Monday, November 16, 2009

The Day We've Been Waiting For...

Me and Lisa (and many of you) have been waiting for this day for a long time. Today Jackman went back for surgery to attach his esophagus, finally, after three long months. Things didn't go according to our wants or plans... even some of our prayers. But my prayer was answered. That will take a little explaining.

Today seemed to start out fine. We were in really good spirits for a couple whose baby is about to go into surgery. He was supposed to go back "late in the day, if an emergency case doesn't push him back to another day" according to what we were told. Knowing that, we planned to be at the hospital before noon so that we could have time to visit with Jackman and see him off. We ate a late breakfast, stopped to renew Lisa's driver's license, then went straight to Children's.

When we walked into NICU, we were told that Jackman had been taken back for surgery over an hour before we even got there. I could feel my blood pressure building to the point that I could hear it in my ears. This was an instance where I know the Holy Spirit lives in me, because I almost came unglued... but somehow I was restrained. Don't get me wrong; they knew I was less than pleased. No one had bothered to even call and say "hey, we're taking your baby into surgery early and thought you might like to know". I wasn't mad... I was indignant and had every right to be.

But God has been really working in mine and Lisa's lives, and it's especially obvious to us since Jackman was born. In a matter of minutes we were at peace - not happy - but at peace. We reasoned that just because we hadn't got to see Jackman before hand, God was in no less control over everything than if we had got to see him. I figure it was a little test to see if we trust Him as much as we think we do. I mean, it's easy to trust God when He does things like you want them done, but what if He makes it just a little tougher? I just hope He was pleased with our response.

Well, the surgery took a really long time. When the surgeon came out to speak to us, he was carrying a bunch of pictures from the procedure, and I wasn't sure if that was good or bad. He didn't beat around the bush. He told us very straight forward that they were not able to make the attachment, and had went to plan B, which was beginning the stretching process by using stitches. Then he said the words I've heard him say before (they scared me then too): "he surprised me".

Jackman had been diagnosed with Type A - Esophageal atresia without fistula or so-called pure esophageal atresia. That means his esophagus was very short and ended in a pouch (which looks like a flower vase) and there was also a small section of esophagus that came up from his stomach that didn't attach to anything either. Type A is rare. Esophageal atresia of all types affects approximately 1 in 4000 births. Type A affects only 10% of that 1 in 4000.

What the surgeon discovered this time (this being Jackman's 5th endoscopy) is that he actually has Type B - Esophageal atresia with proximal tracheoesophageal fistula. What that means is that it is the same thing as Type A, except that there is a little tube connecting the upper pouch with his windpipe (basically, whatever he swallows can go directly into his lungs). Now if Type A is rare, Type B is extremely rare because it affects less than 1% of births diagnosed with Esophageal atresia.

So what does that mean? If you are about to have a baby, the odds that your baby will have the same thing Jackman does are almost non-existent. Statistics say I will never know anyone who even knows another person with Type B Esophageal atresia. Here's the best one: It will be approximately 8 years before just one other baby with Type B is born in Alabama. Jackman is special alright.

Well, the fistula (the little tube) was fixed today. Also, stitches were put in place to begin stretching. The cool thing is that the stitches are actually coming out of his body through little disks on the back of his ribs so that they can tighten them without having to perform another surgery. Hopefully that means the next surgery will be the one to make the connection.

Here's the tough part: Jackman will remain sedated and on a ventilator until they are done stretching his esophagus. They can't risk him coughing and fussing with those stitches in place. They could tear loose. So that means he will look just like he does in the picture above for who knows how long (days, possibly weeks). No more playing the sticking out the tongue game, no watching the mobile, no cooing, we don't even know if we can hold him.

I don't know if you can imagine how much that hurts. Our quality time with him was already limited; just a couple hours a day within 5 feet of his bed. We were just beginning to know who he really is, but now he will be kept in perpetual sleep. We didn't even get to see him off this morning. How we wish now that we knew last night would be the last time we would get to play with him for a while; we wouldn't have left until they threw us out.

But in all this, my prayer is answered. I never prayed a "God, make it all better" prayer. I prayed that God would bring Himself glory, and I trusted Him to do what seems best to Him with our son. As a matter of fact, I gave our son back to Him. It is hard, and it's not getting any easier, but me and Lisa really want to glorify God more than we want to satisfy ourselves in all this. It's not so people will notice us, but notice HIM. Some people have it all wrong. It's not about our strength... it's about HIS strength. And I'm not talking about some little dose of strength like an energy drink that gives us a boost in a tough situation. I'm talking about the strength to transform lives, and sustain lives.

Plain and simple: this is way bigger than Greg and Lisa's faith. It is about the LORD GOD's power to save, sustain, comfort, and heal, and he is nowhere even close to being finished.

Have you not known? Have you not heard? The LORD is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the LORD shall renew their strength;
they shall mount up with wings
like eagles;
they shall run and not be weary;
they shall walk and not faint.

--Isaiah 40:28-31

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  1. I've been trying for over an hour to post a comment and the right words just aren't there. I appreciate you sharing the scripture that reminds us all how great God is.

    Since Jackman's birth and immediate diagnosis the verse that has come to my mind is the one engraved on the plaque I gave you when you were ordained as a deacon. Jeremiah 29:11.

    "For I know the plans I have for you", declares the Lord. "Plans to prosper you and not to harm you, plans to give you hope and a future." (NIV)

    This is the scripture I've held onto for Jackman.

  2. Continuing to lift you all in prayer. God is being glorified in your attitudes, and how you cling to Him in your weakness. His strength is obvious in you. May He continue to be sufficient for you, and may there never bee a day when Jackman does not know Jesus as His savior, not matter how little he is.
    Praying in far-away New Mexico-
    Chris and Dave Finnegan

  3. Gregg,
    I don't look at facebook very often so this is the first I knew of you son's illness. Please konw that you, your wife and son are in our thoughts and prayers. Giving your children to God is a difficult blessing. Be sure to leave him there, in God's hands.
    Brother Sam

  4. Greg and Lisa,
    I have followed your journey on Facebook and Tina and I have continually kept you guys and Jackman in our prayers. I read your blog today and was moved so greatly. I so desperately am seeking the relationship with God that you two cherish. Thank you for your commitment to an awesome God and helping me in my relationship with my true Father. May God's will continue to be done in your lives and thank you. I shared your blog with my coworkers today and Snoozy the owner of Snoozy's College Bookstore where I work forwarded a link to all of the 250 plus members of the Monday Morning Quarterback Club. The prayers will continue to flow.

    Brad Goggins

  5. I don't know you and Lisa personally. However, I've been hearing of Jackman on Facebook. I am praying you and your families' strength and of course God's will. Jackman is an ispiration!!
    In Christ,
    Erin Davison-Dykes

  6. Please know that Jackman, you & Lisa, as well as your families, are in our prayers. The strength that God has given you is an inspiration to everyone. God is touching so many people's lives through one little baby. Thank you for keeping us updated.