We were given a call to tell us that Noah is out of his operation and is now in NICU – Neonatal Intensive Care Unit. We rushed back to see our little fighter laying in his massive bed. There waiting for us was FR, the Interventional Radiologist who had done the surgery with a big smile on his face. This was the first time we saw him smile since the day we met, this gave me a huge relief immediately.
It was horrible seeing Noah the way he was. Puffy from all the fluids being forced into him, having the ventilator tubes down his nose and having all the machines around him. Noah has to be on a special bed that was used for neuro surgeries. This special bed allowed him to be at a 45 degree angle which helped drain fluid away from the brain.
We gave Noah a kiss and whispered “Well done, you brave little boy” and went to the family room to speak to the surgeons and doctors. They were really pleased with the operation as they had made good progress and blocked over 50% of the connections in the malformation, this immediately dropped the pressure in his brain, lowered his blood pressure and heart rate. We hoped that this will be enough for Noah to continue healing himself but another operation was needed in the near future, however, we were off to a good start.
Liv and I stayed at The Sick Children’s Trust house whilst Noah was in ICU as parents can’t stay overnight. The next day we woke early, grabbed a coffee and a pastry and walked briskly to the hospital. When we arrived, we were told that Noah had a good night and that they planned to remove the ventilator in a few hours time.
We were asked to leave but were invited back in a short time later. I was disappointed to see Noah still had the ventilator supporting him, the doctors were worried so they sent Noah for a CT scan. They were looking for any dramatic changes or bleeds in the brain. The results were positive, so the doctors agreed that Noah just wasn’t quite ready for it.
We were told this was going to be a rollercoaster ride, they were definitely right!
Later that day we had the best visitor possible, Theo! He was joined by Nana, Nanny and Granddad. Even being mid 20’s, I felt easier having my parents there. Seeing my mum and dad and receiving a reassuring cuddle was just so refreshing.
We took Theo into NICU to see his little brother, as soon as he saw him he shouted “NOAH!!” and ran to his bed. I lifted him up for Theo to give Noah a kiss. Seeing Theo’s love for his brother gave me goose bumps, he loved him so much.
The next day was Valentines Day, we definitely didn’t expect to be spending it in Great Ormond Street Hospital NICU, but we walked in to find a beautiful Valentine’s card addressed to “Mummy & Daddy” at the end of Noah’s bed from his amazing nurse, Lorna.
We also got the best present, as he opened his eyes for us today and made proper eye contact and had a good look around. He’s still extremely sleepy but it’s so good to see him moving around a bit. The aim is to take Noah off his ventilator tomorrow at some point as he’s doing well and everyone’s noticing that it’s starting to annoy him. We’ll just have to hope that he’s ready for it this time.
A Dad's Thoughts 