Progress Report: Tuesday, August 15th
Here are a few pictures of Truman for all of you who have been asking.
Truman really likes to stick his arms and legs out all over the place. He doesn't seem to gravitate to a completely fetal positiion most of the time like you might expect him to. Much of the time when we are with him he is fairly active, moving about as best he can.
Here you can see me (Ben) changing Truman's diaper. Anything which stimulates him (including physical contact) is still supposed to be very minimal, but some things are necessary, and Kara and I like to be there to do what we can. As you can see from the size of my hands in comparison to him, he is still very tiny.
Most of the time Truman is laying down inside his warm incubator. We can reach him through covered openings in the side. The NICU nurses do their best to keep things cheerful, and you can see the name sign they made for Truman and taped onto his bed.
Truman continues to make good progress in the Baylor NICU. A day after his heart surgery, he is recovering well. His blood pressure has come up to a number which the doctors are more comfortable with, and his blood gasses have been very good for several days now. He has a scar under his left arm that runs from his chest around to his back, but it is healing well and should barely be noticeable by the time he is a toddler. His chest x-rays are improved and show less fluid in his developing lungs, and his blood should now be circulating down through his lungs and stomach (as well as several other organs, I'm sure) much more efficiently.
We are hoping that Truman will be able to start eating mother's milk in the next 5 to 7 days now that his bloodflow has been corrected. As it is now, Truman is being sustained through a nutrient drip line which supplies him amino acids and proteins, but by themselves those are not enough to really help him grow and get better. The day that he is able to start getting real food will be a big day for all of us.
The minimum-stimulation order is still in effect right now, which means that we have to limit how much we touch and talk to Truman. The reason for this is because his brain is still trying to learn how to govern his autonomic functions, such as how to regulate his blood pressure and blood gasses, and how to tell his kidneys what they need to be filtering and what he needs to be keeping. Anything which interferes with that development could be a hindrance, so in the interest of him making progress, we are lmiting ourselves to how much we interact with him. This order has been in effect since he was born, and is re-evaluated once every 96 hours (4 days). I suspect that Truman may continue under this order for another week or so.
Speaking of his kidneys, they appear to be functioning pretty well from my point of view. I have already had the pleasure of having my hands peed all over; the first of many such pleasures, I'm sure. Kara and I also watched him fight the hiccups for about 12 minutes this evening.
Truman is still on the high-speed oscillating ventilator, and his doctor would like to keep him on it as long as possible because it is the most gentle option available, and thus the least likely to damage his gradually maturing lung tissues. In all likelihood, he will continue to be on some form of ventilation for the next three months. This is going to be a long road.
Overall, Truman is continuing to surpass everyone's expectations, and we hope that he continues that trend until it is finally time to go home, which could be up to three weeks either side of December 5th.