Monday, December 23, 2013

How To Feel

My daughter, Mallory, just celebrated her half birthday.  Never in my life has six months felt like such a short period of time.  I feel like it was just yesterday we were able to bring her home from the hospital.  And contributing to the quick feeling of time passing was the urgency at which we whisked her out of that hospital.  I look back at this email I sent in August:

"Hello Cindy,

I tried to get in touch with you late yesterday, but I figured you'd probably already gone for the day.  So, I just wanted to email you to give you kind of the run down of what it is we'd like to talk about.

What it comes down to is that we really want Mallory discharged.  We've been ready for her for a long time.  You guys have done a great job as a team teaching us and encouraging us that we can do this.  We've seen her at her best and her worst and have a very good understanding of what to expect from her and how to help her when she needs it.  You've provided us with every resource and support possible to help us take care of her and take care of the equipment required to take care of her.  Every test possible has been done to verify her health and I think there really isn't much more that can be done for her in the PICU right now other than to send her home and let her be with her family.  Mallory is who she is going to be and now she needs to be that at home.

I saw it on your face the other day.  I've seen it on the faces of everyone I talk to there.  Everyone wants to see our little girl come home.  And despite her set back on the 16th we are now advocating for her to get her home quickly.  I spent all day and night on the 15th and all day and night on the 16th with her.  I helped bag her when she had her episodes.  We've completed every task on the check list.  I don't know how much more we can prove ourselves capable of being her parents than that.  If the independent care is not absolutely required for her to come home, I believe our performance thus far should have proven ourselves very independent (just ask Mallory's day nurse on the 23rd how well we did with her trach change... he was surprised).  There are a few I's to dot and T's to cross but we are ready.  The hardest parts we have down pat and that's bagging a baby who doesn't want to breath and changing out that trach.  I even did an emergency change out on the 16th.  I can see making sure we know how to hook up and set up her equipment properly but you've given us a great resource, Paul at LifeTech, to help us if we have questions on anything.  

Can we please discuss expediting her discharge, especially since she doesn't have to meet a weight requirement?  Having her there is weighing on her, on Frank and I and on our five boys.  You guys have taught us how to be her doctors and nurses and now we just want to be her parents and her family.

Thank you and we look forward to talking with you soon,


Not many get to understand what it's like to not be able to bring your newborn home with you.  Even me.  I'd had five kids prior to Mallory.  All healthy, bouncing little babies, ready to come home and keep me up all night.  My husband and I had to learn how to care for a baby with a g-tube and a tracheostomy.  How to read apnea monitors and pulse oximeters.  We had to learn how to operate and troubleshoot a home ventilator.  She's got medical poles in her bedroom and medical supplies in a bay window cubby.  We try to make this as normal as possible but it's not always easy.

I spent and sometimes still spend so much time feeling like no one thinks I'm good enough for this job.  The job of taking care of Mallory.  A special needs baby.  When she's sick, she's sick for twice as long as a normal baby.  I have to carefully plan all of her feedings.  I've never been one to follow many rules.  I like to go with my gut and do what I feel.  Never have I felt my methods be under such scrutiny as with Mallory.  Despite all of that, I feel like I'm making good choices for my baby girl.

A lot of people look at me like I'm an expert.  Five kids?  Psshhhh…. piece of cake.  I know how to bathe, feed, clothe, comfort, schedule and love my babies.  I'm proud of it.  But all of this?  Baby number six?  Mallory?  Something unknown?  It's thrown me off balance.  Nothing up to this point in my life prepared me for this.  Even being a teen mom.  Nothing prepared me.

Mallory is here though.  She is.  She's home and thriving.  She looks at me with recognition and smiles.   She grabs at my husband's beard.  She loves us.  She loves her brothers.  She loves being here.  My Pfeiffer girl wasn't in the plan, but we love her so much that it's almost indescribable.

I look at her when I lay her down at night in her bed.  I look at her profile.  A profile that I expect to see a protruding forehead and abnormal features and all I can see is my daughter.  She's normal.  She's beautiful.  She looks just like her clone brothers!

Oh my gosh, and those eyelashes!  They are to die for!!!

The sweetest little lady bug around.  I love my Mallory.

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