I heard this almost everyday when my son was battling for life in the hospital. I heard it multiple times over again when he passed away at 29 days of age. The truth is, you can never be strong to think that your newborn baby is not going to come home. Ever.
Ayden, was born 1 month premature. He was a beautiful baby with thick black hair & soft pink skin. He was our first born & had all our emotional investment in him from the time we saw those 2 purple lines.
The day he was born, I cried out of joy, lying in the post-op room. The same evening I cried again, when I was told that we might not see him ever again.
There were days when I wanted people around, there were days when I hated having anyone around other than my husband, there were days when I cried at the sight of any kids, there were days when we looked at his pics and joked about his ‘stubborn attitude.’
We went through multiple emotions & struggles, in different stages.
When I was told about his heart condition, I didn’t want to believe it. I read up about it, did all possible online research, and kept telling myself that he’ll survive, though I knew a survival is tough for a premie baby. I joined the facebook group for parents of kids with TGA and read the positive stories and found solace in that.
I started going back to the start of pregnancy & even before that. Did I do anything wrong that caused this? Was it something that I ate? Was it the movie that I watched during pregnancy? I couldn’t find any reason – I have a healthy lifestyle, healthy pregnancy, I was happy. In spite of doctors assuring that it isn’t, it was tough to come out of the thought that I must have caused my baby this harm.
The trauma of being hospitalized when you are not:
When your baby is hospitalized, in a way you are too. Hospitals are the scariest places. They give us hope and most of the times they don’t. You experience multiple ups and downs, mostly downs. We would get calls from ICU any moment – it could be just for our regular chat with the doctor whenever he comes, or it could be for milk, or it could be to sign the consent forms, or it could be any emergency where Ayden crashed. We wouldn’t know what exactly the call was for until we reached the ICU. The walk from the room to the ICU always felt like I was walking on fire. We’d have a sigh of relief if it’s just the daily update. In a lot of cases, the night calls were when Ayden crashed. I would just sit outside the ICU, not knowing what to do. Nights were always scary!
I jokingly told a friend that my sleep pattern is as per AST – Apollo Standard Time (Apollo is the hospital where Ayden was operated and in ICU). Our life during that time was all Apollo (ironically, Apollo is the god of healing)
The survival rate for a TGA baby after the surgery is 90%, but that rate comes down to 20% if it’s a premature baby. Ayden was premature. We knew there’s very well a chance for him to fall in the 80% category. But we just had faith in hope.
Ayden had his 8-hr long open heart surgery done on his 7th day of life. The same night he crashed & the surgeon said he’s not very hopeful. I just said ok, came out of the PICU and cried my lungs out. I hugged my husband and both of us cried again. Then, it was a wait outside PICU for the doctor to just come out and say what we never want to hear. But, Ayden picked up by morning and his vitals were looking ok. That was our first ray of hope. This repeated multiple times where he crashed in the night, the doctor would call us & say it looks tough, we would again wait outside PICU for the bad news, he’d again pick up by morning. Raising and dashing our hopes multiple times, the little fellow fooled us.
We knew there’s a big possibility of this happening. So, more or less it was a wait game. One of the most heart-wrenching thing we did was discussing Ayden’s funeral even when he was alive – where to do it, how to do it, etc. My husband and I told each other to be strong, we assured each other that we will be. When the doctor said he just has another 1-2 hrs left, my first thought was that I should go sit with him and hold him for the little time he has. The next moment, I thought, maybe I shouldn’t because I don’t want to see him go. It was a battle inside my head – between decisions, between emotions, between life & death.
This wait for death was a zillion times scarier than the death itself.
Maybe, it was just a dream. Did it actually happen? Why? Why so much injustice? I struggled convincing myself that he’s dead. I went to this constant denial mode. There’s no way I can fix this. There’s no way I can get him back. But I refused to believe it. It was a struggle between reality & mind games.
It was devastating to see the unused baby mitts, the tiny caps and wraps that we shopped for him. I refused to put them all in the loft.
Life after death:
Our lives after Ayden’s death was mere cruelty. We struggle with things on a daily basis. I googled on how parents cope with their children’s loss, read multiple blogs by parents, psychologists, etc. Knowing there are a lot mothers sailing in the same boat was comforting. I wish I knew few of them personally, so I could share my mind with them & hear from them.
Ayden’s heart condition & things that followed were a total shock to us. We did struggle every single day.
I wanted everyone to remember him. I liked talking about him. I liked showing his pictures to friends who visited us. I framed his picture and kept on my bed side. He existed, though for a short while. I wanted that existence to matter, because it mattered to us. I like it when I hear his name, I like it when people talk about him, I like it when people remember him. Knowing that he’s remembered was my therapy.
A few days after Ayden died, my husband asked me – so, am I dad now? He was for a month. After that, we don’t know. We have the terms widow, widower, orphan, but none given to parents who lost their children.
Even now when people ask me, do you have kids, I honestly don’t know what to say. Sometimes, when I say no, they come up with advice that I shouldn’t wait this long and how wonderful it is to have kids. Yes, I totally know how wonderful it is to have one. And, I also know something you probably don’t – how heart-wrenching it is to lose one!