Reed All About It!

Thanksgiving Day to New Years Eve

          The first time I left Bricen after we got out of the hospital was to get a haircut and color. It had been so long since I had even drove myself. I was just enjoying the Christmas decor and being out and about. (I did try a new hair salon here in Franklin instead of my normal one in Greenwood/Indy because it was literally five minutes from the house.) I left the house saying I was getting rid of the highlights that had grown out and going to get the hair colored all the same color as my roots. I'm not sure what happened once I sat in the chair but I came back with dark hair. The hubs was very surprised but I liked it.

          December 22 we took Bricen to the Dr. He always sounds congested because of his spitting up, reflux and (what we now know) laryngomalacia and pharyngomalacia. So when he started getting congested I figured it was his same ol' same. Eventually it became apparent that it was actual nasal congestion instead of his norm. We had a repeat sleep study December 21 and seen pulmonology afterwards. That sleep study was H O R R I B L E. I almost cancelled it and looking back I should have. Hopefully it was just because he felt so bad and we never have a bad one like that again but he pretty much screamed the entire three hours. This may sound stupid but I think it was almost traumatic for both of us. But the staff that day was great.

         Day after the sleep study and appointment with pulmonology (Dec 22) I felt like Bricen's retraction were a little worse than his baseline. Pulmonology had already warned that he might need some breathing treatments to just help him get past the "cold" and not to consider it a set back. So off to his pediatrician we went. He sent us on to Riley ER. I felt like this was stupid. His retractions weren't that much worse. And I thought he was probably just being very cautious and we'd end up going back home that night. Wrong.

          They swarmed this baby like AICU staff swarms a code blue. Of course this made him scream and of course his retractions looked horrible by then. Bricen also has what's called a pectus excavatum which makes the retractions look worse. It pretty much looked like his chest was sinking in so far when he was breathing that the front was touching the back. I kept saying Ok, but you should know he has retractions on a regular bases. Although I didn't see it myself I guess one nurse had quite the attitude about this. I hope she stubbed her toe on the way to bed that night. They agreed to let me hold him and get him settled down. We started the vapotherm and they decided we would wait and watch instead of intubating. We were so close to being intubated again! I so did not want to be at Riley again. It was three days away from Christmas. I did not want to eat McDonald's three meals a day, did not want to go back to living like we did for five weeks in the beginning. In the end we were admitted to the pediatric ICU and it was right where we needed to be.
          They took out the NG to help with his breathing and of course kept him NPO in case we were going to have to intubate. I thought for sure this kid was gonna be screaming bloody murder because he'd be so hungry. Poor little guy slept and slept and slept. He was just sick. He was off vapotherm by the next day and just on regular nasal cannula. While I appreciate them asking my input (and glad they listened to me in ER) it's a lot of pressure when they keep asking if he is back to his baseline. (This is where nurse and mom start to doubt each other's judgement.) I joked and told Bricen Mommy was gonna hunt down whoever gave him those germs and kick their butt!!
           We were there for Christmas. The fam brought a couple crockpots and  chicken nuggets  :) and we had a small gathering in the waiting room Christmas Eve. This was the same unit my sister died on 15 years ago. I didn't even realize it at first. It is crazy how life brings you full circle sometimes.

If you look closely you can see where his chest is sunk in the middle.

This was Christmas Day. Of course, Bricen had some outfits for Christmas Day and at this point he was still not allowed to wear clothes. So we hung them on the bed instead.  

I'm not sure who was more excited when we finally got the okay to wear clothes, Me or Bricen.

We got out of PICU that same day. Moved to the Pulmonology Unit. This unit was amazing. I had signal (hardly ever had signal in NICU or PICU), there was a futon type thing in the room, a recliner, bathrooms for parents with showers, a fridge, two big screen t.v.'s, and a desk area. It was very nice but at the same time I did not feel like I could leave Bricen like I had in the PICU to just step away, walk downstairs, shower, etc. These nurses weren't bad by any means. Their patient assignment was just heavier. That was okay, I'd trade a shower and going downstairs anyday for a move out of PICU. We learned that his pulmonary hypertension that he was born with was gone but the two holes in his heart had not closed yet. Just something else we will keep an eye on and wait and see if it takes care of itself. But on the positive side at least it's not so bad we are needing surgery for anything right away.

          We were released Dec 28. The sleep study done the day before the admit was worse than his first one done while an inpt in NICU. But we wondered if it was worse just because he was so sick or was it really worse? We were dismissed with another sleep study scheduled, and a bronchoscopy scheduled for that same day to check for laryngomalacia. We also went home with a feeding pump to use instead of bolus feeds with a syringe. We found that by better controlling the rate he was tolerating the feeds better. It also made it so much nicer, gave us more free hands during a feed and a means to stop the feed if he started throwing up during a feed.

          We celebrated Christmas New Years Eve. Marty volunteered to make chili (I think he just wanted to use some deer meat). We had an unconventional (normal is so overrated) meal but all got together and opened presents. Bricen finally got to wear his Christmas clothes.

           It was kind of nice to celebrate Christmas on New Years Eve and kind of bad. Unfortunately, everyone but Bri and family had things to go to so it wasn't the same as usual as far as getting to stay and play games, etc. But it was still nice and Brianna and her family stayed that evening and we played Minute to Win It and watched the ball drop.

          Chelsi and Chris got engaged right before Christmas and we are so excited for them! God has given them a gift in each other and it's one I'm sure they will not take for granted. Chris is a great guy to say the least and will be an awesome addition to the family. The wedding isn't for like ten years (seems like haha) but we are still excited for them.

           It was around this time I was trying to figure out what I was going to do about work. My maternity leave was up Jan 2, 2012. I was quickly figuring out that there was no way I could go back to work on my original shift of week nights (three nights out of Monday thru Thursday). If I worked nights I'd never sleep because of all the follow up testing/appointments/therapy Bricen was going to need and for the same reason I could not do days. With that aside, even if it worked out that Brianna could watch Bricen those days I work (which it didn't) that would not be fair/feasible for Marty to be the one up with Bricen during the night and try to go to work those days I worked. He is not a normal baby that sleeps like other babies. If you take the night shift for Bricen, chances are you are up with him. 

         Long story short no one would be getting any sleep and we wouldn't be able to make all these appointments. It was a decision I did not come to easily and one that I prayed over but I decided that weekend days would be the only way to still provide us with additional income and still allow us to meet Bricen's needs right now (and survive ourselves). My mom would allllways remind us to put God first and everything else would fall into place. (That and to watch out for black ice and the entrance ramps and turning lanes were always slicker than the rest of the roads haha) This weighed heavily on my mind as I was trying to figure out what we were going to do. But in the end I think JC gave me a peace about it. Bricen is not healthy enough for us to even go to church right now even if I wasn't working Sundays. When he does get healthy enough we are gonna have to go during the week to things and go from there. Hopefully this little guy will start to see some improvements in his health in the near future.