Day 63- NO tube

What an amazing day!
Last night Chance and I put Rowan to bed. A few minutes later we hear her fussing, so Chance went into her room fix the situation, and TaDa! Rowan had pulled out her feeding tube. She had ripped the dressing off too! Ro has been so very good about not pulling on it this entire time. Last night I guess she was just ready for it to be gone.
When Chance called me to her room, Rowan was beaming. You could tell she was so proud of herself :D

I called the hospital and they would have preferred if Chance and I would have put the tube back in ourselves.... But I made another executive decision to leave it out and see how she would do.

Naturally, I knew she would be up all night hungry because that tube feeding has been on for weeks now all throughout the night- Wrong! She slept the entire night!

Then I knew that medications would be horrendous because before transplant (without a tube) I practically could have lost my religion trying to get her to take the medication. Wrong again!
She has been such a champ today and hasn't even cried, tried to hit the syringes out of my hands, spit them out, or thrown up!

And how nice is it not to drag that bag and tubing around?!
Amazing!

Buuuuuut.
The Houston team has a goal of about 850calories per day for her to eat. So far tonight we are up to 456. I know- drastically short.

The concentration of the tube feeding in her tube is 27kcal per ounce.
Regular breastmilk and formula is typically 20kcal per ounce.

Essentially, the more concentrated the formula, the less fluid ounces she would have to drink in order to get to her goal calories for the day. However, Rowan will only tolerate having the milk that she actually drinks concentrated to 24kcal per ounce without throwing up.

Regardless, if she could tolerate 27kcal/ ounce, she would still be short calories today.

I am going to call our Houston team tomorrow and discuss, but I already know what they are going to say....
Rowan will most likely need her tube replaced AGAIN tomorrow.

Poor girl. We tried so hard today.

On the positive side, what an amazing time we are going to have when she is able to meet her goal calories!





















Still very snotty. I am wondering: is this still Bronchiolitis or maybe allergies???