Hank & Angus’ Story

Thursday 22nd of March I was admitted into the John hunter hospial in Newcastle after a specialist ultrasound. I was sat in a small room and was told “your boys aren’t growing angus has reversed Doppler’s and is in survival mode and hank is growth restricted, we may have to deliver and they don’t have a huge chance of surviving.” I honestly just thought I was seeing a specialist because twins were a high risk pregnancy. I was admitted into hospital given a steroid shot and was woken at 1:30am in the morning for my second steroid shot. How I fell asleep to begin with astonishes me.

I went to the bathroom and realised my water had broken with no signs of labor. I was wheeled up to deliver suite where I was monitored constantly for 5 days straight with rounds of antiobiotics and not being allowed to lay on my back as it cuts off blood flow to Angus. Turned out hank had ruptured his membrane. Angus’ membrane was still intact.

Day 5 no sleep, woken up for obs and antiobiotics and another early morning ultrasound to check the boys growth.

We were told that Angus was struggling and were given the choice to sacrifice Angus to leave hank in to continue to grow.

The thought of letting my baby die inside of me was not something I could ever get over, and with hank having a ruptured membrane, his arrival date was unknown, and to me that was too much of a risk, what if I could have saved Angus after all. We made the decision to get them both out via emergency planned c section. I was given the info of the odds and the magnesium was put into my canula. So painful!

I was strangely relieved getting wheeled into theatre because I knew I did all I could for my babies and it was almost like the weight had been taken off me because there was nothing more I could do for them while they were inside.

My c section was uneventful and routine according to the paperwork. That made me laugh. Didn’t feel uneventful to me but I didn’t take offence. I was lucky my health was 100% fine. I was wheeled into the nicu to see my boys after I got feeling back in my legs and from what I can remember I just thought they were beautiful and I couldn’t believe they were all mine.

The boys were 25+5 when born. Hank was at 720gms and Angus a small 475gms. Both boys looked so different to each other. I got the debrief from the nurses and doctors on their progress and everything was looking up. Being born at 25 and 5 weeks were were kind of like celebrities in the nicu. Everyone knew about my boys. I discharged myself 5 days after my c section. I couldn’t stay in the ward any longer seeing mums with their babies when I knew mine were upstairs fighting for their lives. Leaving the hospital I was a mess. I came home, laid in bed and sobbed for what felt like hours untill I fell asleep.

Hank came off the ventilator after a few days and was put on cpap. Him being the bigger and more stable twin I was able to have a cuddle with him and help with his cares. Angus was just a little bit too fragile and needed limited amount of handling.
9 days in we got sat down by the doctors and were told Angus had a shadow in his chest after having a routine X-ray. Turns out part of his digestive system had crept up compressing on one of his lungs. Due to his size we couldn’t operate so we had to just wait untill he grew and hoped that the hernia didn’t collapse his lung.

3 days after that news one of our nurses noticed that Angus had some peeling skin on his lip and his fingers. After results came in Angus had caught a staff infection in his skin which caused the skin the blister and peel off.

He was monitored by the wounds specialist and heavily sedated to keep him without pain. Sadly Angus got sicker, his blood turned sepsis which started shutting down his kidneys. He couldn’t release any fluid so he became quite puffy, my poor little baby changed so quickly before my eyes, he was unrecognisable. We had many talks with doctors and specialists and were told that Angus would not have quality of life and he would always be a sick little boy. The world is a hard enough place for us when we are born without problems. We requested a brain ultrasound, if his brain stopped developing due to sickness (like the doctors feared had happed) that would be the factor determining our final decision to discontinue his life support and put him out of pain. The results came in that his brain hadn’t developed past the size of a 23 weeker. Which is were he was at when born due to his small size.

It was the hardest decision myself and Jasiah had ever made. My dreams of my boys growing up together faded right there. After more talks with doctors and specialists we decided to say our goodbyes a few days later. Our immediate family came to the hospial were we got him christened and turned off his life support where he was surrounded by love. That was the 17th of April.

