Progress Update: Thursday, September 6

Truman has had a couple of very good days. His fiestiness is back as strong as ever -- so much so that the nurses asked for orders for a higher dosage of Ativan, a drug which is designed to help calm him down. When I was changing his diaper at noon on Wednesday, he was so agitated about it that he pulled out his feeding tube and pulled the guaze off his stoma (the wound where his intestines come to the surface from surgery). I tried to pry his little fingers from the tube before he got it all the way out, but he's a strong little fellow. I couldn't get them loose.

We received results from the follow-up head ultrasound. There appears to be some improvement! The right ventricle has not increased in swelling, and the blood in the left ventricle appears to be resolving some. The biggest news is that because the bleed in the left is slowly resolving, they think it was not an infarction as they reported last week. An infarction is like a stroke. It means that blood was cut off to a portion of the body, causing the tissue to die. If he did have an infarction in his brain, that would mean that portion of brain tissue had died and was permanently damaged. Since they now believe it was only a hemorrhage rather than an infarction, his brain is still damaged, but he could recover from the damage or create new pathways around it as the blood re-absorbs.

He is down to a very low dosage of both the blood pressure medication and the pain drip from surgery. They plan to wean the pain medication entirely today and hope to do so with the blood pressure medication, but they are not too hopeful about getting off of the blood pressure medication just yet because his blood pressure keeps staying pretty low. They made give him a cortizone shot to speed the blood pressure improvement up.

He is doing really well with the new ventilator. They say he may attempt to come off of it completely and move to C-PAP (a machine that delivers pressure to the lungs rather than breathing for him) in two or three weeks. He will likely fail the first time off the ventilator and have to go back on, but the fact that they are thinking two to three weeks is a positive sign.

The ostomy bag was put on last night, mostly to keep his hands out of the stoma (the fiestiness again). He will likely start feeds in the next couple of days. He needs to be off the pain medication, and preferably the blood pressure medication, first.

The nurses said that kangaroo care could start any day now. That means we'll get to start holding our little guy soon. Other than me lifting him up on the bed linens to change the bottom linens and Ben lifting him up once to weigh him, we haven't held him yet. Kangaroo care means that we would sit in a comfy chair with our shirts off or open. Truman would be placed on our chests, skin to skin. By placing directly on our skin, our skin helps to maintain his body temperature without him using so many calories to do so. Because his ear will be placed against our chests, he will be able to use our heartbeats and respiration to help regulate his own. Of course, he will still be on the ventilator. Kangaroo care has also been shown to help babies grow faster. The benefits for us are pretty obvious. We are both really excited about it!

Nurse Callie talked to us last night more about his stay overall. She said that because his lungs have done so well and because his ventilator support has been low pretty much all along, he probably won't be in acute care section of NICU as long as other tiny babies. But, because his intestional issue means he only has 2/3 of his small intestine to absorb nutrients, he's probably going to have a longer stay in the "feeder grower" section of NICU than other babies. They are talking about trying some creative options to use a catheter to re-insert the contents of his ostomy bag into the other opening on his stoma so that he can try to continue absorbing the nutrients in the lower third of his small intestine and keep his large intestine running. If they can get that to work, he will able to grow better than if his bag were just emptied.

He's getting fatter everyday. He's up to 1 pound, 11 ounces.

As always, thanks for all of the support and prayers,
Kara