Our First Little Family Christmas...

Well, another week is in the books, and for the most part, things have gone really well for Jackman. He has been getting better and better, every day. He is off all the pain medication and they are slowly weaning him off the methadone. He finally has no tubes or tape in his face anymore, which made for some nice Christmas pictures. Also, he is still in a private room in NICU (but I think he misses the party life out on the floor).

We had a really good time on Christmas Eve, and Christmas Day. We got a lot of holding time and a little more playtime in. Granted, this wasn't the "First Little Family Christmas" we envisioned... But I'm not so sure that it wasn't even better.

On Christmas Eve, we had dinner at Zaxby's. The girl working the register was disgusted to see us because they were getting ready to close, but it's their own fault for being open, and putting addictive chemicals in the hot sauce. Lisa told me she was tempted to say "do you think we really want to eat here on Christmas Eve?", but of course she didn't. Just the thought of her saying it was funny enough for us to forget that they had probably spit on our food for keeping them open.

We spent the rest of the evening at Children's with Jackman. We just took turns holding him and trying to make him smile. We actually spent a lot of time just looking at him. It was nice just catching up on some lost time.

We came right back to the hospital Christmas morning to see Jackman. We gave him some presents. He's got a lot of books to read now. He seems to really dig the Dr. Suess books. I've had fun reading them to him. Most of the time Lisa reads and I turn the pages. I read the Mother Goose book that Lisa's folks got for him. It has some amazing pictures in it, but I have to say some of those nursery rhymes are very disturbing. For instance, you've got a girl that looses all her sheep and apparently could care less, a boy jumping over an open flame, three men in a tub together, and a single mother of at least a dozen kids that she beats and neglects to feed. Needless to say I had a lot of fun reading those to him and adding a little color commentary. (note to the grandparents - he loves that book).

We had to leave at 2:00pm for shift change, so we went to Lisa's brother's house to eat and hang out with family. But we just couldn't resist coming right back up to the hospital again. We came back and just visited with him until visiting time was over.

It turned out to be a really good Christmas. With Jackman in the hospital, things actually seemed slower and more relaxed than a "normal" Christmas. We never got caught up in all the usual hustle and bustle. We had a simple plan... visit our boy. All of our family understood completely, and we were under no obligation to do anything or to be anywhere.

Christmas Eve, after we got home, we watched The Nativity Story. We watched it last year, and it really got Lisa's attention in a different way because she was pregnant at the time. This year, it got my attention in a different way because I'm a new father. There is a part where Joseph confides in Mary when they are talking about raising the Son of God, and he remarked "I wonder if I will be able to teach him anything?". For the first time ever, this year, I realized that Joseph didn't mean things like how to throw a curve ball or ride a bike. He meant spiritual things. That gave me pause.

I wonder the same thing, but for different reasons. I never thought I would say this, but the world is a different place now than when I grew up. You don't have to look past your nose to find uncountable obstacles to raising Christian children in a Christian home. It seems hopeless. But before I can even get started good on that train of thought, I am reminded of the other impossible things I've already seen God make light work of. He has done wonders in mine and Lisa's and Jackman's lives that are beyond any explanation but this: He is in control of ALL things. That gives me hope and confidence in raising a godly son in a godly home, no matter how bad things may get.

I'm excited about the future. I'm actually looking forward to the day when my son will ask me one of those tough questions like: What happens when people die? I'm ready for that one. He's already got that inquisitive, deep-in-thought look about him. I may get one of those questions sooner than I think... actually, I can probably count on it.

...know therefore today, and lay it to your heart, that the LORD is God in heaven above and on the earth beneath; there is no other.

Deuteronomy 4:39

Highs And Lows, And It's All Good...

Today makes a week since Jackman had his major surgery to connect the two ends of his esophagus. Since he got out of surgery, the three of us could have opened up an amusement park with all the highs and lows we've had. This past week has been a long one... a tough one... and a crazy one... but a good one all the same.

The first couple of days after his surgery we really didn't see Jackman awake at all. They kept him asleep for a full two days after so the attachment would take. He really looked pleasant most of the time, and everything seemed like it would be perfect from that point on. Then they started to let him wake up.

To even begin to understand the kind of discomfort Jackman has been in is hard for me to understand, let alone describe. He had an incision as long as my hand is wide for the surgery, along with several "holes" for cameras and the scope. Besides that, his insides have been stretched for 5 weeks. Jackman has been on some serious pain medication during this whole process, and is pretty much having withdrawals while he is being weaned off of all that stuff.

