Thursday, October 9, 2014

Good news!

This morning we received good news from the NICU and one of the nurses texted me this photo of Little Dorrit with her eyes open. I just love that her eyes are open and she is all swaddled up! We've mostly seen her with her eyes closed and just sprawled out in froggy style on her NICU bed with a tons of tubes attached to her. Also, her head still looks swollen but it is a vast improvement from where we left her on Sunday. Her face used to be so swollen, she could barely peek out of her eyes - this is the widest I've seen her eyes open so far. So, more good news is that Little Dorrit continues to do well on her conventional ventilator and she has been weaned down to 5 from 20 on her nitric oxide. Over the next few days, they will slowly try to wean her off of the nitric oxide completely and I know our doctors are working on trying to figure out what her long term care will need to be to deal with her protein C deficiency after she leaves the hospital. I still feel like, even after she is off the ventilator, she will still need to be in the hospital for some time until her toes are as healed as they are going to be and we have a long term care plan for her. But, we are making progress and that is encouraging!!
Mr. Rochester and I are planning on heading back to St. Louis in the morning. I'm really excited because I'm pretty sure we will get to hold our baby girl this weekend, as long as she continues to do well on her conventional ventilator. My sweet co-workers at work put together this huge basket of goodies for us to take with us on our trips back and forth to the hospital. We were so touched by the thoughtful gift and plan on putting it to good use this weekend.
We are still trying to count the tiny victories and keep hoping for larger ones (I'm trying not think negatively about impending MRIs and what that may reveal to us). Trotwood will be staying with some friends from church this weekend and although I feel sad leaving him again, I know we need to spend time with Little Dorrit this weekend and Trotwood would not be content at the hospital at all. All this back and forth is exhausting and I am so grateful for the love and support we have been feeling from friends and family. Thank you for all your thoughtful actions and continued prayers for our family. 

11 comments:

Jenny said...

SO happy to hear some good news.Love seeing her with her eyes open and looking around. I hope this will be a wonderful weekend for your family!

Jani said...

She is a TOTAL CUTIE. Oh I love her cute little face, so wonderful to see her with her eyes open and hear that she is doing so well being weaned off her nitric oxide. Fingers crossed that you will get to cuddle her as much as you want this weekend.

Diane said...

We are so happy for some good news! She is beautiful and we pray for you all everyday.

Kelly said...

Oh my goodness she is soo cute! I love seeing her bright eyes! What a great update. So happy she is handli all the weening and such. Have a great weekend!!

Mary said...

She is so Beautiful!!! So happy you have such good news!! Hope you get to hug and kiss and cuddle that sweet baby girl this weekend!!! Love you!!

Liz Jutila said...

Aria, praying for you and your family. Keeping you and that beautiful baby in my thoughts!

Blake and Holly said...

So glad to heAr some good news!! I she is SO cute!!!! Look at all that dark hair! She's a beauty!!!

Kel said...

ALL wonderful news. I can't wait to see a photo of you holding her, whether on this trip or in the future. I love you. We'll keep the four of you (Trotwood included) in our prayers.

JanFRN said...

I've spent the last 17 years of my life providing care to babies like Little Dorrit and to their families. One thing I've learned along the way is that little bitty forward baby steps, although insanely frustrating, are the best of the best. If we push these little people too hard they push back, and the ground we might have gained by pushing is quickly lost, and then some. As I read through your posts since she was born, I could almost predict what I'd read in the subsequent posts. It seems though that Little Dorrit is educating her care team in what works best for her; she's telling them what she needs and they're giving it to her. She has a lot of very good things on her side and going forward, I expect her to slowly but steadily get better. I'll add my prayers to the list. Stay strong for her and for each other.

Cormorant said...

How wonderful and exciting to make such positive steps! She is beautiful and I'm so hopeful and excited for what her future holds. Keep going and keep staying positive. Love and prayers for you all! Xoxo

Joeby said...

This is a fabulous post! The baby looks so precious in her picture and so thoughtful of the nurse who sent it to you! We love you all very much and are sending love and prayers to you.