He's Got Pounds!

70th percentile, baby! 

Mr. Eli has weight.  My heart baby, 3 years and some months at 37lbs, is in the 70th percentile in the weight charts.  (But 40th in height, haha.)

Compared to other heart children, Eli has always been heftier.  Indeed, every time we went in for check-ups the nurses and doctors say, "Wow!  Look how big he is!"  and ask, "What's your secret?"  And this was being in the 40th percentile in weight.  

Oh, and my secret?  He really likes cottage cheese, hot dogs, and pasta--though not all mixed 3 together!    

But the best part of this story is: he beats his brothers in their percentile weight! 

That's right, Amazing Eli is gaining weight better than his 6 yr old brother and 2 year old brother.  Good stuff, right there. 

Last "Out West" Check-up

Yup guys, we're moving.
Moving to the Southeast Coast for a few years, and going to soak up some nice warm sun and elevation just above 0 feet!

Eli had an appointment last week, it was his last with this doctor.  Eli rocked the appointment, probably because he only needed a chest echo.  Sitting in a dark room and watching a favorite show while people take care of you isn't that bad of a gig.
It's very strange though, that we are leaving.  The "intermountain West" means a lot to us, and we have had nothing but great experiences with the doctors and nurses out here.  Truly have been blessed to receive this extraordinary of care.

Here's how Eli looked on Monday:
- weight: 15.7 kg
- height: 95 cm
- oxygen saturation: 92%*

*Since Eli has been dealing with a cold his sats were a bit down.  He usually is a 94%.  Holy smokes could we tell he wasn't feeling well.  Dang, when this boy doesn't feel well he is one emotional guy.  Today he has finally been acting like a happy guy.  We "lub it!" (as Eli says) when he feels well.

When Eli doesn't feel well he looks like this:
(Someone threw goldfish in the tub.)

And when he's in a good mood, and feels well, he looks like this:

An Eli Update

It's been a while since we've had one of these, huh? Well, it's been a while since we've been to the cardiologist. And guess what? That has changed!

Eli has had two cardiologist appointments within the last two weeks.

Here's the deal:

he weighs 30 pounds, and is 33 inches tall. He is "a square," as one nurse put it.

AND...

... Eli will probably be getting his (hopefully) last surgery at the end of the summer. The Fontan Procedure, to be more precise. We will come back from Alabama August 6th, have a cardio cath done on August 8th in Boise, and then the following week or two have the surgery down at Primary Children's Medical Center in Salt Lake City.

There is a possibility that after they do the cardio cath, look at the heart thoroughly and repair possible leaks, that we will not be doing the surgery. There are two schools of thought on doing the Fontan Procedure. Some doctors believe it needs to be done as soon as the child is two, others believe that it can wait till as long as 4 years old. Our doctor and surgeon are more on board with waiting till the child looks like he/she needs it done (up till 4 years old).

Because Eli shows signs of cyanosis (turning blue/gray color), is pretty sweaty and beginning to breathe hard during play, they think he is ready. Also his mitral valve is leaky. (The valve between the left atrium and ventricle, the pink blood side.) Doing the surgery would greatly take the stress off of this valve--for it is dealing with twice the amount of blood than typical mitral valves.

And incase you don't remember what Eli has, I'll tell you! Tricuspid Atresia. His right valve did not form, instead a wall of tissue. So he has no right ventricle, and pretty much just has two chambers. The two atriums are connected, and all the blood goes down into the left ventricle. His blood is mixed. After this last surgery the blood will no longer be mixed, the heart will only be pumping pink blood, and all the blue blood is routed to the pulmonary artery which goes to the lungs. Crazy, eh? (Creating valves and ventricles is still God's thing. We humans can only reroute!)

................

Recap of today:

Eli wasn't allowed to eat or drink anything 8 hours before his sedated heart echo (ultrasound of the heart). Yes, Eli was crabby. He was very disappointed in my bag, there were no treats, no drinks, not even old crushed bags of Goldfish. (I emptied my bag out before we left, and there were like 3 bags of old crushed Goldfish.)

