Our Second Week at Riley

My parents had to drive back home on Sunday. My mom had to work the following day and there was no way she was able to get out of work. This was particularly hard on her because everyone else was going to be able to come back on Tuesday for Holden's surgery and I know there is no place she would have rather been than down here with us.

On Monday, the ophthalmologist came and checked Holden's eyes. To do this, they put some type of tool on his eyes that props his eyelids open. All while he's laying there screaming. Thankfully he passed this exam and his eyes are fine. Aurora was able to spend some more time at the Child Life Zone, so she was a happy camper. And my dad and grandma were able to come back down for Holden's surgery.

Tuesday was the big day. Surgery day. We left our room around 7 am to get Holden down to the OR by 7:45. We all waited impatiently in the lobby. After about an hour, Jose and I were called back to meet with the ENT doctor who was supposed to do a supraglottoplasty to shave back a "little flappy thing" in Holden's throat that was possibly causing issues with his breathing and swallowing. He wasn't able to do it, due to Holden's airway being too small, but he said if the procedure was still needed after the mandibular advancement surgery, it could be done at a later date. After we finished talking with him, we went back to the lobby. Around 10:30, we were called back to meet with the plastic surgeon who'd performed his mandibular advancement surgery and he told us everything went great. He said Holden was in recovery and told us what room they'd be taking him up to in the PICU. Once we got up to his room, I walked in and saw his sweet little body lying in a tiny baby crib with all sorts of tubes and cords attached to him. He was intubated so, even though he was breathing, he wasn't moving at all. Seeing him that way was one of the worst parts of our stay at Riley and will be engraved in my mind forever but, at the same time, I was so relieved that his surgery was finally over with.

Moving down to the PICU was a bit of an adjustment for us. We were in a smaller room, for one. Our first room was huge and had a separate little area where I could pump and we had an air mattress set up for when Aurora stayed with us. The bathroom in the PICU room was quite a bit smaller as well. Also, Aurora wasn't allowed to stay in this room. She had to be out be 9 pm each night. Luckily, we got a room at the Ronald McDonald house the week before, so Jose's mom and sister would take Aurora and stay there.

Since we knew Holden would be intubated for a few days following his surgery, Jose and I each planned to spend a day alone with Aurora doing something fun. On Wednesday, Jose took Aurora to see Wonder Woman and then they went and walked around the mall.

On Thursday, Aurora and I were up bright and early and headed to the Indianapolis Zoo, which is about 5 minutes from Riley. She was super excited to go because we'd been researching the animals they have there the day before and found out they have a walrus named Aurora. Unfortunately, Aurora (the walrus) is shy, so we only got to see her from the back. But there was another really friendly walrus that we got to see up close. This actually turned out to be one of my favorite zoos!

After the zoo, we went back to the hospital to get some food. One of the ladies that was cleaning our room told us the day before that Thursdays were Food Truck Thursdays, so we headed down to check it out. We got some yummy loaded bistro fries and the most delicious strawberry shortcake I've ever had! I've been craving one ever since.

After we ate, Aurora and I headed to the mall to do some Father's Day/BFF birthday shopping. It was such a fun day and I loved spending the day with my sweet girl. We were both glad to get back to Jose and Holden. Holden was finally opening his eyes! It was few and far between at this point, but it was one step closer to him being awake.

Friday morning, all our dreams came true and we got to hold our little guy. After his surgery, I wanted nothing more than to scoop him up and hug him. Not being able to do that for three straight days really sucked. To hold him, two nurses had to come in and move him into our arms, making sure none of his cords came undone. It was a pain, but it was SO worth it!

Friday afternoon we were moved to the NICU, as they needed our room in the PICU and Holden's condition was stable. In the PICU, they mentioned that Holden would likely be extubated on Saturday morning. They initially said Friday afternoon was a possibility, but they wanted to wait until Saturday morning to be safe. So we were surprised when, after just a few hours in the NICU, they decided to extubate him. While I was so excited, I was also pretty nervous that they wanted to do it so soon. From a respiratory standpoint all of his numbers looked great, so they went ahead with it. Unfortunately, Holden failed his first extubation. After about 20 minutes, they decided he wasn't breathing well on his own and they reintubated him. They sent us out into the family lounge while they put his breathing tube back in. Of course I did the one thing you should never do in this situation and I Googled how long you have to wait to extubate after a failed extubation and one of the first things I read was something about failed extubations being associated with a high mortality rate. I was so sick to my stomach and of course I started balling. After what seemed like forever, the doctor came out and said that Holden had been reintubated and discussed the possibility of using a steroid for the next extubation. He said that Holden's airway, while getting bigger with his jaw extractions, was still pretty small and that's likely why he still wasn't able to breathe well on his own.

Saturday marked one month since this sweet boy came into our lives! While it's been a crazy month, our lives are so much better with him in it and I'm so thankful God gave him to us.