Posted (Tina) in All Posts on May-14-2008

Nurse Michelle came by for a visit this morning. It was nice to see her and it will be one of the last times before going back to Colorado.

Also, we received confirmation today that Nurse Janet will be visiting Colorado this summer. We are so excited! It will be nice to see a familiar Gainesville face after being home for a bit.

Ella had a good OT session today. The therapist suggested a different strategy with the bottle, using more negative traction, to help Ella’s suction technique yield more formula. It should help her get more formula with each swallow.

The feeding has been tough on Ella since her recent congestion that worsened. She has been taking 20-55ccs each bottle, depending on the time of day, her mood and congestion status. Many native Floridians tell me that it is likely allergies. I’m sure hoping that it decreases when we go home to Colorado. It just makes it tougher to breathe and that makes bottle feeding even more challenging for her.

We have our last appointment with Dr. Kathy Sarantos tomorrow. We are really going to miss her too. She has been an excellent pediatrician and a voice of reason for a new mom like me. And of course, I always felt that she could relate because she also has a daughter with a diaphragmatic hernia.

Only 10 days till Josh leaves and 17 days until we walk in the front door of our Colorado home.

Some of you may recognize the picture of Ella shown above from September 30, 2007.

I’m not sure if some of you noticed that another mom posted about her preemie son that has chylothorax. She searched the internet and found our story. In a nutshell, she has transferred her son to Dr. Kays at Shands. So even though he does not have CDH, she was looking for someone that wanted to help save her son.

I think that is one of the best things about Dr. Kays. He gives parents hope. Even though he is not ultimately in control of the outcome, I do believe that God uses His talents every day to save children. I sympathize with this mom and am glad that she has found Dr. Kays, so she too can give her son the best chance at life.

This reminded me of a set of scriptures that resonated with me, in the midst of our journey:

Romans 4:18-24
Even when there was no reason for hope, Abraham kept hoping—believing that he would become the father of many nations. For God had said to him, “That’s how many descendants you will have!” And Abraham’s faith did not weaken, even though, at about 100 years of age, he figured his body was as good as dead—and so was Sarah’s womb.

Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.

We’re so thankful for Ella Renae and for the hope and peace that He continues to give us on this journey.

Joel Snyder on May 14th, 2008 at 10:04 pm #

Ella, Good to hear that you got a chance to see Michelle and visit with her before you come home. I am always amazed at the progress that you have made and the picture of you from Sept. reminds me that we are really blessed to have you doing so well. I am saying special prayers for your progress with the bottle feeding. You look so great with your Dad. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!!!

Lisa T on May 14th, 2008 at 10:14 pm #

Does she ever stop smiling??? 🙂

I’m sorry to hear that Ella is still finding the feeding process to be a challenge. Hopefully it is just all the pollen and so forth down in the southeast and the transition to Colorado will assist in that. She looks so vibrant and happy; it’s truly incredible when you think about how much that little body/mind/heart has endured.

Adrienne (Melissa's sister) on May 14th, 2008 at 10:40 pm #

Wow… what a journey you’ve been on! How thrilling your homecoming will be! We will be praying you into Denver!

Laura Marold on May 15th, 2008 at 7:29 am #

Great news from yesterday visit. I’m so glad to hear that Ella’s lungs are improving and that she is gaining weight. How fantastic her journey has been(so far). The last picture on the blog today is the absolute cutest ever. Love, Laura M.

Matt, Abby, Austin & Caed on May 15th, 2008 at 10:40 am #

Yep, there’s nothing like allergy season in the South. I hope she feels better soon. If you don’t already have one, get a hepa-filter for your air handler (for the supply-side. it’ll go in the unit itself) and one for your return air grill (if it has that option). To check if you have a filter on your return just look up into the return grill and if you have one you’ll be able to see it.

the Lizotte family on May 15th, 2008 at 12:43 pm #

You guys are doing super great! And yah.. everyone here in Tampa is congested and scratchy all over.

Tracy Schultz on May 15th, 2008 at 1:21 pm #

She’s come so far! Our whole family loves to keep up with you all. Wishing you all the best as you prepare to go back home!
The Schultz family

Lisa Arndorw on May 16th, 2008 at 1:43 am #

I am writing you from Sweden, I came across your blog searching for information about CDH.
My Niece was born in Stockholm December 2007 with CDH, She had her surgery on ECMO and came off after 3 days, she was also diagnosed with chylothorax and because of this she is still in the hospital 5 months old and she still doesn’t have a date to go home. I want to thank you for your blog on your beautiful little fighter, it gives hope that my niece one day will come home.
Thank You!

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