He's Not Dying

I had to ask. I needed to hear it. 
I am currently in the family lounge while the medical team inserts a PICC line for better access. When we had a PICC line inserted in the NICU we were told it was a long term solution because he was going to need enzyme replacement therapies as well as potential emergency assistance and this was the best way to get the medications immediately. When the CVICU team told me they were going to do a PICC line my PTSD kicked in. I asked my usual questions but for the most part I had been through this procedure before and knew the benefits and risks. Although I understand and we successfully had a PICC line inserted before, it’s more terrifying this time. Today we saw what Finn was capable of and it isn’t good. 
Finn slept through the night with the new assistance he received yesterday. He woke up a few times with a dirty diaper or when his pacifier fell out but for the most part seemed comfortable. We have one-on-one coverage in our new ICU room so our nurse, Sam, was on top of it. His heart rate got as low as the 90s at couple of different times and that is a concern to those managing our care. Today after doing some initial assessments and rounds we were able to snuggle. He has so many different wires and tubes now that it takes a lot of work to be able to hold my baby, but it’s totally worth it. He laid peacefully in my arms and slept. It was wonderful. The intensivist came in and messed with his ventilator a bit. Changing him over from CPAP to BiPAP. The easiest way of explaining the change is that the ventilator is now providing him a breath rather than a continuous flow. It’s additional support and the last step before we have to intubate him. The BiPAP rate made a significant improvement in his presentation. Until it didn’t. 
After about an hour of rocking with my little meatball I started to notice that his breathing was progressively getting worse and worse. The team was meeting outside of my room and I wasn’t sure if his regression was enough for me to warrant pressing the call button. The nurse returned just in time. She agreed that he was no longer doing better and said we need to move him to the bed so she could check him out. Finn started getting upset. Very upset. I looked at the monitor and our nurse’s face. His HR dropped to 61 for about 8 beats. She got him in the bed and immediately picked up the phone to call Dr. Horvath and tell him. I stepped back and waited until she got him stable and took a breath herself. Then, I excused myself from the room. I didn’t want her to change the way she was acting, talking or assessing him because I was there. If they needed to do additional interventions I couldn’t have them worrying about me or what I heard and saw. When I came back to the room after a short break she asked me, “did you see that?” I told her I did. She said, “do you understand what happened and what it means?” I told her that I knew a heart rate of 61 is dangerous and terrifying. Then she was honest with me. This shook her and she was scared in that moment. It has been stable since, but now we know what he is capable of.
The remainder of the day today he has been sleeping. Resting quietly and only grumping when he has a dirty diaper or his paci falls out. During a brief awake period I was able to read him a book. He looked at the pictures with intent and seemed somewhat content. It was obvious that he got tired pretty easily.
When the NP came back we talked more about the PICC line. They asked if I had anymore questions. After my usual litany of questions and concerns I finally asked what has been in the back of my mind for the past few days. I didn’t know if I wanted to know the answer but it just came out of my mouth like vomit. “Is he dying?” 
“He’s not dying” 
“He’s not dying”
“He’s not dying”
“He’s not dying”
“He’s not dying”
She kept saying it and I kept needing to hear it. She was repeating the phrase over and over again and I didn’t want her to stop. I wanted her to stay with me all day repeating it. Even now waiting for the line to be placed I know that she needs to be with him, but I need someone to be here and keep saying it. I don’t know why I require this affirmation but I do. I don’t feel better yet.
As I was writing this genetics came to see me. Our labs are out the door and will be received tomorrow. That means that on Wednesday, April 12, one day before my sweet boy turns three months old, we will have all the genetic information available to us at this time. It doesn’t mean we will have an answer. I don’t know how to feel about that. Part of me wants to know, I want answers. Why did this happen? How do we fix it? The other part of me knows that those answers may not be what I want to hear. And, just because we know which gene(s) are affected (if this is genetic) it doesn’t mean we know enough about that gene or disorder to even do anything. We may find out that this isn’t genetic at all and then we are back to the drawing board. Next Wednesday is going to be a tough day no matter what we do or don’t find out.
Tonight I am going to go home and spend time with Asher and Jeff. Eat dinner, snuggle my big and read him as many stories as he will let me. I miss him. I miss being a mother. I don’t feel like I am parenting either of my kids and that is so hard. Finn needs me because someone has to be his advocate and no one knows his normal better than me. After finding out that my conversations with our nurse, Laura, yesterday lead her to act quickly and get him the additional interventions he needs I realize that I do have a lot of value here. That even though he may not realize it, Finn needs me here. But, Asher needs me too. He needs to feel loved and supported and confident that he is taken care of. It’s so important that he isn’t traumatized or affected anymore than we can help. So, tonight I will take a break, regroup and come back after Asher falls asleep.
April 4, 2017


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