A List of Worry

I’m actually disappointed at the fact that I need to make another post for the baby so soon. I’ve received some alarming, confusing and concerning news today, that has triggered all red flags in my head, and feel I must make this post before something happens and I can’t bring myself to. Now, please bare with me, as I have no idea what the hell I am talking about. This is all based of research and from what I can recall from my appointment today.

I have a list of everything happening with baby. We found yet another thing wrong and this last thing has us the most concerned. I am 29 weeks pregnant. Women usually give birth between 38-40 weeks. I’m almost there, but sadly, I probably will not make it. I had an ultrasound doppler, which is where they do an ultrasound but instead of really looking at baby, they focus on the umbilical cord to make sure fluid and nutrients are being passed to baby properly. We figured it’d be fine and well, as we have been most of this pregnancy, we were once again wrong. It seems that baby Fox has decided to stop growing at two pounds and now my blood that is going to him, is seeming to come back to me. This should not be happening. Blood should be coming from me and going to him and staying there. This is an urgent issue, as we don’t want anything to happen to him. If a baby stops growing in utero, that baby will most likely not make it and be stillborn if we were to wait until my due date of April 8, 2020. It is the end of January. I am almost seven months pregnant, but still not quite there yet. My blood pressure was also reading 140 over 80, which is high and as the nurse informed me, pretty high compared to my previous BP amounts.

Well, the high risk OB informed me that most women he has told this information to, on average, wound up needing an emergency C-Section within 2-3 weeks from that time he tells them of this. That means in 2 to 3 weeks, baby could be here. But, that means even if he will be able to get the actual care he needs, he will be premature, which is always scary. In 2 weeks, I will only be 31 weeks pregnant. That’s still 9 weeks away from delivery. I now have received information that every week, I need to go to the hospital two times a week and get this doppler done, along with a Non- Stress Test (NST), to monitor him. My doctor informed that even the slightest decrease of health, he will be admitting me right then and there, taking me upstairs, and preparing for C-section. He also said that if baby starts to move less, to immediately go to the hospital, as they’ll need to get him out asap. I had informed him that within the past few weeks, he has moved less. Well, this is why, amongst all other issues.

Now, the list we have been given is as follows:

  1. Severe Bilateral Ventriculomegaly
  2. 3rd Ventricle Dilation
  3. Left Persistent Superior Vena Cava
  4. Suspected Cardiac Defect
  5. Double Bubble
  6. Right Persistent Umbilical Vein
  7. Adducted Thumbs
  8. (We couldn’t read the doctors hand writing so we can’t confirm what exactly this is)
  9. Polyhydramnios
  10. Intermittent absent end-diastolic flow

Now, you’re probably looking at that list like “What the hell does any of this mean?” That was my exact thoughts. Especially when you receive so much information at once, it’s hard to remember what is what. So I am going to do my absolute best, with the help of google, to explain each of these to you.

1&2. Severe Bilateral Ventriculomegaly (SBV) and 3rd Ventricle Dilation (3VD): These are all about the brain/spine. Both are basically what Hydrocephalus is. SBV basically happens one of two ways. Either the brain tissue around the ventricles is less than it should be because of failed brain growth or due to brain injury OR Cerebrospinal fluid which is usually produced within the brains ventricles, abnormally accumulates in ventricles. Aka, too much fluid within the brain i.e. Hydrocephalus. The 3VD is hydrocephalus as well, and the third ventricle in his brain is dilated. When the measurement of the ventricle is greater than 15mm, it’s considered severe.

3&4. Left Persistent Superior Vena Cava and Suspected Cardiac Defect: This is that second vena cava in his heart in which I explained in the last blog post. Instead of having one, like normal, he has two, which wont effect him in any way. The suspected cardiac defect is just the five tiny holes in his heart which will not, as we know of now, require surgery and is not major at all.

5. Double Bubble: Another thing in which I explained prior to this post. This is the obstruction in his belly/intestines which will require surgery after birth and he will most likely have the temporary ileostomy bag. This is one of the more major problems he has.

6. Right Persistent Umbilical Vein: This is said to be uncommon (with only a dozen cases reported since 1826; woah??? I don’t know if I have read this correctly, but alright?). The left umbilical vein becomes occluded and the right persists and remains open. From what I have read, the right umbilical vein is supposed to be gone by seventh week of gestation, but it seems it has remained. Look, I don’t fully understand this one all too much, so look it up if you’d like.

7. Adducted Thumbs: This is what informed us that he was L1 Syndrome. His thumbs go inward toward his palm, rather than outward like normal.

8: We couldn’t read his hand writing for this, so until I know more, this is a ???

9. Polyhydramnios: This is basically just an excess amount of amniotic fluid in the amniotic sac. I have read that this is only seen in about 1% of pregnancies. We’ve known for a while there was a lot of fluid within my belly, but I never realized it had a whole name and condition and was so rare. Another reason I feel him move less is because there’s so much fluid, instead of hitting me, hes just hitting through the fluid. It is typically diagnosed when the amniotic fluid index is greater than 24 cm.

