How is Everything Going?

Is the hardest question.

I appreciate the concern, and please don’t stop asking. I just want to explain why it’s so difficult, and why it takes so long to respond.

  • I’m frustrated and sad that I can’t breastfeed. Even though a fed baby is a healthy baby, I feel like I’m not giving her the best nutrients possible. While on the other hand, I’m happy that she’s growing on track.
  • It’s hard that she’s connected to a feeding pump for 20 hours a day. It’s difficult leaving the house. I’m sad that I can’t pick my baby up and easily move around. On the other hand, I’m happy that feeding her through her stomach is limiting her reflux events. If her endurance and stomach can’t tolerate all the calories she needs by bolus, then I’m happy medicine invented a way for her to safely eat.
  • I’m frustrated that she hardly eats anything by mouth, because I’m missing out on a special bonding experience. It makes me feel like less of a mom. On the other hand, I’m happy that she’s connected to a pump throughout the night. I get to sleep.
  • I’m sad that she has a shunt. The device in her brain has the highest failure rate of all medical devices. That’s something that is always in the back of my mind. On the other hand, I’m happy that her scans are showing that her shunt is working properly and the fluid is draining.
  • I’m stressed by how packed my schedule is with therapy and doctor appointments. On the other hand, I’m super thankful that she sees the best therapists and doctors imaginable. She has the most amazing team caring for her.
  • It’s hard that she’s behind from other babies her age, especially physically. I practice PT, OT, and feeding therapy often throughout a day. This takes a lot of patience and perseverance. On the other hand, I see every milestone as a HUGE success, and that makes me very proud and happy.
  • I get upset and sad knowing all the pain she’s experienced, and will more than likely experience in the future. Handing my baby over to be operated on is ridiculously hard and goes against every motherly instinct imaginable. On the other hand, her huge wide mouthed happy smile is so powerful it almost knocks me to my knees.

So, please understand that I’m living somewhere in the middle. Between ridiculously hard times that need understanding and good times that deserve rejoicing.

 

 

Love and the Outcome

The past few months have been the darkest and hardest of my life, but also filled with love, support, and compassion.

A lot of people don’t know Jocelyn’s birth story, or the outcome. Or maybe know bits and pieces. So for those that want to know everything, here it goes:

The day after my previous blog post, on February 6th and 34 weeks pregnant, I had an ultrasound at UW. Shortly after, I met with my specialty OB doctor. She said we reached the point where it had become unsafe for both of us, and it was time to discuss when we should schedule my c-section. Jocelyn’s head measured a whopping 42 weeks gestation and was head down. She felt comfortable doing my c-section at 35 weeks pregnant, but said that she needed to coordinate with the neurosurgeons at Seattle Children’s before getting me booked. Needless to say, I was on pins and needles and had my phone glued to my side. On Friday she called and said that the neurosurgeon felt comfortable doing the surgery at 36 weeks pregnant, so my c-section was scheduled for Monday, February 20th.

But, as we all know, life doesn’t always go as planned…

In the late evening of February 16th, I started to have light to moderate contractions. I spent most the night packing our hospital bags, and by noon the following day the contractions were getting stronger, coming every 3-4 minutes, and lasting more than an hour. That’s when I knew to head up to UW.

When we arrived, the doctor examined me and explained that I wasn’t in labor or dilated. None the less, she called my specialty doctor, the one scheduled to perform my c-section, and decided to keep me until my scheduled c-section on Monday.

The more the doctor examined me, the more she felt something was wrong. She was curious as to why I was having such painful rhythmic contractions and no sign of active labor. UW is known as the best hospital in Washington state, so my doctor was smart and ran labs to see if I had an infection. Her instincts were correct, my white blood cell count was high, and my uterus was extremely sensitive to the touch. Somehow, I developed chorioamnionitis and needed to have an emergency c-section. Dr. Cheng came back into work for my delivery, and Jocelyn Grace Jones was born on February 18, 2017 at 12:27AM.

Sadly, because of the nature of her condition, I wasn’t able to hold her after she was born. I’m glad that she was snuggled and loved by her daddy. When I arrived to the recovery room, the Seattle Children’s transport team was ready to take Jocelyn and Joshua to Children’s. I only had time to stick my hand inside her incubator to stroke her tiny arm, tell her I love her, and as soon as they arrived they were gone.

I spent the next couple days recovering at UW, while Jocelyn and Joshua were 10 minutes away. Why they don’t connect both hospitals, or create a long tunnel between the two, is beyond me. I wanted nothing more than to be with my baby. Finally, after what felt like years, I was able to be discharged at 6:00 AM on Monday. I held Jocelyn for the first time, and can’t express how much love washed over me.

While at Children’s, I discovered that there was a huge team taking care of her. Neonatal, neurosurgery, neurology, ophthalmology, and much more. I also learned that Children’s had one of the best NICU’s in the nation. I encountered the best doctors and nurses who cared so much about my little family.

