“You can have insurance that’s ‘too good’: Julie Skinner Sutton’s Story

Thank you for your article about the "distressed babies."  Our daughter is now 10 weeks and one day old; her corrected gestational age is 36 weeks and one day.  

My husband and I joke that we are lucky he works for Verizon and not a smaller tech company.  We are still on a vent and looking at going home with a Tracy tube for 12-36 months.  

Your comment about pumping is dead on, I thought I was the only one who ever felt that way. Thank you.  I don't feel so alone suddenly.

Congrats on those 2 steps, no matter how small.

June 2015 Update:

I’ve still got some resentment from how things went with Marlowe all due to our insurance.

You see, you can have insurance that’s “too good”.  When that happens your local little hospital tries to keep you there because, frankly, they can bill.  If it becomes apparent that you REALLY need to go somewhere else they may still try to “keep it in the family.”  

Marlowe did great, for a while.  She was “ventillating beautifully” (yes, that’s a quote!) but every time we tried to get off the vent she wouldn’t make it. We we started asking if we needed specialists we were assured that “Baylor has the best.”  Essentially, the Lead Neo was going to send us to Downtown Dallas and our daughter would get a trach and go home.  But when I started asking deeper questions she got, well, nasty.  The thing is that Baylor DOESN’T have pediatric specialists and sub-specialists.  

We insisted that she be transferred to Cook Children’s in FTW and, suddenly, things changed.  We were asked (multiple times) why we waited to bring her.  The doctors at Baylor put in too big of an ET tube too many times and damaged my daughter’s trachea and subglottis. We’ve had multiple surgeries and, thanks in no part to the talent at Cook Children’s, Marlowe came home on room air after 173 days in the NICU.  She has a feeding tube (g-Button) because all that time on the vent resulted in her not learning to suck reflexively.  

The truth is that, today, she’s a happy, healthy 18 month old running after her puppy and learning to eat.  We went through hell to get her here, just like all NICU parents did.  We still struggle with eating, but drank form a straw for the first time last week.  She sings her ABC’s ALL DAY LONG (and I hear them in my sleep) —  but we failed the coloring portion of the Bailey Development Inventory (because who in the hell gives an 18 month old a crayon).  

I wouldn’t change a thing.  I would, however, (and I do) tell new NICU parents to get their kids to a children’s hospital if at all possible.  

-Julie Skinner Sutton