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.

X-Baby

(Like X-Men, but better)

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“; “adducted thumbs“; “shuffling gait” 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.

Stay tuned.