-06:00

Something happened. I don't know how, but it did. I might have involved a burger or two or maybe even a few watermelons thrown in, but somewhere somehow summer came and went.

Maybe it's because I worked while Brian worked on the house, or maybe it's because Faith was just as sick as she was during respiratory season but summer seemed to have flown by. Now that school is back in full swing it's time to put away the swimming pool (wait? did we even get it out? Oh no, I think the bathing suit we bought Faith last Spring hangs in the closet, tags still attached
-bad mom moment inserted her-) and get back to the grindstone.

Dramatics aside, it hasn't been all work and sickness and we have the pictures to prove it.

I know you were just inundated with pictures and videos, but I can't help but show you these "keepers." Please excuse the randomness of them all- just consider it a "catch" up from where we left off.

Four generations: This is a "once in a lifetime" (or perhaps in anyone's lifetime) photograph. Brian's mother and his grandmother came out for a visit a few weeks ago. Faith loved meeting her great-grandma from Buffalo (and playing with her other grandma!)

********************************************

Some of you have may noticed that Faith's hair has some...er..."special needs." Each quadrant seems to have it's own personality. Coupled with her ongoing thyroid issues and 2 year old hair pulling, she is bald in some spots and Alfalfa in the other. Because her hair has taken so long to grow we've been hesitant to cut it. Over the past few weeks multiple people have commented on how getting one's hair cut actually spurs growth (OK we got the hint). So last Friday we knew it was time. So we headed out to an over-priced, kid friendly hair cutting place to do the deed in hopes that we could channel Faith's inner Shirley Temple.

"I don't think I like the looks of those shiny things..."

"No...no definitely don't like them!"

********************************************************************

I am privileged to be a part of group of local families who have kid's with trachs. We get together every month or so to ~~complain~~ er...talk about what it's like to raise a neck breather. But we also just get together and have fun. This weekend we traveled to Colorado Springs (which is about an hour and a half from us- the longest Faith's ever traveled)to visit the Zoo. We've taken Faith to the Denver zoo before which was pretty useless- she couldn't really see the animals anyway, and seemed more interested in the people who were gaping at her like she was an attraction.

Needless to say our expectations were pretty low when we set out for the Cheyenne Mountain Zoo- to our delight it turned out to be a wonderful experience. Faith really got to get up close and personal with the animals, which was such a hoot!

Faith showed no fear while she fed the giraffes. This was right up her alley as feeding the dogs at home is one of her favorite pastimes. She thought the whole thing was hysterical.

The giraffe's weren't the only zoo inhabitants to enjoy a snack...

"Hey, did you get to do Kangaroo care too?"

"Hey Milo-I can't put my finger on it, but there's something different about you..did you get a new hair cut too?" Many of you already know of Faith's buddy Milo- who was her neighbor across the hall at Children's. Milo spent over a year in the hospital, and went home just weeks before Faith. We were first introduced to him as a nurse from the PICU pointed to him and said, "he's a ticking time bomb, it's only a matter of time before he dies." Two years later Milo is a vivacious toddler who has beaten incredible odds (and just had his trach taken out a few weeks ago!) If you were to tell us two years ago that one day we'd be taking our kids to the zoo together, I'd think you were nuts!

And here we are- the Mile High Tracheosto-mommies (and a few daddies too). Less then half our group could make it this one, and I am so glad we did because it was a blast. L-R: Marissa and her family, Milo and and his mommy, and us. :)

And last but not least, all of this was made possible by the men and women who saved our daughter's life two and half years ago....

"Ok Mom- get over it already! It was like soooo two years ago!"

Sorry Faith, but we will never get over the gratefulness we have to the nurses, RT's and doctors from the place you spent your first six months of life- St. Joesph's hospital. We got to share our gratitude at this year's NICU reunion. (And boy was it neat to see Faith walking those halls!)

***************************************************

I want to thank everyone for sharing the joy of Faith's first steps with us. I have no doubt in my mind that Faith is where she is today because of the multitudes of people who have prayed for her and supported us on this journey. We often talk about how Faith's is full of love- so full it could only come from the number of people who have poured their hearts into her.

Well, it's time to go salvage any part of summer we can. Thanks for checking in, even amidst our long periods of negligence.

Jen & CO.

2009-07-23T13:05:00.006-06:00

To make you smile.......

(psssssst...there's a surprise at the end!)

Make video montages at www.OneTrueMedia.com

2009-07-08T22:07:00.002-06:00

The past thirty minutes have looked like this: word, word, sentence. Backspace, backspace, backspace. Word, word, backspace backspace.

I have came to the conclusion that sometimes there are no words, only tears.

Our very first nephew was born this week, hours later he was called home and healed in heaven. I am not sure if Brian's brother and wife would be comfortable with us sharing this news with you, but I know there are people who read this blog who have a special place in their hearts for little angles who get their wings all too soon, and I know how prayer (and connection) can heal the deepest of hurts.

Please pray for Brian's family, who have endured more hardships in the past few years than anyone should ever have to face.

J

Complicated.

2009-07-02T14:30:00.000-06:00

I wrote this post a few days before Faith's last hospitalization and forgot to post it. I wasn't going to publish it because it's a moot point now, (also re-reading it just now, it appears I was writing about everything but a point) but I figure it will buy me a few days until I need to post again...so here ya go...

This past weekend I said goodbye to a colleague of mine who is moving out of the country. Throughout the past four years working with my friend her mantra was, "keep it simple."

When I stressed about Kindergarten graduation ceremonies or not-so-pleasant interactions with administration she would scold me, "Jennifer! Keep it simple!"

My tendency to over-complicate things is genetic. My mom loves telling a story of a time where she overlooked the simple.

As a single parent with three children, she had reason to perceive things as complicated because they were. In one such an instance she drove around for a year + with a garbage bag covering the broken sunroof in her car.

"We don't have the money to fix it" she'd say empathetically as she carted us off to gymnastics, soccer practice, etc., as we tried not to be bothered by the sleet/snow that impaled us as she frantically drove about the city of Boulder.

I am not sure what lead to this revelation, but one day she picked up the phone and called the manufacturer of the sunroof. Turns out it was under warranty and a new sun-roof was at our door in no time.

Still, we continued to drive around braving the elements "I can't put that thing in!!!" She complained as months of manic driving went by before she ever attempted to put it in. Turns out when she finally did make an attempt to put the new sunroof in, it popped in with ease. "The story of my life" my mom remarked "making everything more difficult than it needs to be."

Thus was the case with Faith's sleeping arrangement. For the past year we've taken turns sleeping next to Faith's "bed" which consists of two mattresses on the floor. Since she was "crib-a-phobic" it was the only other alternative we saw. When people suggested we get her a toddler bed I envisioned our child dangling from the sides of the bed after an unfortunate ventilator bungee jumping attempt.

A few weeks ago (and many back aches later) we decided that perhaps it was time to seek a new alternative. A few clicks on craigslist and Faith was sleeping in a white wooden Pottery Barn bed (which retails for $250) for $60. Not bad. Even better, we were able to put the mattress we sleep on on a box spring- the result? Pure heaven. I had no idea how uncomfortable the mattress on the floor was compared to it being supported by a box spring. While the great Craigslist steal might not have been there, the option to raise the beds up a few feet and prevent many nights of discomfort were. Once again, over complication as it's best.

In a more significant turn of events, our life with Faith just got a little more complicated in a very uncomplicated way. You might recall a few months ago Faith had a bronch and it was determined that Faith's airway is extremely damaged and the only way she will ever be able to live trach-free is with reconstructive surgery.

At the time the only obstacle in our way was the ventilator. "Get her off the vent, and we'll talk about our next step." our Ear Nose and Throat doctor from Children's told us.

Telling this to parents who have lived a child with a hole in their neck and you can bet your bottom dollar that vent is flying out the window before you can say decannulation (yeah, the binky thing didn't last too long) But all the while we were terribly afraid that Faith would get really sick again and need ventilation. Ventilation without a trach = bad news for a reconstructed airway.

So we were prepared to duke it out with the ENT last week. We were going to put our foot down. No way Jose, Faith needs her trach...at least for one more year. Before we could open our mouths to argue, the doc said it for us,"nobody in their right mind would ever do this surgery on a child as fragile as Faith."

And then we heard what we have from day one, "she needs more time." No, not time to grow (the damage is done, growth cannot help her airway) but time without being sick. Three visits to the PICU this past winter put her out of the running. "Let's see how her winter goes this year, and we'll reevaluate next Summer."

Shocked, and relieved that we didn't have to argue our point (once again complicating things that weren't even complicated) our eyes pleaded for a little elaboration (something ENT's are not big on) and he added, "and if she has another bad winter, it'll be a couple more years until we talk about decannulation." He even went as far to recommend us to another ENT who's expertise is in patients with more "complicated (his words, not mine) airways."

This didn't affect us the way it should have. We knew it was coming, and we know it's what Faith needs. In the grand scheme of things a few more years with a trach is a drop in the bucket. We were thrilled we didn't have to fight- heck, we didn't even have to open our mouths.

Driving away I couldn't help but think of how the trach does complicate things, ironically things that should not be complicated. For a few minutes last March, when I heard the word "decannulation" I couldn't help but think of how uncomplicated life would be without a trach; to be able to bathe my child without worrying about dumping water into her lungs- or even better- to take her to the swimming pool, or to get up and go without worrying about emergency trach supplies and suction machines, letting her "tough it out" when she has a cold and avoiding hours upon hours of suctioning, having the option of choosing childcare, and to be able to hear her voice- all things we will never be able to experience until that little white tube comes out of her neck.

I am self-assured enough to know that having a child with a trach is not my identity but it has become a complication of an already overcomplicated life. I may not always be able to "keep it simple" and I, like my mother, may not be able to always be able to see the solution right in front of me, but with two years of experience under our belts and another few to go, you can be sure that with each day that goes by we're getting a little further off the floor. :)

Jen & CO.

"The Joy of the Lord is your Strength" Nehemiah 8-9

2009-06-24T21:31:00.013-06:00

If there's one thing I know for sure about our daughter, it's that she's undeniably, irrevocably, positively......

Full

of

Joy

People have always commented on what a happy kid Faith is. We usually follow this up with a snide remark like, "yeah well you should see how happy she is at 2am." But truth be told, she is truly one bright and cheery girl. It doesn't take much to get her to flash her trademark wide-mouthed grin. This smile can rouse the most sleep-deprived of zombies and remind us how worthwhile this all is.

May your world be filled JOY this week and always,

Jen & CO

2009-06-19T21:54:00.002-06:00

Just a quick update to say that little Faithers is home and doing "well." She's still breathing pretty heavy, but nothing we can't manage from home.

