A miracle drug?

Samuel qualifies for Omegaven. Because he’ll be on TPN and lipids for so long, the traditional lipids tend to cause liver damage in teeny babies. This drug isn’t FDA approved, but all clinical trials so far show it to be a wonder drug. Our hospital is one of the few who has permission to dispense this drug. Samuel will be the 14th baby at our hospital to receive it as well. All babies here who’ve had it have been successful.

We’re excited to have him on this–starting Thursday. Per FDA guidelines for it, he can’t start it till day 21. Though it’s not approved and is still considered experimental, the FDA still imposes certain guidelines, including the 21 day waiting period. Everything that we’ve read on this shows how beneficial it is. Why won’t they use it on all babies, rather than the traditional soy-based lipids? Because it really only benefits about 3% of babies, those that are the very smallest, the micro-preemies. And well, money. The company that produces it isn’t going to make much profit creating something that so few babies will use. What we hear is that they’re focusing their efforts on creating another drug that ALL babies will benefit from. That’s fine and dandy and all, but for now, I’m just glad this drug does exist and that our hospital has permission to use it.

In other news….

Samuel’s PDA closed!!! Sebastien’s is still quite large. For Sebastien, the hole isn’t causing any issues so they’re still waiting to determine whether or not to do anything. Sebastien is also getting human milk fortified breast milk now. Yeah! More calories, more nutrition. Samuel will get it as well, when he’s large enough and getting enough feeds. They’re also going to start weaning Sebastien of his CPAP this week.

There’s chatter about switching Samuel to a more traditional ventilator, but I’m not sure when that switch will happen. I’m somewhat hopeful for it though, simply because it’ll make Samuel more mobile, which means they can put him on his belly. The nurses shifted him over the other night — we’ve NEVER seen him look so peaceful and calm. His brother does his best, hardest snoozing on his belly, so we knew Samuel would love being on his belly too, they just couldn’t move him much on the oscillator. His feeds have also increased slightly. Besides the two holes in his heart, he’s doing great!


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