Hydro- what?

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.

Resting Moon Face

Yes, It’s a thing.

I’ve probably talked about my moon face to every one of my friends and none of them really knew what I was talking about until I explained it.

Prednisone is a steroid that of which will help with the pain and inflammation temporarily while a different treatment plan is underway, usually.

Well, I’ve been on Prednisone since late November, and let me tell you, it’s nice to have some help with the inflammation in my gut, but the constant eating, and changes in my body are driving me nuts.

For starters, I’ve been getting these bumps on my forehead and my shoulders. They aren’t even pimples, just little annoying bumps. Also, I’m almost always hungry, and everything tastes good. I can’t think of a single food I wont eat. And lastly, moon face. While, I haven’t experienced much weight gain except maybe a few pounds, my face has turned into a literal circle. I see myself and think ‘Human or hamster?’ because I look like a little rodent that kids keep as pets whenever I smile. It’s kind of insane and I absolutely hate it. I have an ileostomy bag at the moment, and I’m more insecure and concerned for the roundness of my face and my puffed out cheeks, rather than the bag full of poop on my stomach.

Now, you may think I’m overreacting, but people have actually noticed this change. So figured I’d provide some photos from when I was first diagnosed with Crohn’s in August of 2018 to just a few days ago in January of 2019, for reference.

Now, it may not look like a lot, because it really is just my face that’s gaining the weight, but I mean, COME ON, I totally look like a little hamster or something. And it’s fine, because I know once I’m off Prednisone in a few weeks, it’ll go back to normal, but wowza, gotta love modern day medicine and the lovely side effects!

So when you hear someone refer to moon face, this is what they mean. Medicine can have lots of negative side effects, and it sucks when the thing that’s helping your pain is also the thing making you look a way you don’t necessarily like. It’s hard to be positive or feel good about yourself when you can literally see this change happening right in front of you. There are days I just feel so insecure, whether it’s because of moon face, or the little bumps on my forehead, or the bag, I just miss the confidence I used to have and I’m trying so hard to get it back, but it’s hard when medicine is contradicting you. I just remind myself that moments are temporary. I can and I will get my groove back, I just need to keep patience in mind. Nothing happens overnight and right now my health is the main concern.

But damn, I am SO ready to start feeling AND looking good at the same time. So let’s hope when I get my reversal surgery in March, I will be.

Also, remember, if you have a bag, or moon face, or just anything you feel insecure about, try not to stress too much over the little things. We all are trying our hardest and I know sometimes things like this can be very discouraging and frustrating, but honestly, we all are beautiful no matter what. We all have things about ourselves that we consider flaws, but try to focus on it as a unique part of you. It’s what makes you, you. And we need to learn to just embrace ourselves and love every part of ourselves, because that’s the key to being not only happy, but healthy.

So ladies and gents, embrace that moon face, because it’s the only face you got and there’s no point in dwelling on it!

Loss & Illness

As I sit in the hospital bed, I hear my phone vibrate just as I’m about to drift to sleep after getting a 1 mg dose of Dilaudid for the night. It’s been 4 days that I have been here, getting pain meds about every two hours and also awaiting to find out if I will be having surgery or not.

The surgery in questioning is a resection surgery of my intestines where they would take out a part of my intestines and cut a hole into my stomach, placing a temporary ostomy bag for me to, well, to be blunt about it, shit in. Chances are I would only have this bag for 8 to 12 weeks, which is fine because whatever is going to help with this pain, I will take it at this point.

I look to my phone to see that my grandpa Bobby has passed. The past year or so, my grandma’s husband and my mom’s father have both been under Hospice care. Both suffer from dementia. Well, my grandpa Bobby was diagnosed with a very rare throat cancer just a few months back and they didn’t give him much longer to live. We honestly are surprised he made it to the new year. He was living very miserably these past few months. He couldn’t eat much and his throat couldn’t handle very cold foods, so we really were preparing for him to go. The hard part was being in the hospital while it happened, all the way across the country.

My grandmother has been taking care of him back in Ohio while my mother and I have been out in Arizona. She visited him many times throughout the weeks and always made sure he was as comfortable as he could be. Well, my grandma had arrived here in Arizona last night to see me in the hospital. And when we heard he had passed, I truly believe in a way, he waited until the three of us, His ex wife, daughter and granddaughter, were together so he could go and we could be there for one and other. It’s a very bittersweet thing.

Now, losing someone is never easy. Especially when you can’t be there with them when they go. And many people hold a lot of anger and regrets as a part of grieving. When my Grandma Sue passed away from breast cancer when I was 12, I resented myself for a very long time. I thought “Why didn’t I text her more?” or “I should have answered that phone call two weeks ago that I had missed.” I felt as though I didn’t do enough, even though I was just a child. And it took me years to finally accept that I didn’t do anything wrong. She loved me and I know she is here with me every step of the way through now what is my journey of battling a disease. So what you need to remember that when a loved one dies, they don’t pass with any disappointment or judgement towards you. And you have to try and accept what has happened and not stay angry at yourself, because living with regret is the worst feeling and not only mentally, but physically, it will take a toll on your body.

My Grandma Sue discussing her cancer.
Video uploaded by my father.

Whether you are religious or not, I truly think that this video is very inspiring and something people should hear. Sue was the strongest woman I ever had the honor of knowing and growing up with