I remember picking out paint for the nursery. It was a light grey. It was going to be a shared nursery and I was so excited we finally owned our own home and I was going to design the most darling shared nursery of my dreams. I was nesting and excited. Her name would be Cameran and we would call her Cami. My little Cami Cottontail. Then one night I had a preterm labor scare. Everything had been normal. They stopped the contractions but there was a mass on ultrasound. Her heart was out of place. It was her lung, a mass on her lung. It was a CCAM they said, the better option. We'd watch it and not worry. Long story short through many follow ups with a perinatologist we determined it was Congenital Diaphragmatic Hernia. I could spell it in my sleep. CDH. My heart broke, my blood ran ice cold, and I started to sweat. I remember going home and wrapping myself in the warmest blanket I could. I was so cold, yet sweaty and I had never felt that sensation before. I knew this disease from research. My days until delivery day were tough. Enough tears and enough tense worry that tested my sanity. This was my third pregnancy and it was supposed to be perfect. And it wasn't. I used to stand in my yard in beautiful Hawaii and look up at the sky. I felt safe there. I knew someday this would be over and I'd look up at the sky and be safe again. I just needed this little girl to be safe. I needed this little girl to be playing by the ocean, dresssed in pink, with pigtails in her hair. I needed to be strong. Luckily the wonderful man I married was strong when I couldn't be.
This is a CDH survivor story and I'm writing that for those parents out there that desperately need me to tell you her story. Your searching about ECMO, lung to head ratio, and all these syndromes. Ultrasounds are intense, and you don't know how you'll get through your baby shower. Would you rather have a good lung to head ratio? In the words of our surgeon HELL YES!!! Does it make any guarantees? No. So inform yourself and understand and at a certain point my advice is to get the hell off the internet. Things got scary three days after she was born, after the repair. The worst two weeks of my life. She was out in six. They go through so much and sometimes they have bad days. Their body is trying to heal in multiple areas and they have setbacks. It's not the birth story we dream of. But it's still our story. And we're still able to send them love and be present even though we can't touch them sometimes. You will know that bastard called pulmonary hypertension and you just need to stay the course mom. They in that little body are engaged in a war and they look so alone. Well they are not. They have an army around them at all times. They have angelic beings we call NICU nurses and gentle doctors, or very clinical doctors fighting along side them.. I found they all gave comfort in different ways. Cami was out in 6 weeks and did not need ECMO. Now they call is a mild CDH story. Isn't that funny. Mild. I hope this finds whoever needs this story the way I did. Because let's be honest, CDH research is depressing business a lot of the time. That is because survivors move on. They are out there, a lot of them. I'm sorry i'm 3 years late writing to you, I searched desperatly too. Cami is a handful and I've been so busy, a wild child with a rebel heart. I really hope tonight you have a peaceful night of sleep mom. You do your part til delivery day, that's all we can do. I wish you the best of luck and keep dreaming. Take those maternity pictures. My biggest regret is not. I also had another baby, our 4th. Pregnancy and delivery was smooth sailing.
