Our Third Week at Riley

Sunday was Father's Day, so we spent the day celebrating Jose. Because, well, if there's anyone that deserved it, it's him. We also got to hold our little guy again!

The above is a picture of one of the distractors Holden had put in on both sides of his jaw. Three times a day, someone came in to turn them. To do this, they took a little screwdriver and attached it to the end of the distractor and turned it for two full turns for the first week, and then one full turn the second week. The whole process honestly sounds so awful to me, which is why I had such a hard time when we first met with the doctors and they'd tell us what would be done. But I have to say, his breathing has improved so much, he can finally lay on his back, and we're actually able to see his little tongue now. If you look at pictures of him from before his surgery and compare them to this, you can see how much his jaw has come forward. By the end of his turning, his jaw will actually be over-corrected a bit, but he'll have grown into it around his first year.

Not much happened on Monday during the day, but I did put together these two picture collages to show how insanely identical Holden looks to Aurora, when she was a baby! Yeah, I know... they both look exactly like Jose. Monday evening, Jose's mom and sis stayed with Holden while Jose and I took Aurora downtown for some dinner and a little visit to the mall.

Tuesday was bittersweet. Holden was supposed to be extubated in the afternoon. So when the doctors mentioned possibly doing it around mid-morning, we were so excited. We just couldn't wait to hold our little guy without a bunch of tubes attached to him. However, when extubation time came, the RT (Respiration Therapist) was a little concerned about his leak percentage (the amount of leakage in his airway, around his breathing tube). He said it should've been higher (over 20%), as the lower percentage (around 10%, on average) indicates a smaller airway. Apparently the size of breathing tube he had in is what they normally use on premies, so the fact that his leakage was so low, even with a smaller tube, was a concern. They said all of his other numbers looked great and his lungs were perfect, so the airway was the only issue. Unfortunately, they couldn't really tell how wide it was without going in and removing the tube. And, knowing in advance that his airway might pose a problem, they wanted to do it in the OR rather than in our room since the OR is better equipped in case they have to take another route. And an ENT (Ear, Nose, and Throat doctor) would be doing it rather than the RT. The ENT that would be doing it is the same ENT who tried to do his supraglottoplasty during his surgery, so he was already familiar with what his airway looked like. So they put off his extubation until Wednesday. While I was super sad we didn't get to hold him tubeless on Tuesday night, I was happy to take the cautionary route to get things done for him. Knowing that the RT had reservations about doing his extubation while they were still discussing doing it, I was definitely relieved when they suggested putting it off for an ENT to do in the OR.

 We did get to give him a lollipop (sponge dipped in breastmilk), though!

Poor little guy had to have another IV put in, since the ones he had from his surgery went bad. This one was for his steroid for his extubation.

Alas, Wednesday came and Holden was finally going to be extubated! We took him down to the OR just before 9 am and came back up and waited. They said it would probably take an hour, as they wanted to observe him for a little bit. We were pretty surprised when they brought him up 30 minutes later. They said he did great! However, after about five minutes of being up in our room, he started making a heavier breathing noise that they said he wasn't making down in the OR, so they were a little concerned. The doctors stayed around for a bit longer to observe him more, but he ended up doing just fine!

 Getting ready to leave for his extubation!

...In transport to the OR.

Back from extubation! Doctor's checking him out to make sure he's breathing okay.

One tube down, two to go! (Oxygen and feeding)

I'm tired as hell in this pic, but... my baby's off his breathing tube!!!

The rest of the week was pretty relaxing, for the most part. They wanted to keep an eye on his breathing, he still had about a week to go with turning his distractors (Although, the plastics team said if the feeding team discharged him, we could finish turning his distractors at home.), and they wanted to see what could be done in terms of getting him off his feeding tube. On Friday afternoon, they watched him eat 20 MLs and he sucked it down within a minute. So the plan, at this point, was to follow up after the weekend and see how he handled drinking 10 MLs by bottle at each feeding, with the rest given by feeding tube. Seeing how quickly he drank the 20 MLs, we were pretty hopeful. 

On Saturday, Jose's mom and sister stayed with Holden while Jose and I went out for a bit to one of the malls. Also, my mom, dad, brother and grandma came back down for a bit as well.

Here's some more pictures of us getting our fill of Holden snuggles. :) :) :)

When my parents came down, they had a gift for us from our amazing neighbors, who were already taking good care of our pup back home - a bunch of our favorite treats and an awesome t-shirt for me that is sooo fitting right now! (I'll share a pic once I actually get dressed and have my hair done in the same day.)