Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Sunday, February 22, 2009

The Guard Has Changed

Jason is back home with the kids and I am back at the hospital with Bella.

Her respiration rate is in the 80s or 90s and she keeps dipping into the 70s for oxygen saturation. She looks worn out. She is paler than when I was here on Friday. She continues to be NPO for the night.

She will be receiving more edecrin at 9PM to hopefully pull more fluid off of her lungs.

The cardiologist just left (9PM). He came to make sure he had the whole picture of Arabella because he will be presenting to the surgeons tomorrow morning. We reviewed her NICU stay at Saddleback, her time at home, and then her time here. I was able to get some questions answered. I have been puzzled because her anatomy and her current medical condition don't match. She is behaving like she has a massive VSD, when in fact she actually has quite a small VSD. I was able to show him my drawings of the heart and he showed me how her heart is actually formed - where each of her holes are. People keep telling me she is a mystery. We talked about her PVR and her PHT. We talked about how difficult her recovery is actually going to be. It's very scary. He is pretty sure that she is aspirating. He thinks that is the choking that I keep asking people about and no one can give me an answer for. He said that the ENT felt that she was aspirating - funny how the ENT didn't mention that to me. He is concerned about her feedings. They may stop all feedings by mouth and just do continuous feedings through the NG tube, rather than the bolus every three hours - less likely to aspirate that way. He feels these periodic drops in O2 saturation when she is just laying there asleep are aspirations.

They are very concerned about taking her to the OR. Her recovery is going to be so rocky, they don't want her dealing with anything else at the moment. On the other hand, they don't want to wait so long that the PVR becomes permanent. He said with where she is medically, he doesn't think they'll send her home before the surgery. A team of people - cardiologists, surgeons, nurses, anesthesiologists - a large group will be meeting tomorrow to decide when is the best time to operate on Arabella. I told him it sounded worse than rounds. He smiled and said, yes, a lot worse. He said it's pretty intense. Today my family and I fasted for sweet baby Arabella. I was praying for Arabella, but also for the surgeons that they would know when the right time for surgery would be for her. She has one good day, then she dips again. We play musical floors. I want what's best for her. I worry about delaying things too long. She seems so weak and fighting so hard. I pray they will make the best decision possible for our sweet girl.

A nurse just came in and Bella gets no food at 9PM - she is breathing too fast and they are afraid of aspiration. I hope she can sleep through it. :)

3 comments:

Mia hat eins mehr! said...

I'll keep you in my prayers that all decisions will be made right for little Bella and you.

Just an idea, how is she laying in bed? Mia had those saturation drops while sleeping and we put a pillow underneath the mattress where her head was, so she could better breathe. It helped for a while.- I hope you know what I mean. Ah, I am so sorry for you and this little sweety, why does one have to go through all of this. *sigh*

All the best for you from here,
Claudia

Kristin said...

Hi Shelly,
I was just at TC last night as little 3 yr. old Ember of our ward is on the 11th floor. This morning I was thinking of you again and I finally figured out how to access your blog (with a little help from google). I should've found your blog sooner so we could've come by last night to see you and Bella, as well! My thoughts and prayers have been with you, your family, and especially Bella these last few weeks. God bless you and sweet Bella.
Love,
Kristin

Kathie said...

Shelly, I hope that the news today is positive and that they feel she is strong enough to have surgery soon. I love ya, Kathie