12/18 is Phoenix's birthday and he would have turned 16 for his 12/18/18 birthday. He lived for only 28 days.
He was born with a very rare and fatal muscular dystrophy called Duchenne, usually fatal in children when they reach teen years which made Phoenix's case even more rare, and still remains a mystery of science today. Seemingly a normal pregnancy up until almost 8 months along, but I had an intuition something was not quite right even with all the doctors waving off my concerns. I reached a point of such pains in my chest and hadn't slept in days, spent a few hours in the hospital for pre-labor contractions, just to be sent home to rest. He wasn't due for another month, they felt the contractions were just strong Braxton Hicks. I had a checkup scheduled 2 days later but insisted on going the next day. My doctor had his technician do an ultrasound and less than 20 seconds after she looked at the images on the screen, she hurriedly excused herself. That's when I knew something was terribly wrong and my maternal instincts had been right all the months before. Sure enough, she came back 5 minutes later with my doctor. He told me I needed to get to the hospital right then, and they had already called them and they were expecting me. He said my life was in danger and I needed to waste no time to get to the hospital. He said waiting for an ambulance would take more time than if we could just drive there and he would see me there.
In the car I could not speak, for one of the few times in my life, I prayed. Not for me but for Phoenix. We had no idea what was going on and when we arrived, there was a staff of what seems like a hundred, waiting for me and they whisked me away so fast to prep me with what was still unknown to me. To hear this, "We need to get your baby out but....this is not about saving the baby, but saving you. If we don't do this now you will die. Do you understand what we are telling you, this is to save the mother and not the child, your baby most likely won't survive?". No, I didn't understand it, I wouldn't sign the papers. It had to be signed in an emergency order.
Because his muscular dystrophy was not detected early on, I developed polyhydramnios, because he had no gagging reflex and was not swallowing, the amniotic fluid had built up over those months because he was not regenerating it like fetuses do. It had caused such pressure buildup that my uterine membranes were close to rupturing from the inside, and that would cause my death.
The anesthesiologist didn't have time to fully administer the drugs to numb me when they started the c-section. Later I found out he had to pump enough drugs including morphine that would have knocked a 400lb person out for days and there were concerns if I would wake up. Shockingly just an hour later I did wake up, I was told Phoenix was alive, barely 4 pounds, and he wasn't doing well. They ran tests for the next few days to determine what he had. They ran tests, biopsies, had specialists around the country see him since he was one of the rarest cases.
My siblings and mom flew in to see him, he was always surrounded by so much love and light and gratefully, they took my other son back with them so he could enjoy Christmas and allow us to be at the hospital as much as we could.
We kept our faith, hope, and determined thoughts that they could help him. They gave him steroids and other drugs with the hope that his lungs would get stronger, they tried to take him off the ventilator twice just to put him back on within a couple of minutes. In my heart, even before any words were spoken out loud with any advice and theories, I knew that this beautiful, perfect being's future did not hold a future. But I thought, as long as they don't say it, I have hope. I spent every day with him, feeding him through a feeding tube, changing him, bathing and brushing his hair, singing off key to him quietly, reading Peter Rabbit, talking, holding, kissing, loving him. Instead of a classic lullaby, I had chosen a song by Celine Dion - I'm Alive, interestingly enough, I chose this song early in my pregnancy to play to him through headphones on my belly.
Christmas and New Year's came and went, they were not holidays to me this time around.
A couple of weeks in, cards were being left in Phoenix's section. Anonymous visitors seeing their babies, have been watching and wanting to give me encouraging words. Hundreds of tiny crocheted butterflies and angels started pouring through in the mail from strangers all over the country. Nurses and doctors were telling me how Phoenix had these big dark eyes of an old soul. He would look at you so intently, they would talk to him and felt he understood them. A nurse specifically told me because of him, she decided to reconcile with her father, she hadn't talked to him in years but she felt Phoenix guided her to make that move and will forever be grateful to him.
3 weeks in, the devastating news came. The only thing that could possibly give him a chance was stem cell therapy, but at that time it was too controversial regarding ethical practice. His lungs were failing him, his brain was not getting the oxygen as well as he needed, he was going on a very rapid downhill deterioration. He didn't have much time left, we were given the option to bring him home with the equipment so we could get to "bring" him home for the time he had left. But he may not even make that transport without needing to resuscitate.
I could not have that bearing down on me for the rest of my life.
Knowing I had about a week left with him, I bought a handful of handprint kits. I tried desperately to get his tiny hands' imprints with no luck, even with the nurses' help, I had gone through all the extra boxes trying. 23 days in, was the first time I broke externally. I had held it all inside, tucked away, tightly locked, I could not show a strain of worry or sadness because I didn't think I could hold it together if I did. I needed to be strong for him, for those around him, for myself.
