Monday, November 3, 2014

Hoping

I almost don't want to share this for fear of jinxing everything, but since I arrived in St. Louis on Saturday, Little Dorrit has been doing really well! When we got to her room on Saturday, the nurse asked me if I wanted to hold her. I was really surprised because I didn't think I could hold her while she had a chest tube. The nurse said it was ok so I got to hold her again Saturday and have been able to hold her every day so far!
One of the best parts about holding her this time is that Little Dorrit is having more longer periods of being awake and alert so I actually felt like I was interacting with her as she just looked around all wide-eyed. 
There is some talk of possibly extubating her ventilator tomorrow and replacing it with nasal cannulas. This is very exciting as it just provides more steps to her breathing on her own! She is back up to full feeds on her special formula with minimal spitting up. And the best part is the pleural effusions have not reappeared...yet. The chyle fluid output in her chest tube is very minimal right now so much that as long as she continues on full feeds with no more pleural effusions, they might even take out her chest tube! See, I'm telling you all this and none of it may actually happen but it's given me more hope and helped my heart feel lighter. The team at Boston Children's is still going to review Little Dorrit's records to help make determinations about her lymphatic system but this will probably take several weeks for them to do. In the meantime, we continue to hope and pray for her body to heal.

"Hope has the power to fill our lives with happiness. Its absence—when this desire of our heart is delayed—can make 'the heart sick.' Hope...is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear." Elder Dieter F. Uchtdorf, The Infinite Power of Hope

10 comments:

Amber T said...

Such wonderful news! She looks so alert and just beautiful! I love love love the photo with the two of you just looking at each other!!!

Jani said...

Hoping hoping hoping with you! What a beautiful girl she is!!! I think she looks so much like her big brother.

Kristie H. said...

She is so beautiful! Nothing like mommy's arms to provide comfort and help her know she is safe. Praying for you all and I am so glad she is making such great progress!

Christina K said...

Tears of joy

Nonnie Light said...

So beautiful. I love the photos especially the two of you looking at each other. And such good news. Keep on fighting, baby girl!

Joeby said...

So wonderful! She is a beauty - just like her mommy. Praying and sending happy, happy thoughts and lots of love - Meme and Grandpa :)

Natalie R. said...

I love the picture of you holding her!!! We're praying for your family and especially Little Dorritt every day. I'm glad to see some really good news! :0) She is a beautiful baby.

Jenny said...

So wonderful to see the photos and hear the news. She is adorable and looks so interested in what's going on around her. Here's hoping for more and more good times.

Julie said...

She knows her Momma! What a precious little girl. You continue to remain in our thoughts and prayers. We added your names to the temple role last night. Glad to hear she's making such great progress :)

Jordan said...

So great to see you holding her and hear some optimistic outlooks on your sweet baby girl. Keep your chin up - so many people are thinking of you and praying for your family.