And by almost died, I mean he DID die. For a solid few minutes.
Don’t mind my language, as I am beyond angry, and this isn’t an easy subject.
Let me start off with, I love his doctors, nurses and surgeons. They are the reason Fox is still here with us today. What we are furious about is that the anesthesiologist greatly fucked up.
Fox was supposed to have surgery. We walked him down to OR and sat in the waiting room. His surgery was going to be to place a temporary reservoir, along with perform an ETV.
Fox is 3 weeks old. Within that time frame, Fox’s head has grown from 27 centimeters, all the way to 31, as of today. A baby’s head should only be going up .5 centimeters PER WEEK. He is double that at this point, causing some concern.
ETV: An ETV is basically a small hole that is poked into his membrane where it will create a flow of the fluid built up in his brain. We are all naturally born with this, as it will drain the fluid into our body and we reabsorb it. Fox, as we know, was born without this, and so the fluid just keeps building up in his head, causing it to become enlarged.
Reservoir: A reservoir is like a little bubble that is placed on top of a baby’s head where they will every few days go in and tap it, or take a needle, and pull fluid out by hand. It’s similar to a chest port, but on the head instead.
Now, we were waiting for about an hour (and this surgery was going to take 2-3 hours) when I saw his surgeon approaching us. My heart dropped. When I say time stood still, it truly did. I thought the absolute worst had happened while Fox was under. And I wasn’t entirely wrong, but we hadn’t even gotten to that point yet. The surgeon explained that once the tube was down his throat, he began convulsing, and the oxygen wasn’t getting into him. He felt that it wasn’t justified to try and attempt the surgery again, because at this point, Fox’s vitals needed to get better and he needed a break. Which I 100% agree with.
They hadn’t even begun the procedure yet. One of Fox’s doctors received a pager which informed him that something was wrong, so he rushed in there to see a group of people huddled around Fox, as he wasn’t breathing. Four rounds of CPR were performed to resuscitate him, as he had been dead. Three people checked to see if the tube was misplaced and cleared it that it was not. He then checked to see if Fox had a collapsed lung, but Fox was okay. Finally, his doctor exclaimed that he wanted to check the tube once more. When he did, he noticed that the tube was in fact, not in the right area and not going down his airway, but put into his esophagus. So really, Fox would have been fine if the anesthesiologist had put the tube in properly.
I’d be a little more understanding if something happened during surgery, but this was a simple tube down his throat that so many people getting surgery get. And Fox isn’t the first baby to get a procedure done, so why was this happening? I’m so beyond thankful that he is now okay. But I need more answers. I am angry, furious actually. And really, for a while it didn’t hit me until I was sitting in the room with him and just thinking and then it finally registered. I bursted into tears and became very upset. And we have every right to be. My son could have died, because of someone’s negligence. I have so many emotions going through me right now, as this should not have happened. Now we are basically back to square one, and have to wait for surgery once more. Fox needed this pressure in his head gone, so he could have some relief. And now we have to wait. And we were also told that if we ask for his doctor to do it instead, they can, it just has to be at the patients request. And no way in hell am I letting an anesthesiologist going near that boy and the tubes again.
I plan to find a patient advocate. I want to have better knowledge and reassurance of everything, because this is not something to take lightly. We shouldn’t feel like we aren’t safe. We shouldn’t worry about the people who have our children’s lives in their hands, are going to fuck up. Especially with something so minor and simple like a tube going down his throat. I understand he is small, but as I’ve stated, other preemies have had surgeries as well. This is far from what I expected to go wrong, and I want answers. I am not the type to get angry. I’m actually a very understanding person, because I hate hurting other people’s feelings, and I get mistakes can happen. If this were to happen to me, then I probably would have been like “oh, it’s okay, accidents happen.” and moved on with my life. But this happened to my SON. And the thought of losing him caused my entire body to break down mentally, and physically.
