Friday, May 3, 2013

Big mistake!

Reagan fell asleep on her own last night but then woke back up only 30min later. Clonidine helped her to fall back asleep and she slept til 4am. The night nurse picked her up and she slept off and on in her arms the rest of the morning. On a side note...we're losing our new night nurse (she's been working Mon/Thurs nights). She just found out she's pregnant and she needs to find something closer to home (she lives 45min away from here)! We're going to miss her! We're thinking we're just going to keep our Tues/Wed nurse (who has been with us over a year now) and leave those nights open. It's nice having someone here to help out (especially when Reagan is up or having a bad day)...but she's been sleeping better lately and I just don't think it's worth it to train someone new when we're probably going to be moving in the next couple months! How was that for a side note?!?! Reagan has been a super sweet, snuggly girl again today. She had PT this morning and her therapist was amazed at how calm and still she was!! Well, within an hour after therapy she was OUT and slept most of the day!!! She woke right around 4pm and stayed awake til 10pm. Her temperature regulation is a bit off (cold hands/feet and sweaty back)...but other than that, she's been perfect. Such a sweet girl!! Sure wish I could say the same for her brother!! (Awake again last night and already up once tonight! Ugh!) One more side note...today when I was giving Reagan her bath I noticed how skinny she was looking so I decided to weigh her! She's lost another 3lbs! She's gone from 45lbs to 39lbs in just a few months (since switching to the new formula)! So I went back and looked at the can of the Nutramigen PurAmino she's on. The way I've been making it (the way the can says and the doctor said to make it), it's 20kcal/oz. The Neocate Reagan was on before was at 30kcal/oz!!! That's a HUGE difference! Ugh. I can't believe her doctor's office didn't figure that out! At our last appt they saw she had gone from 45lbs to 42, but they weren't concerned about it! Too bad no one bothered to think "now why is she losing 3lbs??"...maybe someone would have caught this sooner?!?! So my concern...is the recent improvement we've seen in her due to the new formula or the fact that we've been unintentionally "resting" her tummy by giving her watered down formula??? I don't know. I'm going to slowly increase the ratio over the next week or so and get her where she's supposed to be, please keep it in your prayers that she handles it well and we continue to see our sweet happy girl!

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