Needless to say, he has been the picture of pitiful these past few days. He experienced throwing up for the first time (and several times after), and I'm sure it hurt him and scared him too. It has been absolutely heart-wrenching to see him feeling so bad. He hasn't really been crying, just whimpering. It even breaks the nurses' hearts, and you know they have to have thick skin to do that job.

I have to say that the nurses have been amazing. They have taken such good care of Jackman, and do their best to make sure that he is as comfortable as he can possibly be. I can't wait for about half a dozen of them to move in with us when Jackman comes home.

Anyway, after I think 36 days, we finally got to see a couple of smiles from the boy tonight. Me and Lisa haven't seen him smile since Sunday night, November 15. That is a long time. When we came in the door (to his new, private room in NICU), one of his nurse/friends was playing with him and getting some big grins. It was a sight for sore eyes.

It didn't last long enough to get a picture, but it was a welcome sight. He started getting tired not too long after that. Before we new it, he was dozing off.

So what's next? Well, he still has the chest tube. They decided it was better not to remove it yet, but hopefully that will be soon. I'd really like to hold him again... it's been over a month. Another thing is getting bottle feeding started. They had planned to start that today, but due to the same reasons that are keeping his chest tube in place for now, the bottle feeding has been postponed.

One thing might need some explanation. Jackman has to learn how to take a bottle. Me and Lisa understand this, but most of our friends and family don't know why it's such a big deal.

Jackman has never had any food by mouth, ever. That is not the norm for a baby. Even though his instinct is to feed that way, he has learned differently over the past almost 20 weeks of 8 feedings per day. Not only that, but he doesn't even suck a pacifier anymore after 5 weeks with a ventilator down his throat. He has to relearn that as well because he was basically weaned off the pacifier during the time he was asleep.

So, Jackman still has some things to overcome, but he's awake. He'll be feeling better soon, and we'll be able to hold him again before long. We'll get to have those long visits again soon where we play with him till we wear him out, and he gets all fussy, and fights going to sleep until he zonks out (hopefully really, really soon). We are excited, and looking forward to spending Christmas Eve and Christmas Day with him at his place. It's all good.

We've had a lot of highs and lows in the past week. We should have gone nuts by now, but we haven't. From the beginning, God has poured out so much blessing on our little family that at times we have felt like we were getting too much. Every single need has been provided for, and peace of mind to boot. Jesus promised if we seek God's kingdom and His righteousness first, that He would take care of all our needs. He wasn't joking.

Matthew 6:25-34

The Big One...

Jackman, going into the OR for The Big One...

It may be old news for some of you now, but Jackman had the long awaited surgery Monday evening. He was four months and a day old. He had been asleep for a month. Right now he is recovering, and will be for a few days.

Just to recap, Jackman's esophagus didn't reach his stomach when he was born. There was a 7 cm gap between each end. In the time his esophagus was growing and being stretched to make up that gap, he grew over three inches longer himself. It has taken four months for that much growth to happen. All along we knew it had to grow until the ends were almost touching, and we finally got there.

We got to the hospital early enough to visit with Jackman a little bit. He woke up, but had to be put back to sleep because he was squirming too much. The pre-op call came in about 2:00pm, and he went into surgery around 4:00pm. At about 6:00pm, the nurse in the OR called to give us an update on how the surgery was going. She said he was doing fine, but that they were not able to do the surgery with the scope. Instead, they had to make a larger incision to perform the surgery. They finished up around 7:00pm.

Shortly after, the surgeon came around the corner and simply said "it's attached" with a smile on his face. Me and Lisa could hardly believe it. We didn't even know how to react. Come to think of it, I believe we just sat there with our mouths open.

He went on to explain the surgery a little more, and the stretching procedure as well. He said that the doctor who came up with the theory of stretching the esophagus was a colleague, and that he had spoke with him prior to taking this course of action with Jackman. He also said he was going to watch it a few days, and then call him to share how successful the procedure and surgery were. Our surgeon basically took this controversial technique and personalized it. According to my own research, most experts in the field would have probably not even considered this treatment, but would have immediately opted for relocating his stomach into his chest, or a colon interposition. I'm so thankful God put a surgeon in place who did the research when we didn't know what to do. (By the way, if you click the Wiki link below, the references cited are written by Jackman's surgeon; Carroll Harmon.)