10. Intermittent Absent End-Diastolic Flow: So this is where it gets more serious as well. My blood is flowing to baby, but coming back to me. It should not be doing this. It should only be going one way and it’s coming back, meaning that basically, baby isn’t going to grow much more. If this gets worse, he will need to come out asap. Hence why I will be going to the hospital twice a week, along with all my other appointments.

Another note made, was that he is in the third percentile for AC, or in simpler terms, his belly isn’t growing anymore and is very small. One of the doctors said that 10th percentile is low, but 3rd, is really really low. So that’s really nerve wrecking.

So, if you can tell, I don’t exactly comprehend all of this to my full capacity. And it is a bit stressful. It’s terrifying to think I could be having this baby in just two weeks time. I mean, we JUST started buying necessities. But I thought we would have more time! I get so nervous that next appointment, I’m going to go in there and BAM, admitted. I hate getting admitted. Especially when you aren’t expecting it. It’s insane that I’m packing a hospital bag for the potential, because I didn’t think I would need to until at least mid/late March. The only upside to this is that he will be able to grow properly if taken out early. I just don’t know how I’m going to sleep at night with him at the hospital in NICU and me at home in bed. If I could, I’d take all this pain from him and double it on to myself. This baby has been given to me in a time where I feel it has given me a purpose, and the thought of the potential that he may not make it? You really never expect that to happen to you. You hear stories and think “No, that wouldn’t happen to me.” And yet here you are. Wondering every minute if your child will make it. Worrying if he doesn’t move in your belly after 30 minutes or longer. Just waiting, and not being able to do a damn thing. That’s the hardest part. There’s nothing I can do and nothing I could have done to prevent this. Only the fact that it’s happening and you have to accept it.

I asked my OB why they didn’t just admit me now, and in short, he said there would be no point as there would be nothing they can do, except put me on blood thinners for bed rest. He says I have a much better chance of just going about my day, and coming in and out of doctor appointments to check in on everything, to be of more comfort for me. I understand, but it’s terrifying not being monitored 24/7. I feel scared not knowing what is going on with him all the time. I’ve found people who have similar stories and their babies have grown into children, surviving the odds. I can only hope for the same. My OB said he does not think I will make it past 35 weeks, if I’m not admitted sooner. While we plan for normal delivery, there’s a really increased chance of C-Section, which I’m honestly more okay with just due to it being a safer alternative for baby. Let’s just add another scar to my abdomen while we’re at it! (Ileostomy scar it the first). My OB has already started me on the antidepressants I will need. With Caspian, I had postpartum depression really bad, and have struggled with depression and mental health issues since I was 12 years old. I was originally supposed to begin these anti-depressants until 36 weeks pregnant. But since circumstances have changed, I’ll be starting them as of now, to help prevent severe postpartum which could even lead to psychosis. So, it’s better to start now, to give it time to settle in with me. I also have been prescribed infant aspirin, because apparently that helps the blood get moving and could help my blood transfer to baby.

I’m cherishing as many of the little moments as I can now. He likes to move his butt up against my rib cage and stick it out, allowing me to rub it. My mom said I used to love my butt rubbed in the womb. He always does this now. He also likes to hide when getting ultrasound pictures done now. He kicks me if I lay directly on my back usually, almost as if to let me know he’s there. And sometimes if I push on my stomach, he pushes back. I just hope that he can be a fighter, and push through all of this. It’s insane to me and almost surreal that all of this is happening, but all we can do is hope for the best outcome. But, as I always say, everything happens for a reason. I just need to learn to accept it all, and move forward and stay positive.

I will be updating if we find out anything more, as it seems every week there is something new. But, if there happens to not be, I’m hoping my next post about him isn’t until I’m in the hospital or baby is here. I appreciate everyone’s kind words and my best way possible is by updating you all through my blog here or Instagram. Stay tuned.

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!

Cannabis & Crohn’s

Discussing the benefits of marijuana and chronic illnesses

With marijuana becoming legalized for not only medicinal purposes, but recreational as well, I figured I’d go ahead and try to give a brief article on what pot can do for people with chronic illnesses, including my own personal experiences.

Now, there’s no actual evidence that marijuana decreases the inflammation in a Crohn’s patients gut, but it can help with nausea, pain and is also able to help aid in eating when someone hasn’t been able to. Munchies are a fun time.

With weed, there’s obviously many many different and various strains. Personally, Sour Alien is my favorite, with Skywalker OG at a close second. These two have seemed to help alleviate my symptoms. I also tend to use dab pens for more discrete purposes and edibles are great too, but this hit me hard and get me really high.

Skye Gould/Business Insider

I personally, am all for marijuana, recreational and medicinal purposes. Having a medicinal card is a nice thing, and pretty helpful. I’ve had times where I went five days without eating because it hurt so bad, but then I ate an edible and was able to actually get some food in me, due to the pot helping me not really notice the pain. It’s been beneficial for my life.

According to Medical News Today, a study in 2018 came to the conclusion that there really isn’t enough evidence to confirm if marijuana was effective in helping with Crohn’s. So, to each their own, I suppose. In a 2011 study reported by the Israel Medical Association Journal, they tested 30 patients, who in the end, informed that their well-being had improved since the use of marijuana.

