“I bet you will be so relieved to have her home with you?” Yes more you can imagine but don’t be fooled. I’m also terrified that this tiny, fragile human that still bears scars and long term effects of prematurity is now our sole responsibility.
“You won’t be getting all that lovely sleep when she’s home”. I haven’t slept properly since before she was here 1. because pregnancy insomnia. 2. because waking up 3 hourly to pump milk for my tube fed, 1lb 8oz daughter who I wasn’t sure would still be alive when I took her the tiny amount of milk I’d managed to express through blisters and tears and 3. because I would wake up every night gasping for air, forgetting and remembering all at the same time.
“You soon won’t remember half of what you all went through”. I will; for the rest of my life.
For the first few weeks all I focused on when Phoenix was in hospital was her surviving the hour. Then it became surviving the day and eventually the week. Once those uncertain, frangible times passed, I started to entertain the idea that she might actually one day come home. Every time I thought it, a voice inside my head screamed “Don’t say that. Don’t you dare buy any bottles. Don’t you even consider washing her clothes. If you do she will die”.
Doctors started mentioning it. Nurses said the words “when you are out of here”. Everyone I spoke to finished their texts with “Have you got an idea of when she will be home?” and I would reply with a breezy “Not sure yet, soon hopefully!” all the while inwardly cursing that they might have jinxed it.
But then it happened.
We had been told she could come home if she took all her bottles in a 24 hour period. When I rang first thing in the morning I expected them to tell me she had got too tired and needed a tube feed, but they didn’t. When I arrived on the unit an hour later, I expected them to tell me she had taken a turn for the worse and was back in Intensive Care, but they didn’t. On ward round, I expected them to tell me she couldn’t come home that day.
And they did.
They said before she could go she needed a routine echo and brain scan and they would most likely not get it all done that day so perhaps it would be 1 more day. After 80 days and the hope of finally coming home, I was seething inside and it took everything not to weep. I listened, I took deep breaths and I said in the calmest voice I could find “Do you have any concerns about her coming home today and do these concerns relate to the scans you need to do?” The doctor replied “No, they just need to be done before she can go” and I said “In that case, I will be taking her home today. If you can get them done, great. If not, we will bring her back”.
In that moment I finally felt like her mother. I was deciding that my child would be coming home with me that day.
The next few hours were a blur of paperwork, learning CPR, packing up her belongings from the three drawers in her incubator, brain scans (they managed to get one done...) and then me rushing home to collect Connor who was allowed to join me for the last ten minutes on the unit. All I remember is looking at Connor in disbelief that it was happening, and being met with the same wide eyed stare.
On the 13th April after 80 days in two different NICU’s where Phoenix endured brain bleeds, sepsis, ventilation, multiple blood transfusions, lung collapses, a lumbar puncture, countless cannulas and untold amounts of heel pricks we finally got the moment of carrying our baby out of the hospital doors in her car seat. This was at the height of the pandemic so it wasn’t ‘normal’ but then what part of our journey was? The only people there to share our special moment was a cleaner who nodded and gave a look as if to say “Go, get out of this infected place quickly!” and a taxi driver smoking outside his car, wearing a mask around his chin.
We bundled her into the car as quickly as possible and I remember thinking “Drive Connor, Drive! incase someone came running out saying, “there has been a mistake!”
And then we were home.
Time stood still. We spent the whole night taking turns to hold her to our hearts, constantly feeling her hands to check she wasn’t too cold and watching her chest rise and fall to make sure she was still breathing. It was an absolute dream and something my brain hadn’t let me imagine properly, but I know even if it could have, it would never have been able to fully imagine the euphoria I felt in that moment.
Home was now where my heart was after it had been in an incubator for 80 long days