Friday, October 11, 2013 Update

Today I spent most of my day with my older children. We went to the dairy in Santa Fe and traded our eggs for their good wholesome milk.  We also straightened the house a bit and then went to the park.  After the park, we went to meet Daddy (James) at work and then headed to the hospital for all of us to visit Lenah.

 Sarah at the park

 Joseph

 Sofia

Last night Lenah had another abdominal ultrasound.  Part of me is hesitant to make bold proclamations, but the rest of me wants to shout from the rooftops.  The radiology report said that Lenah's liver and gall bladder appear completely normal.  It also stated that the necrotizing entercolitis appears to be resolving.  I am in complete and utter amazement.  This past month has been such a roller coaster.  Now having a child with a severe heart defect has made me realize just how precious each day I have had with each of my children has been. But, oh, how many moments have I let slip by without proper thanks and recognition?  I try to set each moment I have with Lenah in my mind because I am so unsure of how long I will have her here with me.  The startling truth is the situation is same with my other children.  I have just taken them for granted.  All those moments.  Gone.  I should have been making an effort to catalog them all.  I know I can't live in regret of that, I just have to try to be more mindful of this truth from here on out.  All the moments are precious, even the difficult, monotonous, or irritating ones.  It doesn't seem that this will easy for me to remember all the time. But I will try.

Lenah's heart rate, blood pressure, and oxygenation have all been good.  She has been resting much more peacefully.  Her potassium was too low today so they gave her some extra.  Her urine output is good, Her temperature has been good.  She is on the same medications as yesterday.  She is still on the ventilator and at 25% oxygen (4% more than room air)  Her color continues to improve and her belly looks less distended.  Her chest tubes have not been producing anymore fluid.  Hopefully, she will get those taken off and we can get her off the ventilator soon.  The sooner she can start being fed again- the sooner she can start growing and getting well enough for the next step of her heart modification.  Hopefully, she will be able to come home sometime around Valentine's Day.  That would be rather fitting, I think.

Some pictures from tonight's visit