Posted (Tina) in All Posts on September-29-2008

Ella did not sleep last night.

The Alimentum 20 calorie food went in a bit better and did not give as much tummy trouble, although she had a lot of gas. Each time I fed her, it required multiple times of venting. Also, she still was waking up retching on her own airway secretions throughout the night.

For food, they wanted Ella to try Alimentum 26 calorie since this is the food she ate before surgery. Unfortunately, she did not tolerate it. It gave the same symptoms as the Peptamen Jr – tummy pain and lots of back up including large amounts of bile. I think it is still too dense for her. When we switched back to the Alimentum 20 calorie formula this afternoon, she tolerated it much better.

We have been bolus feeding her 2 times overnight. Tonight, we are going to try and go back to a continuous feed overnight (180ccs for 6 hours; rate of 30ccs per hour). Back at home, she was on a continuous feed overnight before and we are hoping that she will tolerate it since it is only 20 calorie Alimentum. This is what we would like to go back to doing for a home regimen, so we hope it works.

By 6pm tonight, the pulmonology team opted to increase her dosage of the Aldactazide diuretic to the most it can be. We are hoping that it is enough to put Ella in a good place. The next 24 hours will be telling. If not, they will have to look to add the Bumex (a loop diuretic) back into her regimen. Because she has calcium deposits on her kidneys, they are trying to not use Bumex.

There were times that Ella seemed really happy and herself today. Yet, there were other times that she was in pain or simply did not feel well. It was a roller coaster type of day. When the times were good, we tried to take advantage of them.

Kelly the nanny spent the day with us at the hospital. We figured it would be good for Ella to start seeing her on a regular basis and I can start with teaching her about Ella and her care. Most of the time, Ella exhibits stranger anxiety. Today with Kelly, she did not act much different. That was a fun, positive experience for Ella.

Another noteworthy item: I placed Ella’s hair in pony tails today! It was a fun change of pace. Her hair is finally getting long enough and I finally bought some special rubberbands the other day that work great with fine hair. I think she knew that her hair was sassy!

At this point, the doctors are running out of ideas. Please pray for God’s wisdom and guidance in the decisions that need to be made in the coming days.

We really desire for Ella to be discharged from the hospital, but know that He has a plan and that His timing is perfect.

Amber on September 29th, 2008 at 11:37 pm #

I love her pony tails to cute!

Kelly the Nanny on September 30th, 2008 at 12:04 am #

Ella’s pigtails are amazing. It’s nice to see the feminine addition, rather than the bed-head Mohawk.

1 Samuel 17:50
“So David triumphed over the Philistine with a sling and a stone; without a sword in his hand he struck down the Philistine and killed him.”

When God is involved, anything can happen; take heart. The One who directed that stone between Goliath’s eyes and divided the Red Sea and brought His Son and the Savior of mankind back from the dead takes delight in the seemingly unexpected and incredible, and our willingness to obey even when it stinks. Even though Ella’s temperament and behavior is so antithetical sometimes (more often than not), He is guiding her along His path (and the rest of us follow blindly…) and He is delighted to see your obedience to Him.

There is NOTHING greater in this world than when our will lines up with His. The Kingdom is unstoppable. Even though it’s a dead end right now and all “waiting time,” He has mapped out the next hours and days and weeks to fit His scheme. God seems to be frugal with how he spends the strength and energy of His followers–He knows just how far to go to accomplish His ultimate goal. How great…

Love you guys! Sleep tight 🙂

Joel Snyder on September 30th, 2008 at 2:29 am #

Ella, I had wonderful time at lunch with you and Mom and that great new nanny Kelly. You are fortunate to have so many people who love,care, and pray for you everyday. I must say that new hairstyle does look terrific. I am praying that we are getting closer to the answers with your food and fluid problems. I will be over tomorrow to visit you and Mom. Love,Grandpa!!!!!!!!!!!!!

Kelli Billman on September 30th, 2008 at 6:30 am #

I love the pigtails!!!

Williamsburg on September 30th, 2008 at 6:55 am #

I am working on a lesson to give to a women’s Bible study later next month on being “doers” of the word and how there really is no other way to understand it than by acting on it. The way all of you have chosen to be active participants in God’s agenda for Ella’s life is the kind of wisdom I think James is talking about. Hard as each additional day in the hospital is, the news that God is faithful and has your long-term good in mind (Rom 8:28) makes the patience and perseverance worthwhile. We’re praying for wisdom and for his provision to sustain you every hour. All our love. XOXOXO

Megan on September 30th, 2008 at 7:34 am #

The pigtails were perfect!

The Riches on September 30th, 2008 at 7:54 am #


Lisa (Ms. Texas) on September 30th, 2008 at 8:10 am #

Cindiloowoo! See looks like a cute woo from wooville!

Jim and Char Jordan on September 30th, 2008 at 9:08 am #

Ella has such a beautiful spirit and connection to Father that she too finds every moment she can to feel better and shine. Love those tails.

Fran on September 30th, 2008 at 10:03 am #

Love the new “do” Ella! Pray that you begin to feel well enough to be discharged soon so you can all go home. You, Mommy, Daddy and Kelly will be more comfortable and can settle in.

Heidi Ham on September 30th, 2008 at 10:21 am #

Oh my goodness! Paul’s Mom used to do the same thing with all our girls hair – though when she did it they were REALLY tight and the girls had chinese eyes! She looks adorable. I pray that answers are provided soon for Ella’s treatment. I sure would like to see you all back at home together. Love and kisses!

Tammy on September 30th, 2008 at 7:59 pm #

Ella’s hair is too cute!! We ladies need a new “doo” now and then!

I pray for insightful wisdom for Ella’s medical team. My grandma always said “be still children and you will hear”….so, in the midst of all the chaos, tubes, feedings etc., the lord will speak softly and you will hear his direction.


Jill E G on September 30th, 2008 at 8:05 pm #

Praying for answers for Ms. Ella. You guys are doing a great job hanging in there but I’m sure you are ready to get home. Hope everything goes smoothly from here on out.

Glad to see you visit Autumn’s site. I’m trying to post pics for Kitty but having some trouble. Autumn is beautiful as all CDH babies seem to be.

Give that cutie Ella a hug from her CDH survivor fan Gus. He loves the pig tails – I showed him her picture.

It looks like Gus has reherniated and we will hear from our drs tomorrow to find out our plan.

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