Fox is stable now. It will take him the rest of the day to recover and just sleep it off. But three weeks old, and he’s already been through so much. My heart hurts. I just want him home and healthy and happy. And I know this is just the beginning, and I’ve accepted that and will embrace that this is what life will be like. But fuck, it’s hard. It’s hard watching him through a little plastic box, and only being allowed to hold him when I ask. It’s hard going home some nights, to a quiet house where my baby is not, and in the hands of strangers. I just want him to feel normal. I want him to experience normalcy. But he wont, for a very long time. This is our normal now. But dear god, if another tube goes down his throat wrong, I don’t know how I’ll feel. I will not let him have this happen again. He is my world. And he is a fighter.
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:
Severe Bilateral Ventriculomegaly
3rd Ventricle Dilation
Left Persistent Superior Vena Cava
Suspected Cardiac Defect
Right Persistent Umbilical Vein
(We couldn’t read the doctors hand writing so we can’t confirm what exactly this is)
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.
In this article, I’ll be discussing self love, the highs and lows of life, and toxic situations, along with how to conquer insecurities within yourself. I will be discussing parts of my life that have impacted me for a long time, and which helped me reach an outcome I never could ask more for. This article isn’t just meant for people who suffer from Crohn’s, but for anyone who suffers from these inner demons we always seem to find. Whether you’ve experienced abuse, losing a close friend, or an absent family member, these are all things we can overcome. It just takes time.
Warning: This article contains themes of rape, self harm, depression and trauma.
I’d like to start off with telling you all a little bit about my past with depression and personal insecurities. When I was twelve, I suffered from the loss of my grandmother who I was deeply close with. She passed from breast cancer which also spread into her bones. After, that, I found myself realizing how hard life could be. I didn’t have my father in my life growing up for about 13 years, due to substance abuse, and she was the closest thing I had to him (she was his mom). After her funeral I began questioning why my father wasn’t around and why life was so hard and wondering if there was a God, and if so, why does he take the most innocent and beautiful souls from us?
When junior high started, I found myself being bullied. Rumors were constantly spread about me at my tiny private school and they would really make me look down on myself. I struggled with weight, due to girls calling me fat and a rumor that I was pregnant (in seventh grade, I hadn’t even had sex yet *eye roll*). When eighth grade began, the bullying intensified. Girls began telling me to kill myself and calling me way more harsh names. I was self harming at the time, and they’d make fun of that as well, while encouraging it, so I did what any rash teen would do, and ran away with my then boyfriend. We got caught, I went to a juvenile detention center and then spent a month on house arrest. I started at a new school, and things began to seem somewhat better. Until the boy I was dating began turning abusive. The yelling and fighting and controlling turned into pushing and shoving and threatening to kill himself, or hurting me. I was fourteen when I fell in love with him and stayed with him until I was sixteen. On top of this, I fell victim to sexual assault and convinced myself that “I’m his girlfriend, this is what I’m supposed to do“. Even if I told him no. I kept this all to myself, for fear of him and fear that he was right and no one would ever “love me” the way he did. Then I ended up leaving him and he showed up at my school, dented my car door, and later that night broke into my home when I was home alone and I was forced to call the cops on him. Which resolved nothing except I never heard from him again.
For a very long time, I was in denial about what happened. I didn’t really understand until people helped me realize what I had gone through. I couldn’t accept it. I hated him for a very long time and then recently I realized, I can’t continue to hate someone, especially when they don’t even realize what they did was wrong. I tend to make up excuses for peoples actions and I believe we just were too young to understand our emotions. We fell in love hard and fast and we didn’t know how to process that so we became controlling and possessive. That led to abuse that I didn’t really realize was abuse until much later. But like I said, we were young. Now, I’m not excusing his actions, but, I have learned to forgive him whether he knows that or not. I can’t continue to hold on to this anger, as it’s only taking a toll on me. What’s the use in being angry with someone, especially when I haven’t spoken to them in nearly 4 years. It took me a very long time to be able to call what he did to me, rape. Because it’s such an ugly word. And most people when they think of rape, they see it as violent or from somebody they didn’t know. You don’t usually think of a boyfriend raping their girlfriend. But no is no. And of course, there were times I said yes, but there were also times that I did say no. And that’s enough for it to be assault. It’s hard to think that someone who claims to love you, could do that. It makes you build up this wall around you that you may never want to tear down. And there are still days, 4 years later, where I can’t handle anyone touching me. Where things remind me of him or I feel how I felt when I was with him. I also had hated sex for a long time, and couldn’t find a way to enjoy intimacy, until I was able to meet the right person.