Well, now it's a new kind of tough... the recovery. Jackman is going to be asleep for a few more days while he heals. It's crucial that he doesn't move right now, and tear the stitches loose. He should be awake, off the vent, and starting to feel better in 7 to 10 days if all goes well. They will eventually start weaning him off the drugs he has been on for pain and to keep him sedated. We're not sure when, but feedings will start in the near future. He has to learn to take a bottle. Sounds easy enough, but for four months he has been learning that all he has to do is have it poured through a tube straight into his belly. Now he's going to have to work for it.

Anyway, we are excited. He almost surely will not be home for Christmas, and it really is okay. Me and Lisa are already excited about spending Christmas with our new little family, and the building or town we're in just isn't that big of a deal anymore. We are just looking forward to getting him back. We want to hold him again. We're ready to play again. I'm not only looking forward to seeing his little happy face, but his little mean one too.

I know all of you friends and family are ready to see him in person. Yall hang in there. God will get him home whenever He feels like it, and that will be perfect timing. But for now, for some reason, we're at Children's Hospital... and God knows what He's doing.

http://en.wikipedia.org/wiki/Esophageal_atresia

http://www.eatef.org/node/22

Solid Gold; Video From Last Sunday...

An Early Christmas Gift...

It is three weeks to the day since the last time me and Lisa have seen Jackman awake. There have actually been a couple of moments where the drugs were wearing off and he began to blink his eyes, and once he even opened them, but he has not been awake. It has been a long, long, 21 days.

Just to explain, the whole reason he is being kept asleep is because of the surgery he had three weeks ago. Jackman had a surgery to place stitches inside his chest, on each end of the two sections of his esophagus, to pull on them and "coach" them into growing longer. He has to be kept very still to keep from accidently tearing his stitches loose. Also, they tighten the stitches daily, which causes discomfort, and possibly pain for him. Because of that Jackman is always on pain medicine. This stretching process is tough on him... but he's tough too.

Well, we didn't have church tonight, so I got to go visit Jackman with Lisa. Normally, she goes by herself because she has to get home early to get to bed. I usually go up after church. For the past 3 weeks we haven't had many very long visits. He's always motionless, and if he does move, the immediately sedate him. It really does make it awkward, and hard to visit when the nurses are constantly attending him. But we love to see him and be with him, and we still look forward to getting up there every day.

This evening we parking in the deck, walked in, got on the elevator, buzzed into NICU, and scrubbed in like we have done everyday (for almost 4 months). We had no expectations for tonight other than to watch Jackman sleep. But as we rounded the corner to his bed space, he looked a little different than he had lately. He was moving.

When we got to him, he was wide awake. I'm not talking about laying there in a medicated stupor with his eyes half open... I mean he was awake. We were so happy to see his big little eyes looking back at us that we hardly realized this was unusual. He wasn't crying, or in pain, or any discomfort. He was just awake, and had been for over a half an hour already!

To fully appreciate this, you have to remember he is on a ventilator. The ventilator is a breathing tube that goes into his mouth, down the back of his throat, and into his windpipe, all the way down to where it branches off to each lung. It's what keeps him breathing when he is too sedated to do it on his own. It would be about as comfortable as someone sticking a section of garden hose down the back of your throat down to your lungs.

He was being so good. The only reason the nurse hadn't put him back under was because he was being still and calm. He was in a good mood... I would even say happy. I just don't see how. Even the nurses were surprised, and coming to get a look at "their baby".

We talked to him and stared at him. We were almost pushing each other out of the way to get a closer look. He was fully alert, and as peaceful as peaceful can be. I bet I said "hey bud, we missed you" about 200 times. To look at us with him, you would have thought he was born yesterday. It was so nice to spend time with him instead of just near him. It seemed like everything in the entire world was made right for me and Lisa both tonight.

God is getting all the credit for this one. He made us very happy tonight, and we recognize that He made this possible. Any other Sunday night, I would have been at church, and missed this. I would have died if I knew I missed this. But I didn't miss it, because God set this up just for us. He's that good.

Future Events...

Today was one that I would consider "not good", but even as I type those words, I know better. Needless to say, it was a tough one for me.

Jackman has been sedated, and in a state of induced paralysis for seventeen days now. Seventeen long days. That's how long it's been since me and Lisa got to pick him up and hold him, or see him smile, or cry, or even move. There's just no way to describe what that's like. It's torture... that's a good word for it.

