I’m happy to have started a new day. It was the longest night last night. We showered and she had her bottle (the nurse came in and mixed her meds into the bottle while we were in the shower, b/c she’s a rockstar). Then a few hours later after shift change the next nurse came in and took the bottle out of the room and mixed the melatonin in it. She was really great too. She stayed in our room and visited us for a long time last night and told me about all the different mission trips she’s been on to different places, it was great. She even showed Posie some video of giraffes from a recent trip to Africa.

Posie slept good for a few solid hours then kept asking for a bottle. I’d ignore her some but by 4 AM she was up asking for her milk about every 5-10 minutes. I kept trying to pray and she got louder and louder, I just gave God what I could, and ended up white knuckled by morning. These are the glamorous days of motherhood. By morning she guzzled down her bottle when the nurse brought it. She had her morning weigh-in and headed to O.T.

The dr sat down and talked to me. She offered the possibility of the hospital getting me set up in the Ronald McDonald House to get me away from Posie so that I could get sleep during this but also entertaining the idea that it might help Posie if she knew that mom wasn’t here to ask for a bottle. I declined. They told me to keep it open as an option. The thing is . . . I’m already in a lupus flare and I think if I’m away from her I’m just going to stress & feel bad, which will make it worse. Besides that, I promised her I’d stay with her the whole time. I promised her that leading up to coming and right before we came, all the way up to admission. I wanted to reassure her I’d be here, it’s a scary thing. I don’t want to be a liar to her and go back on my word. But I’m praying tonight goes better. They will be doing melatonin again tonight and if it helps then they’ll set us up to continue it when she goes back home.

So she likes to put her little activities up on her daily chart (isn’t it cute where she wrote her name?) but it’s not quite big enough for all of her therapies and daily activities so we just do some on the side. She’s enjoying it and I think it helps her to feel like she has some control of her day when she knows when she’s going to which place next.

During Posie’s morning meal the hospital coordinator called to verify P’s pediatrician, they were calling to set up an appt for when we get out of the hospital. We also had our first “Huddle” today! One of the psychologists, the speech-language pathologist, occupational therapist, dietician, coordinator, and myself. We discussed her progress and her setbacks, goals for the next week and things we were going to tweak and had some q&a time with each other. They’re all very, very good and very thorough. These are some smart folks. No, I don’t want to go stay at the Ronald McDonald House without my child, and that was only offered as a suggestion or an option if it comes to it, and it’s not something I want to do but that set aside . . . there hasn’t been anything that has upset me, pushed Mama Bear out, made me question ethics or protocol, or just, in general, rubbed me the wrong way. Seriously, the people here are phenomenal. I did learn today in our Huddle that I am actually going to be going into the feedings early. So starting tomorrow I’ll go sit in with her during therapy. Her 9AM & 12PM feeds I will watch outside, but her 3PM & 6PM feeds I’ll sit inside and just watch them and I’ll praise her and play with her. Just to get her associating mom with that time and get me into that routine.

Her SLP and OT are both going to be working on making books with/for her, so I think that will be great. I’m going to order us a digital food scale to have for when we go home. I love the people here so much. She hugged someone new today, again. That was a surprise, it’s making the other girls jealous. I had a great talk with our very quiet housekeeper, Maria, who has been here for a very long time and I very much enjoyed it. And her boss, Sharla, who is the head of housekeeping is really fun and she’s been so great, too. Sweet Hannah, she’s a doll, and she is a twinkie to my friend Keli. The Child Life Specialist came in and talked to me for a while then attempted to get P’s attention but she turned around on the bed and faced the other direction. She’s still kind of skiddish and anytime someone knocks on the door to come in, P jumps out of the bed and runs to me. Posie is still playing with that Fisher Price Doll House they brought in here. I never knew she would love a dollhouse so much.

We went to do laundry earlier and as soon as we threw our clothes in the washer we headed outside to play some before OT . . . right as we stepped outside it started sprinkling and within minutes it was just raining and we had to come in. She tried to convince me we didn’t. She’s too funny. She was a really big help doing laundry again. I really hope she doesn’t grow out of that.

We’ve had meltdown after meltdown after meltdown today. At least one an hour would be fair to say and I really can’t deal with that. I was so happy this morning when she fell asleep in between therapies from 10:00-10:30, except I had to wake her up for her 10:30 and she cried how tired she was (I know she is, she had me up all night) and she was impossible. I had to hand her shoes to her and tell her I’d wait for her in the hall and actually just go out and chat with a nurse till she was ready b/c I couldn’t stand in the room and listen to it. Geeze, I hope she learns soon that she got that stubborness from her mama and I am going to win. Meanwhile, some of these mamas up here, I can’t even deal with them. Mercy. They are amazing. They’re up here with a kid inpatient (in the hospital) and another impatient (a toddler, usually) in tow, dealing with ugly tantrums and desperate pleas from multiple children . . . these mamas are the real MVPs and I hope they know it!

We’re off to check the mail, head to our last feeding therapy of the day, and then we’re coming back for a very welcomed shower and bottle. I did mention to the team during Huddle that maybe it could help if we could get her medication orders changed to get all her meds at once in the evening so the melatonin can be given in the first bottle. I don’t know if it’s going to happen tonight but we’ll see. That would be great, maybe she’ll go to sleep sooner. Please pray for Posie!