The Waiting Game

That is exactly what our life feels like... right now we are just waiting for Casey to show us all that she is ready to come home. She has continued to do well off of oxygen, so well in fact that this week they removed her pulse ox monitor because she wasn't having problems with desats (dropping her oxygen saturation level). Now her biggest hurdle for being released continues to be her bottle feedings. For several days after being removed from nasal cannula she had quite a decrease in the quantity she was finishing at her feeds. Most likely this is because her body was tired from working harder to breathe on her own. We have been encouraged over the last few days that the amount she has taken at her feedings has increased, and she is now attempting about 6 out of her 8 feeds by bottle. She is usually finishing anywhere between 1/3 to 3/4 of her full volume before getting too sleepy, but today she actually finished 2 full bottles for the first time in almost a week. Several times she has even been wide awake a few minutes before her scheduled feeding time, and she has not been afraid to let us know that she does not care what time the clock says, she is ready to eat now! When I spoke with her nurse yesterday about her progress, she said it is a great sign that she is attempting so many bottles, and now she just has to have the endurance to finish them. Even with all this eating, her weight gain has been a little slower this week, but as of tonight she now weighs 6lbs 0.14 oz (from past experience we know she tends to hover around the next pound for several days, but we finally made it over the 6 lb hump tonight)!

As for last week's other prayer requests, her diaper rash is almost completely healed! This week Casey also had her latest eye exam, and one eye does show progression of ROP. The doctor is attributing this to her higher saturation levels in the days before she came off of oxygen (which also happens to be when she was tested), and he still expects it to clear on it's own. She is scheduled for another eye test in two weeks, and prayers are requested that this one will show the improvement we have been hoping for. This week's other prayer needs continue to be for increased stamina with her bottle feedings, healing of her IVH (bleeding in the brain), and that she will maintain her heart rate and not have any bradys (heart rate drops). She has had a couple this week, and in addition to completing all of her bottles, she has to remain brady free for five days before being released.

For now we continue to wait for our girl to grow stronger and show us she is ready to join us at home. In many ways these last few weeks of waiting are the hardest because we are so strongly anticipating the day we get to have her with us all the time, and every set back feels like it adds a little more time. While we are eager for her hospital stay to come to an end, we of course know our end goal is to bring home a healthy girl, and we know that the day we will be able to start our next chapter as a family is coming soon.

Enjoy the latest pictures of Casey's first Halloween and other shots from the week:

Looking quite adorable in her Halloween onesie

Until she decided photo op time was over and she was ready to eat!

"Seriously, I want food!"
 

Not really sure what to think of her monkey costume!

Our little monkey!

One of our sweet nurses made her a new sign for her 1st Halloween

Fresh and clean after a bath



This eating and breathing thing is hard work!

Bottle time with Daddy!

So sleepy!

Nothing like a bottle to put her right to sleep!

Naked baby!

Good stuff!

This picture just cracked me up.  However the male pattern baldness my child has recently started sporting does not make me laugh.  Good thing Mommy just bought her LOTS of headbands and bows!

 Did I mention that she is not afraid to let us know when we are not fast enough with her bottle?



They might have lost, but Casey sure looked cute cheering on the Rangers!

This is what 85 days in the NICU will do to you.  On the plus side, I have now discovered I can sleep anytime, anywhere, and in any position!