But day 23, I completely felt defeated, exhausted, broken. I cried and whispered to Phoenix "I love you, I'm sorry. Mommy has to go for just for a little while but I will be back soon."
I cried walking out, in my car on the way home, when I collapsed on the sofa. I cried myself to sleep.
A few hours later, I woke up. Pulled myself together as best as I could and went back. The hospital staff looked at me with concern, because they witnessed it, or tried to help, or heard about it. I smiled and told them how much I appreciated them, thanked them for being so good to Phoenix.
I went over to my son and he was awake, looking at me. I had told him I was back and I was ok. But I wished he could somehow show me, that he understood what his outcome will be and if he was at peace. A nurse came over and told me to look, as I had bowed my head and closed my eyes. Phoenix had a tear, and his heart rate that was normally always too high, this time was surprisingly at a normal newborn rate for once. Phoenix gave me the sign I needed. He told me at that moment, he knew, he was ok, he is ready.
That night I got a fever, they told me I needed to stay away NICU for a day to protect the other newborns. It was torturous but I understood. The 25th day, I went in, plans were being made to move Phoenix to the private room in the unit, so we could spend the last couple of days with him in private. A nurse came over with a box, she said it was for me. I had no idea what it was going to be when I opened it. Inside were two little statues, they were casts of Phoenix's hands in life form. I looked at her in shock. She said the person that did it, wanted to remain anonymous, he was an artist that happened to be there the day I tried to get the handprints. He was visiting his sister's baby and after I left, he had asked about Phoenix, he saw how devastated I was when I couldn't get a print. He didn't want or need a thank you. But he just wanted me to have what I needed so badly and felt with his gift, he could give me the gift of my son's hands with all the lining of his fingerprints and creases in life form. Yes, the hospital could have gotten in a lot of trouble allowing that, as I didn't give consent. I am so grateful they broke that rule. I was blown away from the generosity of a stranger.
The next couple of days was a test of any faith I had, I wrestled with so many thoughts, putting blame on myself, on my Dr, on the ultrasound centers, on God, back to myself. Anger turned into sadness, sadness became relief that my son will not suffer anymore, repeat. NICU had a rule during the shift change, visitors could not be there, they allowed me to stay for the rest of his days.
Day 28
Two Chaplains came in to visit and talk to us, they baptized Phoenix, said prayers. I felt prayers failed me, the world failed me, I failed my precious child. I was given some time alone with him before a pediatrician, a couple of nurses, anesthesiologist, and a couple of close friends would join us for support. I asked him again if he was ok, if he was ready to let go or does he have more fight left in him. Neurologically, he had a perfectly normal newborn alertness and health when he was born, but in just a few weeks was a remarkable change, there was no denying it. He wasn't responsive the way he had been. He no longer by that day, followed me with his eyes, he had been slipping away quickly in just one week and especially the last couple of days. Then I said out loud that mom isn't sure if she is going to make it herself or if she can survive this. Phoenix's eyes, they followed me right then. And locked in with my eyes. He was telling me to set him free, and I will carry on because I must.
The entire staff and some had that day off, came in, the ones working stopped in to say goodbye to him, and to check on us. At one point there were so many people that filled the room. I held Phoenix in my arms for nearly an hour. Which seemed like an eternity and a few seconds at the same time. He took his very last breath near the hour mark, I felt him leave with that breath. Which may have been the only reason I kept my sanity and did not scream for everyone to put him back on life support and revive him.
The doctor checked to detect a heartbeat one last time. Phoenix was gone. I held him for awhile alone. Everyone left to give me my time with him. We had agreed to donate his major organs to research before all of this, if it could somehow help prevent way in the future, another parent having to go through this, and save a child. We had to.
I'd like to say that life got easier over time, but it didn't. In fact, I was really good at seeming like I held together really well. But I was slowly and silently falling apart inside. I wish I could say I didn't fall down too hard, that I got up quickly if it happened. But I didn't. I fell a lot and hard. Sometimes it took a tremendous amount of will to pull it together. It was a very long, windy, complicated road each year to get in a better place emotionally. Part of my demise was refusing emotions. I fed off of being concerned with other people to be too busy to deal with me.
But I released the emotions that trapped me, surrounded myself of positive and encouraging people, rid of the environment that was toxic that I felt obligations of holding on to. Until I realized I was slowly killing myself trying, I was not responsible for them, and it wasn't fair to carry that weight. I came out stronger and better after I recognized I needed to mend. That I deserved and needed to heal.
Fact, each year that passes, does make those 28 days 1 year further away than the last. But it does not get easier for me, it just gets a little more manageable. Phoenix was right, I did carry on. I didn't think I would and it was an uphill battle with no breaks for a long time. And you know what? I will carry on.
