Posted (Tina) in All Posts on September-30-2008

Ella had another rough night.

This time, it seems like the continuous feed was not really the issue. She needed to be vented a few times, but otherwise tolerated the Alimentum 20 calorie formula. But at 3:30am, she became fussy and not consolable. This lasted until this morning. Finally, at 9am when the java hit my bloodstream, I was happy that another day had arrived.

During rounds, we discussed the Care Conference. It is scheduled for tomorrow at 2pm. This is where the head doctors from different specialties come together for a meeting to discuss the milestones for the patient. Right now, we feel this is necessary to determine the common, long term care goals for Ella.

Also, we will be openly discussing the proposition from Dr. Fagan to undergo another heart catheter procedure and try to stint open Ella’s superior vena cava. Although there are no guarantees that he will be successful and we do not know of the outcome for her, there is also a chance that it could be a really good thing to help with her overall fluid and pressures related to her heart and lungs. If we’re lucky, it could also help with her body’s ability to absorb/regulate fluid and minimize the back up into her lungs.

Ella is now up to her full dosage of Aldactazide. She did urinate more today which is a good sign. Her face still looks a tad puffy and she is still battling upper airway congestion. Tomorrow morning, she has labs scheduled at 8am. They will take a BMP and also test her thyroid and adrenal gland levels. They want to rule out any hormonal differences playing into her high heart rate.

Speaking of a beating heart, it seemed like it was getting a tad lower this evening. We will have to watch it throughout tonight and tomorrow morning. It might be the increased dosage of sildenafil helping out. In the past, the sildenafil definitely helped bring down her heart rate. We’ll just have to see.

Yes, I know the title of the post is strange, but we are walking on not-so-thin ice these days, relatively speaking.

One year ago today, Ella was at the height of her chylothorax in the NICU on the 69th day of her life. She was dancing on the edge. We named the title of our post “Thin Ice”.

And although we are sitting in the hospital one year later, Ella is in a totally different place. We are still dealing with “fluid” issues and her overall health. But look at a glance of today versus just one year ago.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

God is so good and has blessed us tremendously with Ella Renae. Yes, it is tough. It wears on us, some days more than others. But his Word tells us to consider it a gift when we are challenged.

Lord, as we head into another day at the hospital, we seek you and praise you for another day with Ella. We ask for your will to be done in our lives. We thank you for all the blessings you have bestowed upon us. Give all the doctors wisdom to make the right decisions for Ella’s long term care. Help us to discern which decisions for Ella are in your plan. We thank you for how far you have brought Ella and for the work you continue to do with her life. In Jesus’ Name, Amen.

Lisa Tufano on September 30th, 2008 at 8:54 pm #

Keep on keepin’ on, Ella! You have come so far!

Chambers Family on September 30th, 2008 at 9:25 pm #

You need bows!!!! So precious. I hope sleep finds you both tonight!

Kelly the Nanny on September 30th, 2008 at 10:24 pm #

Aww I still love her little pony tail.

I sure missed the Bun today–can’t wait to see her and mommy tomorrow!

Zechariah came to mind when reading about the comparison between today and day 69. When we view life through perspective’s lenses, we have the capacity to see things in their true relation and their relative importance. It’s the big picture–although the demands of life (hospital or otherwise) are a bit disheartening: meds, feedings, meetings, late nights, early mornings, moving houses, etc…, that perspective gives a breath of fresh air to the otherwise suffocating demands of life.

Zechariah 4:10 says “Who despises the day of small thigns? Men will rejoice when they see the plumb line in the hand of Zerubbabel.”

Sleep tight Bun, and I hope mom can get some good rest tonight *crosses fingers*

Joel Snyder on October 1st, 2008 at 12:40 am #

Ella, I just love the pony tails and you are just to cute. I am praying that tomorrow will be a good day and that the conference with the doctors and nurses is positive for you. I do think you are starting to make steps forward and hope that continues. I will see you tomorrow. Have a good nights sleep. Love,Grandpa!!!!!!!!!!!!!

The Brittain Family on October 1st, 2008 at 4:34 am #

pure joy. praising God with you for another day…365 days later : )

Debbie Bennett on October 1st, 2008 at 6:06 am #

too precious!

Lisa Richmond on October 1st, 2008 at 8:44 am #

Thoughts and prayers…and some wishes for some much needed rest for both you, Tina and little Ella…You must be exhausted!

I can’t believe how good she looks compared to one year ago…though not nearly out of the woods…She is able to put a smile on your face every dayand for that…we rejoice!

The Lee Family on October 1st, 2008 at 9:48 am #

What a difference a year makes. I can’t wait to see her running around chasing the kitty cats next year! We are praying for you everyday!

Dawn on October 1st, 2008 at 12:36 pm #

I’m sorry you guys had such a rough night. Hopefully she will do better this afternoon and this evening so you can get some rest too. I can’t believe how far she’s come. Also, I’m loving the hair : )
Lots of love,

Jim and Char Jordan on October 1st, 2008 at 12:55 pm #

Bless all the people caring for Ella.
We are continually blessed with so very much. It is so great to make a reference to last year this time to see just how great the strides for Ella and her parents have been made. Thank you for all the opportunities to see her and share in this sacred experience.

Tammy on October 1st, 2008 at 8:24 pm #

Precious baby! You are a gift with so much to give……..thank you!


kristin on October 1st, 2008 at 8:38 pm #

Ella you look beautiful!! Amazing to see how much you have grown over the last year. We continue to pray for all of you. May you all get sweet sound sleep tonight. I pray that the conference goes well and that it brings clarity for the next step.

Love you all,


Laura Marold on October 2nd, 2008 at 9:40 pm #

Looking at the picture from a years ago made me realize what a long way Ella has come. I know there is a long way to go, and I’m praying for you guys and for Ella. Love, Laura M.

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