Posted (Tina) in All Posts on December-26-2007

As all of you know, Ella has had a rough week. Last week this time, she was starting to go down the wrong path. We feel that the key change that made things turn for the worse was switching her diuretics to be administered orally vs IV.

When this was changed, they also increased the volume significantly plus added 2 more diuretics since they noted that the atelectosis was kicking in. She has very little reserve and any slight changes can make a huge difference for her.

Dr. Kays returned today and confirmed our theory. He was not happy that the diuretics were modified while he was out of town.

In retrospect, the nurse practitioners simply wanted to come up with a plan to get Ella home with us sooner versus later. However, the steps that needed to take place in order for that to happen were too many changes, too quickly for Ella. If we have learned anything, it is to make changes slowly.

Dr. Kays stated that it is more important to get her back to where she was last week before all these changes took place. So, he’s now only using 2 diuretics – lasix and diamox. The dosages have also been reduced, but he ordered that they be given via IV versus orally.

He wants to watch her progress and begin to wean the oxygen back down to 500ml. Once she is back to that place, we will discuss further steps.

The two main challenges at this time are her feedings (finding the proper formula and schedule), and the switching of the diuretics from IV to oral. This could take some time. We need to be patient with these last challenges.

We spent all day with Ella in the NICU today. A few times, we caught some good smiles. This means that she must be feeling better.

Please continue to pray for our little girl. We want her to get stronger, gain endurance and hit all her milestones so that she can come home with us.

On a note of praise, Par is getting ready to go home tomorrow!!! Thank you for all the continued prayers for this boy and his family. Although Ella will miss sneaking across the NICU at night to snuggle with Par, we are very excited for them. Please pray for their safety on their drive home to Birmingham.

Claire on December 26th, 2007 at 4:54 pm #

Ah, cute says Claire. Ella looks amazing. Slow and steady wins the race. Go Ella, Go God!

Williamsburg on December 26th, 2007 at 5:22 pm #

What a precious Christmas gift to get to spend all day with such a gorgeous girl – looks like her hair is starting to grow out, too! It certainly has come at a price, but your education regarding Ella and her needs is going to be invaluable as you face the next baby steps forward to that glad day when she finally comes home. Our crew can’t wait to introduce her to the snow next year at this time! Meanwhile you are in our prayers consistently – love and hugs always. XOXOXO

Jim and Char Jordan on December 26th, 2007 at 7:24 pm #

We are so thrilled at seeing the Christmas clothes and your bright shining faces. I think you are very wise to stay close to Dr. Kays and the spirit which whispers so quietly while Ella is so fragile. Most people do not have the experience and love you and Josh have for YOUR baby. While they can make educated guesses about her condition, only you and Josh can really tell the teltale signs of a downward spiral. You have seen it over and over again. Glad to hear that Dr. Kays validated your impressions. Keep up the good work and you may make it home before Easter. Our love to you…Aunt Char and Jim

Gloria & Red Jacobsen on December 26th, 2007 at 8:11 pm #

Ella’s smiles are just wonderful! She seems to have a very cute personality! Quite a baby girl! We’re glad they are taking things slowly. Looks like Miss Ella does’nt like to be rushed! So glad the medical staff agrees with your concerns. Praise God for her amazing progress these past 5 months and we thank him for Par’s going home. soon it will be Welcome Home Ella! Prayers always for all three of you!

Zandra on December 26th, 2007 at 8:41 pm #

It is wonderful to see Ella’s bright eyes and shining smile again!!! I am so glad to see how much better she is doing!!!

Joel Snyder on December 26th, 2007 at 10:17 pm #

Ella, I am so excited to see that you are doing better. I am also excited to see your friend Par is going home. Just keep up the baby steps and you will be going home soon. Have a good night and I will check on you tommorrow. Love,Grandpa!!!!!!!

Jan Costas on December 26th, 2007 at 10:40 pm #

What wonderful smiles! It’s wonderful that you are so in tune with what Ella is needing, and then to have it verified by Dr. Kays. That’s got to give you some confidence in getting ready to take her home. Exciting times ahead! We continue to pray for all three of you.

Lizotte Family on December 27th, 2007 at 6:22 am #

Everyone looks fabulous and so does the new year!

Joan and Steve Odell on December 27th, 2007 at 7:55 am #

Well now, aren’t you just the happiest Daddy!!! It is wonderful. Our prayers will be with Par and his family as they return to their home and in the days to come. Prayers continue for Ella’s stabilization and improvement so she can go home. love and hugs to all – Steve and Joan

Morgan Mayes on December 27th, 2007 at 8:44 am #

Ella’s smile is so precious. I’m glad that the changes were caught and remedied. We’re still praying for you and so excited for when Ella gets to come home with mom and dad.

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