Tonight made it even tougher. The nurses keep Jackman in perpetual sleep so he won't tear loose the stitches inside him. After seventeen days, he's beginning to get used to the drugs, so he twitches a little when it starts wearing off, and sometimes he blinks open his eyes just a little bit. Tonight, he opened his eyes, and kept them open. He looked so pitiful and helpless. His eyes were only partially open, like he was only half awake. He looked like he was begging to be saved from his present condition. I was looking right into his eyes for the first time in over two weeks, and I could have sworn he was thinking "daddy, help me".

I was helpless to do anything. I just wanted to get him and pick him up and get him away from there... but I couldn't. I started crying right there in front of everyone. I couldn't help it. I felt as low as I can ever remember feeling.

If that wasn't enough, we found out tonight that the past week of stretching hasn't availed much. That means the surgery we had so eagerly anticipated for Wednesday is off... maybe it will be Thursday... maybe another day. Bottom line: We don't know anything right now.

I don't think I said a word as we left the NICU and made our way to the car. I felt hollow inside. If I have ever been depressed, this was it. It was one of those deals where Lisa was the one trying to cheer me up, but this time it wasn't working.

We rode in silence all the way to pick up her car. The whole time, bits and pieces of scripture were bouncing around in my head. One verse in particular had been stuck in my head for a couple of days, but I could only remember a piece of it. I knew it was in Psalms; seventy-something. All I could remember was "...until I went into the sanctuary of God".

When we got to Lisa's car, I told her I was going to go to the church before I came home. I wanted some time alone, and I figured I would dig around in my bible and find that passage. To tell the truth, I really felt like I was going to cry some more and I didn't want to be around anybody. For some reason I knew I had to go and be alone before God, but I wasn't in the mood and didn't have much to say.

I got to the church and went into Robert's (our former youth pastor) old office. It hasn't really been used since he left in May. It is mostly empty except for a desk, chair, couch, and some books and stuff on the bookshelves. As I walked the long way around the desk to the other side to sit down, something on the bookshelf caught my eye. It was a little, beige, plastic, pocket sized something that read "FUTURE EVENTS" on the outside.

Of all the stuff left on those bookshelves, that is what jumped out at me. You have to understand, these shelves cover a wall about 12 feet long and 8 feet high. This was the smallest, most discreet, and insignificant thing in the room... and the only thing I saw.

Well, the pity-party was in full swing now. I was ready to sit down and indulge in feeling sorry for myself, and dwell on how tough things are for poor little ole me, but I had to pick it up and see what it was.

Upon closer inspection, I saw below the Hebrew-type font "FUTURE EVENTS" it read in small letters "Lifelines Scripture Memory Pak". I flipped open the little beige pack of 24 memory verse cards and saw these words:

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4

Were there ever words so appropriate and comforting as those at that very moment? It should be noted that there are over 31, 100 verses in the Holy Bible before you chalk this one up to coincidence. I realized instantly that God had personally comforted me, and not only that, He had begun to bring comfort to me before the events of tonight. That piece of a verse that was stuck in my head for days was no accident. I had thought that was the passage God wanted me to find and read, but it was His personal invitation to me to come into His presence and be comforted by Him.

I just sat down at the desk... awestruck... amazed. I couldn't complain. All I could do was give Him thanks. Of all the things we've gone through in the past 120 days, he has never left us to deal with it on our own. He has amazed us on almost a daily basis. I don't even know what else to say. Maybe this...

Now to him who is able to keep you from stumbling and to present you blameless before the presence of his glory with great joy, to the only God, our Savior, through Jesus Christ our Lord, be glory, majesty, dominion, and authority, before all time and now and forever. Amen.

Jude 1:24-25

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.

Some Recent Shots...

Funtime...

Serious time...

Uncle Jeff time...

Aunt Leslie time...

Night time...

Discovering his hands for the first time-time...

Sittin with Daddy time...

More sleepy time...

11 Week Old Update...

I already know what you're thinking... at least someone is thinking it. Where was the 10 week old update? Well, things have been hectic, and we were kind of holding out last week hoping to find out what would happen this week with Jackman's upcoming surgery.

Well, we're still waiting. We were told last week that "they are going to check him out again" this week. It's amazing how ambiguous that phrase is when it applies to your 11 week old baby who happens to be living in the hospital waiting on surgery.

We have been relying on our past experience since we have been there to decipher exactly what that means. The short of it is that they normally call (very short notice) the day they plan surgery. That means we don't know it the day before. We just have a time slot, like now, that we are waiting on that call to come.

