We're a family just like you.
My husband and I had two kids, busy schedules, never-ending laundry, long to-do lists... and a new precious little baby with a colostomy.
Our stories may be a little different, but we're both chugging along doing the best we can.
Believe me, when I entered the doctor's office that day and learned I would be induced immediately, I thought that was the scary part. I knew that there was a "chance" that something wasn't right due to several ultrasounds my doctor kept ordering in my third trimester. But at each ultrasound, the technician smiled at me and pointed out all the "healthy stuff". Sure, we were "watching" this one little thing... but perhaps it was nothing. They saw "a little extra fluid in one kidney" and that my baby's colon was dilated. How much? A little more than normal.
"We're going to keep an eye on it," they said.
Then, at 37 weeks, they sent me to a teaching hospital almost 7 hours from my home to get a third opinion. Because IF there was a problem, our mid-sized city with two large hospitals didn't have the right doctors or care my baby would need. DON'T THEY KNOW how frightening that is to hear? Oh, and my appointment at the specialty hospital was marked "urgent".
When I arrived at the specialty doctor's office, I was still optimistic that this would all be the result of an inexperienced sonograph tech who just didn't know what they were looking at. But I admit, I had already Googled every possible thing related to "extra fluid' and "dilated colon". The list of possibilities was overwhelming and self-diagnosing was driving me to insanity.
My final ultrasound was performed. "Wait here," she said. Wait? Wait?
Finally, the doctor came in. I'll never forget what he said, "So, you're 37.5 weeks? Well, guess what? You're having a baby today."
Like now? As in, right now?
They plopped me in a wheelchair and wheeled me over to labor and delivery. Within hours, I was induced and delivered my sweet baby boy. As they placed him on my chest– he. looked. perfect. He's crying. He's pink. He has all his fingers and toes... but he's missing his bum. Well, technically, just the anus. They didn't tell me the medical term right away. I guess they were trying to be personal. Imperforate Anus. It sounds so harsh anyway.
You know those "labor plans" that women make... soft music, dim lights, deliver in this position... well, all I wanted was to nurse my baby within the first hour of life. I wanted that intimate bonding moment. Instead, they told me I could only hold him for a little bit... until they whisked him away for scans, tests and the worst thing of all– surgery.
While I held him, the doctor whom I'd never met until that moment, explained that Imperforate Anus was typically accompanied by other birth defects. This non-random association of defects included issues with vertebrae, esophagus, cardio, trachea, renal/kidney, and limb malformation. This was more than I could take in. I counted his fingers and toes again in my head. He was breathing fine. What were they talking about?
It's called VACTERL. An acronym for the defects. Some babies are born with every defect associated, while others have only three. I never thought I'd say that my son was LUCKY to have only some mild aspects of VACTERL. Further testing and scans showed that he has some vertebral anomalies in his lower spine, ASD in his heart, some kidney concerns, and of course, imperforate anus.
He required immediate surgery at 1-day old. I was a sobbing mess. I remember the medical students who accompanied the residents looking at me unsure of what to say. I must have asked a million questions. The hardest thing I've ever done is sign surgery and anesthesia consent papers for my newborn son.
The following weeks in the NICU were an intense learning experience. I wasn't a stranger to the NICU. My firstborn son entered the world prematurely 6 weeks early for unknown reasons. I spent 3 weeks living in the parking lot of that hospital when he was born. He was mostly a "feeder/grower" as the nurses called these babies. That was hard. THIS is hard.
Thank goodness for the Ronald McDonald House Charity. My husband and I stayed there for 3 weeks while our son recovered from his first surgery– a life-saving colostomy. Then, a second surgery due to wound complications and more tests. Finally, after nearly a week, they let me nurse him. He latched on like a champ! But they'd only let him nurse a minute or two every several hours. We had to make sure his tummy could handle it. It was too soon. Regress.
We spent every day from 7am until midnight next to his isolette. I left only to pump my breastmilk and eat a quick bite in the hall outside the NICU.
Finally, he was nursing well. We'd learned how to change a colostomy bag. We could take him home.
Our first colostomy bag change outside the hospital happened in a Fred Meyer grocery store parking lot half way home on our 7 hour drive. We CAN do this.
The weeks that ensued were sleepless... not just the usual "new baby" sleepless, but full of worry, questions... what if? What next? How?
Our wonderful surgeon and nurses answered questions via email and phone. I found support groups on Facebook, resource websites... but most importantly, I found confidence in our future.
Our son is still a baby... we are learning more every day. I will continue to add to this website as our journey continues...
