March 13, 2013:

I've been told by multiple people that days in the NICU are up and down. The frustrating thing for me is that I have absolutly no control. I ultimatly feel like the NICU controls my baby and I'm having to constantly obey their rules. What I want for my baby isn't necessarily what they feel is in his best interest and that is starting to frustrate me even more. This morning I was rushing, as most mornings, to get there by 9am for his morning cares. I thrive on being able to DO for my baby in any way I can. Yesterday was rough in our NICU b/c there was a water leak in the ceiling and they had to move all the babies around. We lost our corner spot and are now smack dab in the middle. Two of the families we were getting comfortable seeing had to move out of our nursery 5. Kangaroo time was cut short yesterday during the morning and then last evening the nurse wouldn't let mom McLennan and I give RJ a bath and have kangaroo time. They were worried about him getting stressed and him having trouble keeping up his temperature. I wanted to have the kangaroo time first so he gets nice and warm, plus his sats always go up. Then do the bath afterwards so he's already extra warm. They didn't see it that way. Then I had a bad feeling about today since there were 2 empty beds in our nursery after the ceiling was fixed. My gut instinct was right, and the nursery was closed when we arrived. It turned out to be closed for 2.5 hrs!!!!!!!!!!!!!! I was so mad and frustrated and full of racing emotions. The tears kept welling up. Here they already have limited times for us to be in the NICU and then they couldn't get an admission all night long, but had to wait till 9am right when we arrived....... Robert was at his dentist appointment, so I mustered up the couarge to walk towards him as tears welled up in my eyes walking away from the NICU and our precious boy..... Shortly after Roberts appointment was completed and I had pumped, they allowed us back into the nursery. We did his cares and then I was thankfully able to hold him. Both Robert and I gave up our lunch time so that I could hold him, since our morning routine had been all messed up. RJ did exceptionally well during our kangaroo session and was able to be weaned down on his oxygen requriements. In rounds this morning they had weaned his rate to 15. He is still tolerating his feeds over 30 min. They maxed out his diuretics and it does seem to finally be helping with his secretions. His color looked good today and overall he was a really good boy. Tomorrow they plan on getting an x-ray, so we shall see how much the diuretics have helped. We asked the nurse practitioner from today to come talk with us. She mentioned there is talk about another course of steroids possibly in the future and maybe a longer course. Right now they are wanting to focus on weaning his ventilator settings and getting him to grow. He did gain an ounce last night, so he's up to 3 lb 9 oz!! Tomorrow I have my ACLS renewal class all day, so that's put some extra stress on me and the fact that I can't see him until sometime tomorrow evening. Plus I have to worry about pumping throughout the day and still keeping up with the class. Who knew my life would get so complicated...... I'm so lucky to have such a supportive husband who's right by my side through it all. We truly are blessed. Thanks again for all the prayers, love, and support.