6 Week Marvel

So we weighed Elijah guessing he'd be around 13.5lb.  A hefty size but not abnormal for him.  No.  He weighed 14.5lb or more than Shayna did at 9 months (post-transplant).  We're thinking of taking wagers on when they'll weigh the same and when people will start asking if they're twins.  You'd think such a big guy would sleep longer but I just got my first 5hrs of sleep in a row last night.  I think it's because he's a lazy eater and tends to drift off once he feels better instead of totally filling up.

On the health status of our "unique" kids:  Elijah has had no more episodes and continues the take his medicine like a champ.  Shayna's labs on the 8th were great.  Shayna is currently battling another normal kid virus, hand, foot, and mouth disease (HFMD).  So far it's only been a mild version of it and she still plays a bit and doesn't need a lot of Tylenol or Ibuprofen intervention for either sleep or play.  She has been  sleeping a lot to kick to bug.  It should run its course by the weekend just in time for the sun to disappear behind the coming rain clouds.

I've had some fun cleaning up the garden over the last couple days.  It's been nice to work outside in a t-shirt again.  Shayna even helped me dig in the dirt.

March 8: A nice domestic shot by Michael.

March 11: Glad my parents aren't sissies as it was 34F with a good wind making it much colder.  We all enjoyed getting outside for a very short walk anyway.

March 12: Patricia, Elijah, and Shayna joined Michelle (a former co-worker) in the St. Patrick's day parade for a block.  So fun to see her.

March 13: Shayna being cute in her beautiful cowboy and overalls.

While Elijah is being big with Grandpa Michael.

March 21: Shayna's favorite thing to do with Elijah.  "Hold Elijah in the bouncy, bouncy chair." As you can see, it's not Elijah's favorite.

Elijah: 1-month and 4-weeks on the same day...

...just like Shayna was.  February's cool like that.

Elijah's 1-month Dr. apt stats: 12#5oz, 23" tall, and 15.25" hc (percentiles: 90/95/90).  He does look big.  He's also finally starting to get some fat rolls on his arms and he's already in #2 diapers and some 3-6m clothes.  It is fun to watch a normally growing offspring; though, I am a little concerned that I'll soon have this mammoth baby to haul around.

Shayna is finally over her ear infections and able to enjoy life.  One could easily see she wasn't her normal social, fun self during her birthday party last Sunday and with Grandma Melinda and Grandpa Michael.  She's finally starting to really enjoy our two special visitors while they've been a huge help with Elijah.  Since Nahum was sick, I wouldn't let him near Elijah but that meant evenings were all me for baby care and boy is that wearing.  M&M got dumped with a baby and lots of diaper duty almost from the moment they walked in the door (I think I gave them 5 minutes to put their bags down and say hello).

March 4: Shayna and the big but floppy Elijah (almost 1m)

The next 5 are all Sunday, March 6.

Shayna helps Grandpa Michael make meatballs.

She played in the butter on the pan and supervised the ball rolling.

While Grandma Melinda cuddled with Elijah.

Lots of wonderful friends at Shayna's party.  Leslie holding Mara, Ben, Tal, Michal holding Danielle and Ella, and Yael with Hannah.

My first cup cake creation: flowers with marshmallows and colored sugar.  Thank goodness for Melinda as she did 14 of the 19 we made so I could nap.  It was a simple yet tedious and time consuming job.

Yum-Yum

March 9: Elijah cuddles with Grandpa so Ima can have a break.

Home! Home! Home!

Shayna and Becca picked Elijah and I up this morning.  It was the fastest hospital discharge I've ever experienced.  We were home by 11:30, enough time for me to play with Shayna a bit and enjoy lunch with her.  It's wonderful how cuddly she is with me.  We all took afternoon naps.  Afterward, I made dinner for my family.  It's wonderful to feel a bit normal again.

Feb 18: Dr. Shayna listens to Elijah's heart.

 Reading Ima's Jane Austen book.  She loves to take these books off the shelf and "read" them.

Feb 26: Aba and Shayna visit Ima and Elijah at the hospital.

Feb 28: Elijah gets his daily EKG.

Happy Birthday Shayna!

Happy 2nd Birthday to my little girl!  She came with Aba to the hospital again today.  We threw rocks in the river and I made the cafeteria staff nervous by throwing her in the air.  I love the way her hair flies and she grins right before I catch her.  I bought her a cookie just to give her something but we'll be celebrating with friends next Sunday.  She loves parties and singing so will be thrilled when everyone sings happy birthday to her.

What a difference a year makes.

Hospital Home into Next Week

Elijah keeps having SVT episodes; though, they are much less frequent than they were in the first 24hr period.  There were 12-14 during that period where the last 3 have been spaced at 11 and 14 hours apart.  We need to be 48 hours out from the last one to go home.  We're also going to experiment by giving him 5 minutes to get out of the next one on his own.  They just upped the dose of Flecainide and we'll also be going home on a beta-blocker whose name I forgot.  He'll be on the Flecainide for 6 months to 2 years and we won't know when we stop until we're there. (Usually, the dose is left the same, the kid will just out grow the dose, not have any episodes, and then it's stopped all together.)  I don't know how long for the other one, but it seems it just may be a short term thing.

