I kind of vaguebooked yesterday about what was going on and why I was at the LUMC, and also to my friends who mentioned that I didn’t sound ok with what happened yesterday – I want to reassure you I am fine. Thank you for the messages and the love xx
As you all know, I am pretty passionate about raising TTTS/TAPS awareness. (just in case you missed the past 3 years or so of my life). My goal has always been about helping others – providing links to good, accurate information, to raise awareness that this disease exists, to be a voice for those affected and a listening ear to those who want to talk.
I went back yesterday to talk with some of the staff I know there about helping with patient support – a main goal of getting the amazing information that’s available in Dutch into English as well (Trust me, the Dutch information is good) but also to get more informations about procedures and processes available to patients – simple stuff like why your ultrasound takes forever and what sort of measurements they’re doing. This was met really well and it looks like wheels are turning.
My second aim was to also discuss a patient network – people to have a cup of coffee with and to open discussions about their stories – successes and tragedies. If you are reading this and you would like to connect, email me via inbuggeringdiaries (at) gmail.com.
The reason I came back so drained is that even though the LUMC saved my girls lives, it’s hard. Walking back through the doors opens a floodgate of emotions. A massive wave of fear, dread and pain still overwhelms me when I walk in. It’s crippling at times. Even though I got the best possible outcome, the demons of the past will still haunt me. It’s still hard to hear about a flawless twin pregnancy, the sounds of the NICU still ring in my ears, and the fear of the unknown with TAPS will always be there. I honestly struggled to hold in tears yesterday, because I was flooded with so many emotions and so overwhelmed even though I am the success story.
I faced some of my demons yesterday.
After my meeting with the amazing Dr Slaghekke, (sorry, Enrico, I didn’t tell you I was coming!) she offered to take me around the new NICU and the new delivery suites. It was surreal. I even walked in the room that I was in just before the girls were born, where I battled the news that things weren’t so good, and that we were being scheduled for delivery. In the NICU, I saw the huge changes, including the new facilities for parents to stay with their babies – seriously, some amazing and needed changes have happened. It’s still raw walking in and seeing a humidicrib and hearing the sounds of neonatology. Walking out of the hospital without my babies every day was one of the hardest things I’ve ever done. Watching your phone at night and calling the nurses at 2am because you just needed to know they were ok. Sleeping, but not sleeping, with your phone by the bed in case the worst happened. Endless doctors appointments and therapies. Watching medical procedures on babies so tiny that they don’t even fit dolls clothes. Endless hours spent sitting attached to a breast pump so you could give your babies something, because you had nothing else to give. Infusion lines larger than your child’s hand. Blood transfusions and antibiotics. Watching nurses stimulate your child out of a bradychardia episode yet again, her tiny face grey and limp. Another ultrasound, another MRI, another transfusion.
A sense of failure as a parent because you failed to protect your children from what can be a fatal diagnosis – even if there is nothing you can do to prevent it.
I know some people don’t believe the level of anxiety and stress that we went through in the pregnancy and delivery and NICU time. I know some people think I should build a bridge and get over what happened – after all, it’s almost 4 years ago now. I got the best possible outcome! My girls are survivors of a disease that we are only just beginning to understand – time to be grateful and move along. There are countless nights where I sat and cried and didn’t have anywhere to turn. There are deep scars in my heart and my mind from the depth of the wounds from TAPS.
But there’s too much else behind the scenes. What if someone else comes along, like me, who didn’t speak so much Dutch and who was far from family? What if there was excellent information out there, only it’s in another language or it’s too technical to read?
What if they had have let my girls go to 34 weeks and it turned out that it was a bleed on Tilly’s brain? What if I hadn’t have gone to the LUMC and had dopplers done (Incidentally, this is the research that saved my girls lives- and yet it isn’t a compulsory test in the Netherlands)?
What if … ?
What if someone loses hope because they don’t know the questions to ask, or that they have someone willing to come have a cup of coffee and a chat?
What if?
WHAT IF? is still a question that is happening. Someone needs to try to change this. I want to say “I tried”. What I really want to get out of this is “I succeeded!”.
So I’m afraid I have an announcement to make. I’m still going to battle my demons at the LUMC (Not you, Enrico. You’re awesome. The placenta thing is still weird though 😉 ). I’m still going to talk and write and publish and speak until my fingers are tired and my voice runs out. I’m still going to fight for awareness and education. I’m going to get more information out there in Dutch and English. I’m going to be a support for those diagnosed. And I’m going to make sure you will feel like you have a friend.
For all those who have lost a child/children to these diseases, I’m going to also speak for you. Awareness is the key, and I hope that we can help unlock the doors together.
I’m not giving up without a fight. My kids taught me that, and it’s a good lesson.
I’m trying. Maybe one day that’s going to be – I succeeded! For now I’m happy with trying.
Thank you to my friends for caring, yesterday. Your support whilst I’m trying to do this is so amazing.