Long Time

Sorry that I haven't posted in a few days. There hasn't been much to write about so I decided to take a break. So lets start with the stats, Penelope is now a whopping 7lbs 7oz, she gets 56Q3 of 27 calorie fortified milk, she gets 3 fortified, rice cereal thickened bottle attempts per day. She was moved back to Bay 4 last week at my request. Bay 4 and 5 are the same as far as progress, but 4 is nicer, and since I practically live here, I wanted the nice room. So we have had 6 rooms now, plus the 3 that I stayed in as an inpatient!

Bay 1, Bed 5, 42 days
Bay 2, Bed 24, 3 days
Bay 2, Bed 23,  50 days
Bay 4, Bed 52, 3 days
Bay 5, Bed 67, 7 days
Bay 4, Bed 55, 3 days and counting

Today was the big ROP exam. Last night was a long night, I slept, but I don't feel like I am rested. I woke up at 6 and was at the hospital by 6:30. I spent 30 minutes in the hospital meditation room gathering my strength. A good ROP outcome would mean going home soon, but also probably mean getting a feeding tube put in surgically since bottles are still not very good. A bad ROP exam would mean eye surgery this week (highly unlikely for us at this point, but at least it would a means to an end). A stable ROP would mean 2 MORE weeks of waiting on the eyes, but buy me time on bottles. None of the options were good. We are in the STABLE category. We have been stable for 7 weeks, the next exam is in 1-2 weeks, so I won't know until Wednesday if we are on next weeks list or not. This will mean HALF our stay has been waiting for her eyes. Ugh.

Bottles are still not going very well. She isn't in pain anymore when she takes a bottle, but it takes a lot of convincing to get her to even try. The high flow is causing her to swallow a lot of air, so she was started on Mylicon yesterday to see if we can relieve some of the gas pain. We were all banking on her eyes being a better today and being able to turn down the high flow. The nurse practitioner is consulting with Dr Klein to see if we can go down on the high flow and up on the oxygen level for the same effectiveness. It would at least help us get her a little more home ready, and maybe get bottles to work out more.

So, we sit and wait, and wait, and wait, and wait. Either way, it looks like I will now be spending the 4th of July in the hospital.

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UPDATE! So, Dr Widness says that her eyes are stable enough that we can go home like this and come back for weekly checks. So now we are going to start getting home ready! So they are going to start weaning her high flow to get her on home ready oxygen. We have to show over the next week that she is showing some improvement EVERYDAY on bottles and then I can be taught how to place an NG tube (meaning feeding tube through her nose instead of surgical). If she isn't showing signs of improvement then they will place a G tube during her hernia surgery! I don't have an estimated discharge date, but they no longer feel like we need stay for her eyes! HOORAY!!!!!!!!!!!!!!!!!!