So ever since the wee hours of Monday morning, we have been anticipating a call (that obviously hasn't yet come) informing us that today it the day.

That's a strange feeling. Think about it; how many of you with children would look forward with anticipation, excitement, and hope about having one of your own go in for surgery. Really, it's a trick question, because in the same scenario, I believe anyone else would as well.

Regardless, the boy is doing just fine. He's happy as can be, he's getting big, and gets all the attention in the world. He even had his own photographer come get some shots (which you will get to see soon enough). He had the nurses in a collective swoon as he hammed it up for the camera. They were all doing their level best to get smiles out of him. As soon as we were finished, I laid him in his bed and he was asleep in literally seconds.

Anyway, I will post again when we know something. That could mean after surgery, depending on when it is. All three of us appreciate all the prayers. Stay tuned...

His First Trick...

Well, we're just over nine weeks old, and he's got his first trick down pat.

Really, he can't take all the credit... it's a team effort. Maybe you have already figured it out from the picture, but if not, I will try to explain this amazing feat of concentration and synchronization to you.

First, I stick out my tongue and smile and make a noise. I do it about three times. Then Jackman smiles and sticks out his tongue. This may sound easy, but I challenge you to try this with a stranger on the elevator, or a cop, or your boss, and see if you get the same results. I doubt it.

I know everyone thinks they have the smartest kid in the world, and when they do something it's more special than what other kids do. I'm not going to try to get you to believe Jackman is the smartest baby in the world. There are approximately 133 million babies born each year. I concede that it would be a stretch to say he was the very smartest baby born this year (even though he is most certainly in the top ten). Likewise, newborns account for 327 bajillion acts of cuteness a year. Jackman's trick probably isn't the cutest thing ever (even though it is the cutest thing ever done by a baby in the Americas).

Okay, I'll admit, now I get it why everyone's baby is so cute and so smart. I really try to be objective about all this, but when we figured out that little trick the other night I was amazed. I immediately started telling Lisa "he's brilliant, and only nine weeks old..." (as if she somehow forgot how old he is). Lisa brought me down a few notches when she told me it was perfectly normal. In my head, I started trying to figure out how normal was exceptional in his case. I thought it was just amazing.

I can't figure out why something like that is so meaningful to me. It's such a simple little thing. I'll be honest, when people have told me in the past about the "amazing" little things their youngsters have done, it didn't have any kind of impact on me.

I know it partly has to do with the fact that he's my young'n. That explains a lot. Maybe another part of it is that he seems to like me. It made me feel really good when he was smiling, and responding to me. But that doesn't fully explain why I feel like my boy is extra-ordinary.

I think it has everything to do with my hopes and expectations for him. What parent doesn't start out raising a little major league ball player, or beauty queen, or whatever. I know that in the back of my mind, I want him to accomplish more, and better things than I have. But I actually thought about that for several years before we ever got pregnant. I have even loftier goals than that for him.

I want Jackman to make God as happy like he made me when he copied what I did the other night. I know for a long time that will depend on me, copying what God does so the boy can see it, and do it also. But then I want him to realize Who I am copying, and choose to follow the Lord. That would truly make me more proud than watching him on TV one day.

He's off to a good start with the copying thing, and I have to be extra careful now that we have a little copycat on our hands. Stay tuned for the next amazing Jackman moment.

Nurses' Pet...

Well, Jackman turned two months old Monday, and nine weeks old on Wednesday. There's not really any news to update. We are all still waiting while Jackman is growing. He is growing by the way; over 11 lbs now and almost 23 ins long. If we're not careful, he's going to outgrow some little outfits before we outfit him with them. We're looking at waiting another 2-3 weeks before there's any re-evaluation or surgery. Sow we're all just being patient, and enjoying life.

Apparently, Jackman is really enjoying life. It sounds like he's got it made, and got all the nurses wrapped around his little- little finger.

One of the nurses has been planning Halloween outfits for him for a month. You would think it's her kid. She can wait to get him fixed up in something. She given us a list of all her ideas, and if we don't bring her something to dress him up in, I wouldn't be the least bit surprised to come in and find that she's taken it upon herself to provide a costume.

It's painfully obvious at this point that Jackman has become the top dawg in the NICU. All the nurses love him, and they are spoiling him rotten. It's like having teams of grandparents tending a baby 'round the clock. Just tonight, when we got there, he was propped up in a baby chair watching a DVD. Last night he started fussing, so one of the nurses sat with him and started studying with him... apparently he likes to study.

