Will had his first follow-up appointment since coming home, with Dr Awesome on Tuesday. It went pretty well. The nurse did a weight and height check...he was 7lbs 14oz...HIS BIRTH WEIGHT! He has put on almost a whole pound since coming home! We were told if he didn't gain weight it would be sign that his heart was working too hard. She also did and EKG and blood pressures before taking us to another room to see Dr Awesome.
Dr Awesome said he was pleased with Will's exam. He can still hear a murmur (due to his coarc-I'll explain in a minute), but that all his pulses were good, He is oxygenating well, his color was wonderful and that the fact he is eating well is "huge". Everything he says is good is "huge". Then we went to another room for an echo.
The echo took forever. In the hospital an average echo lasted about 30-40 minutes, this time it was over an hour. But Will did wonderfully. He slept through almost the whole thing despite the fact that it was his lunchtime. Dr Patel was able to show us exactly what is causing his murmur on the echo. When they did Will's coarc repair they found that his aortic arch was narrowed much further back than they had originally thought. Because it was narrowed so close to the vessels that take the oxygenated blood to the brain they couldn't remove that section without clamping off the blood supply to his brain, so they left it narrow. This affects his blood pressures and how hard his heart has to work.
In terms of blood pressure think of it as a water in a garden hose. When the end of a hose is unobstructed, the water flows out easily with little pressure. But when you put your finger over the end and make the opening smaller, the water flows faster and has much more force. This is basically what is happening in Will's aorta.
Right now Will's aortic valve is opening remarkably well. Dr Awesome was very happy with it. His mitral valve though still smaller than normal is also opening completely. But the best news of the day was that his left ventricle is now functioning normally! Not almost normal or nearly normal...it is functioning as though it were NORMAL! Compared to his echo the day he was born, when it the outer wall was not functioning at all, that is absolutely amazing!
The three main things that Dr Awesome will be watching with Will are the remaining coarctation in his aorta, that his aortic valve stenosis doesn't return, and that his mitral valve continues to work despite it's small size. I was very relieved when we were told that Will did not have HLHS, but since I have started researching Shone's Syndrome and talking with the doctors, I am worried about the fact that it (unlike most CHD's) can continue to worsen as the child grows and new problems/complications from Shone's can arise.
Thank you again to everyone who prayed for Will and our family while he was in the hospital! And don't forget that we are walking in the 2010 March for Babies this weekend in honor of both our little miracles. Please consider sponsoring Team Kieffer. Just click here to make a donation. Thanks!!