Posted (Tina) in All Posts on January-16-2008

Ella had a great day.

She was up for Nurse Marla at shift change this morning and was in a joyful mood. Nurse Marla could not stop commenting all day on how much fun she had playing with Ella.

When they came to give her a chest x-ray this morning, they wanted her in an upright position. While Nurse Marla held her up, Ella even smiled at the xray technician!

So clinically, her behavior was amazing. Plus, her heart rate remained lower (170 was the highest today, even when she was awake) and her saturations stayed in the mid-to-high 90s. Her oxygen remained anywhere from 700ml to 500ml, throughout the day as she tolerated it.

She is definitely still fighting a cold which is evident by her nose getting stuffed and her coughing. She still sounds sick, and yet through it all, she was still managing to play and have a good time.

It was so promising to see Ella exhibiting this behavior, even as we are getting further and further away from her last dose of IV lasix.

Again, it was not great to hear that she has moderate to severe pulmonary hypertension, but at the same time, this is an answer to prayer. We joined all of you in asking the Lord to reveal knowledge and give discernment. This was a huge piece of the puzzle and the heart medicine is already working its wonders.

The increase dosage of Bumex at times when her belly is less full also seems to be keeping Ella nice and dry. Her chest xray came back and it is the best chest xray they have seen thus far for Ella! I took a look and her left lung (although still significantly smaller than her right) is the most expanded that I have seen it. This is a major answer to prayer, in that it looks like the breast milk is not causing any fluid build up in her chest cavity. Because the xray looked so great, they decided to increase the breast milk to 50% of her total feeds, starting tonight with her 6pm feed.

She has lab work in the morning where they will check all her electrolytes and make sure all her levels are intact.

Today held a glimmer of hope that going home might be within reach. All of it will depend on how Ella trends over the next several days.

Please continue to pray that she will get rid of her cold, the increase in breast milk will be tolerated, her lab work will turn out well, the strategy with diuretics and heart medicine will continue to make her strong, so that they can continue to wean her oxygen.

Also, a special prayer request for Par’s mom, Liz. She was hospitalized yesterday due to a kidney infection. Right now, they are not sure if that is her diagnosis or not, but you can keep track by visiting their blog.

I wanted to share the lyrics to a song that ministered to my heart today. The words resonated and I couldn’t help but feel the weight of the words. It is so good to absorb and take in the truth of God’s love.

I have to believe
by Rita Springer

I have to believe that He sees my darkness
I have to believe that He knows my pain
I have to lift up my hands to worship
Worship His name

I have to declare that He is my refuge
I have to deny that I am alone
I have to lift up my eyes to the mountains
It’s where my help comes from

He said that He’s forever faithful
He said that He’s forever true
He said that He can move mountains
And if He can move mountains
He can move my mountain
He can move Your mountain too

I have to stand tall when the wind blows me over
I have to stand strong when I’m weak and afraid
I have to grab hold, hold of the garments
Garments of praise

I have to sing praise when the hour is midnight
He unlocks the chains that bind up my soul
My sin and my shame, He has forgiven, and made me whole

I have to believe

Sheila Par's great aunt on January 16th, 2008 at 7:46 pm #

Ella looks beautiful!! Still praying for all of you. Stay strong in the Lord.

Tammy on January 16th, 2008 at 8:08 pm #

Sweet girl! How wonder to see you feeling better. Being the grandma that I am, I “see” you with a regular old cold (minus that bad nose sucker of course) that will run it’s course and you just keep on smilin!! The power of positive “granny” thinking and praise to the lord!!!!!!!!

Tammy on January 16th, 2008 at 8:10 pm #

Oops, Ella……miss spell correction…. HOW WONDERUL TO SEE YOU FEELING BETTER! Forgive me, I’m a grandma you know!!

Lisa T on January 16th, 2008 at 10:19 pm #

Go Ella!! That is so awesome!

laura blackwell on January 16th, 2008 at 10:32 pm #

Rejoicing in your good news and glimmer of hope.

Lisa Correia on January 16th, 2008 at 10:40 pm #

Hi Guys,
We were having “Ella withdrawls” So great to see her beautiful face and hear about how she is doing. We’ll be praying for all those different things. You guys are the most amazing parents!!!! Thanks so much for letting us come along for the ride. We really can’t wait to meet Ella!!!
The Correias

Laura Marold on January 16th, 2008 at 11:17 pm #

Just checking in to see Ella and she looks GOOD!!! Please let this plan work for her. Sending you hope and love and prayers on a very windy California night. Nighty-night Ella. Love, Laura M.

Joel Snyder on January 16th, 2008 at 11:53 pm #

Ella, I just woke up but I have the day off so I don’t have to go to work tonight. It sounds like you are feeling better and the new medicine and food are working. I will pray that your cold goes away and you continue your progress forward. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!!

kristin on January 17th, 2008 at 12:15 am #


The stuffy nose is not fun! Thankfully children handle colds much better than adults! I agree with your Grandma, your eyes look clear and alert.

Tina, my Techie Tina, maybe you have found your true calling, the research and the dedication to learning and relying on your intuition is amazing.

You are all in our prayers. You are all so loved. May the sweetest of dreams reach you all tonight.



Julie Kirk -Saudi Arabia on January 17th, 2008 at 5:02 am #

Yes, we have to believe and thank you for sharing that. It is always good to be reminded. Ella is so beautiful with those little dancing eyes. the first thing I do when i login after work is check on Ella. When you take her home, please keep the post going.
In Christ, julie

Matt, Abby, Austin & Caed on January 17th, 2008 at 5:20 am #

Ella looks great!! I haven’t seen her look this good in several days!God is a God of wonder and of power, He is able to do all things! I once heard a preacher say, “I don’t know what the future holds…but I know who holds the future.” We’re praying that God will reveal His power and glory through this time and we continue to lift you three up to Him along with your friend Liz.

Joan and Steve Odell on January 17th, 2008 at 8:34 am #

She looks sooooo good – God is good to each of us. Prayers continue for her healing and strengthening. Prayers for the two of you as well as you prepare to take the steps towards bringing her home. Lord Bless and hugs – Steve and Joan

Claire bug on January 17th, 2008 at 9:03 am #

I love you and please Jesus make Ella heal. I can’t wait to meet my little cousin.


Claire Bug

Heidi Ham on January 17th, 2008 at 9:29 am #

Ah Ella Bun! How could you be any more adorable…..Great news on the xrays and her feeling better. Prayers will be on their way for continued good news……hopefully for your trip home soon too. Love, hugs and kisses from the Ham Family

John & Estela Williams on January 17th, 2008 at 9:29 am #

Amazing! Great to hear Ella is doing better. Love you guys and God Bless.

The Williams

The Chambers' Family on January 17th, 2008 at 11:58 am #

Yeah Breast Milk! I love that she can have your breast milk. Especially since we know you have to work hard for it!

Kelli Billman on January 17th, 2008 at 2:26 pm #

She looks fantastic today! Praise God for good days!!! Hope the two of you are feeling better as well. Looking forward to more good days!
In Christ,

Lizotte Family on January 17th, 2008 at 2:30 pm #

Breast Milk is what’s Best!!!! I love that cheeky Ella. She is a HARD working girl!!! 😉

Dawn Torrence on January 17th, 2008 at 3:03 pm #

Ella, is adorable! Your blog is just wonderful. Thank you so much for sharing your journey with CDH. Please drop by CHERUBS anytime, you are always welcome!


CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

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