June 10 PM

Well, let's just say life with Everett will always be interesting. At least for now. I hope once our feet hit the pavement out of this place we can start a new way of life, as I'm sure that poor little man hopes too!

He didn't eat much at all this morning. Ashley put his tube back in, in hopes he would put two and two together and start to eat on his own. She says sometimes that works. Nada. I had breast milk and formula I was offering him both, he started to arch again and show signs of aversion. He was gassy and seemed uncomfortable. Different than the last time he quit though. Last time it was clear he was not liking the drinking portion, (since he was aspirating) this time he was not even attempting, like he was full. I burped him, and Ashley tried a few things to get him to poop. Nothing.

When Melissa rounded this morning we were all so pleased with yesterday we decided to reschedule his GI study until Monday and G-tube for Tuesday. It was like deja vu, he stopped eating again, and so I panicked. Ashley came back and told me he couldn't get in for the G-tube until Wednesday which would probably put me home not next week, but the following. I bawled. I knew I shouldn't get my heart set on getting home this coming week but I can't take this life much longer, and I don't think my little big man will ever thrive in this hospital. (Side note: every time I say I can't take this life much longer, I know it could be worse. I have friends that have had it worse and I think of them when I type those words. They are stronger than me. And please don't get me wrong, I'm extremely thankful I have a baby who stands the chance at coming home and leading a healthy life, I'm just exhausted and anxious.) I need him out. I don't want to give him a G-tube unless he really needs it of course but if we keep on keeping on the way things are, it'll 'never' happen. The roller coaster is killing me. The moment things look up, for just a bit, it all comes crashing back down. I lost it again this morning, last night I got an hour and a half of sleep, so without sleep the water works come all too easy. I begged for the doctors to change it all back. I wanted the GI study today so that we could keep his scheduled appointment for Monday. I feel like we'll know over the weekend if he'll be able to do it on his own or not. If not, I can always cancel it.

Finally the doctors rounded and I begged. They were in agreement, thankfully. We finally all pieced together he must be constipated. He is wide awake when it's time to eat and not tired. He went from an all breast milk diet to formula which is hard on his gut. He also had barium, which is a substance used in his swallow study that allows them to see the liquid he is swallowing which would constipate him, no one told me that...also, he wasn't using the Dr. Brown bottles and with his reflux, he got too gassy. After Ashley put the tube back in she pulled a lot of air out from his belly. My poor baby. He can't win. He is trying so damn hard to do everything right and the cards are always stacked against him. It breaks my heart. I feel like if I could just get him out of there, we could get this on our own. I know it wouldn't be the safest option, but letting him be for a while, no more test, REAL sleep, eating when he wants, he'd figure it out, I just know it. :(((

Needless to say, my pathetic begging worked. He got scheduled for 2:30 today for the GI study and we got him back on at 8:30 Monday for the G-tube if this weekend doesn't go well. Ashley ordered me to go home, to try and sleep. I've been missing Clara horrible. I got to spend some time with her and nap for an hour and a half while she did. Kristin kept my phone and her monitor in case the hospital called. I can't shut my phone off to sleep since the hospital might call which usually prevents any napping during the day, if I get one call or text during a nap time, I'm up. I can only sleep for about an hour and a half at a time as it is, and I wake in a panic and can't get calm again so I just get up.

Ashley called right after I got up. They came to take an Xray to make sure they could do the study. He still had barium in his system from yesterday so they couldn't do the test today. They're going to do it tomorrow, apparently no one there knew they could do it on the weekend so they rushed it for today. So, he'll have more barium tomorrow which will constipate him more. I decided I wanted him on breast milk only and I wanted to give him a break from eating too. There is no point in trying to push him when he doesn't feel good, it's not fair. I don't want to eat when I'm constipated and bloated. I asked that they not give him anymore formula, why add fuel to the fire?! I'm hoping with eating/tubing breast milk again it can help clear his system and get him on track for after tomorrow's study. One of my primary nurses is on tonight so she will let me stay home and rest. I know I need to. Andre came home after work today and napped, he woke with another fever, 101. This is horrible timing for so many reasons. I finally went to the grocery store and got stocked up. With Kristin leaving and Andre sick, I know I won't have time for the store in the near future. I'm hoping I have two babies to take care of soon and I want everything here ready to go so we can be hermits in our home as a perfect little family for a week before we venture out into the world again. The thought of that elates me.

Kristin went in tonight to see if he wanted to eat orally at his 8pm feed. (PS every time I write "feed" I think of cattle/farm animals, it annoys me, but that's what they say in the hospital so I need to practice saying meal.) He drank 45 and they tubed the rest. Elisa will offer him the bottle at each MEAL tonight with instructions not to push him and tube it if he is too tired or uninterested. Hopefully this break and breast milk will help his digestion. We'll have to decide tomorrow after his next study with barium how to help him digest his food best.

Kristin just got home. She talked of their time together with a big smile. They sang songs with her iPad and had a blast! Life without her here is going to suck, for us all! Clearly we've hogged her, thank you for sharing her Bierman Family! Gramp too!

I'm supposed to get sleep now. But I miss him too much.