Thanks for all of the prayers and well wishes.

Have a great weekend!
Jen & CO.

No, we haven't fallen off of the face of the Earth (yet)

2009-06-16T04:11:00.001-06:00

On a typical day if you haven't heard from us in a while you can assume that no news is good news. Then again, we are far from the typical family and so this post warrants some bad news.

Faith is in the hospital (AGAIN). Ugh. This time with para-flu. I suppose this how the flu can seriously affect the elderly, young and medically fragile. That's Faith (well, except the elderly part of course).

About a week ago Faith had a high fever (which is very unusual for her), high heart rate, increased O2 requirement, yellow/bloody secretions (and lot's of 'em), but she wasn't "working" to breathe.

On a weekend trip to the ED, the culture showed up as para-flu. We were warned that the respiratory part was coming- and were given the option to stay (to this of course we said, NO WAY!) and took our sick little puppy home and hoped for the best. Sure enough, 24 hours later the respiratory part of this virus came. We actually brought Faith in without her vent (even though she was reeeeeeally working to breathe), but after a cap-gas showed very high levels of CO2 she became vent dependent once more.

So that's where we are today. She looks terrible and I am sure she feels even worse. Faith just needs some hospital tlc, and will most likely be out in few days (knock on wood).

Sorry for the lack of updating, prior to this we've been crazy busy with numerous appointments, crazy work schedules and that little thing called life. It was only a matter of time before it took a hospitalization to slow us all down.

Thanks for checking in,
Jen & CO.

A step in another direction

2009-05-25T15:10:00.002-06:00

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!)

All is well

2009-05-17T13:15:00.002-06:00

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.

On the mend

2009-05-12T08:03:00.007-06:00

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 Rhinovirus...no 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

Mother's Day

2009-05-10T19:35:00.003-06:00

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!

Jen

Mayday

2009-05-09T16:53:00.003-06:00

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.

If Newton only knew...

2009-05-03T19:50:00.003-06:00

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

Make an on-line slide show at www.OneTrueMedia.com

could mean so much!

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

In our shoes

2009-05-01T13:14:00.002-06:00

"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 bodies...so 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.

Wordlessy Wednesday

2009-04-22T21:14:00.003-06:00

Today I realized that I need to write a post because the only thing worse than staring at a cute, healthy baby posing for the MOD, is two of them side by side. :P

So I thought I'd take this time for some house keeping:

Unintentionally, my “letters to Faith” have fallen by the wayside. Honestly, I am too exhausted for deep thinking at this point, but perhpas some day I will resume writing them again.

Speaking of exhaustion, we have yet to receive Faith’s sleep study results from March and, get this- will have to wait until June for the follow up appointment. *Ahem* Perhaps I was a little too quick in complimenting THE SLEEP TEAM. After many phone calls that got us nowhere, it was determined that there aren’t any results because Faith did not sleep enough to gain any pertinent information. No, really?

It was never really about the sleep study, so I am not bothered by the non-results. We have another (yeah, that’s right) sleep study in a few weeks. This one I am actually interested in, because they are going to see how Faith does off of the vent. Sometime I fear that we are pushing her too hard, and am curious to know what’s *really* going on when she is sleeping off of the vent (during the last SS she was on the vent for the entire night). On a whole, when Faith sleeps without the vent, she sleeps better. This is not always the case, and our problem now is getting her to go to bed (which could be a typical toddler thing, but the three hours of head banging lead me to believe otherwise).

On another note, tomorrow Faith beings her augmentative speech therapy. A few months ago she was evaluated for her communication delays and it was recommended that she receive an augmentative communication device. I think the therapy is more for me to learn how to use it than her, but nevertheless I am eager to give Faith a way to communicate.

It’s also eye-exam day. Once upon a time, those two words would send me racing for the Xanax, but now it’s just another check I want to effortlessly mark off my to do list. I have had some thoughts on the eyes lately, and will share them when I have more time to write (and think).

Well there you have it kids, a smorgasbord of an update, but I think I have succeeded in pushing chubby cheeks down the blog line.

Have a wonderful Wednesday!
Jen & CO.

Soapbox

2009-04-17T20:20:00.001-06:00

Whenever the March of Dimes releases their yearly ~~propaganda~~ ad campaign, I'm always a little perturbed by it. This year's banner brought a similar response. I know that nobody wants to look at a picture of a sick baby, but does the smiling, chubby-cheeked tot in this picture accurately portray the face of prematurity?

Please tell me there is a g-tube hidden underneath his shirt!!!! But then I thought about it a little more and realized that the baby in this picture is exactly WHY we walk. Because ALL babies deserve to look so healthy.

March for Babies is just one week away. If you happen to be in the Denver area April 25, come walk 6 miles (I promise it's not as hard as it sounds) with us. This will be our third walk, and this year will be better than ever because Faith will be in attendance.

You may have noticed the MOD fundraiser widget on the sidebar. Thank you to those of you who have generously donated to this cause. The March of Dimes has helped multitudes of babies from the most critical to those who are fortunate to have been born healthy and full term.

Among it's many contributions, the MOD funded the development of surfactant therapy, which is given to extremely premature infants to help lung development. Faith received several courses of surfactant therapy, which no doubt saved her life. Because of advances such as this, babies who would have no chance of survival a decade ago are surving and thriving! Just think what the possibilities are in the decades to come!

And when things don't go as planned, the March of Dimes is there to help families pick up the pieces. They host numerous parent support groups in hospitals across the countries for parents like us, who traded our nurseries for NICUS.

In addition to swollen feet, achy calves, and if last year was any indication- hypothermia, (I'm not helping the cause, am I?) the walk makes you feel as though you are a part of something bigger than yourself.

Here are some pics the past two walks:

It should be a lot of fun! Drop me an e-mail (jen22at@hotmail.com), text, line- whatever, if you plan on coming.

Hope to see you there,
Jen & CO.

PS: And it the weather is anything like the first year, I just might (still debating) torture my sweet, little angel once more by adorning her in the perfect, "Fighting for Faith" mascot get-up...but then again, I do actually want to make it to the finish line without the authorities taking me in for child abuse, so we'll see. :)

Funny Bunny

2009-04-13T20:51:00.023-06:00

Warning: This post contains indulgent, "mommy-blogging" material, that unless you are related or enjoy looking at your Aunt June's slide shows from Mount Rushmore, will bore to you smithereens. Since our daughter only wears a dress a few times a year, we cannot help but post, what is basically the same picture over and over again: Happy Easter Everyone!

Who needs a bomb sniffing dog, when you can have a trach sniffing canine? We always know when Faith is coming down with something because Elway is very interested in her neck.

I am sure you can all relate to being fed up with the over-commercialization of holidays, especially Easter. Every year I am continually shocked as I walk down the "Easter Aisles" (Yes, they are now plural) and see everything from Hannah Monatana plastic eggs to Easter-themed I-Pods (Ok that last one was a stretch, but you get my point). Whatever happened to a few hard boil eggs and a chocolate covered bunny? Always the hypocrite, I broke down and did indulge a little...but hey when your child doesn't eat Easter candy, what alternatives do you have? As you can see, Faith is always very cautious of anything that comes from "the outside." Hey, maybe we could use a bomb-sniffing dog!

As you saw in the previous post, Faith is enamoured with windows as of late. For a child who can only see about 4 feet in front of her (and that's only when she is wearing her glasses, without them, her field of vision is significantly less) this picture just warms my heart. She is becoming increasingly more aware that there is a world beyond our living room.

Our girl is also really into cars! This is so random, for we are not "car people," nor have ever really had toy cars in our house until the Easter Bunny so knowingly dropped them off. We discovered her newly found passion for the automobile when she was ruffling through the Sunday paper and enthusiastically stopped at the car ad section. Ever since, there has been no turning back. Cars are just her "thang," (that and Spongebob, which is another totally random, far from age-appropriate fascination of hers..)

We have to post pictures of ourselves every six weeks or so, so people don't think that we've officially fallen off the deep end. See? Our daughter is really not being raised by a pack of untamed dogs! (I like that picture of her w/her daddy because she is wearing her glasses- something that is a rarity these days!)

We did venture out on Easter and took Faith to church for the first time. As it would be with any two year old, it was an ordeal. Why we were thinking she could sit through the service, I don't know, but we broke down and "took" her to children's church where she immediately found the nearest window, and continually banged her head against it. I couldn't help but laugh when the other children, gave her a look like, "What the heck is your deal?"

Of course, the adults were just the same.

The whole experience inspired me to create a shirt for Faith that says, "Yes, I breathe out of my neck, now get over it."

Nevertheless we did it, and we will do it again

Because that's just how we roll. :)

Hope you had a wonderful Resurrection Day

Jen & CO.

PS: Now that Faith has officially been home a year, it's time for me to stop defining everything in these terms, but this was Faith's first Easter at home. In fact, this will be the last holiday (minus New Years, which doesn't count) where the previous year's memory wasn't in a hospital. This is only language that someone who has spent significant time in the hospital would understand, but also something I know you can all appreciate!

Home.

2009-04-09T06:00:00.000-06:00

Today is a special day.

One year ago today, Faith came home.

And stayed.

They tell me that a more significant day is when a long-term hospitalized child is home for more days than days spent in the hospital.

June 5th, 2009.

Faith's day.

Until then, we will celebrate today, and everyday in between, that as cliche as it sounds, have been a gift.

Attached.

2009-04-03T12:18:00.009-06:00

In preparation for Faith's sleep study, a few friends reminded me to bring an object of comfort that Faith is attached to. The scheduler on the phone said the same thing; bring a favorite doll, blanky, stuffed animal etc. When they said this, I realized that Faith does not have an attachment object, quite frankly she could take or leave just about anything (except for those syringes, of course). She did have a brief stint with a pacifier (in which we ritually referred to it as her "binky") but oral aversion quickly gave way to any hopes of Mr. Binky living on.

Having an "attachment" object is a rite of passage for most kiddos. I bet there are many of you who can pinpoint what your object was, and the exact taste, smell and texture of that special belonging. Faith has had a far from normal "babyhood" so it is no surprise that she has skipped over this facet of childhood.

This week I realized that it's me, not Faith who has the attachment object. It's something that stirs up a plethora of emotions, that no doubt ten...twenty years from now, the very mention of the word will send me into reminiscent PTSD. This object has quite literally been the breath and being of my child for the past 2 years. Without it, life would stop.

I am talking about the ventilator;

When Faith arrived via c-section, she was resuscitated. It's quite odd to think of a baby born that way....like a revived stillbirth. Her life lay in the hands of a metal tube inserted down her throat, which provided forceful air to her already fragile, underdeveloped lungs. The force of the oscillating ventilator made her vibrate like a lab rat (and she looked the part, too).

