The night from H E double hockey sticks

Well that was one of the worst nights of my life. Laila was in so much pain and there wasn’t much they were doing for her. This girl has a HIGH pain tolerance so when she cried for six hours straight, you know it’s bad.

She is finally sleeping right now.

“Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” -Hebrews 4:16

So yesterday – she was taken back to the OR around 7:30 (all times are Eastern) and they began surgery around 8:15. They started with removing the colon (large intestines). That took a very long time and unfortunately the uterer was very close to the colon and it got accidentally cut. This caused a whole different incision, repair work and a stent to be placed by urology during their bladder portion of the surgery. So in six weeks we have to come back for another surgery to have the stent removed :(

“Call upon me in the day of trouble, I will deliver you and you will honor me.” -Psalm 50:15

“My flesh and my heart may fail but God is the strength of my heart and my portion forever.” Psalm 73:26

Around 12:30 GI came and told us that the colon was completely ready to come out except they wait so that urology can harvest the appendix to use for the vesicostomy for the bladder port (Monti).

I grieved over the loss of that colon so much. It just made it so real hearing that it was almost completely out of her body. I don’t know if I will ever find the words to describe that feeling but I think it was a healthy emotional process for me.

Habakkuk 3:19 (AMPC) ” The Lord is my strength, my personal bravery, and my invincible army. He makes my feet like hinds feet and will make me walk (not to stand in terror but to walk!) and make spiritual progress upon my high places (of trouble, suffering or responsibility).

Around 1:30 angry colon was no longer with us. Rest in peace angry colon.

Isaiah 41:10 “Do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.”

3:30 Urology came out to speak with us about their portion. She has two catheters right now for drainage. The one in the Monti port will stay in for three weeks and then need to be removed by the doctor.

3:45 GI was done and reported everything went good. All incisions closed and stomas brought to the surface and tacked in place.

We got to see her around 5:00

Then began and evening of crying, pain, high fevers, high heart rates and fear. We spent all night and early morning trying to comfort her to no avail. It was horrible. We prayed and prayed for some relief but didn’t feel like we were really being heard or seen.

Then an angel of hope arrived at shift change this morning in the form of a young sassy confident faith filled nurse. Our nurse today is a-ma-zing! She walked in took one look at our crying baby and said “oh no, this will not do. I WILL help you.” For the next few hours teams of doctors and nurses came in and out like a revolving door and as of this minute we have no fever, an only slightly elevated heart rate and a sleeping precious girl.

“The Lord will fight for you, you need only be still.” Exodus 14:14

Below is a picture of a doll the ostomy nurses brought her this morning. We will never post pictures of what her stomas actually look like but you can see her special doll has a stoma just like her :)

Oh, and by the way, her ileostomy stoma we have named “Charlie Brown”…… Code brown. You’re welcome for ruining all your favorite holiday cartoons.