Yesterday was a rough day. So rough in fact, that I couldn't even blog about it until today. I wasn't sure how to describe it, or if I even wanted to. But then I realized that I can't just post the happy days. If you're reading this, you care about Matt, me and Annelise and you want to know about this journey....good and bad. Yesterday was a rough day.
Matt and I got into CHOP about 2pm due to more appointments in the morning. Annelise had a nurse who we'd never had before. When we got there, she was laying flat on her back, was paler then I had ever seen her, and seemed to be fighting for her life. Every breath seemed forced. When I went to put my finger in her hand and pick it up, her hand fell lifeless to the bed. When the respiratory therapist did a heel stick to draw blood, Annelise grimaced slightly and then no reaction. Heel sticks hurt!
So of course I got emotional and so did Matt. We told the nurse that this was unusual behavior for Annelise and we wanted to speak with the Nurse Practitioner. She called the NP on call and within 20 minutes the NP, surgical fellow, and the neonatologist were bedside. We explained our concerns and after discussing it, they agreed to re-position Annelise so her chest tube could possibly drain better, do an ultrasound and another x-ray. (They had done 2 x-rays already that day). The team left and the nurse re-positioned Annelise. Immediately about 5 ml of fluid and a few pockets of air drained out of the chest tube....and Annelise pinked up!
Within 15 minutes, Annelise was a different baby. She was back to her old self.....looked pink and healthy, trying with all of her might to open her eyes, gripping her little hand around Daddy's big finger, sticking that cute little tongue out. She had her eyes open for about 45 minutes right around dinner time. That was the longest period of awake activity we'd ever had with her, so of course I broke out the toys and books! Matt and I played with the ring toy to get her to follow it with her eyes. I read her a book, "Mommy's Little Girl", where I changed the little girl's name to Annelise. She loved it.
Today was more of the happy and seemingly healthy Annelise that we had yesterday afternoon. She had her eyes open and was awake for most of the time we wer there. It was REALLY cute how she fought to stay awake, even when her eyes didn't want to stay open. It was like she was afraid we'd leave if she fell asleep! Her chest tube came out last night.....YAY! This morning during rounds, the team decided to take her Salem Sump out (the tube in her mouth that was draining her stomach). The feeding tube should be going in shortly now that the Sump is out. We left her in good hands this afternoon - Aunt Denise (Kadunc) was there and Mom Mom was on her way.
Regardless of the great ending yesterday, it started out so poorly that we were left emotionally spent and a little rattled. Annelise has quickly become our world. When she's not doing well, it affects my entire being. This is so much harder then I ever imagined it would be.
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