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.

Joel Snyder on December 4th, 2008 at 2:45 am #

Ella, What good news that you are starting to sleep better at night. I am so pleased that you and Kelly are getting you excercise and that you are tolerating it. Josh the project looks like it turned out great and you do make a great “Santa”. Tina I join you when I think back to the first time when you and Josh were informed that Ella was a CDH baby and the journey began. I am so proud of what you and Josh have done for Ella and also so proud of what this blog has done for so many people. Ella you are truly a miracle and loved so much by all of us. Sleep tight and I will catch you later. Love,Grandpa!!!!!!!!

Lesli on December 4th, 2008 at 4:41 am #

Josh makes a great Santa! What fun! Ella looks great, and I’m so glad you have a good OT and PT. With a good fit, those milestones will catch up. Just takes time. I remember reading a report when Luke was 3 1/2 that he was developmentally 11 months old. It made me feel sick to my stomach…I know how discouraging it can be. But God is faithful, and will give Ella every skill she needs to fulfill his good and perfect purpose for her life. Keep up your strength, my friend. I’m praying for you. Love, Lesli

Loren L on December 4th, 2008 at 7:26 am #

Right on Josh! I love photobucket. Keep working with Ella children are amazing, they can do anything so long as they feel loved.

Estela Williams on December 4th, 2008 at 7:39 am #

That is so cool Josh…. 🙂 You are the perfect Santa! Ella has come along way and now that sometimes when you compare your child with others, it might look like they fall short in some areas… but they are all individual children who have their own challenges and blessings… Ella is perfect! Love ya

Amber Riley on December 4th, 2008 at 8:27 am #

Ella looks adorable as always!
Josh! I use photobucket all of the time for my website and made a slideshow with “Santa” last night!!! it is one of the best they have ever done. Love it!!

Joan and Steve Odell on December 4th, 2008 at 1:34 pm #

Awesome, Santa Claus – great pictures and so glad Ella is sleeping better. So glad Kelly is able to work with her on pt and ot. Hugs and prayers continue. Steve and Joan

sherry martinez on December 4th, 2008 at 2:34 pm #

Thank You for thinking of the other cdh babies cayden and i saw the lung dr and dietician today and they are never satisfied with his weight gain. He gained just shy of a pound in 4 weeks, but during that time he battled a cold and managed to stay out of the hospital. He did however get bumped down to a 1/16 of a liter of O2 so that is a blessing. someday when ella is older she will see through your blog how many people she helped just by living. Your family has always given me hope I am so thankful for your ella and my cayden as they are both true miracles god entrusted to our care. What a blessing he trust us so much to care for his creation. Thank You for all your giving you and josh are very special people. cayden and I think of you daily god bless love sherry

Kelli Billman on December 4th, 2008 at 3:26 pm #

I have to know…did Ella see Josh dressed up and if she did, what did she think??? Did she recognize him?

Terri Trainer on December 4th, 2008 at 10:10 pm #

Tina, you weren’t kidding. I almost wet myself watching Mr. Claus. THX for sharing!!!

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