I vividly remember on Faith's second day of life, a Neonatologist warned us that every day spent on the vent, meant more difficult days ahead. He cited research that showed the correlation between days spent on ventilators and outcomes later in life.

At the time that statement did not bother me because surely our child would not be one those cited in someone's research paper. No, Faith was going to get off of that ventilator and prove everyone wrong.

And then she did.

And then she didn't.

Those of you who have been following us since our NICU days, can probably recall the on and off again ventilator drama. Faith would extubate, struggle on nasal CPAP for a few hours...sometimes making it a few days, only to totally crash, need CPR and then was placed back on the vent. Each time this happened our love/hate relationship with the ventilator intensified.

When she crashed and was placed back on, the machine was our saving grace. When Faith was being revived, there were times when we would step out of the room, thinking that this was it, she was not coming back. Words cannot express how grateful we were to see the metal machine wheeled into her room and once again pump life into her body. I remember telling one of her nurses how much I loved the vent, when she warned me not to get too attached, "This is still the enemy Jen, always remember that."

And I did. Because a few days later...sometimes weeks, when I saw all of the other babies that were born around Faith's gestation on nasal cannulas, or nothing at all (or even home,) the vent became the enemy, once again.

The ventilator stood between life and death for Faith. Walking this thin line was completely exhausting, not to mention what the constant extubation/intubations was doing to her airway. The ventilator was keeping her alive, but it was also damaging her airway and lungs. The trach was a huge blessing and allowed Faith to receive breathing assistance without the harm of an ET tube.

After our failed attempt to bring Faith home, when we arrived at Children's and learned that our daughter had another, underlying condition (bronchial malacia) and would be living on a ventilator for the next two years, we were devastated. Life as we knew it was over. People don't live on ventilators. Vegetables do.

Little did we know that the machine that saved her life from the day she was born, also brought her to life. When Faith had constant, steady support, she thrived. She smiled for the first time when she was seven months old. SEVEN. MONTHS. I have a friend whose baby is less than seven weeks old and grins from ear to ear. When I finally saw that long-awaited for smile, I was reassured that everything would be OK.

And it was. Faith took off. She started growing, developing, and being the baby she so deserved to be. All because of a machine that let her breathe.

A few weeks ago, after a discussion with Faith's pulmonary doc. we decided it was time to start weaning Faith off the vent, for good. She's been off of it during much of the day, and no longer turns blue when she is on it and disconnects.

I have been looking forward to this day for many, many months. I can't tell you how many times (usually at 2am), a circuit goes haywire and the non-stop beep of the ventilator pushes us over the edge.

So why is it so hard for me to give it up? Because the ventilator is my Binky. Through thick and through thin that noisy, annoying machine has been my reassurance. It has caused more gray hairs than anyone my age should have, and yet I am struggling to let go.

A read an article in Parents magazine last week about how one family had a mock-funeral for their child's Binky when it was time to give it up. They dug a hole in the backyard and bid their farewells. Unbeknownst to the child, the parents also snuck some flowering seeds so when it came time to bloom, the flowers would serve as a reminder that when you give something up, something always (and usually better) takes it's place.

Something tells me that our medical supply/equipment company would not be happy if they learned that their thousands-plus dollar machine lay six feet under in our backyard. Then again, perhaps that would be the perfect payback. :)

Parenting is all about letting go. Too bad "What To Expect When You Are Expecting" didn't have a chapter on how to let go of your child's life support machine. Perhaps that's what we are doing, writing- no closing, another chapter in this rather unorthodox book of ours.

Thank you for continuing to read from it,
Jen, Brian & Faith

PS: I was hesitant to write this post because I have many friends who have children who live on ventilators and would give their right arms to break them free of it. How annoying it must be to read someone complaining about losing a ventilator. I realize how fortunate we are, an unexpected blessing, nonetheless. No child nor family should ever have to be subjected to living on a ventilator. I've said this before, and I will say it again; I would trade our time on the vent for yours, if it meant that one less child had to be tethered to this stupid machine.

A Flurry of emotions...

2009-03-27T15:00:00.009-06:00

When the surgery scheduler called to confirm Faith's bronch and kindly reminded us to be there at 5:30am, we thought the Reming sleep curse was in full effect, and it was just our luck that on our day off we would need to set our alarm clocks for before dawn. And then when we found out that the biggest storm of the year was sweeping into town, and would be a full on blizzard by noon, we knew that God still loved us.

I am not sure how I feel about the yesterday's bronch. We got some information I was not ready for, and all of my preconceived notions were thrown out the window.

I will start at the beginning, for the 80% of the non-medical people who read this (the other 20% just skip to the next paragraph.) Yesterday, Faith had a rigid bronchoscopy. In layman's terms, this meant they took her to the operating room, knocked her out with anaesthesia, and metal tube with a camera down her airway to check things out. Faith routinely receives flexible bronchs in the doctor's office, where they insert a soft, flexible camera down her airway. As you can infer, the rigid bronch offers a much more complex look at her airway. She has not had one of these for over a year.

We have not had much information on Faith's airway other than the comforting words, "it's complicated." Yesterday we learned that there is permanent damage caused by her many months spent intubated. It is still very swollen and yes, "complicated." In the past we were told that time and growth would reverse this. Faith's ENT noted how incredibly small her airway is (they could barely fit a size 3 ET tube down) and there is no way a child her size could breathe through it.

Yesterday, we were told that time is no longer significant, and the only way to fix her airway is by way of reconstructive surgery. We knew this was coming and is par for the course in the trach world. What we weren't prepared for was what came next. Faith would receive reconstructive surgery to repair her damaged airway, and they would take the trach out at the same time.

Ok, before you all freak out on me, need I remind you our child is still on a ventilator during sleeping hours (and when she is sick) so of course this would have have to come after she is stable off the vent.

It was shocking not only to hear that there is a possibility of the trach coming out, but the way it would be done. Everything I know went out the window. I know quite a few kiddos with trachs and the typical process for getting a trach out goes like this; child exhibits airway is stable by making noise and is usually giving a speaking valve which restricts some airflow through trach, having a leak (meaning air can pass through mouth/nose), moving down a trach size, and "capping," meaning a cap is placed over the trach so the child can practice breathing through their nose/mouth. Faith meets none of the above criteria. And she never will. Her airway is far to damaged to ever be able to breathe without reconstructive surgery. This means there will be no "practice" round. Decannulation is extremely scary, I cannot imagine doing it like this.

No need to get wrapped in it right now, because Faith is still ventilator dependent (for the most part). We've been talking about vent weaning for some time, and being ventless may help her sleep better.

After Faith is weaned she will need her tonsils and adenoids out, which once again is a given (the more space back there the better) so we have some hoops to jump through before any of the above is an option.

Thankfully, life with Faith has been status quo for some time. We've settled into this "special life" and however stressful it might be, have become quite comfortable in the world of raising a medically fragile child. Progress is good. Progress is the goal. But it also brings a flood- no, a blizzard of emotions. Like the wet and heavy spring snow that began to accumulate outside, I felt suffocated by this flurry of new information.

As Faith came out of recovery, we received word that highways were being shut down and schools were closing. In my five years of teaching I can count on one hand the number of times schools have been closed due to snow (with fingers to spare, it's been 3). And our district is on spring break. Go figure. Nevertheless, we made it home in one piece, and spent the rest of the day recovering from the emotional week in our cozy home.

Today the storm has passed. The sun is peeking through the clouds and has begun to melt away the placid drifts of snow. And somewhere beneath it all, the vegetation that has been dormant for some time, is ready to spring.

:)

SOS: Save our Sleep!

2009-03-24T13:27:00.013-06:00

Pardon the terrible quality of these pics, I took them with my cellphone. Doesn't it look like she's about to jump out of an airplane? In this bottom picture, what does she have to keep her comfort? None other than her good ol' med. syringe.

I have coined a new phrase, PTSSD: Post-Traumatic-Sleep-Study-Disorder. Symptoms include blurred vision, lethargy, bags around the eyes, and that 5am migraine I am all too familiar with. Children who undergo PTSSD experience sticky heads, ripped out chunks of hair, and scratches all over their bodies where they fervently grabbed at the various leads throughout the night.

Drama aside, it all could have been a lot worse. It was a typical night for Faith, which these days means a plethora of things.

The sleep study was further complicated by an EEG to rule out the possibility of seizures (one of the many theories of why Faith is waking up so frequently). This meant even more leads covering her cranium. It took three adults to hold her down while the technician went about the monotonous task of placing electrodes on the screaming, kicking, toddler. While we were holding her down we noticed something remarkable; She wasn't turning blue! As little as a few months ago, if she were to get upset, her bronchial tubes would "shut down" and she would become cyanotic. The fact that she was having a fit and retaining her color was very encouraging!

Back to the sleep study....tired from the fight, Faith did actually "sleep" for the first few hours. Our definition of sleep is pretty skewed, for Faith never really falls into a deep sleep. She constantly twitches and breathes very shallow, frequently alarming the ventilator.

Right on time she awoke for her middle of the night rendezvous, to which the nurse came in and asked, "is she like this every night?"

To which I replied, "Y'up."

Her response, "Then when do YOU get your sleep?"

To this I could only say, "good question."

All in all it could have been a lot worse. It was what it was. Fortunately we are on spring break and I got to crawl into my bed and hibernate for a few hours this morning. When I emerged from my den, Papa Bear was bearing treats that could rouse the sleepiest of mammals; Lamar's donuts. Somewhere out there there has to be proven research that the only way to recover from one's PTSSD is by digesting lard-fried, chocolate covered dough, topped off with a fresh cup of coffee. Mmm'mmm good.

On an ending note I want to add how impressed I am with THE SLEEP TEAM (yes, I must now refer to them in all caps) at Children's (and no sarcasm here, I mean that wholeheartedly). This morning I got a call from the nurse practitioner who saw us on Friday. Like a carrot dangling in front of a rabbit's hole, our little white miracle pill was snatched away. As it turns out, the pill they prescribed is not well suited for children with breathing problems (they told us this on Friday and said wait to fill it, and thankfully we did). She said she saw the sleep study and wants us to see one of the sleep docs whose expertise is with pulmonary kiddos with sleeping probs. She didn't go into any specifics regarding the study (it takes a few days for the team to review it) but the fact that after glancing at it she wants us to meet with another specialist means that the objective of the sleep study was met.

I have to say that ever since our squeaky wheels started getting greased, the team at Children's has been extremely prompt and accommodating, and for that we are forever grateful.

I promise there are days ahead where every post I write is not going to be about sleep. Since it's pretty much ruling our lives right now so that's all I have to write about.

