Friday, September 26, 2014

A NICU Distraction

After our rough morning on Wednesday and before we found out our protein C test results, we took a break from the NICU and did something that helped me feel somewhat normal again. Laundry. Who knew that doing laundry would actually help me feel relaxed?! Usually, laundry adds to the stress factor in my life. This time, I just think doing laundry gave me something else to think about other than what was happening in the NICU. While our laundry was going, we played two games: Bananagrams and Boss Monster.  Both games were fun to play and that, of course, didn't have anything to do with the fact that I won them both.

Although, I love being able to be close to Little Dorrit and see her, being in the NICU every day for hours is very hard. The doctors have lightened up on her sedation so she is moving around more. Sometimes, her little face scrunches up into a grimace and it looks like she is trying to cry. But, she can't cry because she is intubated. Just seeing her little grimaces makes me wonder how much pain she is feeling and it breaks my heart to not be able to hold and comfort her.

Last night, the nurses started weaning her off some of the oxygen she was on. She went down from 100% to the low 80s now so that's good. Oh, in yesterday's post, Mr. Rochester didn't mention that Little Dorrit also suffers from pulmonary hypertension but this is thought to be unrelated to her Protein C deficiency. The pulmonary hypertension is the reason she cannot currently breathe on her own but we are hoping this will work itself out as she gets bigger and stronger. Little Dorrit had some more scans today and so far, she still does not have any clots. With the Protein C deficiency, there is a chance of blindness and this evening, ophthalmologists looked at her eyes. Her left eye is okay but they noticed some haziness in her right eye and believe there is a slight hemorrhage there which may cause vision/eye muscle problems in the future. Next week, they will check her eyes again. 


Jani said...

Ok, diagnoses are good. Doctors can work with something when they know what it is. I know Little Dorrit still faces many challenges in the days and weeks ahead, but I feel like the tone of the last blog post and this one is lifted. Hope is such a beautiful thing, and I am so grateful that with additional knowledge, you can now have more and more of it.

You both are so courageous and strong. I've been googling the heck out of every medical term you throw out and am just so GLAD that there is somewhere for your doctors to go now. Are you sick of reading my comments to that effect? Sorry. :) Love to you all.

Kelly said...

Hooray for laundry! I'm glad you got to focus on something else for a bit and even win a game or two! :) Its good to hear she's being weened on oxygen a bit. I was wondering how she was progressing in that department. Maybe you'll get to hold her before long. I bet she's adorable. :)

Cormorant said...

I'm glad you were able to take a little break, and that things are slowly looking better and better. Xoxo