Tonight was the best. We had just got him to sleep, and started to head for home. When we left and got off the elevator, Lisa realized that we left the camera under his bed. She went back to go get it, and when she got back in the NICU, our nurse had gotten him out of bed, got in the rocker, and was watching another movie with him. Caught in the act.

We understand now why they are getting so fond of him. Several of the nurses have told us it's rare for them to have a baby in there they can "play" with. Most of the babies really need intensive care, hence the IC in NICU. Jackman really looks out of place there now. He's really in good shape.

I think another reason they are all hooked on him is due to the fact that he's smiling at them now. Once one of those nurses gets a smile from him, they are hooked. One nurse was working on the seventh floor NICU about a week or so ago, and on her break came down to our NICU to see Jackman. He's almost laughed a few times too. I will make him laugh within two weeks, I'm so close now. He's doing everything but actually making the laughing sound. Whenever he starts laughing, he's really going to have a following. I bet they never hear that up there.

There may be one more reason for all the nurses swooning over Jackman... the name. I think it does something to them. It must have some sort of associative value. His new nickname (according to the nurses) is "Hugh", if that tells you anything.

Yep, Jackman has got it made. He wants for nothing. I think I can speak for Lisa when I say that we don't worry about him being up there. We are really thankful for all those nurses up there. Almost all of them treat Jackman like he's their own flesh and blood. I think when our time at Children's Hospital is over, the three of us are going to miss all those nurses... I'm sure they will miss "Hugh" too.

Test Run: Posting a Video

Jackman enjoying his Mobile...

A Few More Pics...

It's a rough life

Check the hair... and the hint of attitude

Jackman's bachelor pad... looks like he's in jail when the side is up.

Hair has gone brown, but still sticking straight up

I still don't know how he gets those eyes opened up that wide

8 Week Old Update...

Well, Jackman turned 8 weeks old Wednesday. I doubt we'll have any new news to report for a few more weeks. We are in much better spirits than the last time I posted on the blog. I didn't really want to fool with it for a few days after that.

But Jackman is doing good now. He didn't feel very good for several days after the endoscopy. It irritates his little throat, and I think it causes him to produce more mucus, which his suction tube doesn't get out very well. Basically, he spends the next few days after the endoscopy choking on phlegm, and that wouldn't put anyone in a good mood.

Now he's starting to get happy and playful again. I would almost swear that he is trying to talk, and all the nurses say so too. When you talk to him, he moves his mouth and his tongue, and makes little sounds. I think it drives him crazy that he can't talk yet. And he could beat anyone in a staring contest; he refuses to break eye contact.... very confident.

Anyway, we didn't get to see him tonight because the NICU was closed again. They were waiting on a family to get there, so that didn't sound good. I hope it's nothing too bad, but we'll be checking all our little neighbors beds when we get up there tomorrow. They told us Jackman was okay, so we are thankful.

On the way out of the hospital, me and Lisa were a little surprised that we didn't feel like we had to stay longer (even though we were told we wouldn't get to visit). We just decided that we had done all we could, and might as well come on home and rest a little. If this had happened a month ago we would have been so sad and disappointed. Don't get me wrong, we really wanted to see Jackman tonight. It just wasn't devastating this time; we were stronger.

That got me thinking. I prayed several times that God would make us strong parents (and especially me). I believe we all tend to think that when we pray for something like strength, patience, wisdom, etc., that God will just zap us with it, and we'll have it forever. I don't discount that God will give us a boost every now and then, but I don't think he just automatically loads us up with those disciplines. I think he cultivates them in us.

For example: I prayed fro strength, several times, but I never got zapped with it. But I have noticed (to God's credit) that me and Lisa have gotten increasingly stronger over the past several weeks. God has been cultivating strength in us.

It makes me wonder how many things I have prayed for in the past, and then complained when God started the cultivating process. Like wisdom for example. I know I have prayed for wisdom in the past. I would have to admit that what I expected was to wake up the next morning with all the answers, so to speak. But in reality, God orchestrated a series of events that was intended to cultivate that wisdom in me. Looking back, and can actually see how that happened in several cases.

Plain and simple, Jesus said if you ask for something in His name, you will have it. I don't think those are magic words. It means if you ask for something in line with His will. That means if I ask for something (like wisdom) that lines up with who Jesus is and who He wants me to be, He's going to make sure I get it (assuming the motives are pure of course). The thing is that the receiving it process is as valuable the having it.