Thanks for all of the warm, fuzzy sleepy thoughts! We are encouraged and remain positive that happier, healthier days AND nights of sleep are on the horizon!

Jen & Brian

March Madness

2009-03-23T14:44:00.000-06:00

A possible slam dunk in the sleep department? I wouldn't bet on it...

Every third week in March the teacher talk in our school building includes plans of trips to Baja and books lists to resume. When asked what the Remings would be doing this spring break, too tired to go into details, my reply was, "nothing." This is usually followed up by our colleagues' commenting on how nice it will be for us to rest and relax.

Huh.

We can only dream.

First of all, our daughter has now turned into an official pill. They don't call it the terrible two's for nothing, but when your sensory system is out of whack, you can't communicate, and your body is constantly fighting infection (not mention sleep deprivation) the word terrible hardly defines it.

Faith's latest stint is pulling out her trach. *sigh* This no longer terrifies me as the thought of it once did, but I do get nervous thinking about it happening when we are not around. (Remind me to tell you a story of this happening about a month ago- we did have a scary event where the little trust I had in other people taking care of our daughter is now next to none.)

Nevertheless, we are getting help. As I wrote last week, we had a sleep study on the calendar which would result in an appointment with a much anticipated "sleep specialist."

After one too many TERRIBLE nights, we came to the conclusion that this insane situation we find ourselves in night after night cannot continue. We cannot keep having doctors telling us to "create sleep logs" or "to re-examine our sleep hygiene" (and no, that is not a made up word, and yes, I have had a doctor tell me those exact words).

So once again my dogmatic husband put his foot down, called Faith's doctor and two days later I was standing in a room face to face with someone from "The Sleep Team."

Yes, you heard that right my friends; THE. SLEEP. TEAM.

I am not even going to go into why this mysterious "Sleep Team" was not consulted MONTHS ago or why it took us being abrasive and pushy in order to get an appointment, because at at the end of the day we were there, and that's the closest we've ever gotten to alleviating this problem.

I won't bore you with the details of the appointment but when suggestions such as "maybe she needs white noise in the background" (to which my mom, who came along, replied, "yeah but don't you think the ventilator is loud enough?") or perhaps our nightly rituals are not conducive to Faith's healthy, yes here is that word again, "sleep hygiene," I was sure that all hope was lost and we reached yet another dead end.

And then something happened. Whether is be the desperate look in my eyes, and exhausting tone in my voice when I replied "so now what?" or the fact that while we are having this conversation keeping my child intact was like wrestling an alligator, the woman clad in white
realized that this is bigger then "sleep hygiene" or weighted blankets, that we needed help and yes, that help was the form of a little white pill.

Hallelujah!

OK, I know that this miracle pill might not be "The Answer" but it is an answer, and it's all we have right now.

So tonight is the sleep study. Thursday is the bronch.

And somewhere in between we hope is lots and lots of sleep!!!

;)

Another Not-So-Freaky Friday

2009-03-10T17:31:00.003-06:00

What's the latest toy craze in our house? Baby dolls, puzzles? Nope.
Med. syringes. Well, at least she knows how to stick it out through a tough economy!

I wrote a part of this last Tuesday, but forgot to finish and publish it, so pardon the potpourri-ness (I just love making up words) of this post.

*****************************************************************

Since I know you are all anxiously awaiting to hear the outcome of last weekend (and no, I’m not being egocentric…just sarcastic.....OK maybe a little of both) I am pleased to report that we came out unscathed. Only one dog was in a “no-lick-collar" by the end of the weekend, so we are calling it a victory! Of course the shortest weekend of the year was also our least dramatic weekend we’ve had in months. Go figure.

Of course we are still dealing with the never ending sleeping issues (Faith's latest trend is being wide awake from 12-5am...last night this included a decannulation. Oh joy) we finally seem to be getting somewhere with Faith’s medical team.

For the past several months we’ve gotten the run-around on the sleep issue. Faith’s pediatrician from the special care clinic at Children’s wants pulmonary to handle it, but at pulmonary appointments they pawn it off on the special care clinic…you catch my drift.

Enter my husband (who hails from New York, meaning being pushy and direct is in his blood) and we finally have a sleep study on the calendar. Yes, the sleep study will be inconclusive and meaningless (our child doesn't sleep and that's without a bazillion electrodes on her head) But that’s not the point. We cannot see a sleep specialist (translation: get DRUGS!!!) until we’ve gone through the rigmarole of the sleep study. So…long story short we are starting (very slowly) to get somewhere.

As Brian gave me the report from the appointment he enthusiastically said, “Do you even know what 8 hours of sleep would do for our lives? I can’t even imagine the possibilities!” Nor can I, but we can only hope!!!

On another note……I had a least a half a dozen people come to me this week, commenting on how Faith looks so great “standing” in the recent picture I posted. Yes, Faith looks GREAT but the picture is a little deceiving. Faith is by no means standing independently. While she can stand and “walk” (aka cruise) while holding onto a stable surface, she has a lot of balance and coordination issues to do be able to do it on her own. NOT like it really matters. In fact, it doesn’t bother us at all, and I do feel a little silly for even bringing it up, but I guess I just wanted to make a point that pictures can give false impressions.

With that being said, Faith is making a lot of progress in other areas and amazes us everyday with her determination and perseverance!

**************************************************************

Today my mom reminded me it was Friday the 13th, by saying, "good thing we are not superstitious.." to this my throat replied with another, "gulp."

It wasn't so much that it was the 13th....but once again it reminded me that another weekend has approached. Already we've had a lot of drama today (with our arch nemesis, the insurance company) but that's the kind of stuff that we deal with on a daily basis, so we are setting out for another victorious weekend. We even have plans to leave the house WITH Faith (GASP, CHOKE, COUGH).

I know, I know, we are living on the edge. Every time we do take Faith out (which is pretty much next to never) we are reminded of why we don't take her out. Weekend or not, I think we'll take our chances.

Hope you all have a fabulous out-and-about weekend yourselves!

Jen :)

PS: And no, today CANNOT be a bad day because another precious miracle came into the world 2 years ago today.... Happy Birthday Rissa-Roo!

T.Gulp.I.F.

2009-03-06T17:50:00.002-07:00

Sometimes, weekends can just be the pits!
I am posting on a Friday. I rarely post on Fridays. I am doing so because I am making a last ditch attempt to end a terrible streak of bad luck Fridays.

Last Summer, Faith's physical therapist jokingly chided that she cautiously stays away from our house on Fridays. Perplexed, I inquired why and she said because, "The Reming's have bad luck on Fridays.."

This was before car accidents, hospitalizations and our hellish winter, and looking back it's hard for me to pinpoint bad things that happened to us on Fridays last Summer.

This week as the weekend approached so did the knot in my stomach. There is something about the weekends that just scare the bejesus out of us. Maybe it's because lately our weekends have been nothing short of disastrous. Be it Murphy's law, or a collision of cosmic events that are too common to be coincidental, everything seems to fall apart on the weekends.

So yesterday morning when I awoke to pink eye (yes, pink eye, I didn't think anyone over the age of 10 got pink eye, but maybe because I make a living by hanging out with people under 10, that rule doesn't apply)I knew it was time to go on the offensive.

I am declaring a weekend free of infirmity, break-down, and any other pandemonium that threatens to take us down.

As I write this I am feeling very William Wallace-esque (aka Braveheart) as I so un-solemnly (yes, I think I just made that word up) declare....

"They may take our sleep, but they will not take OUR WEEKEND!!!"

Can I get a witness? ;)

In like a lion...

2009-03-01T20:09:00.003-07:00

This is more or less an extension of my last post, or should I say, an update:

As feared, the evil stomach bug came for the Reming clan. It took me out Friday night, and hit Brian while he was in the emergency room with Faith on Saturday. Faith has been slow to recover from her bout with what had to be none other than the stomach flu (trust us, we just experienced it, it's no doubt the flu). She is dehydrated (yes, even with a steady stream of Pedialyte), and extremely irritable and restless. Faith was "boarderline" on being admitted, but Brian had no choice but to bring her home, he was in no shape to take care of her at the hospital, nor was I.

Unfortunately, it looks like Faith's issues are beginning to become respiratory related. Work of breathing, yellow secretions and the usual winter fare...which can only mean some tough days ahead.

The really really crappy part of this situation was having to take care of Faith while being sick ourselves. When you are sick you just want to crawl up into a bawl and recover, but when you have a medically fragile child that requires skilled care, that responsibility falls on you.

Alright...well here's hoping the rest of March is more kinder, and gentler than this past Winter has been...we're due for a lamb!

Jen & CO.

PS: A HUGE thankful to all who helped us while we were incapacitated....my Uncle Paul who brought us ginger ale, etc....my brother Josh who escorted Brian and Faith to the ER Saturday night, and my mom who selflessly entered our viral-infected home and came to our aid.

The Saga Continues... (and with that title you now have permission to stop reading!)

2009-02-26T21:18:00.006-07:00

Ok..I'll be honest.

I haven't been updating the blog recently because...

A.) We've been suuuuuper busy over the past couple of weeks....

but mostly B.) In following with the rule I impart on my students, "if you don't have anything nice to say, then don't say it at all" I'd be a hypocrite if I did.

After finally recovering from the respiratory slaughter, Faith finished her antibiotic on Tuesday then botta bing, botta boom it hit us like a ton of bricks by Wednesday night. The G.I. bug from "you know where" is back (remember him from 10/07 and 10/08...y'up we sure do) and Faith has been miserable ever since.

You know that terrible feeling you get in your gut when you need to throw up? Remember how good it feels (in a sick sort of way) after you've done the deed? Well our little girl cannot throw up because her stomach is tied off. The result is hours upon hours of retching (now I know how you feel Tina!) and it all coming out the other end. It may sound nice, but trust us it's not pretty. Watching her toss and turn, moan and groan and not be able to do a darn thing about it, is torture for everyone involved.

Faith is also running a high temp. which surprisingly rare for her. I can count on one hand the number of times she has had a temp, and that's through many bouts of sepsis!

So that's where we are tonight. I'm begging...pleading....givng my first born (ok not really..) that we will not get this, too. The other two times Faith had this it came for us days later. The only thing more difficult then taking care of a trach/vented baby who cannot throw up is having to do it from the lavatory..yeah you got it..not a pretty picture.

Uh-oh..... there I go again. I didn't hold true to my word...well I had to post something...or you'd really think we'd actually fallen in the commode.

Ok enough potty talk for one post.

Thanks for hanging in there w/us,
Jen & CO.

PS: Yes, this is messy, icky and miserable, but I'll take a G.I. bug over a respiratory issue any day. (I may be retracting that statement at 2am tonight!)

