Saturday, March 3, 2012

One week home and where is Ruby?

We've had a great first week home with Millie. She is so precious and seems to wake up a little more each day. She is not always making it 4 hours to eat anymore, but that's ok. Ruby is still on a 4 hour schedule in the NICU, so we'll have to work on getting them on the same schedule when Ruby gets home. Speaking of Ruby.......we thought we would get to bring her home yesterday, but she has continued to desat (drop her oxygen) off/on throughout the week when eating. It's not really when eating, but when we are burping her or after eating. She always brings herself back up without intervention, but we'd like her to not do that at all. It seems to be getting better. Two weeks ago she was dropping into the 40's and 50's, and this week she has just been dropping to the 70's and 80's. The MD said yesterday that we should be able to bring her home this coming week, and if they have to then they will send her home on a monitor. I can't wait to see the girls together. Millie was 6 lbs 4 oz at the pediatrician last Wednesday and Ruby was 6 lbs yesterday! I love seeing their fat cheeks.

Emmett is starting to figure out that "the baby" is staying. She is out of sight out of mind most of the time, exact when I'm feeding her or holding her and Emmett wants "UP!" He has also been taking her bottles and pacifiers and running away with them. Having two home is really going to rock his world.

Jake has been on the new seizure medicine two weeks now. He seems more irritable - not quite as bad as when he was on Vimpat, but he's on such a low dose that I worry about increasing. He has also had three weird events (maybe I already mentioned this) where he wants to fall asleep suddenly, and he gets very fussy. He can't keep his eyes open, and this has happened at random times in the middle of the day. Twice he went on to sleep for several hours, and then vomited later which makes me think it was some type of seizure. Very odd to me that in the three weeks that Jake was off medication he was happier and had no seizures. Now that he is back on medication he is having problems again. Seems like an easy answer - just take him off medication, but the neurologists are telling us that this will lead to worse and worse uncontrollable seizures. I think it may be worth the risk though, because it is heartbreaking when he is crying and crying and can't tell you what it is that is bothering him. Yesterday morning I was lying in bed with him at 5:45 am trying to buy us a few more minutes before actually getting up. He was so aggravated and kept reaching back to pinch me. I find myself getting angry because it hurts and when he screams it wakes up Emmett, but Jake has no other way to communicate what he is feeling at those times.

To leave you on a happy is Millie happy to be home.


  1. You are quite amazing!! Our thoughts & prayers are with you!!

  2. I was just thinking about the Doolittles this morning and hoping for a good report. You ARE amazing! I hope for you continued strength, patience, grace, and a nap every now and then.