I had an amazing visitor yesterday and today, Shayna.  Today Nahum brought her down today.  It was his first big outing with her all on his own.  Luckily, Becca helped him get set up for today's trip yesterday.  Shayna and I threw rocks in the river both days.  She was insistent that we go to the river again today.  We collect rocks in my jacket pockets, I hold her while she sits on the rail of the footbridge, she throws/drops the rocks in, and we both enjoy the splashes.  She enjoyed climbing in and out of the 2 little plastic cars in the regular pediatric area toy room.  She also got a lot of stickers as anyone with stickers offers her some.  The whole front of her shirt was covered by the time she and Nahum left.  We've been able to say hi to a lot of the doctors that treated her when she was a patient and couple of the nurses.  We even ran into the pediatric surgeon who'll do Shayna's hernia repair.  Nahum, being the wonderful Israeli that he is, asked if the doctor would just look at Shayna now so we don't have to bring her in Monday afternoon for her pre-op appointment.  He did! and now we don't have to haul her down to Roanoke except to visit me.

I've got a few pictures and a video but they're all stuck on my camera as the cable is at home so you'll just have to wait till we're home to see my wonderful children.

Paroxysmal Supraventricular Tachycardia (PSVT)

Paroxysmal: A sudden attack, recurrence, or intensification of a disease


Supraventricular: Located or occurring above the ventricles (the upper 2 chambers of the heart)


Tachycardia: a rapid cardiac rate


You guessed it.  More big medical terminology means more hospital fun for the Arav family.  Currently Elijah and I are in the Roanoke Carilion Memorial Hospital PICU due to his sudden attacks of rapid heart rate (above 300 in his case).  Other than the fact that we're in the hospital and I have to keep smothering my child with bags of ice to get his heart rate back down, we're doing well.  I'll try to make a long story short.


Shayna spiked a fever in the night Tuesday so I took her to see Dr. Berry in the morning.  Poor child had massive ear infections again, probably originated from last month's.  While we're waiting for her antibiotic shot, I notice Elijah is awake yet calm so figure it's a good time to check his heart rate like I'm supposed to 3x a day.  300+ so I grab the doc to listen too and he says, "pack up, we're going to the ER."  So I have a miserable, crying Shayna, a baby in PSVT, and Dr. Berry in the front seat directing us through the parking lot to the ER doors.  Dr. Berry stays with us for the next 3 hrs in ER directing Elijah's care, which was a blessing beyond belief as Dr. Berry knew what to do, how to do it, and what to monitor when it seemed the ER staff was overwhelmed and lost.  Vagal Maneuvers were used every time (3 ER episodes of PSVT) to get his heart rate down, the effective one being a bag of ice pressed to the face and head.  Becca came to help with Shayna and eventually took her home once it was clear that I would be allowed to ride down to Roanoke with Elijah.  (Shayna spent the rest of the day snuggling on the couch with Becca and watching Curious George or sleeping.  She's doing a lot better today.)  Since we got to the PICU yesterday afternoon, Elijah's had 8 more episodes so I've become quite a baby-smoothering-with-a-bag-of-ice expert.  (It was scary to watch Dr. Berry do it the first time but after he explained what he did to the transport crew so they could repeat it if necessary, it became fairly easy though still a little nerve racking for me to do.)  


In Elijah there appears to be an extra electrical circuit that originates above the ventricles that gets stuck in an infinite loop until either a vagal maneuver or iv drugs are used to stop it.  (Thankfully the iv drugs were never needed as they could have also stopped his heart (In the ER, he had little shock pads stuck to his front and back just incase he needed the drugs and the drugs stopped his heart, they could shock it back).)  Elijah is now on oral meds (flecaninide) 3x a day to control his heart rate.  Once he's bigger (20-25lbs), they can take a look inside to see what's wrong if we're still having issues.  At the end of the day, there's a 99% chance that he will simply out grow the PSVT around toddlerhood.  Until then, we will walk around with a stethoscope and 2 kids on drugs.  The good thing about Elijah's condition is it would take 12-24 hours to begin to kill him by just tiring out his heart.  This gives us plenty of time to get to the appropriate medical facility without much stress.  We should be able to go home Saturday or Sunday.

My day is going well as I got a visitor who brought real food and company.  Both beautiful blessings in my current state of living.  My friend even got to experience the thrill of 2 PSVT episodes.  She also has a good sense of humor so could laugh with me about our current situation. Tomorrow Becca will bring Shayna down for a visit so I can play with her & she can have some Ima time (I really missed holding her yesterday and just being with her in general).

Elijah getting himself to sleep.  We've been sharing the extra bed in the room as we both seem to sleep better next to each other.

Settling In

We did make it home at 6:30 Tuesday evening.  I was so happy to see Shayna and she us.  She was pretty excited to see Elijah too.  After many Ima hugs, she wanted to hold the baby.

We're settling into our new roles and Shayna isn't having too many issues.  She's a little whinier than usual but that's about it.  She likes to look at, sing to, and hold Elijah.  Elijah eats and sleeps well.  I occasionally get 3+ hours of sleep in a row, but he also decides that he's going to be awake during the night at times.  He's a mellow fellow and is finally starting to relax fully after his NICU experience.  (When we first brought him home, he'd cry for every diaper changed and when his feet we touched and got real jumpy with loud beeping things.)  Nahum does Shayna's mornings, evenings, and nights and she's switched easily to depending on him.  I miss her so treasure my times with her more than ever.

I'm recovering much faster than I did with Shayna.  I'm down to only an afternoon nap as of yesterday with added activity.  I took Shayna (and Elijah) to gymnastics yesterday (see pics below) and today Becca drove us all to the park near our house (don't think I'll be up for a real walk until next week but the weather was just too beautiful too pass up).

That's all my brain is up for just yet.