D-Day...Delivery Day, that is

 Abby's luxury suite in the NICU at Wome & Infants

 


Someone must have told Abby to show up a little early to make a good impression. My water broke at 1:52am, and it was the very dramatic type of gush you expect to see on TV.  I could feel it coming and rolled out of bed to what sounded like a waterfall.  I weighed myself when we got into triage- I’d lost over 4lbs of fluid.  Though I was in the midst of contractions and had soaking wet pants, even then I found myself in significantly more comfort than I was for the majority of my third trimester J  So far, YAY LABOR!

Connor's first visit with Abby 11/12/2010

                                                     

I won’t get into the details of it, but my c-section could have gone better. I’ve had one before; I know what it’s supposed to feel like, and I felt WAY more than I should have.  Luckily, my awesome OB (who couldn’t perform the surgery since we went in early) and my recovery nurse, Daria, (whom Matt and I know form High School, of course, because it’s RI afterall!) took great care of me afterwards and got my pain meds to where they should have been all along.  Thank you Dr. Brousseau and Daria!

We get two basic questions from people:

1. How is she doing?

2. What does she look like?

How is she doing?  That’s up for debate.  As have many other HPE parents been told, Abby’s condition is not compatible with life and we should expect not too much more than a week with her.  It could be prolonged with machines and invasive procedures, but nothing could be cured.  Her symptoms would merely be managed for a period of time until she passes.  I know kiddos beat these statistics all the time, but in the case she doesn’t, I don’t want to put her through anything unnecessary.

Our plan of care at this point is for comfort.  We want Abby enjoy what time she has with us by experiencing the warmth of our skin as she’s held. 

 

Abby's Baptism 11/13/2010

What does she look like?  Well, I’ll be descriptive here.  I didn’t get to see Abby for quite a while when she was born.  It was well over an hour before I saw her, and I was worried.  Matt came into recovery to “prepare me” for what her condition was.  Initially, Abby was a little shocking to see.  Abby’s head was indeed large.  Not just slightly oversized; she has macrocephaly.  Her poor brain had so much fluid in place of brain tissue that the skull plates had actually shifted down to the sides.  This also pushed her ears lower, down close to her jaw line.  It makes her look like she has big sweet soft cheeks to me J  She has a severe cleft lip and palate, which have an effect on her nose.  It almost looks like she has three nostrils.  And here’s the biggie, the part that breaks my heart when I look at her.  Abby’s eyes are widely placed, and her right eye is swollen shut.  It looks like there’s a big swollen bruise underneath it, and her left eye is just closed with no globe inside.  The rest of her body, I should point out, is as soft and tiny and perfect as any other newborn you will ever find.

What I just described may seem devastating to you; I’m aware that someone described her as being “severely deformed”, which I don’t agree with.  But do you know what we call her?  Our gorgeous girl!  That’s what she is, in fact it’s the only words that even come to mind when I go to describe her.  She smells beautiful, and her every inch of skin is so soft to touch.  I can cry thinking about it right now, how beautiful she is when I look at her and how soft her skin is when I rub my face against it to kiss her.  Matt and I couldn’t give her enough hugs and kisses if we tried.  I could sit with her snuggling against my chest indefinitely. 

My beautiful Abby

I’m being discharged Tuesday morning, but we’re not sure when or if Abby will be giving up her diggs in the NICU.  Her nurses are fantastic, and we have a wonderful Neonatal team right now.  We’re still waiting for some tests to be officially diagnose her as having semi-lobar HPE (I believe they are also putting the MIHV label on it too).  The genetics team just ran a Fish (did I spell that correctly) and will now do a microarray to determine the cause of the HPE and see what this means for me and Matt having children in the future.  We’ll find all that out later in the week.

Thank you to everyone who sent flowers, food, cards and warm wishes our way.  We’re all very happy right now.  I’ll keep you posted when we have more concrete news about Abby’s condition.  For now Connor is still really excited to be her big brother.  He would just like to have mommy back home for a few nights!

Love,

Matt & DG