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?

One Year Later

I have been thinking a lot about last year. Wow, what a time. Eli was born, had his first open heart surgery (the PA band), came home, and started the 6 weeks of recovery. When I look at the photos I get really, really weepy. I think I am feeling part heart break, part relief. Heart break because Eli was so small and so sick/in pain. Relief because we have made it this far, and this time last year I had no idea where we'd be at this point... 

Eli's birthday. 

He was brought to us after being seen in the NICU and before being transported to PICU

His bed.

Where he chilled, was held, and lived for 4 days before surgery.

Surgery day.

The surgeon (amazing!) coming to check on him.

Eli had a really, really hard time that night. He wasn't breathing well on his own so he couldn't have the full dose of pain medicine. Probably the worst night of my life.

In recovery! 

But still in lots of pain. We were fortunate enough to be able to leave 4 days after the surgery. So 8 days total at the hospital.

Hiccups.

Hiccups are the worst! The worst. Eli got them all the time. Just killed him. He got them a lot because he wasn't able to burp well, because his chest hurt. The only thing we could do was let him cry it out. This happened 5 or 6 times a day. 

Newborn nights.

Newborn nights are always hard. But his seemed harder. He liked the lights on, and did not want to be in the bassinet. Liked wide open spaces. Which fits to what he was used to in the hospital. 

Home recovery.

Recovery is typically 6 weeks long. In Eli's case he needed to come home with oxygen. Some need it up to 3 months afterward, but Eli only needed it for two weeks. 

This is where he chilled most of the time:

Oxygen gone, thankfully! 

Oxygen really does get in the way. 

And this is what is chest looked like 2 weeks after surgery:

I could go on and on. If you have any question feel free to email me at shandud@gmail.com

But for now, THE END.

Coloring

Eli has a lower blood oxygen saturation. A typical person has a blood saturation of 95 to 99 per cent, but Eli's blood saturation ranges between 78 and 84 per cent. This lower saturation is due to the mixing of the pink and blue blood because of the holes in his heart. Well this dubs him as "blue baby." The coloring of his skin isn't really blue, but off a bit. One can really tell in photographs.

Eli at 9 months old--Christmas '09

Eli on the left and his big brother Isaac on the right 

When Eli has his last surgery next year all the holes in his heart will be mended and his blood oxygen saturation will within normal range. No more "blue baby!"

Oh, this lower blood oxygen saturation makes Eli become tired and cranky very easily. I just got to remember in those moments of excessive whining, that, "he does not feel well, he does not feel well." Despite this he is one happy, crazy baby!