Zara is being discharged!

Zara got hooked up to a continuous EEG with video monitoring Saturday night at bedtime.  She absolutely hates the process of being hooked up.  They scrub her scalp where the leads go, then put tons of goop on the electrode and puuuuuuuuush it against her head.  Of course, THEY say it doesn’t hurt.  It’s just cold and itchy. But babies don’t cry if it doesn’t hurt so I don’t believe them.  It took forEVER to get hooked up, but they were very careful and wanted us to distract her as much as possible.  I was showing Zara pictures and video clips of the boys and she was barely distracted.  Then suddenly we got to a close up picture of her with Liam.  She stared at him for a second before her arms started waving and waving and she gave a little cry of distress.  She started scratching at the screen, trying to reach him.  More cry of distress and her mouth went down to the screen as though surely she could feel him.  Oh, how she missed her brothers! The next picture she was sitting in her crib, surrounded by the little elephant crib bumper …. another cry of distress.  More arm waving.  Poor baby girl.  How we long to take you home.

It was another restless night of holding Zara on a hard couch only this time with the added benefit of knowing someone could watch all your awkward nighttime antics on video.  It wasn’t until well into it that I figured out they had sound with it and could hear everything we said.

Zara’s leads came loose throughout the night.  By seven she was missing a few and by noon they were completely gone so we tossed the EEG box on the bed.  It didn’t have any seizures either. 🙂 My parents picked up the boys and brought them to the hospital and what a happy reunion it was! Around 3, Neurology came back to hook Zara back up.  Motorcycle caps are the fashion of the day.

This time they didn’t scrub her since I’d just washed her hair so it wasn’t the loooooong drawn out process and she didn’t cry nearly as much.  They also threw her a box of leads to play with since she is so enchanted with cords and kept wanting to grab the ones they were using.

We had one more horrible blood draw to get through to confirm that Zara’s white count was really okay.  It felt so mean! Zara has been so normal with anything related to blood counts … no recent infections, nothing that should indicate any reason for her white count to be anything other than fine.  I agreed to do it if we could get warm packs on her for awhile first.  Saturday morning they got her labs with one stick because she was on IV fluids and they used warm packs. They totally agreed but phlebotomy breezed through the door before the nurse could even get in here.  We’ve had great nurses the entire time but our nurse on Sunday was by FAR my favorite.  They’ve all been fabulous about keeping things quiet and low key for her when she’s sleeping and they’ve all been kind and gentle.  Ellen was also very obviously Zara’s advocate.  She put the packs on quickly and told phlebotomy we needed to wait a little.  I asked if they can’t get someone else who is especially good with babies since she is notoriously such a terrible stick.  She said phlebotomy usually has to say they can’t get it.  I KNEW he wasn’t going to get it when I started to lie her back on the bed and he said, “Oh, she can just stay sitting up.” He probed and dug this way and that.  “I want to see the other side.”  Ellen said, “Only if Mom says yes.” I wanted to HUG her.  I told him he could stick her again but ONLY if he actually FELT something, not just thought he felt something. And we were going to lay her down flat on the bed so we could secure her arm better.  He didn’t see anything on the other side but went back over and claimed he was ready for her other elbow.  I watched in dismay as he dug this way, then that way, clearly NOT having a clue where her vein was.  He got a teeny flash and then nothing just like all the others had.  He kept pulling on the syringe way too hard and finally got a teeny bit of blood which looked very much as though he had blown the vein and was only collecting the blood that was gathering under her skin.  When the needle backed out and he looked as though he was going to stick it back in I said, “That’s enough.” It wasn’t a very quiet command either.

It was all just too much and I was completely done with needless suffering over inept attempts at blood draws.  I’m sure they’re fine most of the time but, PLEASE realize your limits and don’t keep digging on a BABY who is a hard stick.  If there are nurses who can get IV’s in two pound infants then there are nurses who could EASILY get 1/2 cc of blood out of an 18 lb healthy child. I asked Ellen if there was no way to get one of them.  She said they typically have to go through several more steps and phlebotomy has to say they can’t get it, but she was going to make some phone calls and see if she could override the process.

Next thing I knew there was a fabulous vascular nurse literally dancing in the door, turning on some fun Dora music  on her phone, stamping her foot in time to the music, and finding a patent vein in her foot in less than two minutes. Oh, happiness.

