Yesterday night they were finally able to get Nora comfortable enough that she was able to rest her enervated little body. Now that she was peaceful, we felt comfortable leaving her in the care of her sweet nurse in order to get some sleep of our own. In the midst of our own sleep deprivation we were on the verge of mental and physical collapse. Each of us woke up every few hours and fumbled down the hallway to her quiet room dimly lit by the glow of the monitors. During my visits to Nora my bleary eyes scanned through her numbers and my worries were allayed. Soft kisses and head strokes were administered before heading back to the parent cell room.

We continue to be very concerned with Nora’s withdrawal from her post surgery medicines and sedations. It is such a delicate balance between keeping her out of any discomfort, yet keeping her awake enough that her drive to breathe doesn’t disipate. That was especially of top concern when she was making the switch to the nasal cannula. Now that she’s shown that she’s able to breathe on her own they have been able to reinstate some medications to keep her comfortable and allow her to rest. She’s essentially slept all day long, which I suppose I would be doing too if I were up for 32 hours straight. But now comes the issue of weaning her off of them. In networking with other t18 parents I’ve learned needs to be done SLOWLY.

This beautiful reminder just so “happened” to be sewn onto the “randomly assigned” hospital quilt that Nora slept on last night:

This morning during rounds we received the news that they would NOT be doing an analysis of the fluid on Nora’s lung. In order to do that they would need to reintubate her and put her under anesthesia again. Since her fever broke over night and her white blood cell count has not climbed up any more, they are not so concerned with the fluid be infectious. It would be a real shame to have such a setback with her respiratory issues only to find that it was clear fluid. The risks far outweigh the benefits. They have placed her on some more antibiotics, which may or may not have solved the problem. They will be re-evaluating things in a couple of days. We were SO SO relieved to hear that this is not as serious as initially thought.

Despite our fits of worry and anxiety, God continues to show His mercy and His love to us in so many ways ~

Overall it has been a very good day. No fevers, CO2 levels are good, Nora got lots of much needed rest, and she even POOPED today!! We have been waiting and waiting and waiting for bowel sounds, which sometimes take awhile to reappear after major surgeries. Sometimes they’d hear little gurgles and then other times nothing. I’ve never been so excited to see a poopy diaper!

Because of the delightfully uneventful day and because of the generosity of Linda M. and Paula B. who offered to stay with Nora while we were away – WE GOT TO GO TO GAVIN’S 5th GRADE PROMOTION CEREMONY!! Thank you so much, ladies!! It meant so much to Gavin to have us there!

Fuss, fuss, fuss, fuss…

SMILE!!!!

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.”
(Lamentations 3:22-24 NIV)