Once Upon a Nightmare..

2009-02-16T14:27:00.006-07:00

If I had not already reached my "feel-sorry-for-my-sleep-deprivation" quota for this month, I'd tell you the tale of the Massacre of St. ~~Valentine.~~ Reming-tine:

In this tumultuous tale, a two-foot tall two-year-old simultaneously took down two grown adults and had them on their knees begging for mercy by the night's end.

While the two crusaders hoisted their white flag, pleading for a truce to be made, the two-year-old duked it out with her own nemesis; the serpent suction machine. The 22 pound tiny warrior was no match for the roaring, twisted dragon that breathed down her neck hour upon hour...

But alas, this far-from-fairytale does have a happy ending. See, by dawn's early light, wounded from the battle, the Knight in Shining Armor came to rescue the Damsel in Distress, barring gifts that could come from no place other than Camelot; Chocolate, flowers, and a spa package. No, it cannot be afforded, but if I may be as so presumptuous to say, *ahem* ...........well deserved?

And as for the little warrior, you might ask? After a long pilgrimage to a land far far away, and after having to fight completely different sort of battle (which included it's own cast of antagonists) she was given a magic potion that will attempt to tame the ruthless adversary that infiltrated our humble abode.

OK......I know what you are thinking.....

Give me a break!

If I haven't already won the award for "Most Dramatic Mom of the Year", this account certainly puts me in the running. ;)

(Coping mechanisms, people....how else do you expect us to get by?)

Hope your Valentine's day was equally as rewarding,

Jen & CO.

Two Years Old and LOVING IT!

2009-02-11T19:33:00.002-07:00

My daughter turned two and I forgot how to blog! Really, this week has just slipped away from me. So here's your weekly update:

Faith had a very nice birthday. We kept things very low key this year (I know, those of you who know me are wondering how that is possible). Faith spent the day of her birthday being evaluated for an augmentative communication device (more on that later) which was pretty cool. Over the weekend we had a little family party, once again keeping it simple. :)

As usual the opening presents thing was ......er.......interesting...here are some pics from her soecial day:

I may only be 2, but c'mon Ariel, those shells can't be real!

Ok guys...what the heck is THIS supposed to be?

Really, Mom? A play kitchen? I know we are living in a post-feminist society, but don't you think this is reinforcing stereotypes we've worked so hard to nullify?

Who needs cake when you can have some rim? And they say I have an oral aversion...

FINALLY, they listen to me.... What a girl REALLY wants....

KLEENEX!
****************************************************

Here are some shots from our little get together this past weekend:

An OT's dream: While this appears to be a typical picture from a 2 year-old's birthday, we have never seen anything like this before! Faith FREAKS whenever she touches anything food realted. She's gone through lots of therapy to "desensitize" her to textures of food, but she HATES every minute of it. So when she GRABBED the ice cream container and started playing with it, we were AMAZED!!! (not only is it FOOD, but it's COLD!!!!) Looks like all that time spent in the dogs' bowls is paying off....

Now, we are not ones to get all fancy and put Faith in a dress (when your child doesn't walk, it's really impractical) but we couldn't resist when uncle Josh gave her this beautiful brown dress last Christmas. Not only was it as cute as can be but it served multiple purposes as it immobilized her enough to actually sit still.
This is one of those "you-had-to-have-been-there-to-appreciate-it" pictures. Since we do not take Faith out (respiratory season isolation) she doesn't get much interaction with kids, yet alone get up close an personal with one! So when my brother's girlfriend's son came over, Faith was completely enamoured with him. It was too funny. It was like she said, "enough with these boring adults, I wanna play with someone my own age!" Poor Gabe was tortured as he tried to play video games.

So that's that. Our girl is now an official 2 year old and although she seems very "un-two" we really don't know any different, so it's OK with us. I still cannot believe that we have ALL made it this far! Here's to many more 2's to come!

Thanks for all of the birthday well wishes!

Jen & Co

For our little butterfly, on your birthday....

2009-02-04T06:09:00.001-07:00

Too soon you left your Mother’s watery embrace,

Too soon you sprung from her internal nest,

Too soon the gift of you unwrapped…

And yet, sweet child, you were on time.

On time to tell of Cradling Palm and Giver of your name,

On time to force to trembling knees witness of unseasoned clay,

On time to wish our pulse and breath into your fragile frame…

On time, sweet child, on time.

And what of tomorrows – yours and ours?

Of dreams long held and dreams unspun?

What of the Promise with which you came?

The Promise lives, the Promise waits,

To enfold you in His strong embrace.

From distant worlds you arrived on time

To a place prepared you shall return, in time.

And of the interval inbetween?

And through each eternal spring?

You’ll share our hearts, our love, our faith,

O precious child, who came on time.

-Sharon Morcos

Happy Birthday precious Faith! We love you!

Mommy & Daddy too

Growing Pains

2009-02-03T13:31:00.004-07:00

I knew I had officially grown up last October when the flu ransacked our house and everyone was left to fiend for themselves. Brain had his head in the toilet the whole night, Faith was gagging and retching (because of her Nissen she cannot throw up) and I could barely walk because I had just had surgery on my leg the day prior.

Faith needed to be suctioned, her crib needed to be changed (when you can't throw up it all goes out the other end) and I was in immense pain. As I lay there realizing the crappiness of the situation, I came to the realization that this was what it meant to be an adult. Forget leg pain, forget the stomach flu. It's my resposibility to take care of my sick baby, and no one is there to take care of me, not even me!

A similar (although not as nearly severe) situation occurred last night. We avoided the hospital this weekend and it looked like things were on the up and up. Until last night all hell broke lose and it was another miserable night of non-stop suctioning and non-sleeping (although the latter is not unique in our house). While nothing compared to the stomach flu, Brian and I caught whatever Faith had and have been battling our own illnesses.

All I wanted to do was take some NyQuil and go to bed. But I couldn't. I couldn't even lay down because every time my head hit the pillow I would need to suction Faith again. This is the difference between a typical child having a cold and our child; suctioning. There is nothing I despise more than the sound of the suctioning machine slicing through my migraine at 3am...that and the non-stop alarming of the vent every time I "make a pass."

I couldn't help but loathe in a little self-pity as I realized that my child would be turning two years old the following day and she has yet to ever sleep through a night. Forget sleeping through the night, at this point we'd be happy if she slept through an hour.

The difference between last October and this year is that I handeled the situation with a little bit more maturity this time around.

At 4am when Brian came in and realized that not a wink of sleep had been had, he pleaded with me to call in sick. Knowing full well my alarm clock was going to be going off in the next hour, I reluctantly said no. And then he said something that struck a chord with me. He remarked that If any of the teachers at our school experienced one night like we had just had, you could bet your bottom dollar they'd call in, the only difference between us and them is that we do this 3-4 times a week (OK the bottom dollar part was me..Brian's not that cheesy).

He was right. And I was tired. And the difference between last October and now was that I knew our nurse would be here in the morning. A nurse I trust. A nurse I could shut my door and sleep the day a way without ever worrying about my daughter.

Around 6 am I caved in and called the sub line, e-mailed my colleagues, took a swig of NyQuil and I finally grew up.

-Jen :)

Rocky Balboa, Meet Faith Edona!

2009-01-31T15:29:00.000-07:00

"I fall, I stand, I trudge on.
I gain a little, I get more eager and climb
higher and higher to see the ever widening horizon.
Every struggle is a victory."
-Helen Keller

No longer confined to the rectangular carpet, when Faith is off of the vent she is connected to fifty feet of oxygen tubing and pretty much has free rein of the downstairs. Our house is small enough that I can run upstairs for a few minutes and still hear her downstairs. While Faith is mobile (crawling, scaling walls) she can only go as far as her tubing will allow her (although she does pop off and keep going....), so when I do run up the stairs she's usually content playing in the dogs' food or opening and closing kitchen cabinets.

The other day while went about the monotonous household chore of emptying the trash in each room of the house, as I emptied Faith's pink, butterfly-imprinted trash basket, I turned around to see my daughter at her door, smiling very matter-of-factly.

My heart skipped a beat.

How on earth did she get up here? Did she.....? No...she couldn't have.....no way...

Y'up. She did. Just take a look for yourself:

Make video montages at www.OneTrueMedia.com

Perhaps more appropriate music would be "Ain't no mountain high enough..."

Looks like it's time to buy another baby gate. Looks like it's time to celebrate another mountainous milestone reached!

Hooray!

***********************************************************
On another note (I wrote the previous stuff yesterday), if I wrote about each time Faith was sick every single post would be about her fighting off yet another infection.

No kidding, the girl is sick 3/4 of each month. Right now we are walking the very thin line of hospital vs. home again. It would only be fitting that Faith spend Super Bowl Sunday in the hospital, wouldn't it? Afterall, it wouldn't be the first or the second time!

We probably had the worst night we have EVER had last night (and that says a lot!) but we reeeeeeeeaaaaaallly don't want to take her in, so once again we are trying to manage it all at home. But as some of you commented last time, ultimately Faith will make that decision for us. :) So prayers and good vibes please!

"angels can fly because they take themselves lightly.."

2009-01-29T20:39:00.004-07:00

This is for all of our compadres at St. Joe's:

http://www.youtube.com/watch?v=Hg0w2bJ7YaU

(All exclusiveness aside, it's a NICU thing, so unless you've been there you wouldn't understand!)

Sunday Sentiments...

2009-01-25T19:26:00.007-07:00

This was in last week's Sunday paper, and I just HAD to share it with all of you.

For those of you with eyes like mine (sorry, I'm not very good at resizing images) it reads: "someday you'll be a teenager, and you'll want to sleep all the time...and then I'll have my revenge..."

Absolutely perfect!

No excuse for not updating this week. No trips to the park today, the reality of January set in today, bringing gray skies and falling snow (but that's OK, we're some of those sick, twisted people who actually enjoy days like these, as long as we're allowed to be cozy indoors).

Hard to believe last week we were doing this:

How wonderful it is to be blogging about the weather and not some crisis (knock on wood)...let's enjoy this while it lasts!

Have a WONDERFUL week!

Jen & CO.

Gone to the Dogs

2009-01-21T22:07:00.001-07:00

We long for an affection altogether ignorant of our faults.Heaven has accorded this to us in the uncritical canine attachment.~George Eliot

As Faith approaches her second birthday, we've been getting a lot of questions/comments on whether or not we plan on adding to our family.

"Faith needs a brother," a friend from TCH remarked a few weeks ago.

What these people don't know, is Faith has two very stinky and wild brothers already.

To her, she is just one of the pack!

The other day the three of them played "peek-a-boo" through the doggy door for twenty minutes (and in toddler time, that's impressive!)

