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.
So if you haven’t seen any of my recent social media posts, we have a new baby here. And boy, was it a long, exhausting past week.
As most know, I was 29 weeks pregnant last week. I went in for my NST (Non-stress test) on Friday, January 24 and they noticed I was having contractions. As I lifted my feet up on the chair, my ankles were swollen like crazy. They looked like marshmallows. I have very small skinny ankles, so that was a new discovery that seemed to have happened just overnight. I also have been dealing with terrible migraines for the past month and had had one at that time too. And, I threw up that morning. The doctor looked at my vitals, and noticed my blood pressure was skyrocketing. 138/94 and then they retook it and it was 149/95. It seemed to only get worse. So he sent me up to the labor and delivery triage. Which is like the OB ER. So, I went up, only for the blood pressure to worsen, and they ended up giving me a blood pressure medicine. But my headache persisted. I also was spilling a ton of protein in my urine. They figured these were all signs and symptoms of preeclampsia with severe features.
Preeclampsia: Is when a pregnant woman has high blood pressure, protein in her urine, and swelling in her legs, feet, and hands. It can range from mild to severe. It usually happens late in pregnancy, though it can come earlier or just after delivery. Preeclampsia can lead to eclampsia, a serious condition that can have health risks for mom and baby and, in rare cases, cause death. Women with preeclampsia who have seizures have eclampsia. The only cure for preeclampsia is to give birth. Even after delivery, symptoms of preeclampsia can last 1 to 6 weeks or more. https://www.webmd.com/baby/preeclampsia-eclampsia#1
This is a really serious condition, and causes a lot of issues for not just baby, but mom. And with Fox having all his health issues, along with him not getting enough nutrients from me, this was concerning. They wound up admitting me, and informing me, I would be there until delivery, and that they most likely wouldn’t deliver me until I was 34 weeks. That would be a whole month in the hospital, just waiting and getting monitored. But, throughout the duration of the weekend, my symptoms only got even worse. They had even given me percocet to help with my contractions, and headache pain, and it did absolutely nothing. I was in so much pain, and by Sunday night, my blood pressure was sky high, once more. Now, this whole experience has been one major blur for me. I had so much testing done, and so many meds pumped into me, that I really can’t remember the majority of my duration there. I had been transferred to so many different rooms, from Special Care, to Labor and Delivery, to wherever else. I had scans done on my head to see if maybe it was a different reason I had these headaches, but all signs pointed to preeclampsia with severe features. All I remember is being woken up around 2 a.m, being told that things were getting worse with my vitals, and the best thing they could do, for my bodys sake, is to deliver me, via emergency c-section. I didn’t take this too well, as I cried, saying this was my fault that baby had to be taken out, because he could have gone a few more weeks in me if it weren’t for my failing body. But, they assured, this would be the best and safest thing to do. I wasn’t able to get the spinal epidural, and I cannot remember the reason why, but because of that, for my c-section I had to be put completely to sleep. Usually with c-sections, the mother is awake, with the father in the room and they just are completely numbed. Well, I had to be completely under, and due to that, waking up is a lot more painful because I wasn’t numbed.
I called Chris, who showed up immediately, and as they rolled me back to the OR room, I cried to one of the nurses, exclaiming how I did not want to die. The last thing I remember is laying in that cold white room, with the shakes, staring up at the nurse and the anesthesiologist, with an oxygen mask over me, and drifting to sleep. What felt like seconds later, I woke ion recovery to my grandma and husband coming in, but the pain was brutal. They had me on morphine, but as we have talked about before, morphine doesn’t work on me. Chris told me how I kept telling them that I needed dilaudid, and that morphine wouldn’t work, and I was crying in agony and pain. after about 30 minutes of me sobbing from the pain of my split open abdomen, they hooked me up to dilaudid and it calmed me down. I was then able to see baby in his incubator for a total of 15 seconds, and they rolled him away from me. I then had to go two days without getting to visit or see him, because of course, my preeclampsia persisted and I had to be hooked up to monitors 24/7. Once I was able to feel somewhat better, they let me go up to NICU where I was able to see my 29 week old, premature baby.
Fox Lyman Podbielniak. Born January 27, 2020 at 29 weeks pregnant. Weighing only 2 pounds and 4 ounces.
