We met with the cardiac surgeon yesterday. We really liked him, he was very straight-forward, yet compassionate. He talked to us about 2 different surgical options. One is a Tricuspid Valve fix, which Jethro really isn't a candidate for, because of the severity of his defect. Just to give you an idea of how rare Ebstein's is, the "big" studies on it involved 20 patients over 20 years. :-/ Doesn't really make for lots of information. And within that rarity, Jethro is almost in a class by himself because of the severity of his defect. His defect is so severe, it really is incompatible with life. However, surgery will give him a chance.
We told the surgeon that we don't expect him to perform a miracle, nor do we expect that Jethro's heart will be perfect ~ who of us has a perfectly functioning body??? Anyone? Well...Levi says he has a perfectly functioning body, but most of us...not so much! :-D We just want Jethro to have a shot at life, and to be able to have him as a part of our family to love.
So, what it looks like is going to happen is that we are heading toward a single ventricle "solution". What this means, basically, is that they will block off the right side of the heart and ignore it. This will take 3 open heart surgeries to complete. The first one, Lord willing, will take place on Monday, the second would happen between 4 and 6 months of age and the final one would take place at 3 years of age. It probably would not be his "final" surgery, but the one that would complete this particular procedure.
Some of you have asked or suggested about the possibility of a transplant. That just really is not an option for us. For one thing, the financial aspect of it is so overwhelming, I can't hardly even contemplate it. The other is the pandora's box of emotions, etc. that it opens up. I just don't think I could go down that road right now. We are confident in the decision that was made yesterday, although we know that we still have an uncertain, difficult road ahead of us.
- This baby is already a miracle. He was delivered dead, and they were able to resusitate (sp) him. Every day with this child is a blessing, and we want to acknowledge that.
- Jethro is doing good right now. He is off the paraletic drug, he is moving and responding to touch, and he is working on opening his eyes! He just barely opens them, but there's some eyeballs in there! :-)
- My milk supply is great. Right now he's not getting any milk, but when he's ready, we've got plenty!!
- We were able to dedicate Jethro on Wednesday. 20 people in a little NICU room, all praying for healing for this sweet baby and that his life would glorify God. We had 3 pastors present...how many babies are so blessed?
- That Jethro would remain stable or continue to improve over the weekend. This is so important if we are going to be able to move forward with surgery on Monday. I know it's only the weekend away, but in Jethro's condition, each day is a lifetime.
- For Mike and I to remain steady in our faith. Tuesday really knocked me for a loop. God is faithful and true, and I want to be that to Him as well.
- Continuing wisdom and compassion for the drs and nurses. So far, we have had great nurses and our drs are outstanding. They really are a great bunch of folks.
- And please pray for the surgery on Monday. That it would go smoothly, that the drs hands would be steady, that God would make the way clear before them.
Also, if you are on Facebook, they have set up a group for Jethro. Search under Jethro Storms Dole, and you can find him. There will be updates there...possibly more often than here, and pictures as well.
Oh! Monday...if all goes as planned, I will create one "surgery" post, and just edit and add to it with updates, instead of creating mulitple posts on Monday. I will try and post an update each time we get one, but I may not get it done that often, however, I will update here.