In the images below, there are texts from that person from when we were not together, but I was still to scared to cut him off. This is what I endured, yet still couldn’t call it abuse. If a man says these things to you, it is ABUSE. Warning for below photos, as they are vulgar and depict abuse.
I was 14-16 years old when I was with him. Remind you, these texts were from when I was either sleeping, with family, or at work. I was accused of cheating, when I never did. (He was also the only man I had ever slept with at the time). I was threatened with a gun he owned, and cheated on by him. He would make me send photos to him of where I was just to prove it to him. I wasn’t allowed friends of either sex. He once broke up with me for seeing a movie with my step dad. I couldn’t wear tank tops or show my shoulders or belly. On Halloween one year, he drugged me, raped me, and then cried because I was shaking so bad and my eyes were red and I thought I was having a seizure. I threw up eight times that night. It took a lot out of me to end this relationship, but it helped me grow as a person and learn, and truly, I hope the best for him and that he gets better.
One thing I always say to people, is moments are temporary. Even the ones that feel like they will never end. And that’s something that takes a while to fully grasp the concept of. Sometimes it feels like whenever my life starts to fall into place, something happens, making it fall back apart again. But that’s when I have to remember that everything happens for a reason and eventually, this all will have been for something. I believe everything that has happened to me, has made me the person I am. I’ve grown from these challenges and I’m moving on. It takes time but healing is worth it. I have learned a lot from having an absent father. I used to want him in my life so desperately. My mom told me that when I was 6 years old, I used to ask her why my dad didn’t love me. Finally she had told me when I reached an appropriate age, that he was a drug addict and it was never my fault. When he got married to my now ex-step mom, I saw him more. Mostly due to her, because she wanted me there, especially because she had a daughter my age who is still a close friend. But then after about four years, they got divorced and he seemed to fall back into habits. He is so far from being fixed, it seems. And it took me a long time to realize I shouldn’t have to be the one who fixes him. He is the adult, whereas I am his child, so he should be the one reaching out to me. But, if it weren’t for me contacting him first, I’d never hear from him. And so I took that up and decided it was for the best, because having him in my life seemed to just be more issues than needed. But man, I used to blame myself so much for him disappearing, but I finally reached an age where I figured out it was not my fault. And what is best for me, is to choose my family. Because it is a privilege to be a father, but not a right. Which I had to realize with my sons father as well. But I truly stick to the fact that you choose your own family. Whether it’s cutting out certain family members because their lives seem to collide with yours, or if it’s adding friends in as family. We should never have to be around toxic people, if we don’t want to.
Self love and acceptance is a challenge I believe many people have yet to overcome. We all struggle with something. Whether that be our weight, the way our face is shaped, our nose, a bag attached the their abdomen, etc. There’s something we all are insecure with. And that’s okay. You can still love yourself and not like certain things. But the key to healthy relationships with others or with life, is to love yourself first. Yes, it’s a tad cliché, but am I wrong? I mean how can we love somebody when we can’t love ourselves properly? And then we will find ourselves settling for less than we deserve and it just becomes a chain reaction. I found myself in yet another scenario of abuse, which tended to be more mental abuse if anything, but after my son was born, I couldn’t keep either of us around out so I left. Now, of course I wasn’t perfect. I had my times too, where I was at fault and should have approached things differently. But you can only take so much pain until you yourself becomes toxic too. And that’s the hard part is excepting when you are the toxic person in someone’s life as well. And we all have been. Whether it be a friend, family or spouse. Each of us has been in a place where we haven’t been good for somebody, and the only thing you can do is remove yourself from that situation. I spent a year where I mostly had little flings here and there, but never fully let myself get to that vulnerable stage with someone. I had spent more time focusing on myself, rather than people. And it got me to a place of happiness. I figured out how to love myself by hiking and writing and even just spending time with no one, but me. Because in the end that’s all you have is you. We are born into this world alone, and we die alone. A lot of people hold fear of being by themselves, which I was one of them. I always had to be texting somebody or facetiming someone, but finally at 20, I’m at an age where I don’t feel I need that anymore. I go through times where I completely disassociate with all social media and just do me for a bit. And that is totally healthy. We need that solid concrete ground for us to feel safe within ourselves. We can’t always depend on other people to be there when we fall down.