So now I'm really on the lookout. I know that in everything God is growing me by either teaching me or simply building character in me. It kind of reminds me of the Karate Kid. Daniel-son didn't know it at first, but everything was a lesson. Later Mr. Miyagi showed him how every little monotonous thing really meant something, and it was a lesson for him to use later on. He didn't just tell Daniel-son what to do when he was in the big fight; he began preparing him before he even realized that's what was going on. Then, when it mattered most, those moves flowed out of him naturally.

Anyway, I'm trying not to be in a hurry. I want to enjoy the ride, even if it is a little off the beaten path. I believe God is going to show us a sight we wouldn't see otherwise.

7 Weeks Old, and Counting...

At this very moment, I am sitting in the waiting room outside NICU, hoping they will let me see Jackman, even though visiting hours don't start again till 5:00pm. He just got out of surgery. They did another endoscopy to see how much more his esophagus had grown. You may remember last time it had grown almost 4 centimeters in 3 weeks, which was amazing to the surgeon.

Well, It's all I can do to keep from crying right now. I just found out there has been virtually no growth at all since then. I had to call Lisa at work and tell her. I'm sure she had to take a break after getting that news. We just new it was going to be time to have the surgery and get home. The surgeon even told me that due to the growth last time that he expected to be able to tell me they would be doing surgery soon, and even he seemed disappointed with the results.

Bottom line; we just got another month or better at Children's Hospital.

There are no words to express how disappointed I am right now. I honestly never thought for one second that we would get this report. We saw Jackman's charted growth, and it has been amazing over the past couple of weeks. I just assumed his esophagus was growing as fast as the rest of him.

Like I said, I had to call Lisa and break the news to her. It took me about thirty minutes to figure out what I would say so that I wouldn't make her start crying at work, and I really doubt that it mattered. I told her God has got something planned, and everything is right on schedule according to Him, even if we can't see it now, and then I remembered something that happened a couple of days ago.

I was planning on meeting Lisa at Chic-fil-a on 119 right after she got off work. We were going to get a bite to eat and run on up to the hospital. I got to Chic-fil-a and waited a few minutes, and then got a call from Lisa... she was running late and wanted me to come meet her at work. Keep in mind that we are both already aggravated and stressed because she just started back to work, and our lives have been shaken up again. I went and got her, and I was getting hungry, but I wasn't backtracking to Chic-fil-a, so we headed up the road. A few miles later we came up on a bad wreck involving about six or so cars. It had just happened. Some of the people were still in their cars. This wasn't a fender bender, it was a collision.

We were almost in it... just a minute or so late. It turns out, if Lisa had met me at Chic-fil-a, we would have been stuck in terrible traffic, and lost all our visiting time with Jackman. But instead, that minor inconvenience and little setback saved us time, aggravation, and high blood pressure on down the road. We were in just the right spot to see that we could have been involved, and yet, get on past it to see our boy.

I'm trying to live, realizing God has it all planned out just right, and knowing that I am not able to see the other side of it yet. Just because we didn't get the immediate results we wanted doesn't mean that God didn't either. Just this morning, when I prayed I gave Jackman to the Lord again, and my prayer was simply that I trust Him completely. I still do. I'm not pretending to be all happy about this part of it, but I know there's more to it than I can see, and I really do trust Him... so we will wait.

Six Week Update

Jackman turned six weeks old today. I can not believe our baby is already six weeks old. The past few weeks have been an exhausting blur, and just about the time we start getting used to it, everything is about to change again.

We have been going to the hospital every night and staying till visiting hours were over, but Lisa started back to work today. That means a few different things:

First, Lisa has to go visit Jackman earlier now she can get home and get in bed. Today she went straight to the hospital from work. I was with the Youth tonight, so I didn't get to head up to the hospital until it was time for Lisa to leave. I found out we actually passed each other in the parking deck tonight. I just got home and she's already asleep. I didn't even get to find out how her first day back went.

The next thing is that since Lisa is going to be pretty much just working and visiting Jackman, I get to be the little homemaker. That should be interesting. Also, when Jackman comes home, I get to be the stay at home mom. That should be really interesting. Does anyone have a training video I can borrow like Mr. Mom, Daddy Daycare, or Mrs. Doubtfire?

