A's Update 1 (11/7/13) - One Surgery Down

Alright so I figured I'd finally carve out some time for a broader update for everyone since the scope of those following Abriana's story is far greater then I can possibly fathom (as indicated previously).

First off I give you one of my favorite pictures.  This is Abriana holding THE dental floss.  For those who find this incredibly strange I encourage you to head back to this post where I explain the dental floss :-)

The Birth Week

So the last entry I had was my thank you note to everyone just a few days before we went to the hospital for our c-section.  We were scheduled for a Friday morning C-section.  So Thursday night we decided to spoil ourselves a little and head over to St. Pete and get a room in a really nice hotel overlooking the water and have a relaxing evening as our childless era came to an end.  This was an amazing idea.  The hotel was perfect, the rooftop restaurant was fantastic, the food was insane, the view was gorgeous, and the company matched it all.  Excellent start.

Friday morning we went to the hospital and got checked in.  We were the first c-section of the day so that made it pretty nice that we didn't have to wait, we pretty much set the pace for the day.  For those who have never had a c-section or experienced one it is quite a surreal experience, even from my limited male view.  Here we are one night having a relaxing night out and then bam next morning having a baby plucked out.  I would say convenience is the strongest argument for having a c-section (even if we didn't have a choice).  Once Margaret was prepped they let me into the O.R. with her and I sat down by her head and we started talking, I was updating her with who was here, on their way, etc. and next thing I know I hear "Dad, is your camera ready here she comes" (wait, WHAT?!).

And just like that we had a kid and she was crying.  The crying portion was incredibly momentous to us as throughout this journey as that was hurdle #1 for Abriana.  Breathe.

Her oxygen levels were low so they had to put her on oxygen right away and skip getting to show her off to the waiting room and take her straight to the NICU for her further assessments.  She rocked an 8/8 APGAR score and met every doctors satisfaction that came to see her.  I am pretty sure we saw a doctor from every wing of the hospital, except maybe oncology, and I am cool with that.

All said and done we were in the NICU for exactly 1 week.  It was a week full of many ups and downs as we had good news and we had realistic news about keeping our hopes grounded about her prognosis.  Specifically the neurology department reminding us that she was at high risk for many neurological issues that only time would indicate if she has.  From seizures to developmental issues.  These are things only time, lots of time, will reveal.  However, her mom and I could not be held down by these reality checks because as those reality checks indicate what matters most is the here and right now, and here and right now we finally had THE kid we had been hoping and praying for for so long and we couldn't get enough of her.

The cardiologist did find two common issues with her heart, she was diagnosed with PDA, and ASD.  These are two common heart conditions in newborns that tend to take care of themselves and since she was/is not exhibiting any of the symptoms a followup echo with cardiology is scheduled in a few months time.

As we knew before birth she was most likely going to need to have a VP Shunt placed in her head to help with the extra fluid in her ventricles.  However, both neurosurgeons observed her and decided we didn't need to rush the surgery.  They'd rather we let her body adjust to life outside the womb, and let her get a little stronger before doing the surgery.  We had a followup scheduled with them in about a week and a half to re-assess the situation.

Home Life

As all new parents can tell you nothing, NOTHING, not a single word anyone can tell you can prepare you for that first night at home.  Yet, here I continue typing to tell you about ours.  It was so weird to be home.  It was weird to have a kid that wasn't attached to monitors and IV machines and heart rate monitors.  Those things had almost become a comfort blanket to us because at a quick glance we could know if our kid was still alive.  Until it was diaper changing time and immediately I did not miss having to juggle all the wires coming off of my kid.  That first night home I repeatedly had the thought "So, do we just sit here and watch her sleep at night?  Surely we don't put her down and BOTH go to sleep too right??"  Obviously I didn't actually believe we needed to watch her through the night, but it sure was how it felt at times.  However, rest assured, although no one can prepare you for that first night, things VERY quickly become routine and your apprehensions drop rapidly.

We were able to settle into a slight routine and I even went back to work early before we had our followup appointment with neurosurgery.  We noticed her encephalocele had been rather "stretched" feeling as of late but didn't think about it too  much.  Then the neurosurgeon saw it, "Oh wow." he said.

How about tomorrow?

Once the neurosurgeon saw how stretched her encephalocele had gotten it was quite clear her ventricles were not draining properly, furthermore an MRI revealed her ventricles had grown.  "So I think we need to put a shunt in, I definitely think it's time.  How about tomorrow?"  The question seemed so fast that I even chuckled when he said it to which he looked at me and said "No, I am serious.  How about tomorrow?".  Like I've said, we knew this surgery was most likely coming but man did it still have a way to gut check us.  Obviously we weren't going to get in the way so they called insurance and got everything squared away and before we knew it we were scheduled for surgery the next morning.

Brain Surgery #1

As many of you know it is expected for Abriana to have at least 2 brain surgery's within her first 6 months of being born.  We've known this as long as we've known of her condition.  Yet, surgery day came and it felt like nothing could have prepared us for the emotional battle of sending your kid off to surgery.  Of course we know "on paper" this is a very common surgery and one of the more basic ones for a neurosurgeon, but it's still brain surgery.  Sending an infant under general anesthesia is always more dangerous than an older child and inherently carries uncomfortable risks.  We knew she was in the best hands she could possibly be in and while that did bring some sense of peace there was still an unsettled feeling that only seeing my daughter waking up and recovering could heal.

The surgery went perfectly.  In fact, our neurosurgeon forgot that his resident wasn't available that day so he actually had the OTHER neurosurgeon scrub in with him for the surgery.  Yes, yes I will take that trade every time.  Even if it's complete overkill for the task at hand!

Recovery went spectacularly too.  Within 4 hours from the time we watched her go back she was done and eating again and not having any issues keeping her food down.  I simply cannot stress enough how much of a fighter this kid is.  It's inspiring.

So in a nutshell that's what's been happening in the world of Abriana since birth.  We've also had followups and since her surgery her shunt incision site has just about completely healed and the scar is about all that's left.  The incision in her stomach (see above link on shunt surgery) healed up very nicely as well.  Aces all around.  We've also had our first appointment with our physical therapist and he was extremely happy with what he saw for a 6 week old.  She has some homework but it's the same homework any 6 week old has, so far no special assignments for our special little girl.  Tomorrow we will meet with neurology (the developmental side of the neuroscience house) and see what they have to say about where she's at now developmentally.  These are the types of appointments we will be living with to keep track of progress and help understand any impact from her encephalocele.

From here we wait.  We have an appointment scheduled to meet with the plastic surgeon who will be working with the neurosurgeon for her encephalocele repair surgery.  Until we meet with him and he sees Abriana and gets to assess her we don't have a date on her next brain surgery.  We're hoping to get a timeframe nailed down though once we do meet with him.  So it's cruise control for now of just settling into our new life as a little family and loving all over this adorable little trooper.