Good Night Kisses

Each day you keep retaining more and more fluid. Today you are retaining so much fluid that your skin is firm...everywhere!  Your cheeks, head, your legs, belly, hands and feet all extremely puffy.  You look very uncomfortable and sick.  You had a really hard time breathing today (desatted many many times) and they went up on your vent settings.  30 bpm, 28 in pressure, 8 peep, 45% O2.  That makes Mommy nervous with the secretions you're having from your lungs and the possibility of another infection or pneumonia.  You really need heart surgery!  Sunday will be your last day of antibiotics and Monday they will talk about surgery with the CT doctors (cardiothoracic).  We keep praying for your heart, lungs, swelling, kidneys, intestines, brain...every part of you.

Even your poor ears are swollen.
Look how your neobar cuts into your lip.

Daddy showed me a Psalm today...Psalm 77 vs 1-15.  Mommy's feelings are like the psalmists feelings.  As I was reading I thought of God's faithfulness to our family in seeing "rainbows" several years ago.  It has been quite a long time since I've seen an actual rainbow, but today driving to the hospital there was a VERY faint one, so faint Daddy didn't know what I was talking about.  But as I thought of God's promises I thought of the verse,

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

God will never leave you Joshua, He never leaves me either although right now I do not see him at work, I wonder where he has gone?!  But He is here even when we don't feel it.  Be strong and courageous my son.  We are praying for a miracle for you.

 

You are the God who performs miracles; you display your power among the peoples. Psalm 77:14

Mommy has had some more rough days, but we asked Chris, our favorite nurse, to raise the roof of your bed so I could kiss you goodnight.  She was happy to do so and kissing you was very good medicine for Mommy's heart, especially since I haven't been able to hold you for several days.  I love you!

(P.S.  You got to 18mL feeds today!!!  No TPN right now!  Awesome job buddy!)

Sleep Tight!