I am updating this post.
Tomorrow, March 8, is Gracie’s 11th birthday,there is a lot to celebrate, and reflect on.
Gastroschisis is currently “trending” on Facebook thanks to a new article that was published just a few days ago.
“In a report published Friday, the public health agency said that it found 30 percent more cases of the disease between 2006 and 2012 than it did from 1995 to 2005.”
In laymen’s terms, gastroschisis is a when a baby is born with his or her intestines (or other organs) outside their body.
My daughter, Gracie, was born with gastroschisis, and in April of 2015 she was diagnosed with autism.
Just like many stories, Gracie’s story does not start where you may think it would.
March 8, 2004 changed me.
Some parts of me were changed for the good. Some parts of me remained bitter.
I was 16 weeks along in my pregnancy. A pregnancy that I did not see coming, but we were so happy to welcome. My husband and I had heard the heartbeat, my belly was growing thanks to a healthy baby and perhaps one too many Big Mac’s. Of course there was the usual morning sickness, I was always tired, and maybe a little bit more moody than usual.
This was not my first rodeo. I had two older sons. This pregnancy should have been a piece of cake. In my mind I was a pro by now, except I was not. Nothing could prepare me for what was right around the corner.
It started with a cramp. As the day progressed so did the pain, and then the bleeding. I remember standing up and blood just came gushing out of me. It was not good, and if I were to be honest with myself, I knew what was about to happen.
I was rushed to the hospital. There was so much blood loss there was talk of possibly needing a transfusion. I was weak, I could not sit up without assistance, I knew I was losing my baby, along with my sanity.
A D and C was ordered, and it was horrible. I mean even in the best of circumstances D and C’s are not the most pleasant thing to happen, but mine was-there are no words to describe it. I not only lost a baby that day, I lost a piece of me.
My husband and I were told the usual “Oh, these things just happen” “Don’t worry, you can try again.” “It was nothing you did.” Many of you reading this, you know the drill. You have heard the same words I have.
I did not want to try again.
Four months later, I found out I was pregnant. “Are you freakin’ kidding me?” I did everything to make sure I did not get pregnant, well, everything except for that one important thing.
Being pregnant after a miscarriage is not easy. Because you know what happens? Every little ache, every little cramp, every time you throw up you just KNOW “This is it, I am having another miscarriage.” I hated it. I felt as if I was just passing the day just waiting for “IT” to happen.
When I had hit my 20th week, it was only then that I started to feel a tad bit better. I was well past my first trimester. The baby was kicking, and I thought “Okay, maybe this is it, maybe I really can do this.”
Except, I can’t.
I had my ultrasound. Again, I was a pro at this by now. I knew when the ultrasound tech would not answer my question “How does everything look?” that something was wrong. I am smart like that.
She played the ole “Let me get the Doctor in here to take a second look.” while assuring me “Everything will be okay.”
Did you notice what she said. She said everything WILL be okay, not everything IS okay.
The Doctor came in. Not my usual Doctor, he was off delivering a baby. Of course.
This new Doctor told my husband and I to go ahead and head over to my Doctors office which just happened to be next door, as my Doctor was on his way back to the office.
I cannot go through this again. It will break me. I am already broken. I cannot go through this again.
We made it to my Doctor’s office where we were quickly ushered into a secluded back room. My Doctor came in, wearing a very brave face, and then told us.
“Your baby has gastroschisis.”
and that is when everything changed, once again.
“What does that mean?”
“Will the baby survive?”
“How did this happen?”
“What do we do?”
I had about 500 questions, one after the other, not giving my Doctor a chance to respond.
“You will continue to see me, along with a specialist.”
“You will deliver at Mary Bridge as they have a NICU.”
“What the hell is a NICU?”
“I will monitor you every week, do not worry.”
“Of course I am going to worry!”
“You are my first patient with a gastro baby.”
“Kill me now!”
