Weekend Update: Sunday, August 20th

We just got back from the hospital and we're bringing Truman's second weekend to a conclusion. While the weekend wan't one of great progress, neither was it marked by any serious regression.

Truman now weighs only 1 lb, 3.5 oz, which is just under his birth weight of 1 lb, 4 oz. We've been told by both the doctors and nurses that Truman's weight will continue to fluctuate slightly around his original birth weight until he is able to start eating breast milk regularly. As you may know, Truman had his first feedings of breast milk last week, but those had to be discontinued Friday morning because his system wasn't quite ready to start processing that kind of food constantly. After all, our stomachs aren't really supposed to be used until we're born at 9 months, so because he came early we're having to train his tummy to accept and process food. They call this "Priming the gut." We've been told to expect numerous starts and stops of the feedings before he is able to eat all the time. In the meantime, Truman is still being sustained through the nutrient drip line running into his belly button.

Speaking of his belly button, the arterial line which monitors blood pressure and and the other line which is used to introduce fluids and nutrients have both started to have some problems. Because of this, it has been difficult to get accurate blood pressure readings for the last two days. They have little, tiny blood pressure cuffs which can be used, but from what we saw, they were extremely inaccurate on a child of Truman's size. To correct this issue, the nurse practitioner put a new arterial line into his left arm this evening. They gave him a little sedation and morphine for the pain, but when they stuck his arm, he turned purple and rigid, and his mouth froze in a grimace of pain. If his vocal cords had not been immobilized from the breathing and feeding tubes running down his throat, he'd definitely have been letting the entire floor know how he felt about the procedure. After they got the new line in place, a small splint was built over his left arm from the elbow to the first knuckle of his fingers to make sure that he could not interfere with its proper operation. Finally, once the splint was in place, the nurse slowly removed the old, malfunctioning arterial line from his belly button. The fluids/nutrients line to his belly button is still working for now, but it will probably have to be removed in the next couple of days because his belly button stump is going to come out soon, and they will probably move the line to one of his legs at that time.

The entire process of removing and replacing his arterial line probably took about 12 to 15 minutes, but Truman was only upset with about the first 7 or 8 minutes of that. After the process was complete we were able to talk to him softly and place our hands on him to calm him down, and he fell asleep for a little while shortly thereafter.

Each of the last two nights have been marked by us being able to visit Truman without the lid on his isolette for an extended period of time. This really allows us to feel more connected to him as we are not separated by plexiglass and allows him to hear our voices more easily. The reason that it's possible for us to do this now is because he is regulating his temperature so well that he doesn't need as much assistance from the heater in the isolette. We've also been invited to do a little more in his day-to-day routine, such as helping to change his bed linens. Tonight Kara got her first chance to pick Truman up while the nurse and I changed out the linens in his isolette. She did this by sliding her hands beneath his little bed and lifting the entire thing, so it's not the same kind of holding that you normally think of a mother doing with her child. However, it was still nice for her to get an idea of how much he weighs. We placed Truman's name-embroidered blue baby blanket from his Aunt Amy among his linens tonight, now that we can start bringing a few of the receiving blankets that we have for him to the NICU. It's really quite cute.

Something else we've enjoyed over the last two nights is not having to hunch over to speak through the arm holes in the isolette in order to let Truman hear our voices. Since speaking to him is a lot less work now, we've been reading to him for more than an hour each night. Last night it was Dr. Suess readers, fairy tales and some sung mother goose rhymes, and tonight it was a few chapters from The Lion, the Witch, and the Wardrobe. Truman seems to respond well to our voices, either by becoming active and interested, or by calming down to the point of falling asleep. The sung nursery rhymes really seem to put him to sleep well at this point.

Truman remains on the high-speed oscillating ventilator at this point, but the nurses have been gradually turning down the pressure that the machine uses to push in the air. This is a good thing because the lower the pressure, the more gentle the machine is and the less risk of damage to his lung tissue (some of which will probably happen regardless). Despite the fact that his blood pressure readings and blood oxygenation monitor have been bouncing around erratically for half the weekend, Truman's blood gases continue to look good. We expect that some of the erratic behavior of his blood pressure will now be corrected with the replacement of his arterial line. Truman also remains under the bili light treatment. He doesn't like the constant spotlight, but it is still needed to help him break down a compound resulting from his jaundice because his liver can't yet do the job by itself. However, his skin is showing good progress and is beginning to look a lot better. The Aquaphor ointment treatment that he has been receiving over most of the last couple of weeks has been discontinued, and they'll be moving to a simple vitamin-E cream before long. He's not eating breast milk at the moment, but we hope to see him give it another try in the next couple of days.

Overall, Truman is remaining fairly steady right now. There's still a long way to go, but given enough time I'm confident he'll make good progress. For now, we're playing a waiting game until he is ready to start working on the next big hurdles is his future: eating and processing food regularly and lung development.

As always, thank you everyone for your encouragement, prayers, and support. We'll keep you all posted.

--Ben