A Week Out

It feels as though this exact time last week was a million years ago.  One week ago I sat straight up in our bed staring at Presley crying my eyes out in fear of what would happen in the next several hours.  Today, I sit staring at the miracle we were given and how lucky we have been.
I had heard about his feeling you get as a loved one is going through such a difficult time. It is a feeling of calmness that you cannot begin to explain to others when in reality you should be freaking out.  I think I felt that while in PICU.  It could have been a mixture of utter exhaustion, the staff's loving care, the fact that Presley did do well in surgery, but mainly I believe it is because of the outpouring of support and prayers our family, friends, friends of friends, and pure strangers sent our way.

Before Presley, I use to cringe when people would make a reference to having children and "not understanding" until you have one.  That whole comparison really would just piss me off like I was not a person capable of feeling a certain type of love.  It is the epitome of cliche, but it is true.  The love you have for your child is a feeling like no one can explain until you have one.  I do however have a mom confession.  Some people say that you get that feeling while you are pregnant.  That feeling of attachment and pure love for something you haven't even seen or met.  I didn't have that.  I tried to, I even acted as though I did, but I didn't.  Don't get me wrong, I loved the Presley in my belly, but I didn't know her.  I loved the thought of her and the plans I would make for her future, but I honestly didn't have that intense feeling of love until I held her for the first time.  If possible, my love for Presley has doubled in the last half dozen days.  She is such a strong person.  She endured more medical attention in two months of her life than her mom and dad combined.  She is our little cranio trooper.

I mentioned a few blogs back about being somewhat pessimistic.  I hate to admit it, but it is what people with worrying characteristics have to carry.  I feel as though our journey at ACH was just too good to be true.  I may be going through some post traumatic stress situation, but I keep holding my breath like another bomb is going to drop on us.  Thus, why I am typing this blog at 1am.  Presley was a champ during her surgery.  She went in, anesthesia took a little longer than expected-no biggie, they performed the CVR, she woke up, she lost some blood-it resolved, she recovered, we went home.  Minus a million small details, that was her experience.  We went home at the absolute minimum a patient that requires that surgery can be discharged.  She took infants Tylenol for 36 hours after we came home and then she was fine.  I am not downplaying her surgery or stay at ACH at all, it was an emotional blur, but she is the same Presley.  My mind is blown at how she is crawling, pulling up on things, babbling, smiling, growing more teeth, and her newest trick; clicking her tongue.  I guess I was expecting the absolute worst and received the absolute best.  Thankful is not near the word we are for how she recovered, but it just leaves a tiny bit of fear that it is not over.  Now I pray that her follow up on Friday is just as smooth.  I pray really really hard.  Fingers crossed I am just a crazy worried momma.

I have learned a great deal from this whole experience.  I am positive that my greatest strength after it all is the gain of empathy.  My heart breaks for the parents who are at ACH, or any hospital for extended stays.  A niece of a friend who celebrated her first birthday at ACH, the toddler who was next door to us in PICU, the child who shared a room with us in the step down rooms who had been there a month monitoring her seizures, families who are in an out trying to find answers for their kids delays, and especially the ones who never leave.  Morbid moment, but I am at awe of the strength some parents have to overcome such an obstacle.  I truly feel for those loved ones in the waiting rooms or the zombie-like parents walking the halls.   It is a feeling I wish upon nobody and pray we do not have to endure again.

The doctors, the nurses, and the ACH staff, are amazing. That is all I can utter, simply amazing.  I am annoyingly hard to please when it comes to intellectual staff and good service at a hospital.  Point for proof, I was eight months pregnant and nearly ran a nurse out of my dad's room after his total hip replacement because she was incompetent for his care.  ACH would have my recommendation any day.  I trusted them with my daughter's life and they have my utmost gratitude for her care while we were there.

There is no way to list or give adequate thanks for everyone who has touched our lives through this journey.  Prayer is powerful and we have proof.  A prayer promise is something so small that is huge in the life of another.  We are forever thankful for all the prayers that people took time to say.  We truly have the best family and friends anyone can ask for.  I know I would have never made it without each and every uplifting card, text, Facebook status, call, gift, meal, and visit from our closest loved ones.  My dad has mentioned on several occasions how I have the most wonderful friends.  I remember him saying that at my wedding, when Presley was born, and this past week he made note of it again.  He is right, he is actually always right, I couldn't have made it without them.

Follow up appointment is on Friday.  We get fitted for the helmet and hear what/where to go next.  I will update after that visit.

I have a little something up my sleeve.  It is not definite yet, it may not even work out.....but maybe things do happen for a reason.