Everyone learns how to love themselves in a different way. Some people, sadly never do. But if I can preach one thing on this site, it’s to try. There are of course days where I feel insecure or down about myself. Or I can’t stand myself even, but after a certain point you have to move past all that. When I had the ileostomy bag for four months, I was on steroids which made my face look HUGE. I hated leaving my apartment and couldn’t stand the site of myself. It took a long time after my reversal surgery and after I took myself of those steroids, for my face to go back to normal, and I really never thought it would. It was defeating. It took me so much time to get to a place of feeling beautiful, and felt like it was destroyed in just a simple two weeks. My heart was broken because of the insecurity. But I got better and everything fell back into place, as it usually does.
Now, being pregnant with my second son, I’ve experienced a very deep low that I hadn’t been in in a while. The only people who seemed to understand was my fiance and mom. First trimester, my hormones were going insane. I never wanted to leave the house. I felt tired all the time. I felt really lonely even though I wasn’t and I just felt very very depressed. It was challenging and I felt like I had to justify to people constantly on why I was moody or lazy. Hanging out with people made me just shut down entirely. I couldn’t be in a social setting without getting really consumed by depression and just mood swings. I tried having a Halloween Party and it just blew up in my face. I just had no energy. As soon as I hit around 18 weeks, I felt back to normal. I was able to finally start socializing again and felt like I could be myself. But at this time a lot of people seemed to not like me, or just not want to be around me. And you know, I made my bed so I needed to lie in it and accept that I put this on myself. So of course I owned up to it and apologized, explaining where I was coming from, and some of my friends were so understanding, and some were not. But at that point, after you put that first initial step of effort in, and they don’t reciprocate, it’s not on you anymore. You tried, that’s what matters. And now, at 23 weeks pregnant, my baby seems to have a LOT of health issues and basically I’ve said if people can’t accept that sometimes I’m not in the best mood, I really don’t care. And you shouldn’t have to always be so concerned on how people view you. Or how people are offended by you being in a bad mood. We aren’t all perfect, and people need to understand that. So don’t ever blame yourself if a person has took it upon themselves to not accept you. That’s their loss.
