Nine weeks 3 days

It's been a rough few days. Since Evan is in this room, I think my emotions have finally caught up to me. It's also so hard to see Evan intubated when he just came off all respiratory support. 

Evan's eyes were less puffy and he was awake while we were with him today. (We spent about 12 hours at the hospital). It was so great to see his face again. The day before, they had a cloth over his eyes to protect them. The doctors are still dilating his eyes as part of the recovery process so the room remains dark unless the nurse is checking vitals.

Evan was finally extubated around 12:30 pm. He was extubated to the high flow cannula. Andrew noticed that while Evan's stats were perfect, he was very wheezy and couldn't get a good breath. After listening to his lungs, his nurse realized he needed some medication to help open the air ways. They gave him a dose of racemic epinephrine. His nurse also gave him some good chest PT (it looks like a rubber hammer head that is pounded on the chest). Through all this, Evan was very upset and trying to cry. Since he was intubated, his throat was raw and inflamed so he was very hoarse. The doctors said that he had tracheal stridor. This was most likely caused by the back to back intubations. They also gave him a dose of dexamethasone (steroid) to help with the inflammation in his trachea. It was also decided that while Evan was getting good breaths in, he wasn't pushing the air out. He was moved to the NIV ventilator. This ventilator delivers pressure to the lungs, but through the nose. This is the ventilator that makes him sound like a whale surfacing. Just as he was finally settling down, the eye doctor showed up to check on the surgery. Thankfully, Evan did great for the check up. While it's too early to see if the surgery worked, the doctor was very pleased with how his eyes looked. Evan has a repeat exam on Monday to further check on the progress.

Evan was finally started back on feeds. He was started at half feeds of 17 mL. 

Since we're in this isolation room, it really highlights how lonely it is as a NICU parent. For some reason, it really hit me this week. I think Andrew and I are really looking forward to bringing Evan home. I know that we will still have challenges, but we're just ready to have our little boy home with us. After such an amazing Monday with Evan on no respiratory support, the last few days have felt like such a gigantic step backwards. At rounds on Sunday, the doctor (not Evan's current doctor, but one that was covering for the weekend) said that we could get the ball rolling for discharge. Even though I wasn't getting my hopes up, it was still hard to then see Evan two days later intubated, silent and not moving.

Now that Evan is extubated, I feel like we're back on track. I know he still needs to come off the NIV and work back up to full feeds, but at least he's not intubated. I know I'll feel better once we're snuggling again too.

Snuggling with my friends after an exhausting extubation.