Posted (Tina) in All Posts on March-11-2008

Ella had a great day.

She took a bath and got all cleaned up to see one of her favorite people, Dr. Kays. The best news: The Bun gained weight. She gained about 140 grams over the past week, bringing her weight to 11 lbs, 9 ounces. Dr. Kays wants her to gain weight at a rate of 15-30 grams per day. Most babies will gain 30 grams per day, but as low as 15 is acceptable for CDH babies. Since Ella averaged 20 grams per day, that pleased him.

He did want to discuss the strategy for further weight gain over the next couple of weeks. He asked what we thought she would tolerate the best: a volume increase, further calorie density, etc. After some discussion, we leaned towards making a change in the overnight feeding when she is asleep. The likelihood that she would notice any difference is minimal. He is checking with the nutritionist and will be contacting us, but we will likely add some oil to her feed at night. Even just 1 tablespoon of oil to her food each night would give her an enormous boost in calories which should result in weight gain.

We did find out about her labs from last week. Interestingly enough, her BUN was 28. It jumped a tremendous amount from the prior labs. Now, it is in a place where she could get too dry. So, he asked us to get labs before we left the building today, since we will not be seeing him for 2 weeks. Since she is on such a high amount of diuretics, her electrolytes do need to be monitored closely. If she is too dry, he may make an adjustment to her diuretics.

When we went to the blood lab, they had a tough time drawing blood from Ella’s veins. This could be another indication that she may be too dry. Hopefully, they drew enough to test her electrolytes, so that Dr. Kays can do his analysis. It would not be fun to have to make a special trip just for that purpose.

Ella did have granulation tissue around her g-tube again this week. The only thing you can do is keep it clean and dry. We do our best at that by keeping gauze around it. It is frustrating that it continues to return each week. I’m hoping it will decrease over time, but have accepted the fact that it may remain until she no longer has a g-tube.

Dr. Kays always tries to give Ella the benefit of the doubt while checking her saturations. I think he is secretly hoping that he will be able to wean her oxygen. Unfortunately, she only gave him a 94 while he was checking. That is definitely not good enough to even consider weaning. But slow steps downward will eventually be another milestone for Ella.

All in all, a great day for Ella. We thank the Lord for our precious baby girl.

Joel Snyder on March 11th, 2008 at 8:46 pm #

Ella, You are unbelieveable and just keep amazing me with your baby steps forward. You look great and it sounds like you and Dr.Kays are having a lot of fun these days.I am praying that you will keep up the good momentum and weight gain. I will check on you later. Love,Grandpa!!!!!!!!!!

Jim and Char Jordan on March 11th, 2008 at 9:04 pm #

What a cutie! LOL Jim and Char

Tracy Schultz on March 11th, 2008 at 9:48 pm #

That is great news! Wow, she’s come so far. What a blessing.

Adrienne - Melissa's sister on March 11th, 2008 at 11:17 pm #

Wow! She is just doing so beautifully! We continue to pray for her strength! she is a beauty and really just looking so “normal!” She has got such beautiful coloring! I love those happy faces… BTW – we *really* enjoyed Tina’s monkey face the other day! (A side of her we hadn’t seen before!) Well done – that is some talent I bet you thought you’d never use before! ; ) Let’s see Daddy’s face too!

the Lizotte family on March 12th, 2008 at 5:25 am #

WOW! what a doll! she is such a beauty. And she is sure is growing a lot of hair up there. I’m taking Roni to see the doc today, she is still not feeling well. Praying for you everyday, big hugs

Kristen on March 12th, 2008 at 5:40 am #

Oh Dr. Kays must have been so encouraged by your visit. How your love has given Ella the best place to heal and grow strong. He trusts your care of her and he should! 🙂
Love seeing her many expressions. What a doll baby! We are praying for your transition from work to fulltime motherhood. Let us know how it is going. Blessings! Kristen

Joan and Steve Odell on March 12th, 2008 at 8:50 am #

Congratulations, Miss Ella – you are doing so well and look so wonderful. Keep up the positive work little one. Prayers and hugs – Steve and Joan

Heidi Ham on March 12th, 2008 at 9:07 am #

Ella Bun – you are so ADORABLE!

Debbie Bennett on March 12th, 2008 at 9:52 am #

Just a thought… When we came home, John wasn’t gaining very will either. They put him on MCT oil. It made a difference, BUT it wears the button away a little quicker. So instead of replacing his button every 3 months, we had to replace it every 2 months. -Just thought that would be helpful.
Ella is sooooo beautiful. We are scheduled to come and see Kays on the 25th. I hope we can arrange to finally meet y’all. You are forever in our thoughts and prayers.- Debbie

Eve Johnson on March 12th, 2008 at 10:21 am #

Two things that really make my day. 1) My daughter smiling
2) Ella Renae smiling!
HAPPY 33 weeks indeed!
May the Lord continue to bless you all.

Garth Flint on March 12th, 2008 at 12:05 pm #

Hey Ella, you are amazing!!You are a miracle because we all see God’s work in you and we are so blessed just to be part of it. Tell your Mom and Dad, thanks so much for thinking about about me with the recent loss of my Mom. Ella, you are in our thoughts and prayers every day.
Love you all,


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