It’s not often you find good friends who stick around. Especially when you go through some really dark places. Not only eight months ago, was I in such a dark bad place that, yes, I became a person who was practically unrecognizable. I was depressed, in a way that I was trying to do everything in my power to hide my true self because it was just a bad time for me. I don’t remember much, as I was drinking heavily and trying to suppress some dark emotions that I have since then, overcome. But it actually hurt a lot when the friend who I thought would help me through it or even just be there for me, as she knew that it would pass, left. I don’t blame her though, because she probably assumed I was just gone for the worst and that that was me. But I was actually concealing a lot of emotion. I was possibly in the darkest place of my life and I understand that sometimes people need to remove themselves to better their lives but things were said that will constantly be ingrained in my brain. Because it’s not like I was permanently changed. I don’t even know that person that I had become and thinking back on it, I still don’t. But what confuses me is that every 20 year old or so, has partying days. I don’t know any of my friends who don’t party. Yes, it was excessive, but it was necessary for me to grow as a person and to realize that sobriety was actually the path I wanted to take. Even after my baby is born, both my husband and I have agreed that being sober is the healthiest and most positive outcome for long term. Chris is about 2 months sober. He quit everything cold turkey. I had to 5 months ago when I became pregnant and I’m glad because I needed that extra push. Alcohol seems to be more damaging than anything I’ve ever done. I have even decided to not renew my medical marijuana card due to me just not liking any substances anymore. Pot was always good for when my Crohn’s acted up, but even then, I just would rather not resort to it. It makes me anxious and paranoid, honestly. It’s a really hard thing admitting when you are wrong. And I can admit, yes I was not a perfect person or friend. I had times where I had acted out of selfishness. But you must remember, it takes two people to cause a fight. And yelling isn’t always the best option. If we had sat down and talked about it all in depth, maybe I would have understand right then and there. But things were said, on both parts, and it just resorted to something that shouldn’t have happened. I’ve grown from it. And even though to this day it still is painful for me, as I loved this friend a lot, I know that it needed to happen at that point in time. We both were toxic for each other. Not just me, and not just her. Both of us. And sometimes admitting that, can be challenging. But you get nowhere from saying “Oh, it’s their fault. I didn’t do anything wrong, blah blah blah.” Because everyone perceives things differently, and in this case, we both were wrong for how it was approached and dealt with. And that’s a strong powerful thing to do. But god, I don’t know of any friends who were roommates, that hadn’t had a huge falling out like this. My mother even told me that when I was one years old, she and her best friend lived in an apartment together and they had a huge fight, just like this one, and didn’t speak for a whole year. And now? Still the best of friends. It happens, it’s not unusual. I just wished that I could have stated my case to her. But I don’t act reasonable when I’m angry, and it basically just turned into a screaming match, on top of me balling my eyes out, because I knew I was losing her for good. And it’s hard, God, it’s fucking hard. But the best thing you can do for yourself, is point out the problem on BOTH ends, solve it on your own, forgive them even if they have no idea you’ve forgiven them, and move on. And hey, maybe one day, you two will talk again, in my case, we have not. But that’s okay too. It’s okay to miss somebody, even if they hate your guts. Because the best thing you can do in a world full of negativity, is be a little positive.
It’s funny how I went from being a typical 20 year old who partied every weekend, to a 20 year old who cleans and cooks on almost a daily basis. I mean, I’ve even started up my blog again so that right there should show you how much of a homebody I am these days. I’m going to have to have a whole new life when this baby arrives due to all of his health issues. It’s actually scary. Because many of my friends are still in their partying stages and I already know that with how sick this baby is going to be, the only option will be to have friends over for dinner, if I even have time to cook. Which I am totally okay with. It’s just hard watching everyone have all this fun and you sit at home. But I don’t see why we always need alcohol and parties to have fun. Alcohol seems to be the root of many of my problems. From my father who was an alcoholic, to some other family, and to me, who had a brief time of drinking a lot. It’s just, a no from me. I mean, believe me, I am NOT shaming all of you if you have a glass of wine or even like to get fucked up on some Jack Daniels, I’ve just realized it doesn’t benefit me, or my life.
Now, you may ask, “Mara, what was the point to this extremely detailed article about your life?” And I may answer with something like, “To show you how to love yourself!” But that’s not the case. I still have days where I don’t fully love myself, or feel confident. And that’s okay! We are all human, it’s just in our nature to have insecurities. But, you must be the person who picks yourself back up after a downfall. You can’t depend on others to. You must be the person to realize your faults after arguments, or disagreements. You must own it. But you should never feel obligated to let people take advantage of your kindness. You should also always try to picture yourself in others shoes, and reason with them. Life is suffering, and the only way to make the best out of things without putting yourself down in the progress, is acknowledging the fact that life can be a huge bitch. Just learn to get over it, and confront your problems head on. So I guess the main point to this article is to show you, we all go through shit and you never know what people are going through behind closed doors. You just gotta learn to deal with it to ultimately find peace and happiness. And remember, with time comes healing.
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.
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.
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!