Tyler's new clothes.

Tyler got to wear a his first onesie today. He has lost enough lines and hoses to make it feasible to put clothes on him. He is still in his temperature regulated isolet so he doesn't need clothing, but it's really nice to see it on him. Gives us a sense of having a normal baby for a few minutes. His growth is on track and he is getting close to being able to regulate his body temperature. Babies need to be about 1800 grams (4 lbs) to have enough mass to regulate their own body temperature. He is a few ounces from that today at 3 lbs and 7 oz. Tyler may be able to control his temperature already, but with everything else going on and wanting him to use the calories to grow we will help him out with keeping warm.

As long as his head-size stays stable (accounting for normal growth) and he doesn't start with the monster apnea again we can stay out of the OR. The ultrasound on Friday could also get us back on the surgery path, but we'll cross that bridge when we get there.

It's really interesting (and often maddening) to see how different doctors have a different take on the same situation. Tyler's Neonatal team leans towards installing a drain/shunt. That is not to say they are pushing or driving that way, but when we ask for their opinion that's what we get. On the other side of the coin the Neurosurgeon is of the opinion that as long as his ventricles are at least not growing after the tap she did on Thursday and he is not showing symptoms we can wait until we have confirmed swelling or symptoms.

The consensus is that as long as the swelling is not causing symptoms it is not producing long-term damage (not a fact, but no one has been able to prove otherwise.). We decided to go with the wait and see. The longer we wait the stronger and more resilient Tyler would be for surgery. It is also possible though not likely that we can skip surgery if we buy enough time for the clots to dissolve. More probable is we are giving Tyler's head enough time to clear enough clot out so a permanent shunt can be put in. That way hopefully he only needs one surgery.



Tyler seems to be feeling much better than last week. He is more active and his strength is back. He spends a few collective hours awake and able to open his eyes easily again. He has quite an appetite and is letting us know when he is hungry. Sharron has been able to let him explore nursing a couple of times now. He already knows what to do but doesn't quite have the energy to fill his tummy. After a few minutes when he is tired he gets mad. He wants his tummy full, that is when we feed him from his nasal gastric tube. We are also amazed that he can pick up his head off the bed now. Today a nurse placed his head in one direction and when she came back it was facing the other way. We believe he moved it all by himself. Despite his A's and B's still, to us he looks neurologically very good.

We are going to try to spend part of this week at home with Rachel. She has been doing phenomenally well with her grandparents in Hollis. Some day we'll come up with a suitable way to thank them for everything they have done through all this. Tim sent a video to me yesterday of Rachel picking up a phone on his desk and talking to her mom and dad. When she starts to want to talk to us we know it's time to go home and spend some time with her.