After 2 or 3 postings I decided I hadn't really earned the right to document what I was feeling, after all, Roman wasn't even born yet and I was still sorting out my emotions.
6 months later, I feel I have earned the right to share our experience. In fact, I feel like I need to.
My name is Erica Potter and on April 8th, 2009 I delivered via C-section our son, Roman. He was born with blue eyes, a full head of dark brown hair, and spina bifida.
Two weeks prior to his birth my husband and I were spending a day at the doctors. A few unsettling symptoms awarded us with a last minute ultrasound to have a peek at our little guy. we didn't complain, we loved peeking in on him.
I should mention we have a daughter, Isabelle, so peeking in on babies in my belly is a hobby we have long adored.
After our U/S (ultrasound) the tech asked us to wait downstairs by the radiologists office. Okay...that's new....I'll admit, we were holding hands and joking outside the office...We weren't scared...
After about 30 minutes of cracking jokes with my hubby the radiologist comes out and asks us to report back to the doctors office.
This time...we were worried.
I remember calling my mother and telling her that my fluid was probably low and that they'd probably want to take him early. I was kind of excited, I was so ready to meet him.
She was excited, too.
They were waiting for us when we walked in, the receptionists didn't even let us sit down, they just shooed us to the office.
I mean come on guys, it's just low fluid, happens all the time.
When we walked in, the doctor and our midwife rushed right in behind us and closed the door.
"The ultrasound showed something very unexpected, your baby has an apparent meningocele and mild hydrocephalus"
I'll never be able to explain that silence again, it was just moments, I know, but it felt like hours and it hurt. The silence was actually painful. I was crying, and I remember I just wanted the doctor to answer all of my questions..because I didn't know how to.
I don't even know what the hell this guy just told me, but I'm crying. And the midwife is rubbing my shoulder...I remember the only thing I wanted was for her to stop touching me. Then I spoke...
"What does that even mean? What's wrong with my son?"
"It's a hole, in your sons back and he'll probably need a wheelchair to get around. hydrocephalus is also known as "water on the brain" he'll probably have some level of retardation."
As if that wasn't a crushing enough blow, he went on to add, "You can not deliver here."
Now, if you don't pity us after that, the next part still baffles me.
He puts his phone on speaker and dials a number, asks to speak to another doctor, explains our situation and the doctor says, "What kind of insurance do they have?" After the grim reply of "none." he said, "don't send them here, waste of their time and ours." and that was that. Our doctor had just moments before told us our son would need a serious surgery after he was born, now I have to worry that no doctor will give it to him?
We found a doctor, at a hospital 2 hours away...he saved us.
Now, to speed things up:
Roman was born 2 weeks after his diagnosis. It was the most incredible thing ever. I could hear him crying before he was out of my body. Maybe it sounds trivial to you, but to me? That's something Roman and I will always have. I was the first person in this whole world to hear him.
He went to the Nicu. I didn't even get to kiss him goodbye(or hello) They rushed him away and I didn't get to see him until 4 hours later. But when I did, the nurse helped me hold him. His back was still open, so she laid him on my lap and I held his head in my hands. It was just for a moment, but it was amazing. I was so scared...of what? an adorable baby? He was perfect.
The next day he had surgery to close his back. A week later he had surgery to re close his back.
I met a husband and wife in that nicu, they had lost one of their severely premature triplets and the husband said to me. "This place is a battle zone. Every day I have to fight back the urge to tell these people to stop hurting my baby. stop poking them, stop waking them, stop making them cry, you're hurting them."
He was right. The nicu is the scariest place I have ever been. It's just a sea of teary-eyed parents staring in confusion at all these little broken babies. Roman was the fattest baby there. He was also the only baby with spina bifida.
Two weeks later we came home!
Which also meant that Isabelle got to meet her brother. She held him and said, "he's such a cutie" She was so proud of her brother. We are so proud of her.
I'm sure the day will come when Izzy and Roman have their first fight. But, the way they love each other now reassures me that no matter what happens, they're going to be best friends forever.
We were home for four days when Roman's back started to leak cerebral spinal fluid (c.s.f) We went to the emergency room on a Saturday night and Sunday morning Roman had his shunt.
Not many things are more sad in this world, than a baby with a freshly shaven head. We had no choice, we had to give him a mohawk. He's so hardcore!
After a week, we were home!
After a month of being home I was able to stop worrying. we played and had fun. We got into a routine. Isabelle loved introducing her little brother and became my little helper. Have I told you lately, how proud of her we are?
Through some questioning and insisting I got Roman an appointment with a pulmonologist. His breathing was very raspy and it made me nervous. Everybody kept saying it was just from being intubated 3 times so close together. Well, several months went by, momma ain't buying it!
I remember we were all out at a festival when our pulmonologist called us. I couldn't hear her very well and she was explaining heart defects to me. I waved for my husband to head to the car, while he loaded the kids I sat on a bench while the doctor told us that Roman has a congenital heart defect called a "double aortic arch" or "vascular ring"
I should mention now, that I have an amazing best friend. One who has a "special needs" son, she's helped me more than she'll ever, ever know. She talked me down from my hysterics, and until we had more information I stayed quite composed. Thank you, Jessie.
A few weeks later we went to the emergency room. Roman had a coughing fit that had really shaken me. The next day our pulmonologist told us to come back, she has a bed ready for us.
When Roman gets admitted into his own little sad room, I flop down and wonder how long we'll be there. I miss my daughter, I miss our normalcy. I'm sad for my son and I blame myself for every ounce of pain he's had to endure. It's a level of depression and guilt that I don't want to ever feel again.
He was scheduled for heart surgery in one week. But he wasn't doing good. By day two he was moved from the children's ward to the picu (pediatric intensive care unit) He was in an oxygen bubble, he was being pumped full of who-knows-what and he was miserable.
We wear gearing up for the weekend. His surgery was first thing Monday morning and we wanted to make sure everybody got to sneak in and see him. (Even Isabelle) But, that Friday he had a long coughing fit that made him turn blue. His trachea was in danger of collapsing, he couldn't breath. They fit him in on Friday..he officially added heart surgery to his list of scars.
We came home a week later.
I feel like it's taken me months to enjoy Roman as a red-cheeked, playful baby. I used to walk on eggshells around him. I can proudly say that I'm not afraid of my baby, I'm not afraid of spina bifida and I am still absolutely horrified of his shunt. HEY! It's a work-in-progress.
Now, after all this sad talk I could use some cheering up, you?
I feel much better.