I have not been sleeping well. Last week I went for days where I just tossed and turned. I even went home one night to see if that would help, and nope. Still just dozed off and on.

I slept a little better over the weekend, but Annabelle was then horribly fussy. Night before last she woke up at 1 a.m. and I had to spend the rest of the night reinserting the coveted binky into the princess’s mouth. She’d sleep for ten minutes, lose it, then squawk. Repeat process 100 times between 1 a.m. and 8 a.m.

She’s also been pretty fussy the last two days. I keep trying to tell them I think her formula is hurting her belly. So yesterday, finally, they agreed to do half of the swanky (i.e. expensive) formula and half of my breast milk. The also started her on Miralax to help her poop.

Oh, yes, this is the other thing. For weeks now, she hasn’t pooped on her own. She will go two or three days without going, then we give her a suppository, and hello dirty diaper! But I think part of the reason she’s hurting so much is because of this.

So this morning, she had a HUGE blowout diaper… and I think she feels better! And… last night… she didn’t wake up until 5 a.m.! Imagine that… Momma’s milk DOES make it better:-)

I love sleep… I really do. Granted, I woke up when the nurses came to check on her… and when they came to draw blood at midnight… but I went right back to sleep, and that’s what counts!

But more than I love sleep… I love that my BABY got good sleep and is feeling better!!!

This week is going to be C.R.A.Z.Y. I’m just bracing for it.

My work is off the charts busy.

We are doing all the final work up for the transplant evaluation. I think *most* of it is already done though, and so far, no red flags.

They did however find that Annabelle has a small blood clot in her stomach area, so we have started back on Lovanox. Yuck! (this is her blood thinner shot…)

We have back 2 of the 2nd opinions we asked for. They called back same day they got it and said, “Transplant.” I think this solidifies our answer, but we hope to get the last one back today or tomorrow. Unless they are adamant against transplant and have a really good reason for it, I think our decision is made.

By Wednesday, we will send off paperwork to insurance for pre-approval for transplant. Finances are a whoooollleeee other discussion someday:-)

Usually that takes 24 to 48 hours to get an answer. I’m not anticipating it being of the negative.

Then… we go on the transplant list.

Then… we wait.

Also, we will be going on Tuesday for a PICC. We pulled it over the holidays, thinking maybe it was the reason for her fevers, but it didn’t phase them. Now, We have to have IV’s and prick her all the time, so a PICC line will make blood draws and labs SO SO SO much easier. It does, however, take a trip down stairs, cardiac anesthesia, and a mini-breathing tube. Please pray it goes seamless!

I think this is it for now. OH! WE HAVE SNOW! My hubby and kids are having fun at home playing in it… I’m having fun looking at it outside my window from the warm hospital room. (What fun I am!)

THANK YOU everyone for your prayers!

Here is a picture of Annabelle… enjoying her new bumbo seat! She is a wee bit wobbly… I call her my bobble head! She liked it for about five minutes, then got super tired. So we’ll be easing into it. However, I think it is really good for her!!! We also brought her BIG swing to the hospital… we’d left it at home, thinking this would be a fun new “home” thing,  but now that we might be here for a while.. we decided to go ahead and bring it here for her. She wasn’t crazy about it yesterday… although she was also full of poop and cranky yesterday, so we’ll try again today!



  1. What a sweetheart!! She looks adorable in that Bumbo!!

  2. I'm so glad you got some sleep. Things are always easier to cope with when you get a little rest.

    Praying for you and your family.

  3. She's so sweet! And yay for sleep–that always helps.

  4. Sweet, sweet picture! Rest is always good, glad you were able to get some:) Keeping you both in my prayers for the upcoming week.

  5. I'm so glad to hear you got to enjoy one of God's most precious gifts in life, (in addition to our children) sleeeeep! After four kids I know what's it's like not to have it, and now my husband snores to keep me up at night. 😉 Enjoy good, strong rest my friend, you deserve it!

  6. I'm glad you enjoyed a good night's sleep. I hope there are more to come.

  7. I saw someplace that she was going to have a transplant and wanted to come over and catch up. You are amazing in your strength and perseverence for you child and family. Praying for you!

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