I admitted half-guiltily to the nurse on night shift that I usually let Zara sleep on her tummy at home and I wanted to try it so we wouldn’t have to hold her through another night.  She said, “Oh, I totally get it.  I’m a mom and a nurse and my baby sleeps on his tummy, too.” Zara slept fabulously, waking only once at three.

The funniest part of the day was Monday morning when David was in the crib holding Zara (she had to stay in front of the video camera at all times) and the entire neurology team walked in on rounds. 🙂 Oh the love of a daddy!

Once again, neurology said there were no episodes! Not only that, instead of telling us we needed to be readmitted for four days of monitoring in the epilepsy unit, they said we should make a follow up appoint for one to three months out, watch her, and if nothing happened we could call and cancel. We were absolutely ecstatically awaiting discharge papers. It felt as though we’d been given something that felt like a near death sentence Friday night to a probably clean bill of health Monday morning! At twelve I was walking down the hall to get a spoon for Zara when the med student stopped me and said, “I was just looking for you.  So it looks like neurology saw something concerning on her EEG this morning when you guys clicked.”

I stood there in shock and cried.  It was one too many roller coasters on top of too little sleep.  We had the choice to continue monitoring another night or come back for a four day stay.  We easily chose the former.  We were already here, Zara was already hooked up, it looked so much easier.  David kept reminding me that this is what we wanted.  If she’s going to do something odd, it’s so much better for it to happen here.  And they reassured us again that this is not infantile spasms.  Six weeks into the game we would definitely be seeing it on her baseline EEG.

That night he explained it better.  They didn’t see definite seizure activity, but they did catch her jerk on video with correlating eye blink artifact.  Because it was similar to what we had been seeing at home, they wanted more data.  “Kind of like flipping a coin,” he said. “This time we got heads, but lets make sure we get heads every time.”

So we got busy clicking for every odd torso stiffening, every jerk, every potentially weird behavior.  Have you ever stopped and just watched a baby play for hours? They make a lot of weird movements! Between one and two in the afternoon Zara did a lot of weird things.  The weirdest was torso stiffening that coincided with a wide mouth grimace, head turned to the side, elbow and wrist flexion, and a tightly clenched fist.  The EEG tech was down to tighten leads and said, “Yes, that lasted three seconds.  We’d never seen the movement in her and have no idea if it’s normal teething behavior or something suspicious but they should certainly have it well documented because there were multiple episodes.  Around 3:30 she did the same shoulder head spasm and partial arm jerk that was most similar to what we saw at home.  We were both grateful she did because if it was captured with no EEG changes, we won’t worry when we go home and she starts doing it again.  By 7:30 we were beginning to wonder if we had any semblance of what normal behavior looks like.

I am so ready to have my baby girl with the brown hair back!

We got the same words today.  They’re evaluating the clicks from yesterday but assuming there were no EEG changes, we can go home with just a follow up appointment in a few months! David and I noticed that they didn’t bother to reattach the lead that came loose overnight and a few hours later they came and turned off the machine.  We’re reading between the lines and believing neurology didn’t see anything. 🙂 They have no explanation for the odd spasms.  I’ve asked every possible OCD parent question possible. Did I drink too much caffeine? Is this related to the remodel when she was exposed to all the dust, the mold behind the kitchen cabinets, the polyurethane stain, and the finish on the floor? Her pediatrician said she was on the fence about needing a lead screen because of the age of the house but decided not to do one so they did one here.  All clear.  There are no explanations.

I think God healed her.

She’s been our miracle baby all along.  It felt like a miracle when she was conceived and another miracle when my molar-like symptoms switched overnight and we saw her itty bitty self on ultrasound a few days later.

Maybe God just did another miracle.

Whatever the reason, we are humbled, euphoric, grateful, awed, relieved, and did I mention thankful?

I feel like one who has been acquainted with the night, but allowed to walk in the sunshine. Friday morning when I was waiting on Johns Hopkins to return my call the phrase, “Yeah, though I walk through the valley of the shadow of death, I will fear no evil,” kept branding itself into my brain.  We were only asked to look at the shadow.  But looking into it’s face, we saw again so clearly that the night is never entirely black for those who love Jesus.  Just as the moon and the stars light the pitch blackness of night, so the grace of God and the prayers of the body of Christ carry you through the darkest times of your life.

We are profoundly grateful to all of you who have carried this burden with us and prayed for Zara’s healing! When you pray, the heavens open.

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