Milo's Tough Day

After a few good days, Madeline is still doing pretty well, but Milo has had some difficulty with his breathing, which has been scary.

Madeline came off her vent on Thursday and is just on CPAP like Milo. This is a little mask or pronged fitting they wear on their nose that delivers pressurized bursts of oxygen to assist them in breathing. It makes them do more work, but is gentler on their lungs than the ventilator. She is tolerating the change well. Her skin has also healed very well, though the infection is not quite over yet. Her last cardiogram showed that her PDA is now categorized as "tiny," down from "small." Because Madeline's lungs are in pretty good shape for her age, they are going to monitor the PDA and see if it closes on its own rather than do surgery at this point. It seems the infection was interfering with the PDA closing, as they suspected. That said, PDAs in children this young can open and close on their own at varying times, so it still needs monitoring. Madeline also has both her eyes open now, and occasionally peeks out to see what's happening when someone is handling her. It's absolutely amazing to see those little peepers. Madeline also had her first breast milk yesterday, fresh from Mama Cow. We hope it agrees with her.

Milo's lungs are unfortunately not as strong as Madeline's, and he has also had a lot of difficulty with the fit of his CPAP. The mask and prongs are simply too big for his little face, and he loses pressure easily and then goes into desaturation. This is very scary, as sometimes his heart rate drops with it, and he has to be stimulated to bring it back up. The doctors have a smaller device they can use, but the nurses need to be trained to use it first, so it will be about a week before he can have it. In the meantime, when he moves too much or touches his face, the mask can move or lose pressure. He had a terrible day of this yesterday (6/27), and it was really horrible to be in the room while he was desaturating and struggling. He looked absolutely exhausted. He did better overnight, perhaps because it was calmer in the NICU then, so we're hopeful he'll stabilize again and not have to work so hard. If he doesn't improve, he might need to go back on his vent, which we knew could happen, but we'll see how it goes. Milo is still tolerating breast milk well, and is up to 1cc every 6 hours, to be raised to 1 cc every 3 hours in a few days. If he tolerates that dose well for 5 days, he can start eating for real. He has been slowly gaining weight on his IV diet of dextrose and lipids, but obviously he will do much better on mama's milk.

Today is Rob's 34th birthday and our anniversary. We hope it will be a good day for the babies as well.

Some pictures from this week:


Welcome to mission control. This is Madeline's Isolette. The computer monitor directly above the Isolette basically gives us all the stats on the baby. Whenever the babies start to have troubles, alarms start sounding. The most common problem is their oxygen saturation -- the doctors like to see it between 83 and 93%.


Madeline resting with her CPAP mask on. You can still see that her left arm is bandaged due to the infection. It's looking much better and will hopefully be entirely gone in the next day or so.


Elaine using a containment hold on Milo to help calm and comfort him. We were unable to hold him yesterday (6/27) due to his de-sats. But things looked better overnight, and hopefully we can begin the kangaroo holding again today. With any luck, we'll be able to hold Madeline for the first time today.