Monday, December 28, 2009

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

Monday, December 21, 2009

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.

Tuesday, December 15, 2009

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.

Sunday, December 6, 2009

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.

Tuesday, December 1, 2009

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