Day 27

Well, the fever is back. It was around 102 this morning and Hailey was really uncomfortable. They were still able to wean her respiratory rate a little bit today. She is at 21 and they want her at 10. 

On a positive note they weaned her off the sedation too and I saw the real Hailey! She was awake and responding to me! It was so good to see her! She was trying to pull the tubes out of everywhere, no surprises there as we know from our NG tube experience, but she was AWAKE!!!! Hip hip hooray! 

The only down side is that she keeps gagging on the tube and throwing up because now she is more awake and aware of the breathing tube, the NG tube (to drain her tummy of air and excess acid), and the NJ tube (same as NG just goes past the stomach almost into the intestine) running down her throat. Ugh! I would gag and try to yank things out too! 

I held her twice today. Earlier in the day for about two hours, then later for about 1 1/2. The first time she snuggled right into me and managed to get her little thumb in her mouth with the tube. Normally I don't love thumbsucking, but under the circumstances it was adorable and it calmed her down. Plus, the binkie doesn't fit in her mouth with the tube so she doesn't have that to soothe her.  I held her hand so she wouldn't pull her breathing tube out and she slept for about an hour. Then she got really uncomfortable. I kept trying to get her more comfortable but finally decided her fever was making her too warm. So we put her back in her bed. 

The other great news is that my mom came!!! She made it here despite the crazy weather, which actually hasn't been too crazy here luckily.  I am so glad to have her! It was so sweet of her to come.

On a more somber note, the baby girl that has been next to Hailey in the pod passed away from complications of her condition, one called heterotaxy, which involves defects of the heart and other organs. It was heartbreaking! She has been failing for days. She was only 8 weeks old. I can never see a mom lose her baby without feeling it deeply because in my mind I have had to go there over and over as we have faced various parts if this trial. I don't know how  it feels but my heart has felt the fears and hopes these parents faced as they gave her the best chance they could. I guess that always makes it hit close to home.

Well, that's about it for today. More to come tomorrow.  Love you all! Thank you for your comments, service, and prayers!