Posted (Tina) in All Posts on February-10-2008

Thank you for the continued thoughts and prayers. When it seems that God is silent, He still wants us to seek Him.

Ella had a much better day. Although inconvenient, we decided late yesterday that we would try a slow amount of food over longer periods of time. Basically, we are giving her 35ccs 9 times per day over an hour each time and a continuous feed at night of 235ccs for 8 hours. This means that she is connected to the food pump pretty much all day and night.

This seemed to work for Ella today. She did not retch and did not have episodes where she was uncomfortable due to her feedings. She was behaving more like herself – – smiles and all. Praise God that something worked! In this way, it definitely seems that it is not the food itself causing discomfort but a volume issue.

Keep in mind that this behavior concerning food still seems strange for Ella. I think all of this would make more sense if Ella was just gaining a tolerance for food. Yet, she worked all the way up to bolus feeds in the NICU and was fine when we left on January 25, 2008. Even prior to bolus feeds which she conquered in mid-January, she was taking 60ccs over an hour during the day. Yet, it doesn’t even seem that she can do that anymore. So, it seems we are progressing backwards and doesn’t make sense based on the progression of events.

This is part of what makes it more of a mystery. Many CDH babies have trouble with feedings. But it seems strange that 2 weeks ago, she was fine with bolus feeds and now she isn’t.

Another thought concerning Ella’s intolerance of food this past week was the density of the food. We started with 20 calorie Alimentum and used that for 3 days. Starting today, we used 24 calorie Alimentum formula and will do that for another day. From there, we will slowly add calories with polycose powder, so we can achieve our goal of 28 calorie formula.

We are enjoying the mechanics of the Mic-key g-tube, but think that Ella may have a size that is too big. When we see Dr. Kays on Tuesday, we will be asking him to take a look and possibly consider a smaller size (it projects off her too much).

After listening to Dr. Charles Stanley this morning, I was reminded that when God is silent we are always worried that He is absent. Yet, we have His promise that He is never absent from us. That silence, is a reminder that we long for Him, that we hunger for Him, that we thirst for Him.

God knows what is on our hearts. He just wants us to pour ourselves out before Him. Please join us as we seek and cry out to the Lord for Him to reveal wisdom to solve Ella’s mysteries.

Psalm 102:1-2
Hear my prayer, O LORD;
let my cry for help come to you.

Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.

Kara on February 10th, 2008 at 9:46 pm #

Is there anyway the surgery she had on her tummy could be causing the feeding problems? Like scar tissue built up and is taking up precious space? Just a thought that keeps coming to me. I’ll keep praying that you figure it out. Glad spreading the feeds out is working. Sometimes when you are tiny it’s hard digest very much at once.

Joel Snyder on February 10th, 2008 at 10:54 pm #

Ella,I am glad to hear that you had a better day. I will be praying for you to get used to the formula and new feeding schedule. Tina and Josh hope you guys can get your schedule to work along with Ella. I will check on you later. Love,Grandpa!!!!!!!!!!!!!

Amy Sabatino on February 10th, 2008 at 11:02 pm #

I will continue to pray for your family. I am so thankful that you had a better day with ella. I will pray that Dr. Kays will gain more insight into your mysterious daughter. Dr. Kays had the oppertunity to meet Roger today. I happened to be in Ocala at the time. He may have to place a dialysis tube in Rog sometime. Hopefully not. Take care with love amy

Gloria & Red Jacobsen on February 11th, 2008 at 7:40 am #

Ella is so darling! Seems like God’s plans are always a mystery,but in away we can never figure out He works everything out for the best.But it’s sure hard to figure,guess were not meant to understand everything but just to keep on trusting and doing our best while He of course does the rest and you two are most certainly doing that and I’am off to Mass to pray for Ella and her loving parents,we are lifting you up in prayer daily.As always,Gloria & Red

the Lizotte family on February 11th, 2008 at 8:10 am #

Yesterday on the way home from my In-laws house we went passed a Church with a sign that read “This is the sign”. Maybe you need the silence to listen to your Ella. You guys will work this out you have an amazingly strong girl with very good communication skills even if a bit primitive.
BIG HUGS and lots of love. XOXOXO

Julie's friend Motormouth on February 11th, 2008 at 9:19 am #

Our Disciple Bible study group is praying for all of you this week!!!

Lisa Richmond on February 11th, 2008 at 10:15 am #

oh my Goodness…My heart just continues to pour out for your family. He will answer your prayers, in His perfect time…

While you wait…keep the faith, know that around the world you’ve touched so many and many have your in their daily prayers!

Update: We’re going home to visit family this weekend. We haven’t been home since we moved here in July. So we know your pain of missing loved ones. The girls are so excited to see their cousins, they can hardly stand it!

Heidi Ham on February 11th, 2008 at 10:45 am #

Josh and Tina I just lift you all up to God for His healing hands to be upon all three of you. Ella you are such a beautiful little girl – Heavenly Father please hear the prayers that are petitioned to you on behalf of this family. Love and hugs from The Ham Family in California 🙂

Char and Jim Jordan on February 11th, 2008 at 1:09 pm #

It is not hard to do something that takes time if it works. Hope it works again tomorrow. We are glad your are receiving some relief. Things just might settle down now for the first time in Ella’s eventful life. Carry on now, hold steady. We love you. Aunt Char and Jim

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