Tuesday, January 26, 2010
All these pics were taken by a friend of ours. It took longer for me to decide which ones to put on here than to actually upload them. There were so many good ones I had to just start closing my eyes and picking. He took over 700 pictures in less than an hour, and managed to get some unbelievable shots. Seeing the pictures scroll through on the screen saver at home has really been good for our hearts (especially during the month Jackman was asleep).
Our friend that made these pictures does this for his enjoyment, and to make a few bucks on the side to support himself and his family in their real work. He is a missionary to the Middle East. If you were having trouble deciding whether or not to spend the money on pictures right now, go ahead and get some and support some missionaries while you're at it!
Our friend has to maintain a certain level of online anonymity due to the hostility toward Christians and the spread of the gospel in some of the countries he travels to. If you would like to contact him to shoot some pics, or donate about $10,000.00 toward their efforts, I would be happy to put you in touch with him. Email me at firstname.lastname@example.org.
Monday, January 25, 2010
Well, as it turns out, it was too good to be true. We did not get to room in yet. The good news is that Jackman is doing just fine. He's not sick. On the contrary, he's feeling great, and is as happy and as playful as he's ever been. It's really a good thing we didn't get the process started, because who knows what kind of shape we would have been in if we had moved out of NICU too early. Anyway, a homecoming is still on the horizon, so yall hang in there.
Above is a picure just to show you how terrible our poor little baby feels right now, and how miserable and pitiful he is (I hope you are picking up on the sarcasm, because I'm laying it on pretty thick). This was taken Saturday night, or as the nurses call it "date night". That could explain the grin. Don't be deceived, we are going to have to pry him away from that hospital.
Also, I plan to get some of Robert's pics up soon, but our computer crashed, and is running like a box of rocks right now (perfect timing). Apparently January is the month when everyone's stuff breaks. When I get a few minutes I'll work on that. They are worth the wait. He did a good job.
Thursday, January 21, 2010
There may finally be a real answer to the question "When is Jackman going to get to come home?".
First of all, I know it's been a while since we've updated. Me and Lisa have had a lot going on since the new year began. I hate to admit it, but both of us are pretty stressed. I guess the past six months had to exact some sort of toll on us. I don't know if that the case or not, but we've just had a tough few weeks. It feels like time is running off and leaving us, and everything we own is breaking along the way. You probably know the feeling, and if you don't, you must be in prison.
All that aside, Jackman has made steady gains ever since he woke up and came of the ventilator. He's been getting stronger. He's rolling side to side and playing with his feet... he is amazed by them, and obviously very proud that they belong to him. He's been grinning a lot. He smiles now when we come in. It's neat that he recognizes us when we come around the corner. Just a couple days ago he started baby-talking (except for when he clearly said the word "hey", which for some reason doesn't count as his first word). Since he woke up he's really been doing some catching up on that month he spent sedated.
Last week he had what we hope was his last surgery ever (aside for fixing his stomach back after the g-tube comes out). The surgery he had performed was a fundoplication. It was a success, and they were able to do it without making a large incision. He was happy and playing the next day. The surgery was mainly to keep him from throwing up so easily. After a couple of days, they got to try working with the bottle again.
Now there's something that's going to take some work. As they expected, he just ain't real fond of the sensation of milk in his mouth. It makes about as much sense to him to eat that way as it would for me or you to eat through our ears. It's going to take some time and patience to get that train on the right track again, but he's been doing a little better each time.
Well, things were going so great, they decided it was time for him to move out. He's completely weaned of the methadone, and he is completely off the liquids, so there's nothing holding him back. They went ahead and made plans for us to "room in" this Sunday. All the parents do that. The parent and the baby move into a private room together, get a little training, and basically just to make sure everybody is "cool". Really, me and Lisa would have a panic attack if we just walked out of NICU with him. People need that gentle nudge back into the real world.
So the plan is to room in Sunday, stay two or three days, and then finally bring the boy home. Sounds too good to be true, doesn't it?
There's a new wrinkle. Just today they went on "precautions" with Jackman. That means no one goes in his room without first putting on rubber gloves and a gown. I'll spare the details, but they are concerned he may be sick, or have some kind of bug. We should know tomorrow because they are running some tests. The thing is, if he does have anything that causes him to be put on antibiotics, we probably won't be rooming in as soon as we thought. That translates into not bringing him home as soon as we thought. He certainly knows how to keep things interesting.
