Reason to Celebrate

Friday certainly provided plenty of drama and excitement, but the only news that mattered came early in the afternoon. 

The news from Henry's cath lab was excellent. The doctors did see narrowing of his left pulmonary artery, next to his Glenn shunt. It proved to be not as severe as the echo had indicated, but was still something to address. They performed an angioplasty, inflating a balloon in this artery (4 times) to stretch it out.

After the angioplasty, they decided they did not need to place a stent. Additionally, there were no significant extra blood vessels growing around his Glenn that needed to be closed off. This is excellent news, as it means Henry's own, reconstructed, anatomy can keep performing the amazing job it has been for the past four months. On top of this, they feel his lung pressures are strong enough for us to take him off the sildenafil. One less med!

I don't think Paige or I can express our full amazement at how Henry is doing. Hypoplastic babies do not do this well; they do not grow this fast; they do not have so few cardiac complications; they are not this strong. Henry may have had his setbacks, but he is doing better than we had any right to hope. 

Thank you, Henry!

(PS: #TakeTheCrown)

October milestones

Over the long weekend, Paige and I celebrated our third wedding anniversary, and 11 years that we have been together. Over the years, we have had our shares of ups and downs; we've been through trying times and also gotten to travel the world. For this anniversary, our plans were much quieter.

On Saturday, we had our first dinner out without Henry since we got home in June. It was certainly nice to enjoy a meal without trying to keep a nine-month old entertained. At the same time, we still cherish every one of those crazy dinners at home!

On Monday, the three of us went up to Lawrence to enjoy the nice weather and a day off of work. I was able to get a needed haircut, and Henry joined me for his first haircut! He did really great, sitting on mommy's lap. He never cried or got too squirmy, but did keep trying to turn around to see what was going on! While he does look sharp, it was a little hard to see the long shock of hair on top of his head cut off - hair he's had his whole life!

On Tuesday, we went up to Kansas City for some doctor's appointments. Henry continues to amaze all of us. He weighs over 19 lbs and is over 28" long; for his age, his size is up around the 35th - 40th percentile. Over the past few weeks, he has continued to increase the amount of his formula he takes by bottle, and is taking about 2/3 of it by mouth every day. He is sitting like a champ, and is stretching and reaching for everything. He is not crawling yet, although it is clear he is a butt-scooter.


Back in September, Paige received an unexpected call from Henry's cardiologist. She had shown Henry's echocardiogram at the weekly heart team meeting, and there was some discussion about the area of narrowing around the Glenn. The pulmonary artery that connects with the Glenn shunt passes behind the reconstructed aortic arch. In the echos, it appears that this artery has not grown much since his surgery in April. Our cardiologist was not originally recommending any intervention, but the consensus of the team is that Henry should get go to the cath lab. The risk, as explained to us, is that his body could create additional small blood vessels to compensate for this narrowing, which would complicate the third surgery. The only way to get a good picture of what is truly going on is to do the cath. 

So a cath lab has been ordered and scheduled for Henry on October 23rd. There is a chance that the artery is fine - although echos are helpful, they are not as clear or definitive. If they see the narrowing they suspect, they will likely put in a stent to open it up. If they end up putting in a stent, Henry will need to stay overnight (and we were told he should hopefully not be in the PICU). We were initially told doing a stent would be risky for the third surgery, but Henry's surgeon said he sees no problem with it, especially if Henry could benefit from it. We are a little shocked when we got the call and are nervous as we prepare for this. 

This is still an elective trip to the cath lab. It is clear Henry is still getting sufficient blood flow to his lungs, as his oxygen levels have been consistently in the mid-80s. And spending any time with him will show he has tons of energy! Still, we do not want to have to do this cath any later in the fall or winter, so Henry is going to be a little more of a hermit over these next couple of weeks.

Although Henry has still spent more time in the hospital than at home, we are ever so grateful and thankful for how much he has taken off. It is amazing to see the boy he is becoming!

We will keep everyone posted on the results of the cath lab. As always, we appreciate your continued thoughts and prayers!