Originally Posted on | October 16, 2008
Today is John’s birthday. He is one month old. Happy birthday, John!
I’ve loaded three new photos of John in the photo section. One of these shows him without any wires or tubes. It was the first time we’ve seen him since the day he was born without any tube, etc. They took everything off to give him a bath. And they left his feeding tube out for almost half a day. But eventually had to put it back in.
They finished up this morning what turned into his 36 hour pulmonary cardiogram. We don’t have final results back yet, but it doesn’t look like John’s breathing challenges are related to apnea or reflux. So that means they are probably neurological related. At 5pm this evening, they started his 24 hour EEG. This will help us to see if John’s breathing problems are related to seizures. After that, the ENT doctor will come to see him.
So we ought to have a lot of information soon. Please pray it would help us understand what is wrong with his breathing and what might be done to improve it.
We did get some more information today. It looks like John’s heart isn’t doing as well as we had hoped. So they are likely going to have to do a “procedure” on him. Essentially, they’ll run a line up through his leg to his heart. They will expand a balloon near his aortic valve that will somehow help the valve function better. So it isn’t heart surgery. That will come eventually, but not yet. We don’t have details yet, but I’ll pass ‘em along when I can.
A couple of people have commented about the blessings they experienced with other people while they were in the NICU with their children. We have met some nice people while we have been there. And they all have been filled with hope. I noticed that too when my mom was in M.D. Anderson years ago. A lot of people didn’t make it out of M.D. Anderson alive, but that didn’t keep the place with being filled with what I called life at the time. I think this presence of hope or life says something about the power of the fact that we are all made in God’s image.
Speaking of people we have met, I mentioned Emma in the last update. She wasn’t doing so well today, and her parents were pretty down. The one nice thing was that her mom finally got to come see her yesterday. They wheeled her up in a wheelchair. Please pray for Emma and her parents.
Some friends sent along the following note from Joni Ericson Tada. We thought we would pass it on:
Since the children have flesh and blood, he too shared in their humanity. –Hebrews 2:14
When we are hurting, if there is one thing that eases our pain or grief, it is this: We want someone to understand. We want somebody to really identify with us, to have some idea of what we’re enduring.
It is certainly like that for me. I hate feeling alone and alienated in those dark times when my paralysis seems overwhelming. On my really rough days, it helps to remember what the Bible tells us about Jesus identifying with us in our sufferings. It says that he was tested and tried in every way like us. That helps! When it comes to suffering, the Lord Jesus has gone ahead of us, and has intimate, experiential, first-hand knowledge of the pain, the weight, the frustration, and the struggle. He appreciates. He understands. He connects.
But it works both ways! Not only does Christ identify with us in our suffering, we identify with him in his suffering. He identifies with us, and we identify with him. He appreciates all that it means to be human, and we appreciate all that his divine grace supplies. Through suffering, he participates in our humanity; through suffering, we participate in his divinity.
So why do we struggle so to escape our suffering? Why do we look so desperately for release? I suppose this is why I’m not earnestly seeking to be healed and raised up out of this wheelchair. I see this trial of mine as a window into the heart of Jesus. Suffering is a connecting point between my Savior and me. And when I see his great love on the cross, it gives me courage to take up my cross and follow him.