Well, let me update Jackman's status because I keep nodding off. We found out yesterday that they will re-evaluate Jackman in 2 more weeks and see if it's time for surgery. That means in the best case scenario, we would get to bring him home in about a month as long as he recovers well. Of course, that's about the extent of what we know now. Anything else we will find out on the fly including when the surgery will be. Most likely they will call us up one day out of the blue and say they are about to start. That's the way the others went.

Lately, Jackman has had some trouble. That's mainly why I'm not my normal self. It's really hard to see him not feeling well. The trouble is with the thing called a replogle, which is that awful suction tube going up his nose and down his throat. It really irritates him. it used to be in his mouth but he kept pulling it out, so they put it up his nose. Well now he's pulling those out.

A couple of days ago something happened that clogged the replogle, and he got choked on his own spit backing up (oh yeah, the purpose of the replogle is to suction out the spit he swallows since it can't go to his stomach. If it doesn't come out, it fills his esophagus then goes down his windpipe). After that they replaced it, but it took a wrong turn and went down his windpipe instead of his esophagus. That hurt him, and since then he's been hacking and coughing and choking. It's so horrible to hear. I know it probably sounds worse that it is, but it sounds awful.

Needless to say he hasn't been real happy the past few days. I just wish he could have some peace and get some sleep.

Speaking of sleep, I better get some. Sorry this post is so dreary, I'm just bummed that Jackman feels bad. But he's healthy. He's considered a "well baby" by the nurses, and he'll get to feeling better. I just have to keep giving him to God, especially now.

Peace of God...

... And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7

I have heard this verse all my life, especially the part that goes; "the peace... which surpasses all understanding". I have heard it in lessons, sermons, advice, and lots of prayers. I don't guess it ever occurred to me that I didn't really get the meaning of it. I just figured I knew what it meant, but I didn't.

Jackman is 5 weeks and a day old today; that's 36 days. Since the day he was born, he's been in Children's Hospital. Every night, for 36 days, we have left our baby boy at the hospital at 10:00pm and drove home without him. I know some mothers who have 5 year old kids, and have yet to spent a night apart from each other. We've never even spent a single night with our baby.

Of all the things we've dealt with so far since Jackman has been born, not having him with us is by far the hardest. You might think it gets easier as you get used to the situation, but I have found over the past week or so it gets even harder. It's like that old saying goes; "Absence makes the heart grow fonder".

The first few days, it was really hard to leave him at the hospital and come home. I went to see him twice a day while Lisa was recovering. Naturally, Lisa would cry at night when we came home, and I would cry during the day on my way home when I was by myself. The whole situation made for emotional overload in those first few days.

But I noticed that didn't last long. Soon, we were in good spirits when we would leave the hospital. We didn't loose sleep at night with him 30 miles away. We didn't feel like we had to spend every waking moment at his bedside looking at him. I continued to go to church ever since he was born, and the only reason Lisa missed was while she was recovering.

We talked about it a couple of times; basically how we felt a little guilty that we weren't crying every time we left, and beating down the doors every morning to come see him. We didn't understand why we were at peace. We felt we should have been more concerned, more worried. We wondered why we didn't ask the nurses more questions and hassle them every chance we got. We wondered why we didn't tell them how to do their jobs. It was beyond all our understanding. That's when that verse came to mind, and I finally got it.

That's "the peace of God which surpasses all understanding". You can't manufacture it. You can't decide to just "have it". It's not something I can take credit for. It's the peace of God, and it's His to give.

There is one part that depends on us, and that's the taking. It's up to us to take the peace instead of the misery. The funny thing is the misery is more comfortable for us. It's the quick fix, and it's what the natural part of us wants so badly. We feel like we deserve it; to wallow in that misery like pigs in the mud, and hopefully we'll get some pity to go with it. The peace doesn't satisfy our natural cravings at all.

When God offers that peace, it's a sure sign He's about to take you to school spiritually, and teach you a thing or two. It's kind of like graduation gifts before you go off to college. Misery would be cash; it's satisfying but short-lived, and in the long run just not very fulfilling. Really, who remembers what their graduation money went toward unless it got you in trouble. On the other hand, peace is like the big old dictionary somebody got for you. When you got it you're like "hmmm, thanks, just what I didn't want". But you have to admit, it came in handy, over and over. I still have mine, and I still use it.

Me and Lisa have that peace. Lots of people don't understand it. That's okay, cause we don't either. That's why it's the "peace of God, which surpasses all understanding". There's nothing special about us. The peace we have can be had by anyone who trusts in God. It's God's peace, and He offers you just what you need; all you have to do is accept it.