A letter to my son: 'It’s been almost a week since you were born and I’ve never seen your eyes open.'

Dear Samuel,

Right now I write this with my heart in pieces. You're in a hospital incubator, what feels like a million miles away, surrounded by wires and tubes while I’m home on the floor in your nursery surrounded by all the things we bought you and don’t know if you’ll ever use.

It really doesn’t get much worse than this. I can’t hold you, I can’t feed you, to touch you I have to put my arm through a hole and find somewhere on your body not covered in wires that I can stroke.

It’s been almost a week since you were born and I’ve never seen your eyes open. The doctors tell me you do open them sometimes at night but I’m not there to see it. I’m not by your side where I should be, where every mother of a newborn needs to be.

Most of the day, I sit by your incubator with my heart literally hurting for you. I hate that you suffered, that you’re suffering and going to suffer. I hate that you’ve had more trauma and medication in six days than I’ve had in a lifetime. I’m worried about a million things for you and all I want to do is hold you and I can’t.

Image: Supplied.

You were born on Tuesday June 16 at 5.16pm. We were told the whole pregnancy that you were a healthy baby. We had lots of scans and tests and everything was fine. We were expecting none of this. A medical team have gone over your scans and even they are shocked. No one expected this.

They pulled you out and you looked fine, you seemed fine, just a bit of fluid you needed to clear. You weighed 3kg and were super cute.

They put you on my breast in recovery and you sucked for a few minutes. We got into the lift to go to our room, but in the lift you started to struggle to breathe and that was the beginning. Our lives would never be the same.

That was the moment we would discover a new world. One I wish we never had to.

They rushed you to the special care nursery and I didn’t get to see you again for over 12 hours.

That night as I was throwing up from all the caesarean medications, you struggled in the nursery. No one had any idea what was coming. They took colostrum from my breasts every two hours and took it to the nursery, but giving it to you just made you sicker. At 9am the next morning the paediatrician had X-ray results and told us what was wrong with you. Our obstetrician was in the room and his face said it all: this was bad.

TOF (Tracheo-Oesophageal Fistula) - these new words have gone from something I’d never heard of, to terms I hear every day.

Being a TOF baby means your trachea and oesophagus weren’t connected in the right places which affects your breathing and eating. You needed surgery ASAP.

A team of over five people rushed you in an incubator from the nursery to the NICU at Royal Women’s. I followed in a wheelchair still dressed in a hospital gown, devastated, in shock and sick for you. The tubes had started. There were more to come.

Image: Supplied.

Teams of doctors came in and out. It was a whole new existence I didn’t want to be in. I wanted to scream. I wanted to take you and run. I didn’t want to be there listening to doctors tell me about all the things that could be wrong with you from this and what may lay ahead for us. 

There were forms to sign, I consented to things I knew nothing about but obviously I had to, I just wanted you well and in my arms. More teams of doctors and nurses would come through checking everything, your heart, your brain, your kidneys and I just held my breath every time, I couldn’t take any more bad news.

They took you away for your surgery that afternoon, and it went for over eight hours. We waited and waited and finally heard from the surgeon at 9pm. 

Your surgery went well. They had to stop halfway as you were having trouble breathing but your incredible team of doctors got you through. We would still have to wait and see whether the surgery worked. We would only know in about five days, so now it was about keeping you stable.

We went from our hospital room to the NICU, still struggling to comprehend what had happened. There were parents in every room of our hospital floor with their new babies and your dad and I in ours alone, pining for you, feeling completely broken that the three of us had been robbed of getting to know each other. I had been looking forward to those first few days for so long and they were taken from us.

Every time your dad would see another dad come into the hospital with a car capsule ready to take his baby home, his heart would break a bit more. So we left the hospital on day three. 

Leaving you was agonising. How much worse could it get than going into hospital to have your baby and leaving without one? I knew at least you were alive and I was grateful for that, but it was still beyond difficult.

Every day I have to go home and leave you behind, and because we’re in a pandemic your dad and I can’t even see you together. We have to sit beside you one at a time and no one else can come visit you, so it’s me pretty much all day and some nights sitting by your side. I go home and try to explain to your big brother why he can’t meet you and every day it breaks his heart a little more. Nothing about this is natural, this isn’t how this time was meant to go and I’m angry and broken.

I now also have to express breastmilk every three hours. Without you, I sit alone in the middle of the night or I sit in a room in the NICU expressing, on a cold sterile chair staring at a wall instead of sitting in the beautiful nursery chair we bought you for your new room that awaits you.

It was a week before I saw you open your eyes and nearly ten days before I could hold you. Those were the longest, hardest days watching you and not being able to comfort you, soothe you and care for you. When I got to finally hold you, that was the best feeling in the world and I never wanted to let go.

Image: Supplied.

The nurses in the NICU caring for you were brilliant and they spent 24/7 making sure you were comfortable and cared for and along with your team of doctors, you began to recover really well. 

You were a strong little fighter and slowly one by one, the tubes came out, the medications decreased and you breathed on your own. We weren’t out of the woods as there was still risk of infection but your surgery had worked, there were no leaks.

About two weeks later I got to breastfeed you. We all waited holding our breath to see if you would suck - that would be the key to getting you well quicker and getting you home faster and you did. You fed well and just continued every day to feed like a little champion. 

It was hard and tiring for you but you did it and I stayed with you to do as many feeds as possible so we could get your feeding tube out. In the meantime, there were more tests; eyes, ears, spine, heart again, brain again, kidneys and more. Some of your tests have shown things which everyone is hoping will settle themselves, so over the next 12 months there will be more and I pray every day we are through the worst of it.

We’re going to be going to the TOF clinic often and pretty much at the hospital every week for a while but we finally got to take you home just before you were three weeks old.

Image: Supplied.

Finally, you arrived home and your big brother got to meet you. We couldn’t love you more and will be forever grateful to the NICU teams and their unwavering dedication to saving your life. We are hoping that we can now raise the money needed to buy the NICU a new incubator for other babies like you.

All my love, now and forever.

Mum xx

If you have the means, Carly is encouraging people to help raise the money needed for a new incubator in the Neonatal Intensive Care Unit at The Royal Hospital for Women in Sydney ($75,000). You can donate here.