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.