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/

The Scar

Eli's scar. Summer of 2010. 

A year after two surgeries this is what his scar looks like. 

Change of Plans

Eli will not be having the Fontan surgery in May. Because he is doing so well, the surgeon wants to wait till he is bigger so that an adult size... something... can be used. Not sure when the surgery will be. He check up appointment will be in May, and we will go from there. I know he needs a cardiac catheterization done after that. Probably sometime in the summer. If he continues to gain weight and have higher oxygen saturation levels, then they may wait till he is even three years of age. 

Not sure how I feel. Watching him struggle and get tired after long play is hard. He's sweaty, blue-ish tint. I just want him to feel well and be able to keep up with his brothers. But what is best, is best. I'm just grateful we have the modern medicine to take care of him! 

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. 

A Pain in the Aspirin

Eli is on aspirin. Has been for over a year. A half baby aspirin, every night. 

We feel like an apothecary. We half the aspirin. We crush the aspirin. We dissolve the aspirin in water. We then use a small syringe to get the aspirin/water mixture to Eli. And sometimes Eli spits it out...

BUT we are proud to say that those days are over!! We now just half the aspirin, and Eli chews on it and eats it by himself. It is so wonderful and freeing!!

Sweaty Summer

Eli is sweaty. All the time. There could be a number of factors to this.

1) It is summer, and it is hot. 

2) Having a CHD his body has to work extra hard to do typical one year old tasks. Such as learning how to walk, crawling after a big bother, and unrolling all the toilet paper. 

And 3) As he is growing it is making his heart work harder to supply the blood flow to his body. 

Being sweaty. Just one of those things that comes with the territory. 

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?