New week, new doctors.

Hi friends,

Madeline has done well since the surgery. Like the Dow, she has had her ups and downs but seems to be making some gains in her weight. She is hovering right around 4lbs now. Thank you all again for continued prayers and support, I know this has been a long journey for all of you and we really appreciate you hanging in here with us.

This week brings all new doctors and specialists, and it has been a little hard on us and a little harder on Madeline. Although the medical info gets passed along to the new crew, some things seem to fall in the cracks. Different decisions get made, sometimes hastily it feels, and Lisa and I are struggling to communicate with everyone all that we know of our little daughter. Things like how she, like her sisters, is intolerant to milk protein, and she tends to desat a lot when she has a wet or poopy diaper.

Sometimes we come in to find that she has been given Ativan, yet again, to help her calm down, when all she needed was a fresh diaper and some attention. Lisa had a good talk with the new doc today, she said he did a good job of listening to her. He feels they will be extubating (removing her ventilator tube) by the end of this week. This feels very optimistic and almost cowboy like. Given Madeline’s track record, I wasn’t expecting it this soon. However, if she is ready, I am excited and can’t wait to get that tube out.

Please pray for Madeline that she starts gaining weight again, between her gaining and losing weight, she is where she was roughly 2 weeks ago. Also pray that Madeline is ready soon to come off the ventilator. I am both scared and excited for this moment. I wonder if she’ll cry, what will it sound like? I can’t wait to hear her voice, we haven’t heard her since she was born. Please pray for Lisa and I as we continue to bear under the stress of all of this and work a job and take care of our other three kids.

Grace,
Shanker & Lisa.