"Hey no fair! You get to be outside and I don't?"

"Just because I am wearing a pink bow in my hair doesn't mean I can't be one of the boys!"

"Say the magic word...!" (and yes, I am fully aware that my child has a mullet....I know I am cruel..but what else are we going to have to bribe her with when she's a teenager?)

"Open sesame!"

Buffalo offers a pittance (and yes, that's our dog, Elway in a "no-lick-collar." You don't even want to know..I swear we have the most accident prone dogs on this earth!)

Faith thinks it's funny when everyone else eats but her (here's she's offering Elway a piece of a Pringle). I've been meaning to get a picture of Faith in her new favorite pastime; playing with the dogs' food bowls. Yes, the child who freaks when she touches any sort of humanely edible cuisine, loves to get her hands slimy with regurgitated dog water and grainy kibbles and bits. Mm-Mm good!

When Faith received her trach we were cautioned to avoid exposure to animals because of the possibility of hair getting into her stoma (trach opening). Yes, I am sure there has been lots stray hairs that have made their way south towards the lungs, but sometimes the pros outweigh the cons. And we know she thinks it's worth every strand of irritating dog hair!

Thanks for checkin' in today!

Jen :)

And yes, you may have noticed Faith is off the vent! We are finally back to her "baseline" of being off the vent throughout the day! We are not "weaning" we are just "maintaining" at this point, but any rate, any time she can spend untethered is HUGE in our house!

(and yes, we will be addressing the "sibling" question more thoroughly in the next coming months...and no it's not what you think!)

Carpe Diem

2009-01-18T13:52:00.004-07:00

The laundry is done (well...almost), the carpet is vacuumed (for now..with two hairy dogs the job is endless), and the sink is finally clear.

I just sat down to do my weekly blog update and glanced at the temperature gauge on my desktop. It's 60 degrees and it's January.

An update will have to wait my friends, I am taking my girl and WE are going to the park!

Hope it's equally as beautiful where you are!

Jen :)

A Different Sort of Warmth

2009-01-11T08:29:00.008-07:00

Dear Faith,

During the 14 months you were hospitalized one of my coping mechanisms was picking out clothes for you. I will never forget when you were first born how friends and family sent care packages of "preemie" clothes. I remember holding up a preemie sized outfit to your little 1 pound body, you could have fit in the arm hole with room to spare.

As you grew, I found comfort in buying clothes every month. It didn't matter that I was buying a newborn size for my 9 month old, I was just happy to be doing it.

The purchasing process was always a little interesting. Head into any baby department in a store and you are bound to find a menagerie of moms with kids in tow. Some of these moms were stressed to the max, trying to complete the task of picking out clothes while refereeing a fight between siblings or calming a tantrum. While other moms (usually new moms, I could tell) sublimely walked through the aisles with their babies clutched to their bosoms, still imparting that postpartum glow.

It would not be honest of me to say that I wasn't jealous of these moms. They had something I didn't. But as time went on the feelings of envy subsided and I just became indifferent to them. I had grown to accept my new brand of motherhood and once again I was just appreciative that I was still in fact, a mother.

There was one section of the store that did stir up emotions more than any other. No it wasn't the baby food aisle (which is still obsolete for me), but the circular, aluminum rack of seasonal jackets. We're not talking any jacket here. It's the puffy kind that makes children look like stuffed marshmallows and are intended to withstand blistery cold days, that became the epitome of what it means to have a child in the hospital for 14 months.

A jacket symbolized something that wasn't available to my child. It wasn't a fashion statement, it wasn't just a collection of fibers that would keep my child warm, it was freedom. Kids who had jackets weren't confined to hospital rooms. Their moms would take them wherever they pleased, whenever they wanted.

I know I am not the only mom to feel this way. Across from your room in the hospital, a little boy lived in the same confines for 22 months. I used to naively think that 14 months and 22 months were relatively the same amount of time. And then I had you home for the 8 months in between and I saw how much life you had lived in those 8 months, and I knew that there are no comparisons...22 months spent in a hospital is eons apart from 14.

About a month after this little boy went home, his mother brought him back to visit. The first thing I noticed when I ran out of the room and embraced his mother was his toddler-sized camouflaged, winter jacket. While there was a language barrier between us, a thousand words were spoken in that moment. I pointed at the jacket with enthusiasm and his mom smiled widely at me and with a reassuring head nod, told me not to worry, that one day we'd know the freedom of jacket too.

This past fall as the leaves began to change, although you had already been home for several months, I knew there was something I had to do to vindicate your freedom. So one early morning I headed out to Wal-Mart and went directly to the part of the store that had been off limits to me for far too long.

The jacket I found was just as I had envisioned. Pink and puffy, a stuffed marshmallow surely you'd be.

In an ideal world this story would end with a picture of you aglow in your winter coat.

The great irony is that you hate your jacket. The multiple times I have tried to put it on you, you have thrown temper tantrums of all tantrums, kicking, screaming (or what appears to be screaming) and turning blue in the process. Not like it matters, the only place you go in the winter is to the doctors office, so a winter jacket is pretty obsolete anyway.

So, the jacket sits in your closet, tags still attached, providing us with a different sort of warmth. And that's perfectly OK with me. After all, this isn't really about a jacket, it's about restoration, opportunity, freedom and above all it is a symbol of hope; of what was, and what is to come.

Love You Always,
Mommy & Daddy too

Home :)

2009-01-03T21:41:00.005-07:00

Ringing in the New Year: I just happened to have a "party blower" (very randomly) in my purse which found great purpose on New Year's Eve. Look at Faith in her big girl bed! Because of her crib-phobia (try explaining that one the charge nurse) Faith was once again allowed a big girl bed, which was nice for us big people, too. :)

Sorry I haven't posted in a while. Just wanted to let you know we are home. :) Faith is extremely exhausted, irritable, and sleep deprived (as are we). I think she's having some "riod rage" (Tina, you'll appreciate that) b/c we've never seen her so restless before (will explain more later...)

Respiratory wise Faith is doing MUCH, MUCH, MUCH better. Turns out she was fighting a virus of sorts which basically knocked her out for a few days.

If you see the sandman tonight please nudge him to come sprinkle some extra dust over Faith's bed tonight (last night she FINALLY feel asleep at 5am...yes...she was up the entire night). It's already been a rough go tonight and it's not even 10 yet.

Thank you for your prayers over the past week, we know they really helped in aiding Faith's quick recovery!

Jen :)

PS: I just turned on my phone this afternoon (forgot my charger at the house) to a host of text messages and voice mails. I just wanted to let those who tried contacting me that I did not mean to neglect you and will reciprocate communication asap (just wanted to throw that out there for those of you who might think I have time to update the blog but not to return calls...but then again I know my friends don't keep tabs like that.) ;)

2009-01-02T08:01:00.002-07:00

Just a quick update to say that Faith is doing A LOT better. The increased vent support, steroids, and antibiotics really seem to be doing the trick. We're hoping to get out of here this weekend....afterall we have our own PICU at home, so as long as the IV antibiotics are switched to "oral" (meaning g-tube, of course) I think we can manage. :)

So we'll see!!!!

Thanks for checking in on our littler girl!
Jen :)

We're Baaaaaack...

2008-12-31T15:32:00.003-07:00

I had planned on writing a post looking back on the past year, I had not planned on doing it from the hospital. Yes, you heard right, we are back in the PICU.

No, we don't jump at the first sign of sickness and cart our daughter off to the hospital. Quite the contrary we tried everything to STAY HOME, but after 8 hours of walking a thin line we gave in and went the the emergency room where we were quickly admitted to the PICU.

Once again Faith's condition quickly began to deteriorate over night. Increased work of breathing, needing 4X her normal oxygen requirements, bloody secretions, and increased vent settings got the better of her. So we're ringing in the new year from The Children's Hospital, once again.

She's doing alright today. Still working to breathe (when I say that, that means you can see her ribs every time she breaths and her nostrils flare- imagine how hard you breathe after a fast sprint- that's her breathing, even on a ventilator). She's on pretty high settings right now (a rate of 20) on a more powerful ventilator. So who knows how long we'll be here. Believe us, we've been pushing to go home since walking through these doors, but in due time. Among other things she's on IV antibiotics which will hopefully knock out the perpetrator this time around.

So no reminiscent posts tonight, we'll save the well wishes for 2009 for when we are OUT of the hospital.

Happy 2009!
Brian & Jen

Faith's (almost) first Christmas

2008-12-27T14:02:00.019-07:00

Although this is technically Faith's 2nd Christmas, holidays spent in hospitals just don't count, so in many ways this was our first Christmas as a family. We had a pretty low key day- no tears were shed or tantrums were made(we're not just talking about the 22 month old either...) overall it was a great Christmas!

Brian's mother is here from Buffalo, and my Uncle came from Georgia. Yesterday we went to see Marley & Me (one of my favorite books) which was very relatable (we have two beyond-trainable labs of our own). It was nice to get out and do something "normal." Faith stayed at home with our nurse, who apparently makes holiday house calls (have I mentioned how much we love her?).

We are enjoying just lying low and hanging out. It's nice not feeling chronically tired for a change. Not many jobs will give you two weeks off around the holidays so we are very appreciative for our profession!

I'm absolutely terrible about taking pictures, so I only have a few Christmas morning pictures. I guess I am better about documenting Faith's life with words. ;)

Here are some snapshots from the day:

Faith LOVED her life sized Elmo doll (and I'm glad because I stood in line for 2 hours at 4am on Black Friday to get it!) She thinks he's real.

How in the world did Santa fit you down that chimney?

Peek-a-boo! I see you!

For the most part Faith was a spectator, hiding behind the ottoman and taking it all in. She sure loves her new toys now! In this picture Aunt Kristen (Brian's sister) helps her open a tambourine toy. Does that come with Guitar Hero? I'm ready to rock!

Hmm...and what do we have here? Word on the street is that Grandmas always bring the best presents.

Ok..overload! Make it stop!!!! (Faith is not a fan of wrapping paper)

And what do we have here? What a minute...I think I like this Christmas thing!

Boy, all that openin' was exhausting! And hey, what's with all the people around here and those books? Does that come in a kid-friendly print? (Yes, that's my sister-in-law reading a Twilight book (it's an epidemic I tell ya) and I'm sure she'll be mad at me for posting this. :P But I just had to show the world that I'm not the only one who couldn't put them down.

Our Christmas Miracle, a.k.a our nurse, Dee (who will also be mad at me for posting this but I cannot get over how lucky we are to have her!) Can you tell how much Faith enjoys her?

I know look-at-my-child Christmas pictures can be a snore, (blogs are the new wallet pictures) so thank you for allowing us to gloat.

Happy New Year!
Brian & Jen

Turf Wars...

