Posted (jooosh) in All Posts on February-7-2008

Yay! We’re back home, and a full home it is. Ella’s Aunt Shannon is in town for a visit and Grandpa is still here too.

Shannon had a conference in Orlando and planned to come up and see the Bun before she flew back to California. She spent most of the day with Ella and Tina in the hospital. Shannon even stood by as Ella’s G-Tube button was swapped out for a new one. Tina stepped out for this, as would I had I been there ;-). Ella’s other “Aunt” was also there for the quick procedure, right in time to give her some comforting cuddles.

Previously Ella had a Microvasive Mini-button for a G-Tube. It was low profile and looked real clean. The valves in these tend to be flaky though, and hers broke early on. We decided to go with the Mic-Key version this time. This one sits away from her body a bit more, and is more visible. There are some pros and cons to each one, but we think this will work best for us moving forward.

We’re still trying to find the balance for Ella’s food. It looked like the increased caloric version (28 cal) started causing her problems within 24 hours of giving it to her. We first thought it was a volume issue, but even after doing a pump feed over an hour, she still got fussy. So for now, we’re dialing back to 20 cal formula and will work our way back to the full 28 cal in the coming days.

If there’s anything we’ve learned about Ella, she’s not big on change. I think the rule is, if you can go slow, by weaning down or slow steps up, she tends to do better. This also applies to the meds she’s on. Considering that she’s doing ok at the moment, no changes are scheduled, unless her labs say otherwise. I asked Dr. Kays about weaning any meds (thinking of her hefty dose of diuretics), but he doesn’t want to change anything if it’s working (this is very understandable considering Miss Ella). I affirmed that if he’s ok with it, I am too.

At this moment, Tina is holding Ella and Shannon is singing her lullabies. Ella was a bit overtired tonight because she didn’t sleep too well today, so we’re trying to put her down for the night. We finally got her settled in bed and it looks like she’s comfortable. Her numbers look good too, especially considering where they were a 8 days ago. She’s on 500ml of O2 and she’s saturating 100% with a heart rate of 135. She’s zonked out pretty good and we expect her to sleep through the night.

Please continue to pray for our baby girl. Her fluid issue is getting better, but it’s not fully resolved, and we need wisdom in finding the right balance of meds moving forward. We also ask that she may handle the increased calories in her food in the coming days. Please also pray that Tina and I get our rest so that we can give our best to Ella. This is the first night Tina’s back in her own bed so hopefully she’ll get a solid nights sleep.

Right before we left the hospital today, a volunteer walked in and said that she had been praying for Ella. It turns out this person goes to a church that a friend of a friend goes to. It was so neat to see her look upon Ella for the first time after praying for her for so long. It turns out she didn’t even know about the blog, but had been in prayer for our girl on a continuous basis.

What an incredible blessing…to have so many come before the Throne of our Lord, to lift up Ella Renae…people we have never met. We look forward to having you all meet her in person some day. Thank you again for being such diligent prayer warriors.

Blessings to you and your families.

Philippians 4:4
Rejoice in the Lord always. I will say it again: Rejoice!

Patrick Brumfield on February 7th, 2008 at 10:27 pm #

Your little princess has such a contagious smile! Glad to hear of her progress and that you’ve taken her back home. Strength and perseverance. Our prayers are with you.

Char and Jim Jordan on February 7th, 2008 at 10:48 pm #

It is so rewarding to see that beautiful smile once again. It sure is evident when Ella is feeling better. Hope everyone gets some rest real soon and that the issues that have plagued Ella from early on will be resolved and life for real can go on. We love you. We are grateful for all those who can come and see this little princess. We hope to be able to see her in person one day. All our love, Jim and Char

Tracy Schultz on February 7th, 2008 at 10:55 pm #

It is a privilege to get to bring her before our Heavenly Father! Get some rest!

laura blackwell on February 7th, 2008 at 11:16 pm #

Beautiful pictures. Love and Prayers.

The Lizotte Family on February 8th, 2008 at 5:18 am #

Soo good to hear you are going home. I will pray for lots of rest! Big hugs to all of you!

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on February 8th, 2008 at 6:39 am #

Ella’s beautiful smile makes my day! Take care and may God Bless you all with His presence, grace , healing, peace and comfort. It is my privilege to keep Ella in prayer.

The Brittain Family on February 8th, 2008 at 9:30 am #

Hope you’re all able to get some needed rest. We’ll continue to pray for Ella and trust the weekend goes smoothly for ya.

Lisa T on February 8th, 2008 at 9:57 am #

What a beautiful grin!

The Ray on February 8th, 2008 at 11:40 am #

I don’t know how this site came up on computer but I’ve said some prayers for Ella girl and the rest of your lovely family. She so precious! Everything will be alright.

tamara tessmer on February 8th, 2008 at 11:40 am #

I am so glad you got to meet Jordan!. Dawn told me tht she was going to try to find you. Glad you are home too. Keeping all of you in my prayers. She is STILL SO STINKIN CUTE!!!!!!
Love ya,

Dawn (Tamara's Friend) on February 8th, 2008 at 12:23 pm #

Hi Josh and Tina, I am so glad Jordan found you guys. She is an amazing young woman. She is a long time friend of our family. I hope when you are overwhelmed you will remember that all over this world people are praying for each of you and I hope that brings you a measure of comfort. The body of Christ is AWESOME! Your family is so loved!
Blessings and His Peace! Dawn

Felix on February 8th, 2008 at 3:53 pm #

Totally happy for you guys. Woohoo! God is good.

Allison Kimbro on February 8th, 2008 at 6:09 pm #

THRILLED to see you guys got to go home today!!! Feel free to email me if you need anything at all!

Debbie Bennett on February 8th, 2008 at 6:25 pm #

So glad to hear your home AGAIN!!! Ella is such a little fighter. Tina, I know Motel Shands isn’t the ideal place to stay. So take a relaxing hot bath and go to bed. You deserve it. Much Love & God Bless, Debbie Bennett

Mary Brattich on February 8th, 2008 at 8:52 pm #

I follow some other CDH kids and happened on your blog. I have an 11 year old CDH son who has PH and also a very rocky start due to a large CDH. We also dealt with PH in the early years as we do now… I wanted to let you know that he could NEVER do bolus feeds – and what our pulmonologist said was it was due to the blood flow rushing to the GI tract to try to help digest the food and taking that needed circulation from the heart and lungs. We did overnight drip for years. Just to let you know that you are not alone – but if I were you, I would just go to drip feedings – I think you will see a big difference. My son is on Tracleer and Revatio for his PH and doing very well. Please feel free to contact me if you have any questions about this.

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