NICU Day 61 Update (11/10/09)

Yesterday was a better day. Maya's breathing wasnt as labored, as the steroids started kicking in. Instead of a 3 dose protocol (where you get a maximum dose, then 2/3 dose, then 1/3 dose), which is what they did for the second extubation, she is having a 9 dose protocol (3 max, 3 at 2/3, 3 at 1/3), which will run through Friday. Since they have kicked in, Maya has been breathing much easier and has been satting at 98-100 on room air, with her CPAP starting at 10 and moving down to 7 over yesterday. Today, the plan is to wean her off the CPAP and put her back on the cannula. She hates the CPAP. She just cries and cries when she is awake. It doesnt help that she was so hungry yesterday. All we could do was hold the pacifier to her mouth (since she couldnt hold it there for more than a few seconds before she got upset and it fell out). I ended up nursing Bobby and using my feet to pull my chair next to her isolette, lower it to the lowest setting, and, while holding him with one arm, holding her pacifier with the other and just stroking her cheek with the free fingers I had. She eventually fell asleep but it was so heartbreaking. I talked to her nurse this morning and she said that Maya had a decent night but it is obvious she wants the CPAP off. The nurse removed it while weighing her and cleaning her isolette, and she said Maya did great. I am hoping that means the cannula will come on this morning instead of tonight. It's the doctor's decision of course, and they are gun shy of changing her quickly since they all presumed she'd be fine last week and that didnt happen.

It is heartbreaking to hear her crying and know that there is so little we can do. We just sit or stand by her bedside, holding her as best as we can through the little portholes, telling her how much we love her. I feel like we've been transported back 2 months. I just dont understand how this could have happened. Everyone told us how simple the procedure was, how Maya would be back to normal in 2 days... And now this. Over a week. And the only reason she is remotely comfortable is the medication.

They did a repeat x-ray yesterday. The patch of fluid/mucus build up that was in the upper part of her right lung is gone, thank God. They saw a smaller patch lower, but felt that it would resolve itself now that her breathing is almost normal. We are so grateful for that news.

Maya is a fighter and she shows that to us every hour. She tries to pull her mask off, she cries her little lungs out, and she fights against the nurses as they try to do even the smallest task. While it is hard to watch because she isnt helping herself by fighting, it is a relief because it is a glimpse of the Maya behind the mask. And when we are rewarded by those beautiful eyes, it is worth every thing. Every little thing.

The weekend will be the big tell. The steroids stop on Friday and by Sunday, we should know if her trachea is open enough for her to breathe easily. Hopefully the longer steroid protocol will result in more healing for her little throat. Your prayers are appreciated and we ask that you continue. We know that she will come out of this. We have hope that it will be soon.

Bobby is becoming quite the eater. He ate every single feed from 9am until his 6am feed was hung this morning (probably because he was tired from his 3am feed where he ate 80cc's!!!). I wish they wouldnt feed him so much because this happens, but at the same time, I dont want him to be hungry. But he strikes me as the type that, if the food is offered, he will eat it. If you stop him at 60, he stops at 60. If you give him 80, he'll suck until you take the bottle away.

Part of me thinks, too, that they hang the 6am feed because of shift change. I dont know that, of course, but that is usually the feed that is hung. So, he either isnt hungry or it's shift change. Just my opinion.

The nurses tell us that they anticipate wanting his car seat this week. We are excited, of course, but it is also really sad for us. We know that Maya wont be with him if he comes home now. We dont want either of them there longer than they need to be there, but we also know how they react to not being with each other, as well as the pain it will be for us to go home with one of our babies while the other remains in the NICU. Right now, it is only Bobby's eating that is drawing his stay out... Is he doing it on purpose? It wouldnt surprise us... :) He doesnt want to leave Maya behind either.

Fingers crossed, prayers said, our little monkey will come off her steroids well and eat 100% right away so she can show that she's ready to come home too. We are hopeful... So very hopeful...