Now, the good news is, we found out he doesn’t have any chromosomal issues that were tested for! So that knocks off some concern and worry. He has the hydrocephalus, so his head is enlarged, and the belly issues like the double bubble, so currently he has a tube down his throat which pulls out all his poop and gunk. He has the small heart defects, which we knew, but it seems he has no new issues than what was already told to us, which is great news. He wont be able to get the shunt or belly surgery for a while yet, as he’s just so small and fragile. We aren’t able to hold him because the blood could rush to his head and cause brain bleeding, but we get to hold him up in his incubator thing when they take his weight, which is the best feeling in the world. He has a long way to go, and will be in NICU for quite some time, they said could be 6 weeks, could be 10 weeks, we just never know. So for now, we just go up there everyday, and spend the night on weekends with him. We get to touch him, which helps a lot. He sometimes forgets how to breath, especially when he has his binky in his mouth, but they said that it’s normal for 29 weeks for that to happen, so it’s no major concern. He also has his adducted thumbs which we are now able to see more clearly. The left one is completely inward toward his palm and he can’t move it very well, so as he gets older he will be seeing a physical therapist to work on it, and one already came up to see him which is good.
It’s been hard for me, because the only reason he had to come out now, rather than later, is because of my body. Because I was so sick and it progressed within hours and days. And it just was unhealthy for me. It hurts knowing he could still be in my belly right now. I miss his little kicks and movements. My heart hurts and I can’t help but blame myself for him having to deal with this struggle. I miss him so much and just love him so much. He has really shown me so much about life in just a matter of days. Postpartum is a difficult thing to experience, and I will make a post about that in itself, because it seems we tend to brush off mothers emotions after having a birth. It can be hard to be happy, especially in difficult circumstances like mine. I still can’t fully process the fact that I had him already. That I was only 7 months pregnant and that his due date was April 8, and I had him January 27. It’s just difficult seeing him alone in a little incubator thing in NICU. But I wouldn’t trade him for the world. I wouldn’t trade him for a different healthy baby. He is perfect in every way.
Surgery was terrible. And medical PTSD is really a thing. I experience it because of all my surgeries, and waking up from that C-section was absolutely horrifying. The following days were seriously brutal. It definitely was the most painful aftermath of a surgery, and I needed a wheelchair for a bit. I was constantly in pain. It hurt so much, honestly. I’m still experiencing some pain but I am finally able to walk better and at a faster pace. I never knew how painful c-sections really were, especially without the numbing epidural.
Fox really has a long journey. But I will be updating all of you along the way. He is so strong, and I just know everything will work out. I’m not worried about the preemie situation, but worried about his other major health issues we have yet to overcome, but those will be discussed within time. Right now, it’s about getting him grown and healthy and able to finally come home.
I’ve had 3 greatest days of my life. the first being November 15, 2017, when my first son Caspian was born. He came into this world, being exactly what I had needed at the time. Causing me to grow as a person and showing me that loving someone is possible. He has continued to amaze me and make me astonished for I created something so beautiful and even with our challenges with life, he never ceases to cause me to smile. Being two now, hearing him say “mommy” makes my heart absolutely melt, as it is the best title anyone could have. The second day, was marrying a man on December 27, 2019, who I never thought would be possible to find. A man who has not only accepted and embraced my flaws, but loved them entirely. I not only know that i am lucky to have him, but special. He puts me in front of him always, even when he shouldn’t. And even when all I want to do is fight, because I can get that way, he still just lets me get angry and calm down, and then tells me he loves me. I never deserved him, but I’m glad that I get to have him. And I’m taking advantage of that. He has accepted my son as his own, and loves him endlessly, buying him things randomly and taking care of him whenever I’m not feeling good enough to do so. He has created a bond with a child that is not his by blood, but definitely by soul. Ive never felt so much love for someone, as I never knew it was possible. Marrying this man was the best decision I have ever made, and while we have had our downs, our ups will always overlook them. Family is our main priority, and he is my best friend. Ive never held such a connection with someone before and if soulmates are real, then you definitely are mine. The third day would be the day that our little miracle, baby Fox, was born, January 27, 2020. He has shown me how to become the woman i am becoming. He has given me purpose, when I’ve felt so lost most of my life. This is the hardest most difficult experience of my life, but I know will be rewarding in the end. I am prepared for the downs and ups, as I know they will come. These challenges will be stressful to overcome, but with the support i have from friends and family, I know we can do it. This baby, has really taught me so much about myself, and even though i wont be able to take him home for another 6 to 10 weeks, or longer, i know he is in good hands and will be here every single day, just counting the minutes until you are with us. I miss you in my belly. I’m sad to see how small I’ve already gotten because that was an incredible bond we shared. I miss your long legs pushing off of me early in the morning and feeling your little tint hiccups. I miss the kicks you’d give when id sing loudly to you in the car and i miss watching you grow. Only 29 weeks, we made it. I should have you in me another 10 at least. Until April, but here we are. I can now see how perfect you are, as you look exactly like your daddy with his curly black hair and long limbs. I wouldn’t have it any other way. You are so special and have created this light in my world that I never saw before. We love you so much and i just feel even with all your health issues down the road, everything will be perfect. I have no regrets, and will work with you every step of the way. We love you Fox. We love you Caspian. And I love you, Chris.
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.
