Day 30 Update

Good Morning. Yesterday I went to visit Golda solo again. I was able to park in the parking garage and walk to the NICU. I went slowly and was physically tired and in a bit of pain by the time I got home, but I was able to do it which is quite an improvement! (Oh and Harry and I stopped at the drug store to pick up some stuff - including newborn size diapers for Micah!)

I saw the social worker, the attending physician and the surgeon while there. Through all of that I was able to piece together the tentative plan for the next few months for Golda. She remains on the CPAP, mostly on room air, although while I was there they had to increase the oxygen a couple of times to help her recover from apneas. The attending feels these episodes are most likely due to a build up of secretions (sticky saliva) at the back of her throat, near the entrance to the trachea. There are receptors there that sense fluid and cause you to stop breathing - so you don't breathe in the fluid to your lungs (aspirate). In preemies, this reflex is stronger and lasts longer than in full-term babies, kids and adults. This, not her premature status per se or infection, is what he feels is causing her episodes. He has instituted a strict regimen of suction every three hours and suction at any episode. The surgeon also requested her tube be changed back to the Repogle and not the Anderson tube since the Repogle was actually designed for her condition. I told him why it had been switched and he said that if it does become clogged it should be changed (which wasn't being done before).

The attending feels that in perhaps 3-5 weeks Golda will be medically ready to transition out of the NICU. The problem is that he thinks she will still need more attention than we can give her at home. He is anticipating that she will transition to Blythedale Children's Hospital in Valhalla, NY for a short time (1-2 months) during which she will grow and stabilize and we will be fully trained in her care. I listened to everything they told me about the hospital and we watched the video they gave us. It sounds like a perfect place for her - except for it's location. It is, without traffic, 50 minutes away. I cannot imagine where we will find the time to visit her as often as we would like to, but somehow we are going to have to since it really does sound ideal for her needs. They have put us on the waiting list so she can have a bed when she is ready and they are trying to set up a site visit for us so we can become more comfortable with it, however, they will re-evaluate the situation as the date comes closer.

As of now, Golda is still on her CPAP and hasn't had any episodes this morning. She is up to 23 ml of fortified breast milk. They have stopped her antibiotics because, thankfully, all of the cultures have come back negative. She gained some weight too, measuring 1406 g (3 lbs. 1.59 oz.).

Leah and Micah are doing okay. They seem to be less interested in their 2 and 5 am feeds so we are playing around with the schedule to see if we can accommodate everyone's needs a little better. We have shifted the feeds an hour later during the day - 9, 12, 3, 6, 9 - then we will try to give a larger feed at 1 am and see how long they can go on that. Of course, if they protest then it will be every three hours, but it really seems like we are force feeding them at night when they are less interested and they are remaining somewhat hungry during the day when they are a little more awake. Please keep your fingers crossed that this works! It would be heavenly to have more than three hours at a time to sleep!

Harry has been feeling a bit neglected these last few days. It's been difficult to balance everyone's schedules and he, unfortunately, has taken most of the hits. I have been trying to step up more though (since Jon has been able to give him more time recently and he is really feeling the lack of my attention) and gave him his bath last night, did his homework with him for the last couple of days, read to him before bed, and tried to spend mommy and Harry time with him. He is enjoying it, but it is of course not enough. If this new feeding schedule works out, we should have more time to spend with him again. Through it all though he hasn't been too bad. His big acting out was shaking the bassinet to wake the babies (which failed) and having a couple of breakdowns when he didn't get his way. Pretty minor considering the huge upheaval his life has taken.

Okay, that's it for now! More tomorrow!