Remember the teeter-totter you played on as a child? Up and down, up and down. If you were lucky enough to have a partner who balanced you well, AND a really big board, your view could change dramatically as you played.
This week has been somewhat of a similar ride. If you read my last couple of posts, you'll know that, at least initially, the results of Aaron's heart cath were less than ideal. And yes, we're once again we're begging God for yet another miracle. He has answered our prayers so many times, and no, I don't believe when Aaron does pass away that it means that He has quit. But so far, it seems that our prayers and requests have been in tune with His will.
So anyway, Monday morning, bright and early, our cardiologist calls. He wants my permission to take Aaron's case before the surgical board. He feels that now is a good time to close his VSD and that while, yes, there are risks, it is better to do it now for a variety of reasons. This man has been following Aaron since before his birth, through his bout with heart failure, and so forth. He's a great advocate for Aaron and truly cares for him. After speaking with him about risks, etc, I agreed that talking to the team would be a good idea.
Wednesday afternoon, he calls back again. It seems that in looking closely at the results with the cardiologist who performed the procedure and in talking with the team, that it's not quite time yet to do the surgery. The balance between doing the surgery and the risks is tipped when he's shunting more blood through his VSD and routing blood that already has oxygen back through his lungs.
Those of us without that hole in the heart send 100% of the blood we're supposed to through the lungs to pick up oxygen. It then returns back to our hearts to be sent out to the body. Because the left side of the heart has to send the blood farther, it's stronger, about four times as strong as the right side, usually, that is.
When Aaron was in heart failure, his right side pumped harder (not good) and his heart was moderately enlarged (also not good). We had to make his heart not work as hard and work more efficiently.
Now, his heart is slightly enlarged (better) and his right side doesn't work quite as hard (also better). BUT because of his pulmonary hypertension, the right side is still stronger and working harder than it should have to. Back to the percentage of blood that is pumped to his lungs. When a child (baby?) is sending 200% of the blood that the pulmonary artery is supposed to handle, it is time to close off the VSD. When Aaron is getting 100% oxygen, his blood flow is at 180%. The extra oxygen attracts more blood into the lungs. But we don't have him on 100%. He's closer to 24-30% (room air is already 21%). And at that rate, he only sends 120% through, or an additional 20% more than he's supposed to.
And because he does have the pulmonary hypertension (think high blood pressure, but to the lungs, not through the whole body), it's better not to close off that hole too early. So the long and short is, we're still waiting. Most children with a VSD need it closed before their first birthday. Aaron is, once again, writing his own story. And we're still playing the waiting game. But we're loving every minute we get with him.
One of my favorite hymns is "Count Your Many Blessings." It dawned on me the other day that the hymn starts, "When upon life's billows you are tempest tossed..." It doesn't say, "when the sky is blue and the birds are singing." It doesn't say, "when everything is perfect and rosy." It says when you're struggling, when it looks like you're drowning, when it seems like everything is conspiring against you and there is no hope. THAT'S when you need to count your blessings. So we will.
We have been blessed with nine beautiful children. True, one is not "healthy" in the sense that most think of it. But his spirit is more healthy than any I have ever known. And our other children try so hard to make wise choices. We have a warm home, plenty to eat. Many friends and family members who uphold us with their love and prayers. And so many, many more blessings.
Last week, I was blessed to sing in a community Christmas concert. Two songs in particular really impressed me. In "Sussex Carol," we sing "Then why should men on earth be so sad, Since our Redeemer made us glad." And in "Good Christian Men, Rejoice," "Now ye need not fear the grave, Peace! Peace! Jesus Christ was born to save." And then just the carols we sing all the time, songs of our Savior's birth, the hope and peace and promise it brings. I am so grateful for the chance to sing these prayers, grateful for the reminder when I felt so fragile, so broken and unsure. Grateful for my Savior.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
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