2008-12-21T19:04:00.008-07:00

Look! It's us being married again! Actually it's quite the opposite....some of you may remember four years ago when we said our vows we promised the whole "til death do us part thing..." but there was one stipulation...when the Broncos played the Bills all marital promises were void. While we're smiling in the picture, I can assure you that I am taking full advantage of the clause right now :) (that, and I am a sore loser!) Five more hours of amnesty and you better bet I'm milking this one.

Nevertheless, we got out today (something that is very rare) and had a good time (despite the 15 degree weather...only in Colorado would the sun be shinning so brightly and it be that cold outside!)

Faith just keeps trucking along. Christmas should be quite amusing this year. Whenever Faith is introduced to something new she cries. My mom brought her a princess wand last week and Faith was in tears.... think she'd like a doll? Nope- absolutely terrified of it. So as long as we're not too attached to any ideals, I think it should be a good time. :)

Check out our little ham:

Now that Faith can pull herself up on things (!!!!!) we were a little worried she'd try to do so on the Christmas tree. Apparently we forgot we were dealing with a sensory kid because she wants nothing to do with the bright, poky thing. So this is as close as she is going to get. The shirt she is wearing reads, "Good things come in small packages." I wonder if the people who came up with that concept of this shirt knew how absolute that would be for families like ours.

May you see the blessings in the small stuff,

Jen (and no Brian tonight...he's not allowed...j/k.)

PS: I'm really not kidding- after the game one of our friends joked that Brian would be sleeping on the couch tonight. Since we never sleep in the same bed we won't have that problem. ;P I guess I'll have to find another way.....

Close encounters of the bearded kind

2008-12-14T08:48:00.009-07:00

If there was one thing I knew for sure as we drove to take you to see Santa for the first time yesterday, it was that I’d be adding to your future therapy tab. You undoubtedly suffer from your mom’s neurosis, especially around the Holidays.

In an effort to avoid the influenza infused crowds at the mall, we opted for Bass Pro Shop, naively thinking it was our little known secret that the man in red made his appearance among tackle and hunting supplies.

45 minutes later in a line with screaming children (thankful you don’t make noise) we came to the conclusion that the secret was out and perhaps the mall, which was much closer than this over sized testosterone-filled Mecca, would have been a better choice.

We had very low expectations for the Santa experience (after what happened last year I wasn’t going to make that mistake again) so of course we were not dismayed when you kicked and screamed (once again…very thankful you are not audible..) when we approached the jolly breaded man. The photographer’s assistant (weren’t they supposed to be elves? I suppose if anything sported pointy ears in this habitat they might be shot and skinned) reassured me not to worry and perhaps Mrs. Clause could hold you. While we knew this would still induced tears, it was probably better than having you decannulate on Santa's lap.

When your turn finally arrived I quickly passed you off to Santa who looked at me like I must have been out of my mind…all the while I was thinking “you’ve got it easy Kris, we could have brought the vent.” He mumbled something to Mrs. Clause, who got up from her perch and headed to a room in the back. Apparently option A was no longer available. By the looks of things option B wasn’t any better, as you were in full tantrum mode at the point. I quickly learned that option C wasn’t ideal either….Mr. C. patted his knee, gave me a wink, and told me to sit on his lap. I hesitated, looked for your dad (who was fumbling with the camera, apparently the memory was full and he was quickly trying to delete photos) I looked at creepy Clause again, who was grinning ear to ear as he confided in me that he had “locked Mrs. Clause in the back,” and I quickly realized that you were not the one who was going to need therapy for this, but that this encounter with dirty Santa would earn me a few sessions on the coach as well.

And before I knew it, it was over. Well, at least we’d get some funny pictures for the blog, I thought. These pics would certainly make Halloween look like a dress rehearsal. When I mentioned this to your dad, who was still fumbling with the camera, he admitted that he didn’t get any. And as it turned out the generic “free-but-we’ll-guilt-you-get-into-buying-the-complete-package” photo was all we had. And you know what? It wasn’t that bad. The theatrics didn’t even come through. All that drama for nothing.

Feeling disappointed (and violated) that we didn’t get pictures of you by yourself, as we walked away I gave your dad my best doe eyed look (I had plenty of practice starring at all the mounted carcasses while in line) and mentioned that maybe we could swing by the mall for another shot…..afraid to answer, his eyes begged for mercy…..and that’s when I knew that the therapy tab had come to three.

Here are the fruits of our labor.....

Whoa Buddy, watch those hands! The only thing creepier than pervy Santa is the stuffed dear in the back (there are some things I will never understand...) And don't worry I did not give St. Nick the pleasure....I strategically hovered above his already defiled lap....this Christmas I will be looking forward to the coal. ;)

Wednesday Update (and that's as original as this title is going to get)

2008-12-08T19:11:00.009-07:00

OK...my recycled post bought me a few days..realizing it's Wednesday if I don't post soon I might be banned from Barnes and Nobel. ;) As always, lot's of stuff I want to say to Faith...but not enough energy to do it. So I thought I'd take this opportunity to update you all on some general stuff. I don't mention a lot of things on this blog because I don't want to sound monotonous to the people I talk about this stuff with on a day to day basis. But then it occurred to me that there are a bunch of you who I don't get to talk to in person, thus I think an update is in order.

Nursing:

As you may or may not know nursing has been a thorn in our side for the past several months. I am hesitant to write about it because I don't want to offend any of our past and present home care nurses. As you know Faith requires skilled nursing care. I cannot tell you the number of times people ask me why we can't just hire a nanny...I'm not even going to go into the explanation of why that's not a possibility (once again..don't have the energy) but long and short it's not an option. So private duty nursing IS our childcare, which has been very stressful with seamlessly revolving door the nature of the business seems to have. A few months ago we panicked when we thought we were without a day nurse but to our relief the agency sent out a temporary person who we REALLY like. She's ours until they find a replacement, and as with this nature of the business it is probably going to be a while until they do. Which in this case is very good news. I cannot tell you the relief we feel when we are at work and we know Faith is in good hands. I hope this one is a keeper!

Sleep:

When people ask me about how Faith is sleeping I never know how to answer the question. Compared to where she was a few months ago she is sleeping better. Compared to what a child her age should be sleeping, it's still a huge issue. She no longer bangs her head on the crib rails for hours (we solved that problem by taking the crib away and she now sleeps on a mattress on the floor). Faith never seems to get into an REM cycle. The only way I can explain it is that she is just "touchy" and restless. We gave up on night nursing because it was more trouble than it was worth, so Brian and I take turns sleeping next to her in the room. I just wish we knew why she is so restless at night. And I really wish we had some prescribed medication that could just take the edge off (hint, hint).

When Faith is sick (which she is, yet again) the nights are horrendous. Last night she slept about 2 hours total...(thanks to Benadryl finally kicking in) these nights are difficult because she requires lots of suctioning and nothing seems to soothe her.

Illness:

Following her brief hospital stay, Faith was prescribed two different antibiotics. She just finished them up this past Sunday and is sick again. This time it's with an increased amount of secretions which just isn't fun for anyone involved. I cannot even count on one hand the number of weeks she's been well in the past few months. Faith looks healthy (and in some ways she is) but she still has very fragile lungs and germs have instant access to them (through the trach). So needless to say it's going to be a long winter.

Hmmm...am I missing anything? I think that's about it.

We're just hustling and bustling around trying to get ready for the Holidays. I'd write more but right now there are cards to be addressed, lunches to pack, and a little (semi) sleepy girl (make that two...) who is ready for the sugar plums to dance about her head...(let's pray these are the extra sleepy kind.) ;P

Thanks for checking in,
Brain and Jen

2008-12-05T13:39:00.009-07:00

I was patiently reminded this week that there are in fact people who read this blog, and yet again I've let it fall by the wayside. No, my excuse is not chasing after a toddler on a vent this time. Among my alibis this go around is having been held hostage by a coven of teenage vampires for the past 7 days. Fortunately for my friends and family that chapter of my life has officially ended (quite literally..sniff,sniff) so back to blogging I go.

I wrote the following letter to Faith a few weeks ago. I was hesitant to post it, because it is not as timely as it was when I originally wrote it. I came to the conclusion that it didn't really matter, and it might just buy me some more time before I have to write another post. ;)

Thanks for the patience and persistence, my friends.

I promise, all is well in the Reming household (now if I could just dig myself out of this laundry pile).

******************************************************************
The original post can be found here, but here's the copy and pasted version (warning; formatting problems abound, but I am too lazy to sort them out!)

"I will walk by Faith, even when I cannot see, because this broken road prepares your will for me." -Jeremy Camp

Dear Faith,

Like most medically complex kids, you are a frequent flyer at doctors office. I have never been consistent about keeping up with a day timer, but with all your various appointments I've had to learn to use one. Two BIG appointments this week; I like to refer to them as the crystal ball appointments. OK..not really...I used to thing that a visit to the opthamologist (eye doctor) and ENT (Ear, Noes, and Throat) were a gauge for what the coming years will bring us. Now I know better, however I do get a little bit anxious when I know these two "biggies" are coming.

Yesterday was your opthamology appointment. I was looking forward to this appointment because it was a fresh start. We have been very blessed with WONDERFUL doctors who have cared for you. We are very fortunate to live in a place where such great care is easily accessible. The one area I feel we have not had very much luck is finding an eye doctor who not only understands what is going on with your vision but can articulately explain it to us. So when we heard your eye doc. at Children's was leaving and the earliest they could get us in with anyone knew was NEXT April I knew it was time to make a change. Fortunately I knew who to call and they referred me to a doctors who specialize in kids with vision loss.

Although the appointment was grueling 4 hours (why we were the last patient seen but we got there at 2:45pm I don't know...very frustrating..but typical..)long it was informative.

The new doc. did not have any records of your past eye exams and I gave him very limited information for the purpose of wanting an unbiased opinion. In a weird, twisted way I was comforted that he had the same diagnosis you received in April 2007 after undergoing two eye surgeries. He used terms I had heard before; scarring, macula dragging, Monocular Exotropia, Malignant Myopia......Obviously he knew what he was talking about. He confirmed what we already new about your left eye.....so eloquently articulating that the eye is "trashed..." aka blind. He was very apologetic....I laughed, thanking him for his sincerity but reiterating the fact that we have had a long road and are WAY over the fact that our daughter is legally blind.

Interestingly he found that your glasses prescription for the right eye was WAY off. This did not surprise me in the least. You have about a 4 foot field of vision with your glasses. He said either the last doc was way off in prescribing the strength, or that eye has gotten progressively worse within the past 3 months. While we do know that your vision can deteriorate, based upon the amount of this this doc spent testing your eyes vs. your previous exam, I think it was the former. So he doubled your the strength (from -4.0 to -8.0) and excitedly told us how this will open up a whole new world for you.

