The Ups & Downs and Twists & Turns of NICU

I went into labour at 23 weeks + 2 days with my identical twin boys. It has truly been a roller-coaster ride of ups and down, twists and turns – and our story isn’t over…

Throughout the pregnancy everything was fine. I attended regular check ups and scans, and both boys were developing really well. Then, on the 15th October, I went into spontaneous labour. At 8.36pm twin 1 was born, followed by twin 2 at 8.42pm. Both weighing just 580 grams each.

It was the most terrifying moment of my life. Not knowing if they were going to survive was heart breaking.

 

Jace Eli Twin 1.jpg

Eli Jace – Twin 1 weighed just 580g

 

Both boys were rushed off to intensive care where the doctors and nurses worked round the clock to help them to survive. When I saw both boys my heart ached for them. I just cried. Seeing them struggling to adapt to the outside world was hard and we couldn’t do anything except watch, wait and cry. Sadly 6 days later twin 1, Jace Eli, passed away. He really struggled with the transition from womb to world and his tiny lungs were just too immature.

Emergency Surgery

Twin 2 Kellen Jace was the weaker twin, having been given a hour to live after birth, but he was fighting to live. As days passed Kellen had so much stuff to fight – various infections, high blood pressure, a grade 2 bleed on his brain, chronic lung disease – he needed numerous blood transfusions and at 4 weeks old Kellen developed Necrotizing Enterocolitis (NEC). He had to have emergency surgery to remove part of his bowel and needed a stoma. It was touch and go if he was going to make it through the surgeryE.

 

Kellen

Kellen – Twin 2, weighing just 580g

I got my first hold 55 days after he was born. It was truly magical. Kellen was ventilated for the first 13 weeks of his life, he had been given steroids to help wean him off the ventilator and 2 days before Christmas he was put on BiPAP. He was slowly making progress.

Dad had his first hold on Christmas Day which was the best present ever!

Laser Eye Surgery

Over the weeks Kellen became stronger and was weaned on to CPAP, but then in early January 2017 he was diagnosed with stage 3 Retinopathy of Prematurity (ROP). He needed laser eye surgery. Thankfully the surgery was a success and he didn’t require any more laser surgery, but due to Kellen being cannulated so many times the doctors were beginning to struggle to access him to give him his nutrition (TPN) and medicines. So, he needed to go back to theatre. They fitted a broviac line so doctors were able to have better access, however Kellen took a turn for the worst  a few days later. He developed an e-coli infection for the 2nd time and ended up back on the ventilator.

The doctors were worried he would struggle to get back off it. His lungs collapsed and they were badly affected so he was given a second course of steroids. Kellen started to make progress a few weeks later and was put back on to BiPAP where he was weaned again onto CPAP and then high flow. He was making progress again and was determined to fight this nasty infection. Kellen managed to get onto low flow and continued to do well.

kellen .jpg

Kellen spent 138 days on NICU in the Jessops hospital in Sheffield before being transferred to Sheffield Children’s hospital on 2nd March. He was doing well, we were hopeful, but a week later he developed 2 infections – 1 in the broviac line and a chest infection. For such a tiny baby it knocked him sideways, really struggling with his breathing and needing to be put back on high flow.

Surgery… again…

Recovering from both infections with the help of strong antibiotics, Kellen then needed yet more surgery. The broviac line he had had fitted in January stopped working and as his veins were still so weak the doctors had to fit another line to keep access. The surgeon carrying out the surgery also managed to reconnect his bowel back together at the same time. Which was a massive relief as it meant only one additional surgery instead of two.

A Little Super Star

Since the surgery took place on 11th April 2017 Kellen has done amazingly well! He is still in hospital after 6 and a half months, but he is on the right road. He is gaining weight, now weighing 5.4kg (11lb 14oz) and  has recently started bottle feeding. The nurses are looking to train me and dad up for his oxygen and tube feeding at home and although we haven’t got a date of when we can bring him home we are just so glad he has been able to fight through everything that has been thrown at him.

kellen 6 mths

Kellen at 6 and a half months old, although just 11 weeks corrected age

He truly is our little super star. 

Ganelle

One thought on “The Ups & Downs and Twists & Turns of NICU

  1. Lorraine

    Ah Ganelle, I am so sorry to hear of your loss but so much of what you describe we have experienced too! Our son was born at 23+6 a couple of October’s before your boys! He eventually came home after 8 months with low flow oxygen during the day, bipap overnight and his ng tube also. He was however fully breast fed during the day and weaned off his oxygen just after his first birthday! He’s now a healthy (just follow up for ophthalmology and kidneys) balance bike riding, smiley, happy 2 and a half year old! Despite all you’ve been through, a time will eventually come when it all starts to blur – until then look after yourself – that gorgeous boy needs you! 💜

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