Chappy and I met with the cardiologist this morning regarding Hope's case, and here is an update:
First of all, as expected, she needs to have surgery soon. The surgeon who will be performing her open heart procedure is Dr. David Bichell, and he will be in Africa until October 9th performing heart surgeries in Kenya for children who never thought they'd have the opportunity to have their hearts repaired. Doesn't that say alot about Dr. Bichell?
Second, Hope's surgery has been scheduled for October 12th; the surgery will be a modified Konno surgery. It is a very serious surgery.....much more serious than the other two surgeries she has had. In fact, only two or three of these surgeries are performed each year at Vanderbilt Children's Hospital and at other major children's hospitals as well.
Third, for those who want to know how Chappy and I are holding up......we are a complete mess.....but we're still standing for Hope's life. While we were not surprised at the sub-aortic stenosis (narrowing beneath her aortic valve), we were stunned about the aneurysm. I asked Hope's cardiologist how many of these he has seen in his 15 years of practice, and he said he'd never seen one in a case like Hope's. Hope always seems to be the extraordinary.
I don't even have words.....my heart is breaking. Hope is getting ready to face the fight of her life. In battle, the strongest, the smartest, and ones who are cunning are typically chosen to fight an opponent. I think of David and Goliath. Goliath had all of the best armor, he was huge in size, experienced in battle, and had never suffered defeat. For certain, young little David was not a worthy opponent by the common bystander's perspective. That is how I see Hope. Down Syndrome affects every single cell of her body. As a result, she is not the strongest or the smartest, and she is not cunning in the least.....in fact, she loves everyone and believes the whole world loves her back. Every time we go out with Hope, at least one time (usually more) we see folks who whisper to one another while pointing at Hope "She has Down Syndrome" as they shake their heads. Or some very bold people come right up to me and say: "Does your little girl have Down Syndrome? Oh, I'm so sorry for you. I know your life must be difficult". Hope, in her tender innocence, doesn't know what "creeps" these people are.....she actually smiles and waves at them.....on occasion, she has even hugged them (which really throws them for a loop). So, my question today is, how in the world is my happy little "I love the whole world" girl going to be able to fight such a huge battle? Yesterday, she went off to her heart cath with Elmo under her arm and a big grin on her face. On October 12th, Elmo will again be tucked under that little arm, a smile will again beam from her round face, but this time, she will be facing the fight of her life.
Sweet friends, I am so thankful for your prayers. Many of you will choose to be on the battlefield with Hope through the days leading up to October 12th. In my mind, nothing on earth is more precious than when the strong choose to turn and give help to the weak. In advance, thank you. Over the last 2 days, I have received more email prayers and encouragement than you would believe. Yesterday, your emails gave incredible comfort to Caleb (14), Lydia (11) and Natalie (11) who were stuck home doing school work while we were at the hospital. They each came to the computer periodically to check emails, because those prayers and thoughts gave them the boost they needed to get through a difficult day of worry for their little sister.
To close, I want you all to know that I am not giving up on Hope. Humbly, with complete understanding that God is in total control (and I am not), I am on my face at my Father's feet....knowing He loves Hope even more than we do......begging Him, through the mystery and majesty of who He is, to spare her life. I believe He will, because I cannot even begin to fathom our lives without her.
Blessings and one-thousand thank-yous!
Melanie (Hope's Mom)