I never got to update during Kylos urgent as it was a very busy and rough 3 weeks.
Kylo had his surgery at 6 days old, this took approximately 6 hours and we got updates from the nurse as things progressed. They used donor tissue to patch his hypoplastic aortic arch and closed an ASD. The surgery went well and we got nothing but possitive updates during the whole thing.
That was the hardest day of my life! The worst was having to kiss him goodbye and watch him get wheeled off to surgery. Poor little guy had no idea what he was in for. My partners step-brother and his fiancé had us over for the whole time Kylo was in surgery, which was great because they got our minds off things.
Once we got the call that Kylos surgery was done we said our goodbyes and headed back to the children’s hospital. I was sobbing the whole way there because I was just glad it was over and it went well. My partner held my hand and assured me everything was just going to get better. I admired him greatly that day as he really did keep his cool and didn’t break once. He really was my rock and was strong for us both when I couldn’t be.
When we saw Kylo, he was much different from the bub I was use to seeing. He was hooked up to all these pumps, had tubes coming out of his belly. He was swollen. Sedated. Not the baby I remember. It was rough. I was glad he’d never remember this. We sat by him for a long time and the nurse had arranged us a room at the Ronald McDonald house a few levels up from Kylo.
Day 2 & 3 thin gs started getting better. His drainage tubes were out on day 2 and by that night they had taken him off ventilation. Day 3 we went to see him and to our surprise he was hooked up to a breathing machine that looked terrible.. he was awake and had this white beenie on, with what looked like a snorkel jammed up his nose! To top that off, the beenie had a dummy/pacifier strap that just jammed the dummy in. I soon learnt this was called “bubble c-Papp”. The purpose of the pacifier/dummy being in his mouth was so he didn’t breathe through his mouth. In order for this machine to work, he had to breath through his nose. My poor darling was letting out cries of misery and I couldn’t even pick him up. I grabbed his hand and ensured him this was only temporary. Day 4, we got a call early on in the morning saying his breathing had worsened and they did x-rays. There was fluid in his lungs and our poor guy had developed pneumonia. We rushed up to see our little guy right away. The doctor said he may need to be reventilated at some point and we assured them to do what they needed to, to make him better. We went out to lunch hours later and received another call. They were informing us that it was in Kylos best interest to be reventilated, we agreed and they did this while we were absent. The next two days were great. Kylo was getting better. By day 8, he was back on c-pap and all his stats were looking great. My partner and I headed home on day 9 to grab a few things and see our daughter, another call came through as we were halfway home. Kylo was doing so well they were moving him from PICU back to NICU.
Kylo spent another day on c-pap before going on hi-flow (which the nurses said he didn’t even need!). He was transferred to nursery 2 days later.
There he lay in nursery with only his monitors on. A baby with hardly anything, I was just so use to seeing him with all his tubes, wires, cords. Our last goal was to get the feeding tube (NG) out and get him fully off morphine. We developed a breast and bottle feeding combo to get his weight up and he was fully off morphine by the 23rd December. We had hopes of bringing him home on the 24th but the doctor wanted to keep him one more day to ensure he wasn’t having morphine withdrawals. After being in hospital for almost 3 weeks, we just wanted our baby home..
There is a lot more to the story but on Christmas morning, we got to bring our little Kylo home. The best Christmas gift we could ask for. He got to meet his big sister too which is a memory I’ll forever cherish.
Kylo has since been for his regular checkups, he’s been given an all-clear for 6 months (after two echo scans). His cardiologist is amazed with his repair and confident Kylos heart is continuing to grow and work well with him.
He’s just turned 3 months old and is just the most amazing little bub in my life. You would never know from just looking at him, what he’s been through.
Through the hard times in hospital, I’d always tell him it was only temporary. And when I got to bring him home, I said to him “I told you this was only temporary.”
I feel for those who have to go through what we did but our babies are so resilient. If you are reading this and going through similar, I wish you the best of luck! Just hang in there and be strong.