Saturday, August 28, 2010


... But not the fun kind, rather the ones that do something important!

The date for Joey's next procedure is this coming Thursday, September 2nd. He's the first case of the day, 8 am, so let's pray that the doctor is a morning person! Maybe I'll bring him a cup of coffee :)

Joey will be having another cardiac catherization with balloon dilation of the aortic valve. (*whew* say that 10 times fast.) He had this done once already, although the last time was much MUCH scarier. Last time the doctor was not sure he would survive, and statistically Joey beat the odds. This time Joey is healthier, stronger, bigger. He has had time to recover from his last surgery, time to grow, and his heart is returning to it's normal size and function. This is much safer this time around, praise God!

I will admit I am a little nervous; he's still my baby. My tiny little baby. I continue to pray for grace and strength, placing him in Bigger Hands. Please remember to keep him in your prayers this week!!!
St. Joseph, pray for him!

Wednesday, August 25, 2010

A Boy of Surprises

Today was spent in the doctor's office. For 3 and a half hours. To be fair, I was a few minutes late thanks to traffic and poorly marked roads, but that's another story, and yall visit here to read about Joey and not about my inability to handle online map mistakes with grace and poise. Moving on.

Joey continues to keep us on our toes. Right about the time we start thinking we know what to expect he surprises us with a change. Today's, thankfully, was nothing significant.

The pressure across his pulmonary artery (PA) band was stable. Which is good news in that surgery is in the near future, but is not urgent. He is growing and his heart is working well and he will need that band taken off and that hole closed soon. But not right now. No, instead what changed over the past 3 weeks is the pressure across his aortic valve. His stenosis has progressed to the magic number at which he earns another trip to the cardiac catheterization lab. He will undergo his next balloon valvoplasty to loosen and stretch his aortic valve sometime in the next 2 weeks. (ish.) We will know the schedule sometime within the next week, and I will update as soon as possible asking for more prayers!
In simpler news, he is growing nicely! Mr. Chubby Cheeks is up to 10 lbs, 6.5 ozs! He is alert and very smiley, loves watching his sisters and is a big fan of snuggling on my chest. I am meeting with another lactation consultant to try to encourage his to latch as he seems to have given up nursing in favor of the bottle. Any nursing mama will verify how heart-wrenching that is! We have another follow-up swallow study coming up soon, which I am confident will show that his vocal fold has healed and he's ready to eat regular thinned liquids.

Friday, August 13, 2010


Several follow-up appointments later and I'm finally getting around to summing it all up and writing again. My apologies.

Joey is doing really well these days, growing SO fast like the little Champ he is! Last week's weigh-in has him at 9lbs, 6 ozs! Go Joey, Go Joey....

At every follow-up he has an echocardiogram to examine each of his heart defects and monitor progress of his heart function. Measuring the pressure across his aortic valve will determine when he needs another cardiac catheterization with balloon valvoplasty. Measuring the pressure across the Pulmonary Artery Band helps determine when he will need the VSD (ventricular septal defect, or "hole") repaired. The last appointment showed that his aortic stenosis (measured by the pressure across his aortic valve) has stayed stable! The pressure has increased since his first balloon, but has not changed in 2 weeks. This is very good news, indeed. We are not going to schedule that intervention until the pressure is much higher, and the more time in between balloons the better.

What did change was the pressure across the PA (pulmonary artery) band. This is actually a pretty good sign, as it means he is growing well both in over-all size AND in heart function. His heart is growing to a normal size with greatly increased function. Therefore the likely next step will be to schedule the surgery to close the VSD and remove that PA band.

We are a little surprised by this, as the original time frame had Joseph waiting several more months before underg0ing this next surgery. However, he is healthy enough to take on this next challenge, so let's do it! I will post more about the details of the surgery when we have it scheduled, which we expect to do at this next cardio follow-up.