As many of you know, I found out that the son I am pregnant with (28 weeks now), has hydrocephalus, along with an abdominal issue and heart defect. Recently, I found out a few more little answers to our questions.
For starters, we found out that baby has X-Linked Hydrocephalus. Which basically, the disease is passed down through the mother only but only males get this (well, 99% of children who get this are male). It is a rarer disease, as it only occurs in only about 1 in 30,000 babies. It’s passed from the mother to the baby. It is basically impossible for this gene to be passed from the father, but is only shown in males born. And it’s just genetics. So from what I understand, I somehow inherited this from my father, making me a carrier, and it was inevitable to happen. I was asked about my two year old son if he had any learning issues. The only thing he has, is he doesn’t know a lot of words. He still uses a lot of baby talk. Most two year olds should know 50 words, he only knows about 10, but he’s good at showing us what he wants. It’s his speech that only close family would understand. I mean the kid can almost say dinosaur. But it could be a learning disorder, passed down from me. Or he just chooses to not talk to us. Baby Fox, seemed to get all the bad aspects of this disease. This type of hydrocephalus is called L1 Syndrome.
So according to a hydro site, I read this quote: “During reproduction, an individual acquires two sex chromosomes, one from each parent. Females have two X chromosomes (XX) while males have an X from their mother and a Y from their father (XY). Females with one affected X chromosomes are called ‘carriers’ and have less than a 5% chance of showing clinical symptoms. This is because females have a second, intact copy of the L1CAM gene which is inherited from their father. A female carrier has a 50% chance of transmitting the affected gene to each child. Read more from this site about L1: https://www.hydroassoc.org/finding-our-way-with-l1cam/
L1 Syndrome: As I read online more in depth into what exactly L1 is, I see the words “mental retardation“; “adductedthumbs“; “shufflinggait” and “aphasia“. All of which are not the best things to find out your child could potentially have. We all know what mental retardation is, so I wont go into that. I explain adducted thumbs below. Shuffling gait is when one walks with dragging their feet and sort of slouched over. When researching this syndrome, I noticed almost all the children I saw, were in a wheelchair of some sort. Aphasia happens to be, as wiki puts it, “loss of ability to understand or express speech, caused by brain damage.” He also has a possibility of X-linked spastic paraplegia and ACC. SPG1 is when the legs stiffen. We really wont know which of these he will have, or the severity of it all, until he is born. I also learned from my high risk doctor, that there’s a high chance he will experience seizures throughout his life. It’s a lot to process, and we don’t have very definite answers. But knowing he has L1 at all, has been beneficial to our knowledge.
We noticed in his ultrasound photos, his thumb on his left hand (he was hiding his right hand) naturally goes introverted- or toward his palm instead of outward like ours do. Also referred to as an adducted thumb. He will still be able to move it around, it just naturally will rest inward toward his palm. This is the indication that he has X-Linked Hydrocephalus. L1 Syndrome.
We also met with a fetal cardiologist, who did about an hour long ultrasound and noticed that the heart defects he has are nothing too major. Which is a huge relief. He has five tiny holes in his heart, but she informed that these will not require any sort of surgery and could possibly even get smaller. He will, however, have a murmur. Which is no big deal, compared to worse situations. He also seemed to have a second vena cava. So in the diagram, the big tube in our heart, we only have one, well he happens to have two, one on his left side and one on the right. Which is also no big deal, because she informed that this will have no effect on him at all. It’s just an odd thing to have! I have an appointment to check his heart every four weeks until he is born.
He will 100% have a permanent shunt placed in his brain after birth, that we already know. Which as I’ve stated in my previous post, a shunt is a metal rod going from brain to abdomen which will slowly drain the fluid out from his head. Because yes, chances are, this baby’s head will be pretty big after he’s born from all the fluid he has built up in it. But eventually it will shrink over time from the shunt, and he will look fine. Nothing wrong with a big head, hydro babies are adorable. But before that, he will be having abdominal surgery to fix the double bubble which will highly result in, you guessed it, a temporary ileostomy bag. Like mother like son, I guess. Now the two of us can have matching belly scars. I’ll be meeting with NICU, a neurosurgeon for his brain, and a pediatric surgeon for his tummy. I have already met with the fetal cardiologist, as I stated up above. Lots more appointments to come, and a lot of questions to be asked, but I never know what questions to ask. It’s always like an overload of different things being thrown at me, and I never fully understand any of it. I also have a genetics counselor and a lady who schedules my appointments and helps discuss things with me and answers any questions that I have. Along with my regular OB. All of these people I will see every four weeks until delivery (Besides NICU). It’s really amazing having such a good team of doctors who I trust and have faith in. I know it’s hard to establish care and trust in with doctors at times, but I am very confident with this team of people. I will be updating more along the way, but chances are my next post wont be until he is born (or if we find out something more). But being 28 weeks pregnant, I don’t have too long until he is here.
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.