The next few months were complete hell. I was on bed rest. I had to count the kicks. I had to lay on my left side. I did not want to plan for anything, I did not want a baby shower, because I had no idea if this baby was going to make it. I did not want to talk about names, I just wanted to fast forward to April 8, my due date.
It was an almost perfect chilly Spring night in March. My older boys were doing their homework, my husband was in the kitchen cooking dinner, and I was laying on the sofa trying to count the baby’s kicks. Except…..there were no kicks. There had not been any kicks for a good few hours. I had done all the tricks. Orange juice, chocolate, changing sides, there were no freaking kicks, and once again, I knew, I knew this was it.
I had to go to the hospital. My best friend was gracious enough to take my older boys. I had no family here, no one to help me other than her. My husband and I made the 10 minute drive to the hospital. Of course he is driving like a maniac. I am looking out the window. Wondering, how I will be able to make this drive again without a baby. We past Jack N the Box, Taco Bell, Fred Meyer. All places I knew I would never be able to go to again because I was going to lose this baby, just like I did the last.
They had a room ready for me. I was immediately connected to all these machines. I was told to “try to get some rest.” Okay, really?!?!?! I cannot sleep, the last thing I want to do is sleep. I just need to know this baby is okay. A baby girl. A baby girl that I could not even name because I did not think she was going to make it. They want me to sleep? Well I want a million dollars and I say the odds are just about the same.
There was no movement. I had to be prepped for an emergency c-section. I was not even in the hospital I was suppose to deliver at. That hospital, the with the NICU was too far away. When I could not feel any movement, we just went to our local hospital-the hospital where my doctor worked out of.
I remember asking the nurse if I was going to die. I told her I had two older boys who need a mom. All I knew was I had, or the baby had, or someone had Sepsis, and that was not any good. So, I asked the nurse if I was going to die. She started to cry. She told me under no certain terms will I die. I asked her if my baby was going to die. She could not answer me.
My doctor comes in to check on me. He assures me that even though he has never delivered a baby with gastroschisis, he will have my specialist on the phone talking him through it. Okay really? Am I on an episode of Grey’s Anatomy?? Why am I even in this hospital? Why not transfer me to the hospital that is better equipped for these “gastro babies?”
There is not enough time.
“As soon as I get the baby out, she will be transferred by medic to Mary Bridge, your husband can follow them, you will be here recovering. I have the medic team outside, would you like to meet them?”
I cannot do this. I do not have the strength to do this. I just want to close my eyes and everything will be okay.
The medic team was a team of eight. These eight people, people whom I have never met. I have to trust these strangers to get my baby to Mary Bridge in time. To save her life.
“I just want you to know that our number one priority is your baby. We will do what it takes, your baby is in good hands.”
And then, I was taken to surgery.
I could not even see her when she came out. My Doctor had her in his arms, and the other Doctor had her intestines in her arms. She was placed in a body bag, to protect her intestines, and that was it. My husband was on his way. That was the plan, no matter what, she cannot leave our sight.
I woke up in recovery about two hours later. My husband was back. He had a picture of the baby. Of Gracie. Because, by the Grace of God, she survived. I survived. He showed me the picture and I did not know what I was looking at. All I saw was her intestines-but she was alive.
Gracie was born on March 8, 2005.
One year to the day of my miscarriage.
March 8, 2005 changed me.
And now, the journey had just begun.
Tomorrow, March 8, Gracie will be 11 years old. In six months she will begin middle school, which I am sure will bring on a whole new set of problems,concerns,and most importantly victories.
As a mother, I have guilt. I will always have guilt. I do not know why this happened, and I most likely never will, but the biggest thing I have learned on this journey is I cannot expect Gracie to be something she is not,she will learn differently than other kids, and it is up to me as her advocate, as her mother, to find her the best team out there that is willing to teach her, that is willing to fight for her just as much as I am.
Gracie, if one day you come across this post, just know that your dad and I loved you from day, and we will fight for you to the end.
No matter what.