After I realized that I’d accidentally clicked the “publish” button on that last post, which happened before I had decided whether or not to publish it…
…I went for solace to the Psalms, and there was reassured by the truth that God does not prohibit His people from pouring out their hearts. Not only that, He does not require us to wait until we have it all tidily sorted out and filed away.
How I want to learn to walk in the low places where Jesus walks, in meekness and denial of self, in extending grace to others. Well, He wants that for me more than I want it for myself. Not only can He do that good and necessary and painful work in me, He can give me grace to say “Yes” to it, “Yes” to Him, right at the time when it feels like my heart is in the grain grinder. “Now no chastening seems to be joyful for the present, but painful; nevertheless, afterward it yields the peaceable fruit of righteousness to those who have been trained by it.”
So He heard my cry, and He answered by giving more grace, and the tumult in my soul has ceased.
Today was a delightful day! The fellowship met in our home, and Verity and I were able to visit with those who ventured upstairs to our survival zone! How we do love visitors!
On Tuesday when she goes back to the pediatric cardiologists, we plan to report that she has again been growing more sleepy, taking longer to drink very little from the bottle, sweating more, and having more labored breathing. We think this is because she has gained weight and needs more Lasix.
We want to ask how we can balance her Down syndrome needs (stimulation/exercise) with her heart defect needs (preserve her energy to help her grow). She has so little awake time right now, there’s not much we can do, and we’re not sure how much we should be pushing her. We hate for her to lose all this time and opportunity to learn.
We are also concerned that if we wait too long for surgery, and she grows too used to the bottle and tube, she will not be able to regain her ability to nurse.
We are wondering if it might not be better to just get the repair done so she can move ahead in other areas. We keep remembering that they said that they can safely do this type of repair in five pound newborns. And this holding pattern is taking its toll on the rest of the family.
They had explained that they are not waiting for her to reach a certain weight before surgery, they’re waiting for her to be two months old. That is five weeks away. Until then, they want to see her growing. Not holding steady, not losing, but gaining.
Well, she is gaining! Five days ago, on Tuesday evening, she weighed in at 8 lbs. 6 1/2 oz. Tonight she was 8 lbs. 14 1/2 oz–a gain of half a pound!
A few more photos, taking advantage of her one wake time of the day~
Our oldest child and youngest child. Joseph held her for a bit before heading out with Daniel to milk our friends’ cow and feed their animals. (They’re picking up all sorts of new skills!)
Joseph will help to expose her to a wide vocabulary, and she will help to expand his nurturing skills. Daddy practice.
A little tummy time. Big brother Peter is there to coax her to lift up her head.
Big girl, Verity! We are so proud of you! You are working so hard! *rattling toy*
Whew! Wiped out! Kissing time. Myum, myum, myum, soft baby.
How could we possibly love you more than we do?