I will never forget when I first received glasses when I was in grade school. The world as I knew it did change. I didn't know it was possible to actually see when the teacher was writing on the board, or read street signs while riding in a car (I was finally a contender in the "find this letter on a sign..." car game, alright!).

I hope your world opens up just as mine did. You compensate so well for your vision loss. Most people don't even realize that you cannot see very well. Your hearing is impeccable and the rest of your senses are always on alert. You are so comfortable with the little rectangle rug you spend most of your day on; you know where to look when you hear someone at the door, you know where the dogs are coming from when there is swish of the doggy door, and you instantly smile when you hear a familiar voice....all of this without being able to see.

Most of the time we forget that you cannot see- I think this is our gift to you. While we take the suggestions from your vision therapist, we treat you as if your vision was 20/20.

It is when we are in the outside world, where you are not familiar with your surroundings, that we notice how much your vision limits you. On a recent shopping trip we not only noticed how disconjugate your eyes were but how you did not recognize us when we stood only a few feet away from you.

Although the world may seem like a dark unfamiliar place, you will learn to map it just like you have your rectangular rug. Never forget that you are a light to this world and have taught us all to see in ways we never thought imaginable.

So go out my brave little girl and let YOUR light shine,

Love you,

Mommy & Daddy too

Free at last!

2008-11-25T07:42:00.009-07:00

As if we didn't have enough pictures of Faith in the hospital....

Can we say Deja'vu?- "Wait a minute....this is all a little too familiar..."

Oh I know this place! Ok now I am feeling right at home!

Just wanted to give you a quick update that we are home from the hospital! Between not sleeping, work, and getting all of Faith's new orders straightened out for our nursing agency, finding time to blog has been at the bottom of a long list of things to do this week.

Thanksgiving break (which starts today at 3:05...and no I'm not counting... ;) ) couldn't have come at a better time. We'll spend tomorrow looking for a new car....sounds like fun but I think I'd rather listen to nails sliding down a chalkboard all day (don't quote me on that though....). After 5 years of good up keep and responsible stewardship (whatever that means) we paid off our "family car" this summer. Only to have it totaled in a car accident (that was not my fault) a few weeks ago.

OK well enough of our drama....Faith is doing good. She's pretty much back to her little spunky self. If only we were that resilient!

If I don't post until then, have a WONDERFUL Thanksgiving everyone!

Brian and Jen :)

Update

2008-11-22T20:58:00.006-07:00

Faith is doing MUCH better. What a difference 24 hours can make- on both sides of the day. Thursday night she was doing fine, morning came and she was not herself. As the hours progressed she began to worsen. We called Faith's pulmonary doc. and he suggested we go in to the emergency department. Since we already had an appointment the following day at the hospital (yes, on a Saturday) we thought we could wait it out. When she started turning colors we gave in and decided it was time to take her in.

So we here are. Good news is we are out of the PICU and back in our old room on the 8th floor. Faith's is still on higher vent settings (but off of the more powerful vent), and receiving a double dose of IV antibiotics to cover whatever junk she is growing. The good news is she is back to her spunky self (minus a trach full of blood tonight. And no, we have not been suctioning too much, in fact she's only been suctioned once today). Our hope is that she will be discharged tomorrow. A two day hospital stay? We'll take it.

I guess Faith just needed to visit her extended family for the Holidays. This all could have been a lot worse- it was pretty convenient it all happened on the weekend, and we were among familiar faces everywhere we turned. Friday night in the PICU, our nurse was one of Faith's primary night nurses from a year ago and the respiratory therapist on duty for the day was an RT we knew from St. Joe's. Of course we were among friends on the floor including one of Faith's primary nurses who took care of her for the 8 months she was in this room, and our favorite CA was here as well.

It's pretty surreal sitting in room 827 tonight. As you know, Faith was the first tenant in this room. The holes are still in the wall where her monthly calendar hung, a paperclip that held her butterfly kite is still hanging from a ceiling tile, and the butterfly I drew under one of the shelves with Faith's initials is still there. While our markings are still in this room a lot has changed since then. Our little girl no longer just lays in her crib unaware and unresponsive, nor sits on the floor, self-stiming, barely able to hold herself up. We had no idea how much she had shut down during those months until we saw her transform at home.

She is so aware now. She fights the doctors when they put their stethoscopes to her chest and challenges anyone who dares to suction her, with her IV fisted hand. Gone are the days where she would just lay lifeless during a blood draw.

She knows there is a world beyond these hospital walls and she knows she doesn't belong here. And we know this too. Eight months ago taking Faith home was terrifying. Last night when we arrived in the ED our nurse nervously asked us if Faith always looked this bad because "she looks terrible and you are both so calm.."

Yes, she did look terrible but we knew she would be OK. We knew she was in good hands, ours included. What a difference 24 hours makes...what a difference shedding one's cocoon can bring.

In the words of Hans Christian Anderson, "Just living is not enough," said the butterfly "one must have sunshine, freedom and a little flower."

Thank you for all of the well wishes.

Here's to our next update being from our little flower; home.
Jen and Brian

Welcome to Respiratory Season!

2008-11-21T21:27:00.003-07:00

Can you guess where we are???

Y'up. We're at our second home, the hospital.

Faith took a turn for the worse today and continued to go downhill respiratory wise. She was cranky, dusky, and really working to breathe.

She is normally on 1/2 liter of oxygen sating 98%- she is now requiring twice the amount (1 liter) and in the low 90's (which isn't bad..but not herself...) we've increased her vent settings and she's still really working to breathe. She is now receiving IV antibiotics....so we're bunkering down for the weekend.

Right now we are in the Emergency Deparment waiting for a room in the PICU.

Lot's of other things to say....but too tired explain it all.

We'll keep you updated.

J&B

Eye update

2008-11-20T13:48:00.012-07:00

"I will walk by Faith, even when I cannot see, because this broken road prepares your will for me." -Jeremy Camp

Dear Faith,

Although the appointment was grueling 4 hours (why we were the last patient seen but we got there at 2:45pm I don't know...very frustrating..but typical..)long it was informative.

The new doc. did not have any records of your past eye exams and I gave him very limited information for the purpose of wanting an unbiased opinion. In a weird, twisted way I was comforted that he had the same diagnosis you received in April 2007 after undergoing two eye surgeries. He used terms I had heard before; scarring, macula dragging, Monocular Exotropia, Malignant Myopia......Obviously he knew what he was talking about. He confirmed what we already new about your left eye.....so eloquently articulating that the eye is "trashed..." aka blind. He was very apologetic....I laughed, thanking him for his sincerity but reiterating the fact that we have had a long road and are WAY over the fact that our daughter is legally blind.

Interestingly he found that your glasses prescription for the right eye was WAY off. This did not surprise me in the least. You have about a 4 foot field of vision with your glasses. He said either the last doc was way off in prescribing the strength, or that eye has gotten progressively worse within the past 3 months. While we do know that your vision can deteriorate, based upon the amount of this this doc spent testing your eyes vs. your previous exam, I think it was the former. So he doubled your the strength (from -4.0 to -8.0) and excitedly told us how this will open up a whole new world for you.

I will never forget when I first received glasses when I was in grade school. The world as I knew it did change. I didn't know it was possible to actually see when the teacher was writing on the board, or read street signs while riding in a car (I was finally a contender in the "find this letter on a sign..." car game, alright!).

I hope your world opens up just as mine did. You compensate so well for your vision loss. Most people don't even realize that you cannot see very well. Your hearing is impeccable and the rest of your senses are always on alert. You are so comfortable with the little rectangle rug you spend most of your day on; you know where to look when you hear someone at the door, you know where the dogs are coming from when there is swish of the doggy door, and you instantly smile when you hear a familiar voice....all of this without being able to see.

Most of the time we forget that you cannot see- I think this is our gift to you. While we take the suggestions from your vision therapist, we treat you as if your vision was 20/20.

It is when we are in the outside world, where you are not familiar with your surroundings, that we notice how much your vision limits you. On a recent shopping trip we not only noticed how disconjugate your eyes were but how you did not recognize us when we stood only a few feet away from you.

Although the world may seem like a dark unfamiliar place, you will learn to map it just like you have your rectangular rug. Never forget that you are a light to this world and have taught us all to see in ways we never thought imaginable.

So go out my brave little girl and let YOUR light shine,

Love you,

Mommy & Daddy too

Keeping us on our toes...

2008-11-14T14:53:00.010-07:00

Ok...so I've fallen off the blog-o-sphere and I've been putting off getting back on. Truth be told I am too exhausted to write any letters and have been trying to find away to update all of YOU without coming across passive aggressive (if that makes sense).

Faith is now a full time job x's 2. Like a typical toddler, she is constantly on the move. However, unlike a typical toddler she is attached to a machine that leaves her with a 6 foot radius to travel.

The result? Beep...beep....beeeeeeeeeeeeeeeeep.

Boy, I wish we had hardwood floors! We are constantly chasing her around our small, crowded living room. Sometimes I ignore the beeps. A few days ago I was washing dishes and heard her disconnect. Since she is not entirely dependant on the vent I quickly washed the last dish and went to reconnect her. To my surprise she was inches away from the stairs leading down to the basement. Yesterday, I put her in front of the TV and ran downstairs to the basement to switch over the laundry. I was gone for maybe 60 seconds- I came up the stairs and guess who greeted me at the top? Y'up...can you say baby gate? I will admit our house is far from baby proofed- up until now we haven't had to.

I will never complain that all my time is now spent chasing Faith around. Her mobility is a gift. If you ever do hear me complain please remind me of this! So if you don't hear from me for a while you will know what I am doing. ;)

So off to Target I must go to stock up on all the baby safety items I thought we'd never need. Retail therapy is what we call it in our family...usually it comes in the form of a new pair of shoes or handbag...tonight it's a baby gate and an outlet protector that make a pair of Manolo's look like flip flops from Wal-Mart. ;)

Thanks for being patient with us!

Jen & Brian

PS: Yes, many of you noticed that Faith is sometimes ventless. She can come off of the vent for about an hour each day. You better bet we make this time count. When she is off we are outside, upstairs, and in all the parts of the house she cannot normally go. While it is WORLDS away from the ventilator she is still attached to oxygen tubing (something she will need far beyond when the vent is gone). As you can imagine she gets quite a work out being vent-free. You can tell she "works" to breathe and her lungs sound pretty wheezy.

*********************************************************

PSS: To my fam. and friends: Although I am posting this now I wrote this Friday morning (pre-accident) so don't worry, I wasn't running around to Target this weekend. ;)