The Thanksgiving Day Update...

We've been running like crazy lately. There's a lot of stuff going on with Jackman now compared to the three months of waiting building up to this point. Right now he is doing fine. He is still sedated, and going through the stretching process.

We've got a lot to be thankful for, and a healthy baby boy is way up there on the list. He's obviously a tough little guy. He's gone through a lot in his 106 days. He tries so hard to wake up out of that sedated state. I've actually seen him get so far as moving around and opening his eyes, and then the nurses have to hurry and give him some more medicine before he starts squirming too much. The thing is that he hasn't given up trying to wake up. I don't think he knows how to give up. I hope he never learns.

As it is right now, his last trip to the OR was a good one. His esophagus has gained approximately one and a half centimeters, and has almost as far to go still. They attached little metal clamps on the stitches next to the ends of his esophagus so they can monitor the growth with an x-ray. They added a new stitch to help the upper part stretch better. He will go back for surgery again sometime in the middle of next week. The plan is to hopefully attach then, but if it needs to stretch more the surgeon said he will go another week, as long as progress is being made (he has the patience of Job).

Just an interesting side note: I found out from the surgeon Tuesday that this procedure is a new one. He told me he had consulted with a couple other surgeons on how successful it is, and in doing so, kind of let me know this was the first time he had ever attempted it (I may be wrong about that, but that's what it sounded like). But I am thankful he's doing this, because the other route would have been to graft in a section of his intestine or relocate his stomach. These guys are pretty sharp.

Anyway, I could sit here all day and think of things I'm thankful for, and make a nice long list of things I would generally take for granted every other day of the year, but I think it makes more sense to say who I am thankful to.

I've done a lot of thinking on this, and I try to be careful how I go about "thanking" people. For instance, I am NOT as thankful to the surgeons as I am thankful to God for gifting them with the talent and ability to do such amazing things. I am NOT as thankful to friends and family for support as I am to God for putting those people in our lives to help us out. I have good reason for being that way. If I thank YOU and give you praises, you have already received your reward which is temporal at best. But on the other hand if I thank God for you and praise Him for using you, then your blessing and reward will come from Him, which is much better than I can do (not to mention He is obviously the rightful recipient of all thanks). I still believe in being polite and thanking people, all I am talking about is who receives my ultimate heartfelt thanks, and that should be God in every single circumstance. You will still hear me saying "thanks" to people, but I'll be thanking God in my heart for them.

That being said, Happy Thanksgiving. I am thankful to God for all of you, and what you have meant to us. Thanks for your prayers and support.

The Quiet Days...

(pictures of Jackman smiling, on his bed)

Well, it's been a quiet few days here since Monday. It looks like things will remain quiet until at least early next week. Jackman is completely sedated, and on medication which causes him to be paralyzed. It's a necessary evil to prevent him from working the stitches loose that are stretching the ends of his esophagus toward each other. Even with all that, he still fights it. The nurses are surprised to see him still twitching on all the medication, but that's the kind of thing that makes him a Harper.

Even still, Jackman is perfectly motionless, night and day, except for the slight movement of his chest when he breathes. It's very awkward for us. We feel somewhat obligated to stay there for a certain amount of time because we are used to visiting with Jackman for so long. But at the same time it's weird sitting there just looking at him, not to mention we are in the way of the nurses who are monitoring him so closely. Even when he was just a couple of days old, we could hold him, and he would look right into our eyes, but we don't even have that now. We can't even pick him up... all we can do is look.

Today was a tough day... for Jackman. Sometime this morning his left lung collapsed. No one is real sure how it happened, but it is obviously due to being sedated and on the ventilator. They called us and let us know what happened, and what they were doing to get him fixed up. When we got to the hospital tonight, they felt pretty certain that his lung had already popped back up. We hung around and got to talk to one of the surgeons, and he explained to us better what Jackman is going through right now, and what to expect over the coming days.

It's pretty amazing really... the course of action the surgeons are taking. It is obviously tedious, and painstaking work. The stitches they did internally come out a port on Jackman's back-right side. Each day the surgeon comes by and uses some special forceps, and tighten on the stitches just slightly. When he does it, he adds a little metal clamp to keep the stitches from pulling back in. So there is a little metal clamp on each of the stitches, and for each time they stretch them. So far, after three times, they have gained one centimeter, judging by the little clamps. So right now the plan it to do his 6th endoscopy early next week to make sure the stitches are holding, and to assess the growth.

I know everyone's heart is breaking for him right now, and us too I imagine. It would be very easy for us to slip into feeling down over the whole situation, especially after the past couple of days. But God has a way of showing us we need to be especially thankful during these times.

Tonight, while I was sitting there looking at our motionless baby, and on the verge of crying, I got an email on my phone. Some of you may have gotten it too. A person we know is collecting cards for an 8 year old boy who loves to get letters. He only has a month to live. That news immediately changed my attitude tonight. It makes our situation look like a picnic. I felt like a heel for ever even being just a little bit down in the first place. I have too much to be thankful for. My heart hurts for that family. God give them Your grace and peace.

I guess that's it for now. I hope you will remember that 8 year old boy and his family when you pray. Be thankful to God, especially when you don't want to be. Think about this: if you're reading this on your computer screen, you are probably better off than approximately 6,327,030,277 other people in the world, and you know you have more than a computer to be thankful for.

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

Jackman's First Photo Shoot...

Jackman did really well in his first official photo shoot. He is somewhat of a ham. You don't have to beg him to look at the camera.

All these pictures were done by a friend of mine. He snapped 336 pictures in 45 minutes. He's obviously an up and coming star in the world of photography. He is also a missionary, and works in some areas in the world where it is necessary for him to remain somewhat anonymous. He has been raising funds to support his family for months, and they live off what the Lord provides through supporters.

If you haven't had your pictures made in a while, and would like your money to go directly to saving souls, or if you would like information on how to support my friend and his family in spreading the gospel throughout the world, I encourage you to email me at gharper356@gmail.com.

Jesus said: "Go into all the world and proclaim the gospel to the whole creation." There are people who are going, and God can use the rest of us to send them.

What a Day, What a week...

It has been a long month... It has been a busy week... It has been a rough day...

Me and Lisa are drained in every sense of the word. After waiting over three weeks, then an additional unexpected week, Jackman finally got his endoscopy that we've been waiting on. I really, really wish I could say we got the news we were hoping for, but we didn't.

After all this waiting, his esophagus hasn't grown at all. It's in the same shape it was 2 long months ago.

The worst thing is that he was circumcised today. That normally happens the day after they are born (from what I understand), but because of everything that happened around the time he was born, that got put on the back burner. Well, since they had him anesthetized anyway, we decided to go ahead and have that done. Needless to say, we ruined his day.

He was inconsolable. We couldn't do anything to make him feel better. He cried and screamed for three hours straight. It was awful. Thanks God he'll feel better in a couple of days.

And now, about the upcoming surgery; I don't really know what to say. This is tough all over again. After all this waiting, we still don't know what's going to happen. We don't know the plan. We don't even really know when something will happen. All the information we have right now is that they will probably do surgery next week. We will probably find out the day of, and the game plan the day before.

So, back to the waiting and not knowing. That's tough, especially when we were counting on finding out something today.

One day, whenever God decides it's time, and according to His plan, we'll get to post some big news on here to His glory. I'm looking forward to that. Until then (and after then), we just keep trying to walk in a manner worthy of the call of Christ.