I'm home all day...

...for the first time in, I don't know, 17 days? Since little Luke was born, really. See, Jack woke up with a fever this morning, so I'll be getting my reports on Luke via a call to his nurse. Not a day has passed yet that I haven't seen him, so I'm going to do my best to stay distracted and not think too much about it. Except for right now, of course.

We have hit a strange plateau in Luke's progress. In many ways, he is doing so wonderfully well. His heart procedure seems to have been a success. We are waiting for the results of an echocardiogram he had yesterday afternoon, but the doc was optimistic. He had a sudden fever a few nights ago that lasted just a couple hours, but to be safe, they put an IV in with antibiotics. Beyond that needle, he has not needed any IVs for several days. He is being fed completely by breast milk (via a feeding tube) that I am faithfully pumping round the clock (it is a LOT harder to get up in the middle of the night when there is not a baby crying for you.) and he is gaining weight really well. He is already up to 5 lbs, 6.5 oz. Great increase in 2.5 weeks!

So why are we still here? Well, the team tried to take his breathing tube out earlier this week. Luke barely uses the ventilator at all and has been incredibly stable, so it appeared to be the next logical step. But within about 20 hours, he wasn't breathing sufficiently. After a brief but scary few minutes (during one of my visits), Luke was re-intubated and breathing again. He is now waiting to be evaluated by an ENT (Ear, Nose and Throat doctor) and a Craniofacial surgeon to see what is impeding his breath. Their best guess, before doing a scoping procedure under anesthesia, is that his airway isn't formed properly and cannot stay open on its own.

So we are waiting. Waiting to hear from doctors to schedule this procedure to evaluate his airway. We have been waiting for 4 days. I am in desperate need of more patience. And this day at home with nothing to do (ok, sure I have stuff I NEED to do...but, you know...) is not helping.

John and I are completely confident that the eval is going to show that whatever is wrong with Luke's airway can be fixed. Maybe it is naive to think that way. Maybe God is giving us assurance that we should be hopeful for positive results. We have this thought that we just need to get this next step behind us, so that we can take our baby HOME. See, once his airway is working properly, we just have to make sure Luke can eat. We already know he can take breast milk and is gaining weight. But once the breathing tube is out, we can see how strong his oral skills are. And we are not worried about that hurdle. So here we are, waiting to climb this next mountain, but our tour guide seems to have gotten lost!

We know our impatience is not beneficial. We know we ought to speak our thoughts to the doctors and then rest knowing that God has a perfect timing for this. (For instance, had the procedure been today, as I had hoped, I might not have been able to be at the hospital, given our other sick child.) I know that God will cause everything to work in a timing that is glorifying to Him, and not simply convenient to me. But John and I can TASTE IT. We both have distinct visions of bringing our son home. We can see that light at the end of the tunnel, and it taunts us. Never before did we allow ourselves to daydream about the days we would live in our home as a family of four. Goodness, for a time we didn't know where our home might be at this point! But God has given us both a ridiculous confidence that Luke's issues are solvable, and now we want to see them solved! We still have many mountains to climb with this little boy, and we want him swaddled to our chest, not lying in a hospital crib.

Oh, we pray for patience. We praise God for the innumerable miracles He has accomplished in these few weeks. And we ask Him to continue to move quickly to bring our boy home.

In the meantime, my house will likely be spotless from all my nervous cleaning. :)