February 24

I thought I might post a general update on Jackson since it's been quite a while since the last one. He is doing really well! We are still rejoicing about the tube being gone--in some ways it doesn't seem possible that it's gone, and on the other hand doesn't seem possible that until a week ago he was dependent on it. As I mentioned, having to now give his medications orally has been our newest battle. It has been a learning process for us as well as for him. He is still on several (10 approximately) medications and most are given more than once daily. It was utterly demoralizing at first. Waking him up throughout the day and night to attempt another cry/choke/swallow. Plus two shots each day. All with the knowledge that there is no end in sight (they are hopeful that at some point he will be off all or most of these medications, but it's going to take more time). I have found the constant "yes, it's awful, but it's for his good!" experience to be extremely difficult emotionally. I feel a new understanding and compassion for any parents who face this on a daily basis. Of course we, as parents, all face this to some degree. Our first two despised "tummy time," but they had to do it in order to learn how to roll over and crawl! But when you pass the "occasional" instance and move into the "routine"...it is very, very hard. But what a thing to belong to a gracious heavenly Father! Just as we only give Jackson as much hurt as we have to for his well-being, so does God. Somehow, imperceptibly, the new routine isn't as hard now as it was a few days ago. He doesn't choke as often, I figured out a better way to get him to take the especially nasty ones, etc. I even realized one night (the wonder of it was that I was thinking clearly in the middle of the night! ha!) recently while I was rocking Jackson that since his tube feedings had been eliminated, I could now consolidate some medication times and eliminate three times from his schedule! Yes, God is continuing to help us in every detail. Thank you for continuing to pray.

Jackson had a follow-up with his cardiologist, as well as an appointment with a neuro-developmental doctor since my last update. His cardiology appointment went well. An X-ray of his lungs showed total resolution of the pleural effusion. One of his doses of Lasix (that helps him get rid of fluid) was eliminated (he still receives this twice daily), and we are waiting to see if he shows any signs of the fluid re-accumulating. If it does re-accumulate, this would be an indication that the stent did not fix the cause of the effusions. Appreciate prayers for him to get off the Lasix completely with no negative outcomes! As I mentioned in a previous post, this cardiologist was with him at birth. At the end of our follow-up he said that he doesn't think Jackson will have trouble coming off the Lasix eventually even if it takes a little time. Then added soberly, "I feel that he is a miracle. I really do. I believe that he will grow up to be a very strong individual." It was so moving to hear him say it. Of course we agree. We were anxious to hear what the neuro-developmental doctor might have to say, since the good reports we have been getting were coming from general practice doctors. It was also a very encouraging report! She said that while Jackson is developmentally delayed in terms of motor skills (he is still working on head control, can't roll over yet, etc.), he shows no signs of cerebral palsy. Of course this is what we have been seeing, hearing, and so forth, but I admit I felt stunned when she said it. The gravity of what God has done for Jackson is mind-boggling! The doctor also said he does not show signs of delay in his social and cognitive skills. The two areas we feared the greatest losses in! Physical therapy is working with Jackson weekly to help him develop his motor skills, and he is making excellent progress. His head control has improved a ton over the past two weeks, and he is now able to roll from his back to his side. We are very optimistic even about his motor skills. After all, he was premature as well as confined to a bed with a million tubes and lines for three months...of course he's going to have to catch up a bit!

Okay so last thing to report--while we were in St. Louis the doctors adjusted Jackson's Morphine wean schedule to where he would wean by 0.1 ml every two weeks rather than the every four weeks that it had been previously. Monday we received our pediatrician's okay to try weaning by 0.2 ml every two weeks and see how he does. This started Monday, and other than some mild fussiness, he hasn't shown any signs of withdrawal. Would you pray with us that he would be able to continue to tolerate this speed? It would mean no more Morphine by six weeks from now! That's all for now. If you've continued reading all the way to here, how about a couple pictures? He is such a happy baby!