here we go again...

The date is set, we're heading to Ann Arbor Thursday morning for 2 days of testing. Thursday will be getting Ann Arbor up to date with their tests that are fairly common for Evan - chest x-ray, EKG and ECHO. One difference with this ECHO is Evan will be sedated for it so they're able to do a thorough job without him wiggling around too much. Friday is the big test - diagnostic catherization. They will enter into a blood vessel in his groin and snake it up into his heart. Once in there, they will measure pressures, take blood gases, blood samples and take pictures with a dye. It's a 2 hour procedure, we'll have to stay 4 hours afterwards for recovery. They did confirm that the doctor will be able to talk with us about results that day after the procedure. I'm very happy we're not going to have to wait to hear.

So, that's about it. I just wanted to post an update to give the details of our week. Specific prayer requests are that one, what they see shows that we can wait on the valve replacement. and two, that whatever they see gives a clear indication as to what we need to do now. I'm hoping that Derek and I are not put in a situation where we need to make decisions without having a clear cut answer as to what that decision should be.

I'll update next weekend with the results of the test. Prayers welcome and highly encouraged. :)

an update on Evan's heart

We had a cardiologist appt this morning with Dr. Loker. His main concern has been his parachuted mitral valve - this has been really Evan's only issue since his surgery last June. Basically, because of the abnormal shape, it's causing stenosis of the valve. Which means it's not allowing adequate blood flow between his upper and lower chambers in his left ventricle. With this backup it causes a back up into his lungs.

His ECHO today showed that the stenosis is still moderate to severe. The result of that, at this time, is an elevation in his pulmonary blood pressure. What should be around 20-25 is in Evan at 45-50.

At this point the Drs are wanting some more information, so Evan will be having a diagnostic heart catheter done in Ann Arbor within the next couple of months. We have known that the mitral valve would likely need to be replaced in his lifetime. We now know it's not an 'if', it's a 'when'. The hope has, and continues to be, to hold this off as long as possible. Putting a mechanical valve in has a couple of ramifications: One, being non-organic, it is not going to grow as Evan's heart does. The earlier it's replaced, the more often it will need to be re-replaced as his heart continues to grow. Each valve replacement will be another open heart procedure. Two, because it's mechanical, blood tends to clot around it. Obviously we can't have this in his heart, so he will need to be on blood thinners. Being on blood thinners means a lowered activity level for Evan as it will be very important that we avoid him getting hurt.

Our prayer continues to be that his valve replacement can be postponed for at least a few years. I won't have any idea on what timing the Drs are thinking until after his cath is done. There's a chance that during the cath, they can help his stenosis a bit to delay the inevitable. God has certainly worked miracles in Evan's heart already, I pray he chooses to do that some more. I know we have so many people who have continued to pray throughout Evan's first year and I thought this would be a good way to get you updated.

For now, we wait. Worry does no good and while we have more information today, Evan is still the same as he was yesterday. None of this has been a surprise for God - he already knows the result of the catheter we wait for. He knows when Evan's surgery will be. It's in His plan, so we continue to trust. So, instead of worry, please continue to pray, and enjoy these irresistible photos of our little man...

warm weather, grumpy baby.

I took Evan out to play outside since it's finally nice outside. Evan didn't think it was as much fun as I did, but it did make some good photos!

bedhead.

I couldn't resist. This was how Evan woke up from his nap today. Pay no attention to the food stuck on his face, of course that was not from before his nap... oops.

how quickly you forget...

How tiny they are! I found this video on my computer - don't even remember taking it. Derek and I think he's between 6-8 weeks old.

black and white.

I dusted off my old camera and had a little photo session with Evan awhile back. Put the film in my diaper bag. And 5 months later finally developed them. They're cute. He's cute. Totally irresistible.

Leg warmers & mohawks.

Yes, Evan can sport both and still be as charming as ever.