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A Dad's Perspective on Having Triplets and a Medically Fragile Baby

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As it is difficult for me to tell our story to anyone, I thought this would be much easier to get it all out without letting emotions get the better of me, apparently having kids strips away your hard shell very quickly.

Our journey began early in 2015 when my wife, Lenka, and I decided our little family needed another mini Danson to complete the set. While I stayed home with our daughter, Kaitlyn, to play with dolls and explore everything I could learn about princess games, Lenka went in to get her first ultrasound. Then I got the phone call, Lenka was crying and my heart sank thinking the worst when she said I need to get there now! I jumped in the car with Kaitlyn and rushed down, walking in the door shaking, I found Lenka still getting scans. Confused, I slowly walked over and was told there were three babies. I asked the technician to look again, as if she didn’t know how to do her job. Tears of joy followed, then fear, then panic kicked in. This lasted about a week.

At 17 weeks we receive shattering news that the boys had developed Twin to Twin Transfusion Syndrome (T.T.T.S). Basically all the boys shared one placenta with their own separate sacks inside, and instead of sharing all the nutrients and good stuff they needed through their blood connections, two of them were donating, but one was not returning the favor. This caused problems for all three babies, with the recipient’s heart being over worked and the other two being under nourished. This is the point where they sat us down and discussed options and suggested a reduction, “Not a chance in hell!” and “take what you need from me” was my response. Clearly, I’m not a doctor, but how do we explain to two boys that they were meant to be triplets and we decided a “reduction” would be easier.

The next step in our journey was at 18 weeks. Lenka was shipped to Mater Hospital in Brisbane to have laser surgery to burn the vessels between the babies to stop T.T.T.S. This was a success, and we returned to GC hospital with news that after the surgery, most patients only last about 10 more weeks before they need to deliver. This would put us at 28 weeks and so began many terrible jokes about me sewing areas closed to keep them in longer.

At 27 weeks Lenka was doing amazing. I started predicting how far we’d make it before she popped: “34 weeks no probs.” Then I decided my wife and daughter needed to be treated like princesses, so we ended up being looked after like royalty at the Surfers Paradise Marriott for a couple of nights. Looking back, I’m glad we did this, because on the second day one of the boy’s sacks ruptured and so began the most terrifying rollercoaster I have ever been on.

We went to GC University Hospital for scans, confirming the 34 weeks I had hoped for were not gong to happen. Lenka was again in an ambulance, this time on her way to the Royal Women’s Hospital in Brisbane because no other hospitals had enough humidicribs for three babies. Basically we were hanging on by a thread, trying to keep them inside for a few more days. Five days later there was room for us on the coast, so Lenka was in her hospital limo and being checked back into GC hospital.

At 28 weeks plus two days we had another scan and we were told “delivery will be later today.” Five minutes later someone else comes in, “delivery will be in a couple of hours, before lunch.” Then they came back with, “Dad grab your camera, it’s happening now!” This was when all of my nervous and inappropriate jokes stopped completely and shock and panic took a front row seat.

On the 28th of August at 10:40 a.m. I looked down at three miracle babies who sounded like kittens meowing when they arrived. I don’t care how tough you are, the moment of hearing your bubs for the first time can make anyone cry. Noah was first out at 920-grams, Lyrik was second at 1160-grams and Phoenix last at 670-grams. We got a very quick, “hello welcome to the world guys” then they were rushed off to the NICU where they were ventilated and connected to life support equipment. Lenka was taken to a recovery ward and I have no idea what I was doing at this point.

Not long after our first big day of OMG moments, we hit our next obstacle. Phoenix, at 15 days old, had an infection and we had to send him to his first surgery to remove a section of his bowel. This was terrifying and very hard to process at the time. From the beginning, we were told the odds of surviving the surgery were so low that we needed to be prepared for the worst. I’ve never felt so empty and helpless as I did at this moment. Our view on religion changed in an instant, and we had the hospital priest baptize him. We gave him a kiss, a final glance, and then he was sent to the operating theatre. We were a mess and didn’t know if he was coming back. Three hours of waiting and we got the news that everything went well and he was back in the NICU with a stoma (part of his bowel was now on the outside of his body) but he was doing well. Surgery two was a month later to put his bowel back inside. The good news was short lived as there was a complication and the bowel burst from a blockage. Surgery three had the surgeons go back in to remove the damaged piece of bowel and sew the bowel back together, but this also failed and burst again. Surgery four, the surgeons went back to fix the bowel and repair a hole that the bowel caused on his liver. Phoenix now had a double stoma after his latest surgery, he was fed through a nasogastric tube that went in the first stoma bag and then fed back into the bowel to promote function.  Surgery five happened when the doctors couldn’t inject nutrients into his arterial lines due to his size so he had a “Hickman line” inserted. Surgery six was another effort to put the bowel back together and everything went to plan.

We had come so far on this roller coaster; we began relaxing when things start looking good. Then we found out Phoenix had a narrow airway that closed whenever he got upset for any reason. After being resuscitated twice and needing adrenalin both times, he was rushed to Lady Cilento Children’s Hospital in Brisbane for surgery seven to check obstructions in his airway. Luckily, his airway was just irritated and began fixing itself as he grew. During this time in hospital, he also had a couple of procedures where he had eye injections to help fix his sight.

So where are we now? It’s actually a pretty good question with answers that may seem vague. Phoenix is back on the coast looking better every day and will be coming home very soon. He will come home with oxygen, a nasogastric tube, the Hickman line and an injection line so we can give him his medication at home. But the important thing is that he will be healthy, happy, and surrounded by people who love him 24 hours a day.

That’s a brief version of our story so far. A story that although interesting, will bring a tear to my eye every time. Many people from far and wide have come forward to help us, and the support we have received is overwhelming. It was a very proud moment knowing I was part of a company full of some amazing people. How does one say thank you to all these people who will probably never fully understand how grateful we really are. I guess I will reuse my quote from another page.

It’s not until something terrible happens that you realize how important it is to surround yourself with great people. Lucky for us, we seem to have held onto friendships with the most amazing, beautiful, thoughtful, brilliant and generous humans we know. There are far too many people to mention, but I want you all to know your support is what is keeping our faith in humanity strong. We love you guys.

If you see us cruising around anywhere, come and grab your free hugs!

Follow this journey at The Danson Clan.

Originally published: April 10, 2018
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