Save the Date!

Eli's surgery--the Fontan Procedure--has been scheduled! August 17th... 6 weeks away. AHH!

Bum-age

Eli is our chunky monkey. He weighs just a few pounds less than his brother (who is 2 yrs and 7 months older). We think Isaac is 38 pounds, and Eli is more along the lines of 33 to 35 pounds. This is pretty amazing considering Eli's heart condition.

Take a peak at their bums, and be amazed!

Weight comes with disadvantages though. His coloring can quickly take a turn for the worst when upset, and he is starting to look "blue" most of the time. Though it is really noticeable in pictures. Can you tell his coloring is off? (Remember his oxygen saturation is 78 to 84%.)

First Teeth Scare

This story starts out with a very worried mother, but all turns out well in the end:

One of my greatest worries with having a child with a heart condition is he/she getting a mouth problem. Oral hygiene and heart health are very much related.

Two weeks ago Eli took a big fall, and the inside of his mouth was a scarpped up. It looked like it was healing well, so I didn't worry too much.

We came to Alabama a week later, and for the first few days of the visit Eli didn't eat very much. He was crabby and started running a fever. I took a quick look in his mouth one afternoon and to my horror saw his gumline inflamed and red. I had all these horrible thoughts come rushing into my mind: "He's has an ifection!" and "We are going to be in the hospital for day!" and "We don't know anybody around here, how are we going to know what to do?!"

My mom said that she knew a dentist in town who would take a look. Phew! I was grateful that he said he'd take a quick peak to help us know what to do. (Oh, did I mention this is at 4:30 in the afternoon on a Friday?!) While getting things quickly together I started to cry. Beinging in a new area, plus worry of this little 2 year old's health, took it's tool on my very tired mind.

The cute southern drawled dentist opened his office just for us, and sat down and took a look. He seemed concered at first, but with some further looks he relaxed. "Gums do this when children are teething. His fall and this gumline are not connected." Wave after wave after wave of relief flooded my body.

Two hours after that visit Eli's fever broke and he started eating again. Isn't that the way it always goes?

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!

So Far, So Good!

We survived the Winter! No major sickness. Though it did seem that Eli or one of his brothers ALWAYS had a cold...

(present day Eli)

... Yup, no hospital visits this winter! Eli did get the flu on Christmas, but it wasn't to the extreme. I'm grateful that is becoming Spring. I don't have to worry too much about crazy bugs going around!

AND! Eli is talking. Which is great! He'll be two next month, and for us he seems to be an early talker. This is very much a good thing. We've been told that the few seconds his heart stops for the open heart surgeries (before the by-pass kicks in) are the moments that damage to "speaking" part of the brain can occur. He is talking away, 2 or 3 words together. And loves to boss his brothers around... but he loves his brothers too! He doesn't know who he is when neither are around!

A Wal-Mart Fit

Eli is a crazy boy. So much spirit and spunk! He is always up for wrestling, running, jumping, playing peek-a-boo, you name it. I'm actually kinda surprised with how well he is doing. 2 years ago, when we found out in utero that he had a congenital heart disease, I was expecting to have a little boy who wanted to sit and be sad all the time. That is not the case! I am so grateful for that.

But I have to say, with so much energy, comes really big fits.  He is very willing to let you know when he is not happy.  Crying and screaming most likely will ensue. This causes him to be sweaty, and now I am starting to really notice a color change.

A few weeks ago we were in Wal-Mart, checking out, and Eli wanted a drink. He kept pointing at the Pepsi products, and I kept saying we will get a drink when we went home. Well 19 month olds don't quite understand patience.  He cried and screamed and flung him self all over the place in the seat of the cart. Then I started to notice his color change.  He became a purple-grayish color. Head to toe. To be honest, it scared me.  

Alright, Eli, lesson learned. I will always carry water with us. Even if the trip is a total of 15 minutes long, a water bottle will be in the diaper bag. 

Grateful

We are grateful for our son.  We are grateful for the modern medicine that has saved him.  Eli would have passed away around 6 weeks of age if not for open heart surgery.  Too much blood pressure in the lungs would have destroyed them.  

We are grateful for these experiences. They have taught us what love and hope and faith truly mean.  We have grown in ways never known to us before. 

We are grateful for Eli's health and his strength. 

Found this blog today. Their daughter died a year ago, she was missing her left side.  Eli is missing his right side... 

http://thegledhillfamily.blogspot.com/