Well, hello everyone. I seem to be back. For who knows how long this time since I’ve practically been MIA for god knows how long. I know, I know. I suck at keeping the people informed, so maybe politics would be a suitable career option. Well, to keep on track, I guess I could start by informing you all that I have had my ileostomy bag removed this previous April 2019. Making it a total of 4 months with the poop bag. It was a hell of a time, but we just had to part ways. A difference in feelings, I suppose. Since then, I’ve gotten engaged, and am also roughly 23 weeks pregnant. Sadly, my knowledge of health issues and medical terms have seemed to have grown since we last spoke.
HYDROCEPHALUS: a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.
In November 2019, when I was 21 weeks pregnant, I went for my midterm pregnancy ultrasound screen. Which is basically where you lay for an hour on the ultrasound bed and they scan your belly to see if there is anything not growing properly. I hadn’t thought anything of it, due to the fact that I have a healthy two year old son at home and despite my Crohn’s, I’ve had no issues. My family, has had no issues either, besides a lot of cancer. Afterwords, I was told to wait in my Doctors office. Which let me tell you, my OB is absolutely outstanding. He gave both my fiance and I his personal phone number in case we need to reach him, he’s contacted better GI doctors for me and already has a prescription on order for me for after I give birth to help with my depression. He’s great. Well he comes in, and basically throws all these medical things at me that he admits he doesn’t fully understand either, and tells me that the baby seems to have excess fluid in his brain, called hydrocephalus. Hydrocephalus is common in downs syndrome babies, but also can just be by itself. It basically is just too much fluid, causing it all to be very squished in his head. Because of this, when he is born, he will need a shunt placed in his brain, to his stomach, to drain the fluid. The shunt will be there his whole life. The surgery though, could take place up to 6 months after he is delivered.
DOUBLE BUBBLE (Duodenal Atresia): When part of the bowel fails to develop normally in the fetus, a blockage of the duodenum can occur, otherwise known as an atresia or bowel obstruction. http://childrens.memorialhermann.org/services/duodenal-atresia/
Now, after this appointment, he sent me to a high risk OB – or MFM, if you will. There, they did yet another hour long ultrasound where not only was the hydrocephalus found, but along with some other concerns. The first being, what is called a Double Bubble. I still am having trouble understanding what exactly a double bubble seems to be. But from what I gather it’s just a problem with the bowels. What they had said is that if the baby is not able to poop, or is vomiting more than he should after being born, they will need to go in, do a surgery where they remove a part of his intestines and yep, you guessed it, place a temporary ileostomy bag. Ironic, I know. Between 1 in 1,000 and 1 and 5,000 babies have this issue when born. Another thing noted was that this is yet another problem which occurs with downs babies.
They also noticed that his heart had a defect. In January 2020, I will be seeing a fetal cardiologist who will do a 2-3 hour ultrasound to listen and observe his heart function. The defect, is a mystery, as they were not able to confirm what it was. But guess what? Another issue down’s babies seem to have. He also seemed to have some minor issues which can be fixed when he’s born, but one thing they could absolutely confirm, none of these things are from my Crohn’s, my food poisoning I had a week prior, or anything I could have done to possibly impact it. It’s all just because the wrong sperm went to the wrong egg. Yay reproduction! I am working with a genetics councelor who will provide as much information and support as she can. I took a genetics test from my bloodwork, which would basically tell us if it is Downs Syndrome, which we all expected. Well, recently I received the results, and they came back negative. So now, we are more at a loss because he most likely has another genetic disorder. So everything is sort of thrown off.
The doctors gave me an option of terminating the pregnancy, but I really can’t. I’ve already formed this connection with my baby, that I can’t see that as an option. I would rather quit my school and raise a dissabled/special needs baby, than lose him. A sick baby is better than no baby, to me. Because I have the ability to make that choice. Not every woman does, and that’s absolutely okay. I already know my whole life and world is going to be turned upside down. They already told me he will be in NICU after being born. There is a chance of C-Section and also a chance of stillborn/miscarriage. Which I am TERRIFIED of. I love this baby already, with or without all these problems. Good thing is, I know how to change a poop bag, and a diaper. G Ostomate Mommas!
Also, side note, we’ve decided to name the baby Fox. Yes, it’s a little out there, but I mean come on. My name is literally Mara Jade and my son’s name is Caspian. I think we all already know I’m a little out there. And plus I’m a huge X-Files fan. Fox Mulder, duh.
Look, it was a whole lot of information I had to take in during my six hour MFM appointment, so I apologize for not recalling it all. I know there were some other concerns, but they weren’t as serious and had solutions. These were the three that stood out. I don’t know how many of you have seen Deadpool, but remember the scene where Wade finds out he has cancer and is staring at Vanessa as the doctors talking to him, but he doesn’t hear anything except his thoughts of her? Yeah, that was literally me. Relatable for sure. It’s weird when you are diagnosed with a disease you’ve never heard of (i.e. Crohn’s) It’s weirder when you’re unborn child is diagnosed with a multitude of things you’ve never heard of.
Well that’s all the information I have for now, but stay tuned for updates on baby Fox and whatever else I decide to post here.