Posted (Tina) in All Posts on November-14-2007

Ella had a great day.

About 1pm, they stopped her continuous feedings to get her prepared for the upper GI. This left her stomach empty and ready for the test. From what we understand, they took her off CPAP and placed her on the nose cannulas temporarily for the transport down to radiology. When they conduct the test, they place a contrast dye through the feeding tube into her stomach and watch the fluid make its way through her system. From there, they can detect if she has reflux as well as the severity of the condition.

Nurse Marla took her down for the procedure and said that Ella remained calm and her stats maintained throughout the procedure. This is positive because it means that she did not require any sedation. We should hear the results tomorrow or Friday at the latest. Again, we are really hoping that her reflux is mild.

The physical therapist came by and did some hands on work with Ella this morning. We were told that Ella really enjoyed the time. By the end of the session, she was on her belly and was so relaxed that she fell asleep right afterwards. One of the biggest challenges is that her muscles are so stiff and so tense because she has not had the opportunity for movement. The physical therapist helps her to gain strength and flexibility in her muscles and noted that when Ella gets relaxed enough to fall asleep at the end of her session, it is a really good sign. It means that after a few times, her body will “memorize” the experience, making it easier for her to learn to relax the muscles more often. The PT is planning to come by and work with Ella 3x per week.

Another positive step forward today: every 6 hours, they are going to switch her between the CPAP and a nose cannula with oxygen support (they call this “sprinting”). If you remember last time, they went ahead and took her off CPAP completely and her lungs were not strong enough. Although they don’t do this often, they are going to try this on/off procedure as long as she can maintain her stats. By switching back and forth, they hope to slowly wean her towards only using the nose cannulas with oxygen support.

This is a welcome change – – it makes us feel like she has a goal and we are making forward progress.

Josh and I feel like we might have the beginning stages of the common cold (like maybe our bodies are trying to fight off a cold; we don’t feel 100%). We asked the NICU staff and they recommended to wear masks tonight when visiting Ella. One of the nurses joked that it looks like we are getting ready to do surgery. And a respiratory therapist let us know that Halloween has already come and gone. It is telling that the staff feels the liberty to tease us!

Nurse Jessica is watching Ella tonight…this is the nurse that loves to bathe and massage Ella. As we said before, this usually means lots of grins from our baby girl.

Par seems to be doing really well in his recovery. We heard that Jonathan has not had his repair surgery yet, but that he had to be switched to VA ECMO today. This is the same type of ECMO that Ella was on (the most risky; they permanently tie off the carotid artery). Apparently before, he was on VV ECMO, which is less risky but does not provide quite as much support. We are still praying for Par and Jonathan to continue with their forward progress.

Right now, we are sitting bedside and Ella is sleeping. Her stats look good and she seems really comfortable. A little while ago, it was time for the CPAP to go back in, so Nurse Jessica slipped the CPAP back on. Ella barely opened her eyes and then fell back asleep.

I think that the new spot in the NICU is definitely giving her more interaction. More people stop by and talk to her and she loves it. Along with all the activity comes a whole new level of exhaustion: the past 2 nights she has been so tired and in such a deep sleep!

I am going out of town on a business trip tomorrow. It will be the first 24 hour period without seeing my baby girl. At least I will get to see her virtually along with the rest of you. And although I will be back on Friday evening, it will be hard for me to be away from Daddy and Ella bun.

Since we want to try and get our rest, we are going to let her continue to sleep and hope that we can see her cute smile tomorrow.

Thanks again for the support and prayers from all of you.

Roberts Family on November 14th, 2007 at 9:34 pm #

Sprint, Ella, sprint!! Lots of good news, praise the Lord!! Tina, I hope your time away from Ella goes quickly. You are in my prayers daily.

Joel Snyder on November 14th, 2007 at 10:10 pm #

Ella, I am so pleased to hear that you are having a good day and continued forward progress. I will be praying for good results from your tests. I will also be praying for Par and Jonathan tonight. I am looking forward to seeing your Mom tommorrow. Try to keep your Dad in line while she is in Denver. Love, Grandpa!!!!!

Kelli Billman on November 14th, 2007 at 10:23 pm #

Welcome back to Denver if only for a short time. It won’t be long before you’re back here with the entire family and Ella will get to experience her first Colorado snow! Have a safe trip and take care of your colds.
God Bless.

Char Snyder Jordan on November 14th, 2007 at 11:25 pm #

Go Ella, Go Ella, Sprinting is good practice for when we get in the pool. We can have such fun. We love you!
Aunt Char and Jim

The Brittain Family on November 15th, 2007 at 6:46 am #

This is great progress! We’re very excited. Almost 6-year-old Jesse (who along with his sister suffered through severe reflux throughout infancy) commented to me yesterday after seeing Ella’s bath picture, “She’s really looking great, Mom, she got rid of her breathing tube!” All in good time, son, but truly it’s good to know she’s not depending upon it exclusively and we’re thrilled that everyone at Shands just gives her the time SHE needs to get stronger. We’re looking ahead to more of these milestones, but for now, Thanksgiving came a week early!

Joan and Steve Odell on November 15th, 2007 at 7:21 am #

She is adorable and the two of you are so cute in your masks. Massages are good and the PT is awesome – thank heaven for all the processes the medical profession has at their disposal! Tina have a safe trip to and from – Josh and Ella will be waiting for you on return. Prayers and hugs to each of of you – Lord Bless – Steve and Joan

Loren L on November 15th, 2007 at 7:37 am #

Lets get Physical!!! Go Ella Go Ella. She is adorable and you can tell that she had a good work out. I love it. It’s so nice to see her making progresss, she is such a hard worker.
Take care LL

Kristen on November 15th, 2007 at 7:39 am #

Ella, soak in all the attention. We are filled with hope from the Lord that you will continue to get stronger day by day. Very proud of you! xoxox

Lisa Correia on November 15th, 2007 at 9:19 am #

Hey Guys,
She is just adorable!!!! I love the sleeping picture…she looks angelic!! You better watch out Josh, I can already see the boys hanging around wanting to take Ella out. Better start cleaning the shot gun!!
Have a safe trip Tina and enjoy holding down the fort Josh!! We can’t wait until you guys are home!!

Melissa's Sister on November 15th, 2007 at 2:35 pm #

Thanks so much for continuing to keep us all in the loop. I know it’s a lot, but we all appreciate it. It helps us know how to continue praying for you through this. Ella’s journey is growing us up in different ways too – ways that some of us might never quite grasp. It’s amazing how the Lord uses each and every little detail in our lives to bring about His glory ultimately.

We continue to lift up Ella and both of you as well – knowing that she is in the palm of his hand along with her Mommy & Daddy.

Josh on November 15th, 2007 at 5:18 pm #

Massage therapy, open oxygen bar, breakfast in bed…you’re setting a pretty high standard for her future relationships…

Your Ella puts the “pretty” in “pretty cool.” We love you all very much and are excited for Ella’s opportunity to go out for track.

Tracy on November 15th, 2007 at 8:59 pm #

Oh, she does seem very restful. It great to thank God along with you guys!
Tracy in Atlanta

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