They didn't put him all the way under, which meant no IV! HOORAY! (IVs, oh how we hate thee!) Instead they gave him a nasty medicine which caused him to come drowsy, relaxed, and unable to form coherent thoughts. I held him the whole time while they did the heart echo, took blood pressure, and blood saturation levels. They got a good thirty minutes of this before he started to started to wiggle. We needed another 10 minutes to get all the looks at the heart that they needed. These last ten me and Matt were holding arms, and nurses were blowing bubbles and showing movies off of their smart phones.

Eli was pretty wobbly and cranky after he fully came to. This 2 year old was a handful till naptime. Wanted food, didn't want food. Wanted drinks, didn't want drinks. Wanted to walk, didn't want to walk.

At this moment (after naptime) he is enjoying a movie, juice, and Goldfish!

Check Up, Check In

Eli's check up appointment was today. Easy and hard. Easy and hard. He slept well, so he was actually in a good mood at the appointment. Typically he doesn't trust a soul at a doctor's office. Typically he cries the whole time.

Today he let the nurse take the blood pressure, oxygen saturation, his weight and length with no problem. Wow! 

Oxygen saturation: 83% 

Weight: 25 pounds

Length: 31 inches 

We brought a movie for the heart echo (ultra sound of the heart). This was his first heart echo since he was a newborn where he was not sedated. Well... I knew he would eventually be a hand full. Heart echos can be up to an hour long...

First 20 to 30 minutes, he laid there pretty well. Watched the video, drank a bottle. But began to fidget. We try bubbles. We try Gold Fish crackers. He starts to whine and cry hard. Well the Doc looks at the pictures and video and says that is probably good enough. 

Heres what we learned:

- Eli is doing fantastic! The saturation levels may seem low, but they are actually pretty high for his circumstance.

- His blood flow looks good. His heart is strong. There seems to be no turbulence in the heart. 

- His next surgery (and hopefully last--the Fontan) will most likely be next May. 

Can you believe that? His next surgery is like 6 to 8 months away. Weird. 

The Stats are In!

Eli had his one year check up a few days ago, and here are the stats:

weight: 21 1/2 lbs 30th percentile 

height: 29 3/5 inches 50th percentile 

Not bad for a heart baby, eh?

Check Up!

Eli recently had a routine check up at Primary Children's Medical Center. What a trip! Because we live a few hours away, Eli and I left the night before and drove down that night. Luckily Idaho Medicaid will reserve and pay for a hotel room if one is needed. And one was needed! It was actually quite nice: two queen size beds, a clean bathroom, and a little kitchenette. I forgot to bring a pack-n-play for Eli. He kept rolling all over the place and unable to go to sleep. I called Matt at 1am just wanting to complain. Matt then suggested a prayer... oh yeah! After the prayer Matt proposed taking the comforter off the bed, folding it up, and if the bath tub was dry, lay Eli in there. This I did, and Eli fell asleep in a matter of minutes. 

Wake up was 7:30 am. Was a breeze to get ready, and we were off at 8am. I arrived at PCMC at 8:20am, was able to a scrumptious breakfast at the cafeteria--the food there is so good!--Eli gagged a bit on a napkin and threw-up all over the place, and we checked in at 9am. I need to remember to bring a stroller. Carrying a baby with two big bags without any help was not fun. 

First to Chest X-Ray. Every time we go he gets one. Just need the shirt off, then two nurses hold him down and still. Eli gets up set! But typically it only takes 5 minutes. 

Back down the hall to wait for a basic Heart Function Echo. No sedation this time, so Eli was able to eat when hungry. When Eli's name was called we were led to a small dark room with a huge bed for Eli. Shirt off again, bottle made, TV on for distraction, and the Echo began. Eli stayed pretty still while the ultrasound (echo) was performed. He just drank his bottle, which I held, and watched a bit of Mickey Mouse ClubHouse. Only took 20 minutes at most. 

Then off to another room. Eli was weighed and measured, coming in at 18.9 lbs! and 27 inches long. That is pretty big for a heart baby. Stickers were then placed all over his chest to perform an EKG, and a blood saturation  toe measurer was placed on the foot. EKG takes five minutes, but taking the stickers off afterward is killer! Blood saturation is kept on for a while--maybe 10 minutes--to figure out a good average. Eli's was a bit lower than wanted, at 80%. Doctor came in, listened to the lungs and heart. And we were done. 

All in all, two hours long. 

Eli and I got back in the car and started to 3 to 4 hour drive back home. Phew! It was exhausting.