How is Zara?

It’s the question of the week and one I really don’t know how to answer.

Physically:

She seems to be doing well.  She just started crawling a week prior to her hospitalization and she is now happily exploring our house, digging her little toes out against the floor and pushing herself along.  Aside from the fact that she is still helpless as a fish on her back, you’d never guess she has any issues.  Unless you know.  David and I still see infrequent (what we call) mini-spasms.  They aren’t the clear arm raised jerks, but tiny one to two second jerks that sometimes only include her shoulder and head.  Other times her hands come forward and she stares and just like that they’re gone.  I would COMPLETELY think I was imagining things if it wasn’t for the fact that whenever we’re in the same room when they happen, our eyes meet and we know we saw the exact same thing.  Is it seizure activity? We don’t know.  David keeps saying we need to catch it on video but they are so fleeting and not clustered and it feels as though it would be impossible to capture.

Emotionally:

Zara is was traumatized. On our way home from Johns Hopkins Tuesday night we found out a good friend of mine lost her father in a farm accident.  Zara was emotionally very upset from her hospitalization and had a tough time believing anything would ever be normal.  Every time I laid her back to change her diaper she screamed in terror.  She wanted to be held all the time and just seemed very insecure.  On Saturday morning she finally started playing happily on the floor with the boys ….. an hour before she and I headed out the door to Alberta for the funeral.  Again, we were gone for four days and this time without her beloved daddy.  It is impossible to explain to an eight month old what is going on and I watched sadly as our sweet tempered baby girl who rarely cried and mostly did so quietly through closed lips morphed into a baby girl who threw little temper tantrums over anything.

Our return was even harder than the first.  Her little world had been rocked so hard.  We kept on loving her and holding her as much as possible.  Surely the same things that helped her know she was loved and secure would help to restore her little routine of normalcy.  On Friday David was home to work on the house and she settled back down into her sweet self.  I’ve heard an occasional mad exclamation, but they are definitely lessening and I’m hoping her sweet self is back to stay.

Her future:

We are so very, very grateful to not have a diagnosis at this point.  It’s one of those strange cases where the unknown is nicer than the known.  I don’t know when I’ve experienced so many up and downs in such a short amount of time.

Friday night: “Have her in the ER by 5. This looks like infantile spasms.” Down. Around 9, “Her EEG is clear.”  Up.  At 11 from the neurology resident: “Just because her EEG is clear doesn’t mean she doesn’t have infantile spasms.” Down.

Saturday morning: “We are fairly certain this is not infantile spasms.” Up.

Monday morning: “Looks great, you can go home and watch her.” WAY UP. At 12, “We saw something and want to watch her longer.” Down.

Tuesday morning: “Looks great, you can go home, and we’ll follow up in a few months.” Up. Around 12, the social worker stops me to say, “So I see they’re sending her home on Keppra and it’s very expensive.  Would you like me to print out some vouchers?” Me (as my heart plummets to my feet): “Um, sure.” Return to room and google keppra.  Way down. An hour later, discharge papers and no keppra.  Odd communication error. WAY UP.

Thursday afternoon I took her to see her local pediatrician for the prescribed follow up and he stopped me in the hallway. “Oh hey, I was just talking to the neurology resident and they want her to come back in for an MRI.” WAY DOWN. When will this ever end? He checked her over and thought her tone was low and wants her followed by Infant and Toddler Development.  I’m quite sure she was just all chilled out because her tone feels quite like any other baby I’ve held so that shouldn’t take long.

Friday morning call the neurology clinic and they have no MRI orders in the computer. Friday afternoon get a call from the neurologist who is out of town for the weekend (did someone say dedication??) who assured me they don’t feel she needs an MRI and we can keep watching her and follow up in a few months. WAY UP.

Moral of the story: In the middle of a health care crisis, store your emotions in the suitcase and let them come out after it’s aaaaaaaaallll completely decided. Otherwise you may or may not be exhausted.  How would I know?

So that’s where we’re at.  Zara has a follow up appointment with neurology in January.  Until then, we’ll watch. And hope. And pray. And wait.

She’s been so loved on all her life, she’d have a right to feel smothered.  But now, every snuggle and every kiss is that much more precious.  Every time she sees me, grins, and comes crawling toward me on high speed, I melt a little more as a teeny twinge of what could be pings in my abdomen.

I sniff her neck a million times and breathe deeply no matter if she’s just bathed and smelling like a heavenly angel as Liam describes it or if she stinks like the copious amounts of baby drool that are happening these toothless days.

For now, she’s here.  So alive. So present. So real. So precious.  So engaged.  So mostly without cause for concern.

Best of all, we’re all at home together.

We really don’t know the next chapter to Zara’s story, but whether or not it gets written the way we hope, we know she will always be so very, very loved.

• ← Zara is being discharged!
• Because God is always good →