As pot may not be helping decrease the inflammation in blood work or in the intestines, it is helping with patients symptoms, and sometimes that can be the most important factor for a person.

There’s really not too much out there about Crohn’s and cannabis, but from what I can read, it’s mixed reviews. But I have not seen a single thing that said that marijuana makes Crohn’s worse. So that’s a good thing for all you crohnie stonies out there.

Indica vs Sativa

Now, there may be hundreds of different strains, but the two major types of pot plants are Indica and Sativa. Indica can be more of a body relaxation high and is usually best for nighttime use. Sativa is more of a mind, energizing high and can be better for daytime purposes.

Sativa is usually taller and slimmer in size and the leaves are longer and thinner while Indica is short and stockier with leaves that are shorter and wider.

Indica can provide mental relaxation, muscle relaxation, helps alleviate nausea, minor to mild pain, help with sleep and more vivid dreaming, and increasing your appetite.

Sativa can help with anxiety/depression, treating chronic pain, with focusing and can even bring out your creative side, alertness, also increases serotonin which helps with learning and mood.

Sativa is very uplifting and the best choice for medicinal purposes. Indica can have a very opposite effect and some people experience “couchlock” where you just don’t have much energy to get up from where you’re sitting. So in the end, Sativa would be best. But due to the fact that they take longer to grow and have less flower than Indica variety, Indica is practically dominating the black market, so hopefully this will motivate you to get your med card.

Hybrids are another thing. It’s when two strains are cross bred, so qualities and traits from both of them are in one strain. Breeders are able to create new strains by cross breeding plants together, sometimes best for people with chronic illnesses, like Crohn’s.

Sweet Leaf

Here’s a list of some of the best strains I’ve read about and from personal experience for Crohns.

  • Chemo (Indica) – A heavy body high, good for chronic pain. Also, lots of munchies occur from this one, so proceed with caution (and an empty belly).
  • Lemon Jack (Sativa) – Usually best for fatigue.
  • Hash Plant (Indica) – Intense body high that will just kind of mellow you out. Helps a lot with chronic pain, best at nighttime.
  • K2 (Hybrid) – A blend between the two strains Hindu Kush and White Widow. Helps with nausea, and increases your appetite.
  • Golden Pineapple (Hybrid) – Brings out your creative side so if you’re feeling like you need some motivation, this could be your best bet. Works good with helping relieve anxiety and stress.
  • Blackberry Kush (Indica) – Helps with abdominal pain.
  • OG Kush (Hybrid) – Helps relieve nausea and vomiting.
  • Sonoma Coma (Sativa) – When you are finding it hard to keep food down, whether that be due to nausea, diarrhea, pain, or whatever, loss of appetite can occur, so this strain could be your road to hunger town.

There are obviously tons of strains, these are just a few that will help if you don’t know where to get started.

It Must Be The Ganja

Now for my personal thoughts and experiences…

I’ve had doctors suggest to not resort to smoking pot or eating edibles, but then will prescribe me Oxycodone or have me hooked up to an IV receiving Dilauded every 2 hours for a week straight. That blows my mind how quick they are to jump to more intense pain killers, with high risk of addiction, but say “Eh, pot’s bad”. Now, I will admit, my pain was usually so bad that pot didn’t help to a extent. But I’ve met plenty of people who have said it’s helped immensely. It really just all depends on the severity of your inflammation and what you can tolerate.

Now, I’m not going to lie, smoking anything after having a part of your intestines cut out, makes coughing a hell of a lot more painful. Sometimes I think I might cough myself into a hernia situation. But edibles can be an awesome solution if you want to avoid the risk of that. I usually go for the gummies or suckers because sometimes the chocolates and other sweets can make my stomach hurt a little more, but that’s just because my pain can reach a point where even water hurts.

Personally, I’d love to never have to use another opioid again, but sometimes the pain is just too severe that pot can’t even do much for me. But it’s seriously a wonderful thing to have it as an option for the nights where it’s not bad enough to take a painkiller or head to the ER, but still uncomfortable. I’ve had good and bad experiences from weed. I’ve been smoking since I was thirteen because it helped with my anxiety as a teen and then I got Crohn’s and now I live in a state where it’s medicinally legal, so it’s just nice to have this solution. Smoking at night is usually what I choose to do, since I have insomnia and I absolutely adore the vivid dreams I get (I swear, dreaming is my favorite part of life).

So if you’re thinking of getting your medicinal card, or if you live in a state that allows recreational use, I would suggest going for it and at least trying it out to see how it affects your symptoms. It’s hit or miss, I feel like. Some people love it, some don’t. But definitely do some more in depth research. Like I said, there isn’t much out there about Crohn’s and weed, as there’s really not much out there about Crohn’s anyways due to the mysterious nature of this disease, but I do hope this article helped a little.

Thanks for reading and stay tuned for more articles to come! Also, I’ll be starting a new feature for the site very soon, but it’s a surprise as to what this will be! (: