Posted (Tina) in All Posts on December-3-2008

Ella slept better last night. On Monday night, I was up about 10 times. Last night, it was only 3 times.
I’m hoping she sleeps well tonight.

Kelly reported that the Bun was in a good mood today. Although there were no PT or OT sessions, they still did their exercise together throughout the day. Ella seemed to be smiling a lot and having a good time.

So, some of you might have wondered about the project that Josh was working on. Well, Josh normally does all the backend programming to make slide shows work for his company, We use slide shows all the time to show off Ella on the blog.

Well, this slideshow not only took programming time from Josh but it also involved him dressing up in a costume and filming footage in our basement. Yep, Josh is Santa in the slide show below which is now being used by millions of people! Pretty cool…

Wow, some of the insurance statements came today in the mail. Just for 7-8 weeks in the hospital in Denver, it was nearly $400k. Can you imagine life without insurance? I’m just in shock over how much money was spent while Ella lied in bed every day and they tried to adjust medicines.

As often as I can, I try to go and read other blogs of CDH babies and their parents. It is so heart breaking to see the trials of those who survive the defect and those who we will meet in heaven. Every time I read of another baby with their challenges to fight for life, it brings a flood of memories back from last year in the NICU with Ella. The daily challenge and roller coaster of having a CDH baby. It is such a challenge to see your baby so sick and yet there is really nothing you can do. My mind is baffled when I look at Ella and think about all she has endured in her short little life.

I received a pamphlet in the mail and it described the developmental milestones. I’d be lying if it wasn’t a bit discouraging. Every Mom wants the best for their child. Ella does most of the items on the birth – 3 months scale, and very few on the rest of the scale to her 16 months of age.

Yet, it is amazing that she is even alive. She is our little miracle. We are so blessed to have her in our lives. Although we may not understand His purposes or His ways, He ordains all of it. Every detail. Ella is made perfect in Him. She is made just the way He wants her to be. We need to trust Him: trust His plan for her life, for our lives.

Tonight, I lift up the parents of those with CDH babies. I pray that God will protect the hearts of the parents and families. Some babies are living and battling with CDH every day while other babies have been taken into His hands. I pray that we will learn to trust and surrender to His plan for our lives and for the lives of our children. Teach us to trust you more. Heal our hearts from any pain and sorrow that we’ve endured. Help us to have peace with whatever our circumstances might be. We trust that you are in control and thank you for the babies that you have placed in our lives.

Psalm 62:8 (NLT)
O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.