Angus was 3 weeks old.

We took off his dressings and lines he looked so sick. We cuddled him so close, then moments later he took his last breath. We gave him a bath and dressed our baby and gave him more cuddles before he was wheeled away forever.
It broke my heart to know he was that sick and as his mum I couldn’t do anything. No parent should have to do that. It literally made my whole body ache and my head felt like it was going to explode.
The next day we were back at the nicu, as heart breaking as the day before was we still had a little man that needed us.

That night after leaving I felt the need to call to check on hank. The nurse told me news I wasn’t expecting. Hank had crashed really quickly having De sats and Braddies. He had to be put on a ventilator and was immediately started on antiobiotics and blood cultures were taken.
Hank had contacted late onset group b strep. My breast milk was tested and came back negative. Sadly this was something that little babies can contact in the nicu.

I couldn’t for the life of me comprehend what was happening. I just lost my little boy, surely I couldn’t be loosing my other one too.

Hank was touch and go for a few days but eventually was put back on cpap and improved.

2 weeks and 2 days later after finishing his antiobiotics he crashed. He contacted group b strep again. He handled it a lot better the second time he was put on antiobiotics for 3 weeks and had multiple blood cultures when finished antiobiotics  to confirm that the infection was gone.

Thank god it finally was.

Hank needed multiple blood transfusions to raise his levels and his liver was enlarged due to all the antiobiotics he was on.

We cruised along for a few weeks getting hank off cpap and onto high flow. Hearing the old 2 steps forward 1 step back got pretty old, and some days I didn’t think I would get through.

He started drinking bottles and was doing amazing! We were moved to special care and were finally hearing the words “not long untill your going home.”

Then, Hank’s eye results had come back. His eyes had progressed to stage 3 ROP and he was needing surgery to laser out the damaged vessels. This was a major setback as hank was put on a ventilator and put back in intensive care. Lucky after the med had worn off he was taken off the ventilator and put on cpap. It felt like such a kick to the guys being so close to home and then seeing my baby with all his gear back on and having to be re introduced his feeds again. Felt like we were pushed back to where we were 6 weeks ago in his progress.

On day 3 after the laser surgery hank had a cough. Turned out he aspirated into his lung during his surgery and had signs of pneumonia. Here we go again back on antibiotics.

I think my body and brain had had Enough because that week myself and Jasiah had a terrible cold. I was bed ridden and couldn’t see my baby. Since the nicu was being renovated the 24 hour camera was down so I couldn’t even log in to check on him and since he was in a deferent room I didn’t have the direct number to call to check on him.

It was torture.

Hank amazing sprang back into his pre laser surgery self and was moved back to special care and demanding to be only fed by bottles.
He was doing better then before.

We finally caught a break!

On Friday 22nd of June exactly 3 months after being admitted into hospital they told me hank was ready to come home.

We did a “room in” learning how to use hanks equipment as he was coming home on oxygen and to help us get comfortable spending a full night with him on our own.

I didn’t sleep a wink.

After some final tests and ultrasounds over the weekend to check that everything is fine we got to take our boy home on the 25th. Walking out of there was exciting and terrifying. It’s all on me now. I’m a full time parent. I have him 24/7. Like a real mum.
So far he has been home for nearly 2 weeks and I have cried every day. Sometimes from exhaustion, sometimes from being so happy to have him, but most the time because I never got to take my Angus home. And I feel guilty because I’m so happy… but I know that Angus is in a better place and that he will be looking over his brother giving him strength from above. My experience is something I never thought would happen to me. I wouldn’t wish it on my first enemy. But I’m lucky. I have a strong little boy who is a miracle and a survivor. And if he could get through everything he has been through I’m sure I can too.

Life as a nicu mum. 🙂

Kiera, Hank and Angus’ Mum ❤❤