Saturday, October 4, 2014

Back again

We drove back up to St. Louis yesterday. This time we brought Trotwood with us. We were nervous about taking him with us because he is such an active little five year old but I feel like he actually behaved himself very well, especially at the hospital. Some dear friends of ours whom we consider family also came yo St. Louis this weekend with their family. Last night they watched Trotwood for us so Mr. Rochester and I could go to the St. Louis temple. We caught the very last session and I think we were the last patrons to actually leave last night.

Going to the temple helped me feel more at peace. On Thursday, our call from the NICU told us that Little Dorrit will most likely lose her first three toes on her left foot. The toes have been black with only some pink flesh since the day after she was born, likely due to tiny little blood clots that have blocked the circulation to her toes. Now, the toes are necrotic and although the medical professionals we are working with aren't certain she will lose her toes, they think it is very likely to happen. Perhaps, because this is such a physical manifestation of her illness, I just fixated on this and really began mourning the loss of her toes. Who doesn't love little baby toes and feet? Now, along with all her other health issues, if Little Dorrit pulls through, she will have to go through life with "different" feet. In the grand scheme of things, the loss of a few toes isn't too terrible, I guess. Really, we are lucky it isn't a whole arm or leg. 

She is still very sick and we keep looking for and trying to appreciate the small improvements she does make. Like, yesterday, she had her eyes open for a long time while we visited with her. That's the first time I've seen her with her eyes open for more than just a second. And, she's being fed breast milk through a little tube now. Also, good. 

6 comments:

Kelly said...

That's exciting you got to see her with her eyes open for a while! Also that she's being fed now! I'm glad Trotwood got to go with you. Our prayers are with you all!

Kelly said...

Also I'm SO glad you could attend the temple. What a blessing!

Jenny said...

so great that she was able to open her eyes while you were there. And being fed breast milk is wonderful. Happy that Trotwood was able to spend time with his little sister.

Natalie R. said...

We're praying for you guys every day! One of the Gen C speakers yesterday mentioned the power of lots of people praying and fasting together and I immediately thought of your daughter. May God bless her!

Mrs. Cinnamon said...

so much of what is being said in GC leads my thoughts back to you and your sweet family. Lots of love and prayers are coming your way from MD. How awesome that you got to go to the temple. Her eyes being open and looking around at all of you had to make you all feel super special. So happy for you. Love you.

Jani said...

I'm so happy to read about her small miracles in this update! Hooray for open eyes and breast milk for her. What a blessing. Don't beat yourself up too much, though, for mourning her toes. You're allowed to feel whatever you are feeling through this whole process--you are clearly grateful for ALL the good but you can still allow yourself to feel the full range of emotions that come with having a sick child in the NICU. I've heard it described as a roller coaster and you just have to ride the highs and lows. Give yourself a break. :)