100 Days

Well the triple digits have new meaning when they mark the number of days you have spent in the hospital. Yesterday on Casey's hundredth day of life, her weight was 6 lbs 11.4 oz and she was 18 3/4 inches long. Apparently at the hospital, 100 days isn't the big deal it is in elementary school, and the nurses do not dress up with 100 buttons, safety pins, or other items attached to their clothing to celebrate! It was still a pretty busy day for our little one. She had her eye exam, and it is still showing stage 2 ROP in her left eye, and stage 1 in her right. Her retina development has moved to zone 3 in both eyes, which is a a positive sign. This means that the retinopathy disease has not improved (stages), but her retina development (zones) has shown some progress. For now, she will continue to have tests every three weeks, but unless there is a significant change, the doctor does not anticipate her needing corrective surgery. The doctor also ordered that "since she is a big girl now," they are going to try lowering the head of her bed once again and they are going to stop venting her feeding tube after feeds, so time will tell what this does for her reflux.

As for the eating, I wish I could say she has made some progress on that front, but we really are in about the same place as we were last week. She is back to attempting about 5-6 bottles per day, and she takes between 30 - 45 percent of her daily volume, with the remainder gavaged through her feeding tube. The positive news is that we have switched from slow flow nipples back to the Dr. Browns system, and she seems to be having less bradys and handling feeds much better. This weekend, the doctor told us that in most ways she acts and responds like a term baby, but as far as eating goes she is still at about 36 weeks (let me tell you how enthusiastic I am about 4 more weeks in the hospital!) For now, the doctor continues to feel like the best option is to continue to wait and see if her endurance picks up. Another possibility we are considering is to remove her feeding tube for a couple of feeds and see if her hunger urge takes over when she does not automatically get the remainder of what she doesn't finish through the tube. My main concern with this option is that if she continues to only take a small volume, she might end up waking up to eat every hour or so. When you already spend close to 30 minutes bottle feeding and then have to hold her upright for 30 minutes after a feed, we could end up doing nothing but feeding, or getting ready for the next feed. Our doctors have also discussed the possibility of sending her home on a feeding tube, but from what I understand, when you insert the tube it is kind of a big guess as to whether the tube actually hit the stomach or the lungs, so I am pretty hesitant about that route as well. So the waiting continues....

Our main prayer needs continue to be for progress with her feeds, brady free days, continued eye improvement, and of course that her IVH (bleeding in the brain) is healing on its own.

Here are this week's pics of our little chunky monkey:

 She looks like such a big girl in her little pants outfit

 The nurses all raved about how cute she looked in the outfit my team gave us.

 The little bear bottom is the cutest part!

 Getting her swaddle bath.  She looks angry, but she actually seemed to really liked it.

 "What are you guys doing to me now?"

 Not sure if this look was to say "Daddy, please help me?" or "Will you people ever stop taking pictures of me?"

Fresh and clean

 

Our little cupcake

She has been so alert lately

Check out those arm and leg rolls

My husband thought this was hilarious (and yes, I realize I can't do this once we are at home and she is not on a monitor).

For a kid that screams like this when she wants a bottle, you would think she actually finish it!

In other news, my faith that we will have a perfectly well behaved child is wavering a bit after walking into the living room to find this little scene:

 Sienna decided MY chair looked cozy (after almost 9 years she most certainly knows that she is not allowed on furniture)

 And then there was Porter, who decided Casey's bouncy seat was the perfect place for him to lounge (Mimi, I will be expecting a phone call about this one!)