DAY 6

I honestly don't think I got very much sleep that night, if any, and remember feeling like I was just going through the motions but not really there.

This morning was supposed to be Emmy's first ever dance recital. She had practiced long and hard for months for this day, and I couldn't imagine not being there for it. So much had happened that week and I felt like I had put her on the back burner, and I just couldn't do that to her for this moment too.

I wore the same clothes I had worn for 2+ days, got in the car with Logan from the hospital, and we headed towards her recital. For the 3 minutes that she was on stage I was taken away from all of the heartache. She was beaming the entire time she was up there and couldn't wait for her next recital.

After her recital we headed back to the hospital. From that moment until that evening, I don't remember anything that happened. I'm sure there was a lot of sitting in the recliner by his bed, a little bit of holding him as to not disturb him too much, and a lot of wondering what was to come.

That night I lost it, which is probably an understatement if you ask my husband. I was confused. Friday night I thought I understood what was happening. I thought that even though he was pretty much on life support, that at some point his fragile little body would just stop responding to the oxygen. I guess I thought it would be that easy, and that we wouldn't have to make any more decisions for him.

But that night I needed more answers. I had been told he wasn't much longer for this life, but yet he was still here. I was mourning him but still trying to soak all of him in. Turns out it is hard to do both, and it can really throw you off.

It's hard to tell you how I was feeling, because unless you are going through it then you have no idea. I know a lot of people thought they knew what was happening. I know a lot of people thought we would be able to keep him but he would just be a little different. But that wasn't the case, and we knew that. Even if you came to visit us at the hospital, you couldn't know how we were feeling through all of this. You weren't there when we would talk to the doctors and nurses. You weren't there watching his every (lack of) move. And you especially were not there when we would cry to Heavenly Father looking for answers.

They stuck me back in a room with a hospital bed that night and Logan made me sleep, because that's truly what I needed to do to be able to make it through the next few days.

DAY 5: Diagnosis Trisomy 13

That morning we woke up and headed straight for the hospital for the doctor meeting. At this point we knew that there would most likely not be any "good" news, and that the chances of us just waiting for the Chromosome test to come back would be our routine for the next few weeks.

That morning at the meeting we were shown a picture of his brain. Most brains have ridges, his did not. We talked more about meeting with a neurologist so that he could tell us what parts of Dawson's brain were functioning properly and which were not. Honestly, I didn't want to know what wasn't functioning. I'll admit it: I was too scared to know. I wanted to pretend he could hear me, smell me, SEE me, and know that I was his mom. The last thing I wanted was for a doctor to tell me that he was nothing more than a cute little body.

With all of the awful news we kept receiving, we were still happy to hear that later that day we would be able to hold him.

My dad arrived that day with his camper in tow so that him and my mom would be able to stay as long as they needed to.

Around 5 the nurses called to tell us that they had to switch him from a normal oxygen tank to a non-invasive ventilator, which was pushing oxygen into his lungs and was one step away from intubation, because he had stopped breathing 10 times in one hour.

We were getting ready to head to dinner when we got a call from the nurses again. They wanted to know when we would be in because the doctor was coming in (on a Friday night) and wanted to talk to us. We decided that Logan, my dad who hadn't gotten to see Dawson yet, and I would go ahead and go in and talk to her before we went to dinner.

It was pretty obvious she didn't have good news for us. Not only had she come in on a Friday night, but she also asked us if we had eaten dinner yet. She pulled us into Dawson's little area, closed the curtain, and told us the news. She had gotten a call back about his Chromosome test. He did in fact have Trisomy 13.

At that time we were asked if we would like to sign a DNR, which means Do Not Resuscitate. Because we had signed the DNR and he had been having so many problems that day with breathing, we were under the impression that he would not make it through the night. Family members were able to come in and hold him and we had pictures taken of him.

Even Emmy was able to come to the hospital and see him for the first time. I'll never forget how she looked at him with such love, care, and worry when she saw the place on his hands that he had been poked multiple times for an IV. She loved when he would wrap his clenched fist around her finger, which before this night had been clenched too tight to hold. Everyone was able to hold him, but I think Emmy could have held him and sang "Twinkle Twinkle" to him all night. He didn't open his eyes much, but when she started singing his eyes would dart around.

It was surely an exhausting night for Dawson, but he was able to be held by those who wanted to hold him without having any apnea episodes. After everyone left, Logan and I stayed in Dawson's room. Logan slept in the horribly uncomfortable recliner, but I had to go to a couch in another room to get just a little sleep since my incision was not liking the recliner.

It was a restless night full of the unknown of when or if he would decide he could no longer breathe.