June 14/15

I came in for rounds yesterday at 8 and did hands on with Ashley. You can tell some nurses likes to do things their way. I let her know Stephanie allowed me to do most everything and I was comfortable taking over, so I did.

It took until 1 for them to round. They're usually good about coming to parents first when they're here. I think I saw two other parents out of all the kids they see. Anyway, it didn't matter, I held the little man and was just anxious since Ashley informed me they wanted to extubate him, or take his breathing tube out. Dr. Brooks wanted to give it the weekend. When I asked the doctor on about it, he said today.  Tomorrow, his probability of success wouldn't be different. So I agreed to go for it. I went home just in time to miss Clara's nap, aka my chance for rest, but at least I was able to play with her for a few hours. Kate and Kingston were so sweet and came over to play so both dada and I could be here with Everett for his tube removal. I was SO nervous, excited, petrified. Andre was telling me all sorts of things I had no interest in, trying to take my attention away from the situation, thanks love...sorry I "couldn't" hear you. Everett did great, of course. He handles everything thrown at him so well, and tries so darn hard. I don't know why Andre and I didn't drive separate, I knew I wouldn't be able to leave him as long as my lids would stay open.

We drove home, we got Clara to bed and I came back. I held him, skin to skin, finally. It's such a better connection. One we've been lacking. We lasted about 2 hours but his cords and CPAP (new nose breathing machine) don't allow us to move at all, I can't really rock him or soothe him the way I normally would. So after two hours we put him back. I hung around until 12:30 or so and then went home, even though every bone in my being wanted to be by his side. I knew I wouldn't sleep well anyway. It's amazing how all of his machines can be dinging and no one comes. How is a mama supposed to go sleep when I know he's not being attended to, especially in such a critical time. When I came in after going home to put Clara to bed, he was bawling, his machine was going off, he needed more oxygen and no one came. I was in there soothing him for five minutes before a nurse happened to walk by. I would imagine him staying calm would be necessary for him to stay off the old vent machine successfully. Needless to say, you can see why a terrified mommy couldn't leave. I asked his nurse to sit in his room, I set my alarm on my phone for every hour and called. I was so tired I was able to get some restless sleep. When I called she said he was doing well, he gets flustered when mucus comes into his mouth and he doesn't know what to do with it. I'm not sure I would if I were him either. I'm pretty sure his throat kills from having a tube down it for weeks, he is having oxygen blasted up his nose every few seconds whether he's ready to breathe or not, but sure kid, figure out how to swallow piles of mucus on top of everything else we're asking you to do when you're still quite sick. I asked the nurse to suction him and she said he's going to have to figure it out. I said, maybe tomorrow, he's figured out how to do enough today. I'm all for pushing Everett, I know that's what's going to get us both home and happy, but I think he had enough on his plate yesterday...we'll take care of the mucus buddy. When I came in and he was upset, he took his pacifier! This REALLY excited me. #1 since I was able to soothe him. #2 because he was sucking on it hard which shows he may be more capable than they told me he would be with eating, maybe, we'll see, but it's a good sign I think! I can tell he is hungry, they've been trying to give him my breast milk on and off and he's not digesting it. I can tell he is so hungry. He lost four ounces. :(((((( I'm going to talk to the doctors today about what we can do if he won't keep it down to help keep him full, the fluids and lipids aren't cutting it for my porker.

He has been off morphone completely since yesterday, he is so alert now it's wonderful. He is on a new antibiotic, Kristen and I kept saying we thought they should try a new one. So glad they finally did! He has albuterol to help open his lungs. Other than that he is just getting his "food". They started him on breastmilk again today, only 5 mL at a time. He has digested it well so far. I am hoping they will increase it tomorrow, I can tell he's hungry! Breaks my heart!

This morning I came in and held him for three hours. It took him the first 45 minutes to become trusting and calm. And he was out cold, and has been since then. Even putting him back in his bed he didn't stir. He is breathing a lot more calm, less tachypnic. His numbers have been great all day, I think they will adjust the machine and start letting him do more and more on his own starting tomorrow. It is the first time in a long time I feel at ease, kind of. He just looks and acts like he is feeling much better! Makes my heart so happy! 

I went home and played with Clara for a few hours. Play-doh, coloring, reading, puzzles… she had a very fun day with Doe and Michael today! Kate in Kingston came back to play with Clara so I could meet Andre at the hospital. That entire family is way too good to us! Daddy finally had his baby boy! So exciting!

Andre kindly went home to take care of Clara and get her in bed so I can stay and hold little man. I don't know how long I will stay tonight, we will see how things go. It's been a great day! I hope it continues to go uphill from here! Way to go Tiger!