Wednesday, April 22, 2009

Wordlessy Wednesday

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.

Friday, April 17, 2009


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 (, 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. :)

Monday, April 13, 2009

Funny Bunny

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!

Thursday, April 9, 2009


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.

Friday, April 3, 2009


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 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.