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 Lenka and I decided our little family needed another mini Danson to complete the set. While I stayed home with our daughter 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 was three in there so being the intelligent person that I am I asked “three what?” “Three babies” she said. At this point I must have had looked like an idiot when I asked her to look again as if she didn’t know how to do her job. Tears of joy followed by fear then panic kicked in. This lasted about a week.
So now we reach 17 weeks and we receive shattering news that the boys have developed T.T.T.S (Twin to Twin Transfusion Syndrome). Basically all the boys are sharing one Placenta with their own separate sacks inside and instead of sharing all the nutrients and good stuff they need through their blood connections, two of them were donating but one was not returning the favour. This caused problems for all three with the recipient’s heart being over worked and the other two being under nourished. This is the point where they sit you down and discuss options and suggest 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 and has Lenka being 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 now we are being 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 begins many terrible jokes about me sewing areas closed to keep them in longer.
At 27 weeks Lenka is doing amazing, I start predicting how far we’ll make it before she pops. “34 weeks no probs” and then I decide the girls need to be treated like princesses so we end 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 boys sacks ruptured and so began the most terrifying rollercoaster I have ever been on.
We went to GC University Hospital for scans and confirmed that I wasn’t going to get the 34 weeks I had hoped for and 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’re hanging on by a thread trying to keep them inside for a few more days. 5 days later there’s room for us on the coast so Lenka is in her hospital limo and being checked back into GC hospital.
28 + 2 weeks, another scan and we are told “delivery will be later today”, 5 minutes later someone else comes in and “delivery will be in a couple of hours, before lunch” and then they come back with “dad grab your camera, it’s happening now!” this is the same point at which all of my nervous and or inappropriate jokes stopped completely and shock and panic took a front row seat.
It’s now the 28th of August at 10:40am and I’m looking down at 3 miracle babies that sounded like kittens meowing when they arrived. I don’t care how tough you are, this moment of hearing your bubs for the first time will make anyone cry. Noah was first out at 920grams, Lyrik was second at 1160grams and Phoenix last at 670grams. We get a very quick “hello welcome to the world guys” then they are rushed off to the N.I.C.U. (Neonatal Intensive Care Unit)where they were ventilated and connected to all 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 baptise him, we gave him a kiss, a final glance and then he is sent to the operating theatre. We are a mess and don’t know if he is coming back. Three hours of waiting and we get the news that everything went well and he is returned to N.I.C.U. with a stoma (part of his bowel is now on the outside of his body) but he is doing well. Surgery 2 is one month later and he has his bowel put back together. The good news is short lived when there is a complication and the bowel has a blockage that bursts. Surgery 3 has the surgeons go back in remove the damaged piece of bowel and sew the bowel back together but this also failed and burst again. Surgery 4, the surgeons are back to fix the bowel and repair a hole that the bowel caused on his liver. Phoenix now has a double stoma after his latest surgery, he is fed through a nasogastric tube this is then collected in the first stoma bag and then fed back into the bowel to promote function. Surgery 5 happened when the doctors couldn’t inject nutrients into his arterial lines due to his size so he had a ‘Hickman line’ inserted. Surgery 6 we’re back again putting the bowel back together and everything goes to plan.
We have come so far on this roller coaster we start to relax when things start looking good until we find out that Phoenix has a narrow airway that closes whenever he gets upset for any reason. After being resuscitated twice and needing adrenalin both times he is rushed to Lady Cilento Children’s hospital in Brisbane for Surgery 7 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 has 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 but we don’t sleep much these days. 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 that 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 that 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 realise how important it is to surround yourself with great people and luckily 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 so it’s safer not to start but I want you all to know that 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!
The Danson family xoxo.