That was a tough pill to swallow tonight, especially for Lisa. We are really hoping he's fine, and that everything is a go for this weekend. Now I won't lie; I'm a little scared and a little nervous, but I've felt that way before about other things and it all worked out. I'm pretty confident we can handle the boy... the house may fall down around us, but we won't neglect the boy. Feeding him will be the easiest thing; it's about like gassing up the car (put in hose - fill tank). Now Lisa... she wants him home too bad to even have thought about being nervous (plus she knows she's got a baby expert in the house with her).
Anyway, after 23 weeks, close to six months, there is finally an end in sight. The closer we get to that end, the more we realize it is just another beginning. That makes it exciting and sad at the same time. It's not that this part of our life with him is bad, we just want more of it with him. We're really hoping to have him home soon. Stay tuned...
Wednesday, January 13, 2010
If you are on Facebook, you are in luck. Our friends, Robert and Holly, came to the hospital last weekend to get some really good pictures of the boy. Robert posted a sampling of them on his Facebook, in the album THE Jackman aka Lil Harp. Click the link to check'em out. Robert took the pictures of Jackman at Halloween. He does a good job, and gets some really unbelievable shots. Check out his other albums of work he's done for other people. When you get ready for some family pictures, give him a call. I can put you in touch.
If you're not on Facebook, you can try the link and see if you get lucky, but you may have to wait till we post a few on the blog... (you are so jealous of Facebook people right now). I'll try to make it quick.
Sunday, January 10, 2010
Now, does this look like a baby that belongs in the Neonatal Intensive Care Unit? Everyone is asking (and even the nurses are wondering) when the boy is coming home. Jackman looks good, he's happy, and healthy. So what's the hold up?
Well, there are reasons he is still there. He's closer than ever to coming home, but not quite ready.
One reason he is still there is that he may be having another surgery soon. It's called a fundoplication. Everyone there calls it a fundo, which sounds like most fun-est surgery you can get. In a nutshell, it helps close off the esophagus from the stomach to prevent reflux. As of right now, he still can't keep any milk in his stomach, so it is pumped through the tube in his stomach, straight into his intestine. He's completely off the intravenous diet now, which is good. He just gets a steady, healthy, flow of milk pumped in 'round the clock.
That's kind of the other thing. Bottle feeding. He's still not working on it quite yet because of the whole reflux problem (he throws up everything). He has had a bottle a couple of times now, but from what we've been told, he didn't even pretend to like it.... he hated it.
So here's the deal. Jackman is a baby, and babies are supposed to have milk and like it. Babies are also supposed to be at home with their parents, and free of monitors, leads, IV's, PICC lines, g-tubes, j-tubes, oximeters, replogles, and ID bracelets. So far, this is the only life Jackman has known, and by all appearances, he is just as happy and content as he can be. I mean seriously... just look at the pictures.
He has no idea that a much better quality of life is in store for him. He doesn't understand that the completely uncomfortable and foreign experience of taking milk from a bottle is the door to that better quality of life. Even though that bottle of milk to him seems unnecessary, it is the key to being free of all the tubes and hoses, and a whole new life he can't even imagine. So even though he thinks nothing of it now, and feels fine and dandy without it, drinking that milk will be the beginning of a brand new life for him... and he'll soon discover that he loves it. We just wish he would taste and see that milk is good.
It's almost funny to me the way a verse will sometimes just "coincidentally" pop into my head... kind of like this one: Oh, taste and see that the LORD is good! Blessed is the man who takes refuge in him! Psalm 34:8.
No doubt, God uses parallels in everyday life to demonstrate the reality of the spiritual life. I remember being just like Jackman is now... I didn't know any better. I knew what seemed to make me happy, and what seemed to give purpose and fulfillment to my life. I thought I was totally free of any restraints. I was certain that my never-ending search for fun was actually... fun.
It's scary to look back on it now and realize that what I was absolutely convinced was the good life was in reality just the opposite. It finally caught up with me. I literally got exhausted living that way. Trying to have fun felt more like working overtime, and the happiness of one day had to be replaced the next. In Matthew 11:28, Jesus says: "Come to me, all who labor and are heavy laden, and I will give you rest." That's what I did. I remember telling Him "I don't want what you are offering me, but I really wish I did". That was the beginning of the new life that I could have never imagined before.