______________________________
For our personal privacy, I have not included our names or location. If you would like to get in touch with me. Please use the "Send a Note" form.
Our stories may be a little different, but we're both chugging along doing the best we can.
Believe me, when I entered the doctor's office that day and learned I would be induced immediately, I thought that was the scary part. I knew that there was a "chance" that something wasn't right due to several ultrasounds my doctor kept ordering in my third trimester. But at each ultrasound, the technician smiled at me and pointed out all the "healthy stuff". Sure, we were "watching" this one little thing... but perhaps it was nothing. They saw "a little extra fluid in one kidney" and that my baby's colon was dilated. How much? A little more than normal.
"We're going to keep an eye on it," they said.
Then, at 37 weeks, they sent me to a teaching hospital almost 7 hours from my home to get a third opinion. Because IF there was a problem, our mid-sized city with two large hospitals didn't have the right doctors or care my baby would need. DON'T THEY KNOW how frightening that is to hear? Oh, and my appointment at the specialty hospital was marked "urgent".
When I arrived at the specialty doctor's office, I was still optimistic that this would all be the result of an inexperienced sonograph tech who just didn't know what they were looking at. But I admit, I had already Googled every possible thing related to "extra fluid' and "dilated colon". The list of possibilities was overwhelming and self-diagnosing was driving me to insanity.
My final ultrasound was performed. "Wait here," she said. Wait? Wait?
Finally, the doctor came in. I'll never forget what he said, "So, you're 37.5 weeks? Well, guess what? You're having a baby today."
Like now? As in, right now?
They plopped me in a wheelchair and wheeled me over to labor and delivery. Within hours, I was induced and delivered my sweet baby boy. As they placed him on my chest– he. looked. perfect. He's crying. He's pink. He has all his fingers and toes... but he's missing his bum. Well, technically, just the anus. They didn't tell me the medical term right away. I guess they were trying to be personal. Imperforate Anus. It sounds so harsh anyway.
You know those "labor plans" that women make... soft music, dim lights, deliver in this position... well, all I wanted was to nurse my baby within the first hour of life. I wanted that intimate bonding moment. Instead, they told me I could only hold him for a little bit... until they whisked him away for scans, tests and the worst thing of all– surgery.
While I held him, the doctor whom I'd never met until that moment, explained that Imperforate Anus was typically accompanied by other birth defects. This non-random association of defects included issues with vertebrae, esophagus, cardio, trachea, renal/kidney, and limb malformation. This was more than I could take in. I counted his fingers and toes again in my head. He was breathing fine. What were they talking about?
It's called VACTERL. An acronym for the defects. Some babies are born with every defect associated, while others have only three. I never thought I'd say that my son was LUCKY to have only some mild aspects of VACTERL. Further testing and scans showed that he has some vertebral anomalies in his lower spine, ASD in his heart, some kidney concerns, and of course, imperforate anus.
He required immediate surgery at 1-day old. I was a sobbing mess. I remember the medical students who accompanied the residents looking at me unsure of what to say. I must have asked a million questions. The hardest thing I've ever done is sign surgery and anesthesia consent papers for my newborn son.
The following weeks in the NICU were an intense learning experience. I wasn't a stranger to the NICU. My firstborn son entered the world prematurely 6 weeks early for unknown reasons. I spent 3 weeks living in the parking lot of that hospital when he was born. He was mostly a "feeder/grower" as the nurses called these babies. That was hard. THIS is hard.
Thank goodness for the Ronald McDonald House Charity. My husband and I stayed there for 3 weeks while our son recovered from his first surgery– a life-saving colostomy. Then, a second surgery due to wound complications and more tests. Finally, after nearly a week, they let me nurse him. He latched on like a champ! But they'd only let him nurse a minute or two every several hours. We had to make sure his tummy could handle it. It was too soon. Regress.
We spent every day from 7am until midnight next to his isolette. I left only to pump my breastmilk and eat a quick bite in the hall outside the NICU.
Finally, he was nursing well. We'd learned how to change a colostomy bag. We could take him home.
Our first colostomy bag change outside the hospital happened in a Fred Meyer grocery store parking lot half way home on our 7 hour drive. We CAN do this.
The weeks that ensued were sleepless... not just the usual "new baby" sleepless, but full of worry, questions... what if? What next? How?
Our wonderful surgeon and nurses answered questions via email and phone. I found support groups on Facebook, resource websites... but most importantly, I found confidence in our future.
Our son is still a baby... we are learning more every day. I will continue to add to this website as our journey continues...
______________________________
For our personal privacy, I have not included our names or location. If you would like to get in touch with me. Please use the "Send a Note" form.