Jan 6. - 6 Weeks old

Lucas turned 6 weeks old this morning. He has had a better than expected run for being a tiny and sick little boy. He's grown over an inch and a half and almost gained a whole pound since his birth day. He is doing so well with his feedings, now at 5.5 ml over an hour, and giving the nurses, mommy and daddy some nice stinky surprises regularly. I think we have been lucky so far in what we've gone through during his stay in the NICU. I know he could have been sicker and had a worse outcome so far. He hasn't needed surgery yet as the PDA remains small to moderate and is not impacting his lung functioning as it was. However, since Lucas has been back on the ventilator, he has been experiencing more and more episodes where his heart rate & blood oxygen levels plummet suddenly- most likely due to his throat spasming around the vent tube. The nurses and doctors again explained that they don't fully know what causes this and that it doesn't happen with a lot of babies. Lucas is still being weened off the methadone for pain and as a result is more awake than ever. Perhaps this is why he is having problems.

The treatment for this is to give my sweet little boy steroids that are supposed to help the lungs develop better so he can be removed from the ventilator. I don't remember the name of the steroid being used, but the doctor explained to me this morning that the risks of the steroids are that they may impact both growth and brain development. Studies have shown that steroids like this can cause severe developmental delays later in life but the studies refer to infants receiving the drug very early on after birth and being given the drug over extended periods (like 4 weeks). Because of this, Lucas will receive the treatment for only 10 days and they held off until he was 6 weeks old. This is a benefit/risk situation. As he remains on the vent, keeps having episodes and needs to be "bagged" as explained in an earlier post, he is needing more ventilator support which may impact other areas such as damage to his lungs, eye development, etc. Lucas is already at risk of having a lower IQ and developmental delays because of being born so early, but the steroids add to this risk, though is not a certainty. Either way, the goal is for a healthy little boy and to do that, he needs to get off the ventilator. If he turns out to be a short little boy, well, at least I won't take all the blame :) (if you didn't get that, I'm 5 feet tall). My hope for him right now is that he can come off the ventilator soon, keep growing and stay infection free!