Jackman will eventually get tired of that pacifier. There is a reason it is called a pacifier and not a satisfier. At some point, he is going to realize he wants something more, and that the pacifier is more work than reward. One day, Jackman will taste and see that the milk is good, and soon after he will be completely free of all the tubes and cords and leads that are holding him back. Naturally, he's going to bump into a coffee table or two. But it will be at our house, or someone else's house, because they don't have coffee tables to bump into in the NICU. Likewise, I have run into some tough times along the way, but the truth is that there has been more joy in the worst of times now than there was in the best of times back then.
Like newborn infants, long for the pure spiritual milk, that by it you may grow up into salvation— if indeed you have tasted that the Lord is good. 1 Peter 2:2-4
Thursday, January 7, 2010
Here's a little video of Jackman trying to laugh. He barely makes a sound, so you may have to turn your volume up. It's really too bad that we didn't get his best laugh on video... but this will do for now.
Monday, January 4, 2010
It's been three weeks to the day since Jackman had "the big one". Obviously, we are still in the hospital. We kind of new we would be hanging around the hospital for a while after the surgery, but with no idea how long. We still have no idea.
Me and Lisa are really okay with not knowing at this point, but I know for our family and friends, it's driving them nuts... maybe even you too. Every time we run into someone, the first thing out of their mouth is "how is Jackman?", then they ask, "when's he coming home?". I know they get tired of hearing me say "I don't know", but that's the truth.
So just a little update on how the boy is doing: He is healing up nicely. He is still being weaned off the methadone slowly, and has a little way to go yet before he is completely off it. He shows hardly any signs of withdrawals most of the time, except just a little when they drop his dosage (even though they dropped it again today and he was happy as he could be).
The main problem he has now is feeding. He can't eat. He throws up everything he eats. Because of this, he hasn't even got to work with taking a bottle. We were told before the surgery that he would have problems with reflux (throwing up) to some degree, but I would have to say it's extreme since he isn't able to keep any food in his stomach at all.
To make sure that Jackman gets some real nourishment, they put in a feeding tube that goes into his stomach, and down into his intestine. The milk bypasses his stomach altogether. He has another tube right beside it that drains his stomach. We don't know when they will try to start bottle feeding, but he is getting milk now.
It sounds like this reflux problem could last a while. Whenever we do get to bring him home, he may still be on a feeding tube, and we would have to work with bottle feedings. We do know that as long as his reflux problem is as bad as it's been, he will be in the hospital.
Naturally, we want to get the boy home, but to be honest, we've had so much fun with him since he's gotten back to his old self that we haven't been that concerned with getting home. I just wish everyone else could get to see him.
It may help you to know that Jackman is far from suffering. On the contrary, he has a half of a dozen nurses wrapped around his little finger... In Three Shifts! When I came in the door three nights ago, they were playing. Last night... watching a movie. Tonight... playing. He even has a physical therapist that comes around with a mat so he can get some floor time and work on getting those crawling muscles built up. He gets lots of love and attention 'round the clock.
Coming home, whenever it happens, will be a big change for us. But it is going to be an even bigger change for Jackman. As far as he knows, he's home and where he belongs now. As far as he knows, all babies are suppose to have fifty-dozen hoses and wires attached to them. As far as he knows, good ole dirt and germs don't exist (we'll get in the dirt as soon as he gets home, maybe even eat something off the bare counter, or even the floor, like real men do). He will definitely notice the change, but I think he'll like it here with us.
He will be home one of these days, but we're determined to enjoy every day with him until then as well. It's hard to imagine not going to the hospital anymore. The people and patients in the NICU are his family too, and it kind of makes them family to us as well. We will really miss being there when the time comes to leave, but I have a feeling the boy will keep us so busy that we don't have time to sit around and be sad. Hardly... we are going to have to have a party just to show him off.
Our church, Concord Baptist Church, is having a baby dedication service on January 17. I had expected to be a part of that service with our son, but that's not likely anymore. I was talking to a friend about that today, and I told him "it's, okay. I dedicated Jackman to the LORD a long time ago". He said to me, "a lot of people have dedicated Jackman to the LORD". He's right.
Me and Lisa are still thankful for all the prayers, and thankful to God for ministering to us through all of you.