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.


Marissa said...

Wow Jen, you blow me away!

I never thought of someone become emotionally attached to the ventilator, especially not the parent. I don't know why I never thought of it, because it makes so much sense. Of course you would become attached to it, it has saved Faith's life and it has given her life.

While I have no idea about the vent (other than Marissa's NICU experience), I sort of feel that way about the trach itself. I hated it at first. Couldn't wait to be rid of it forever. But then I became accustomed to it. And I realized the trach saved her life, allowed her to come home and allowed her to develop and thrive. It is her safe, stable airway. And now, the thought of decan scares me. Crazy how that works, huh?

Maybe I'll carry an old trach in my pocket for the rest of my life, as a security blanket. Or better yet, make a necklace out of one!! :) You had me cracking up at the thought of the vent buried 6 feet under in your backyard!!

Thanks for posting this.


Michelle said...

Isn't it funny how we feel the need to apologize or justify how we feel when we know others may be having something "worse" to deal with. I think your post makes perfectly good sense. I'm glad you could share and I echo Alicia's thoughts about the much anxiety...

Hope said...

It makes total sense that you are emotionally attached to the vent. It's a crutch in a way. It shows how very much you love Faith. If you need help digging the hole to bury it, let me know!

Ann said...

Jen, you are awesome. I think it's a shame you can't bury that F&^%$% (life-saving) vent in your back yard.

Love ya'

Janay said...

I know how you feel about the vent. It provides a bit of comfort & security because you can hear your child breathing through the machine and if they decide not to the machine will take over. I had a little bit of hard time when Milo was no longer on the vent at night because the trach collar machine makes so much noise I can't hear him take a breath. I had to learn to rely on the pulse ox, when that goes away I'm going to have an even bigger problem with anxiety :0) One day in the future you will find yourself asking to get the machine out of your house because it is just taking up valuable real estate in the bedroom and hasn't been used in many months. I did last month and Dr. D laughed at me so it's still sitting there collecting dust and I watch the $$$ fly out the window...