Because things were improving for Jocelyn, I thought we would get discharged by Friday. But like I said before, things don’t always go as planned.

The neurosurgery team wanted Jocelyn to get her first brain surgery on Wednesday, February 22nd. The team came into her NICU room, went over the two surgery options, and left it up to us to decide. To choose between a shunt or an ETV/CPC surgery. From my countless hours of research, I learned that only certain people with hydrocephalus can get an ETV/CPC. The qualifications depend on the anatomy of the brain, and how the condition was developed. The great thing about the ETV/CPC surgery is it would eliminate the need for a shunt. The bad is that there would be a 40% success rate. We decided to try it, and hoped for the best.

That’s when things started to take a turn for the worse. As soon as they whisked her away to surgery, I started throwing up. I chalked it up to nerves and a lack of sleep. After all, my baby was being operated on. Unfortunately, it got to the point where I couldn’t eat, drink, or take my medicine.

Her surgery was a success, and as much as I wanted to hold her, I decided to rest. After all, the last thing I wanted to do was get her ill.

I rested for a few hours and didn’t get better. That’s when I decided something was wrong and called UW. They told me to go back to be examined. Reluctantly and hesitantly, the day of my baby girl’s surgery, I went back.

While in the exam room, I honestly thought that I would only stay for a couple hours. That I would get medicine to stop me from throwing up, or they would inform me that I contracted a GI bug. I was hoping to go back to Children’s shortly after checking in. Back to my baby girl.

But, like I’m constantly saying, things don’t always go as planned…

For my safety, they wanted to admit me. They put a tube down my nose to suck everything from my stomach back out, and as soon as the tube passed my eye socket, it felt like my nose was breaking. It ended up being positioned directly on top of my gag reflex. But all that was incomparable to the pain I had being separated from my husband and daughter. The day of her first surgery, I had to be taken away from her. Honestly, that was the worst pain I’ve experienced, and I don’t think anything will ever top it.

The following morning, the doctors ordered CT and x-ray scans. Those confirmed that I had an ilius or a partial bowel obstruction. A doctor who assisted in my c-section told me  that they found a lot of endometriosis during my surgery. This caused them to inspect and manhandle my insides for an extended period of time; which in-turn caused them to be paralyzed or partially obstructed when they were put back inside me. Regardless of what I had, they said that the treatment was the same. I needed to keep the tube down my nose, be NPO, have an IV for nutrients, and rest. That the majority of cases resolve within 3-4 days.

But, when has anything in my pregnancy or birth gone to plan?

The fourth day came, and they moved me to a different floor. One that didn’t need constant monitoring. The tube came out of my nose, and I was finally able to eat for the first time. Over an hour, I slowly ate 4-5 bites of chicken noodle soup and was getting close to discharge. But an hour after I ate, I threw up.

The doctors put the tube back in, moved me back to the main floor, and were puzzled as to why I wasn’t getting better. They ordered more CT and x-ray images, and because they were confused, they asked the general surgery team to assist in my care. I had to start back to square one, and walk as much as humanly possible. Even though it was super painful, I walked for hours and hours to wake my body up.

On day 10, I woke up and my stomach grumbled the loudest it’s ever grumbled before. I was starving and it was screaming for food. They heard my stomach through a stethoscope and happily said that my bowels were finally awake. For the first time in a long while, I had food and didn’t throw up. I got discharged, and if I could have ran, I would have ran out of there so fast.

My mother drove me back to Children’s and I cried in the car. I was so excited to see Jocelyn. As soon as I entered the NICU we did skin to skin and I held her so tight. Tears were streaming down my face, and I didn’t want to let her go.

I re-adjusted to life at Children’s. Joshua and I were able to sleep in the sleeper rooms in the hospital. They were located a floor above the NICU. Even though they were the size of a closet, they were free and only an elevator ride away from our baby. We didn’t have to worry about the financial burden of staying in a hotel, or frantically driving over if there was an emergency. I was available to meet all her doctors and was involved in most of her daily rounds.

We remained in the NICU because of her bradycardia events. The doctors weren’t sure if they were due to reflux or from her forgetting to breath. They also wanted to ensure that she was growing, and to figure out a good feeding regime that was safe. Unfortunately, we discovered that she had oral feeding difficulties possibly from her hydrocephalus, reflux, endurance, and being premature. At 4 days old, she got a feeding tube down her nose, and the following weeks were spent figuring out the volume of food that would be safe. We hoped to be discharged soon, but things took a turn for the worse.

On March 12th, her nurse noticed that her head increased by a centimeter and a half. A neurosurgeon examined her, and said that her ETV/CPC had failed. Because of the quick increase in size and the bulging soft spot, they knew it failed without even needing an MRI or CT image. Unfortunately, they were too hesitant to try the same surgery again. The only solution was to do a shunt.

Her surgery was scheduled for the following morning, and I will always regret not choosing the shunt in the first place. Doing so could have prevented her from having two brain surgeries in under one month of her life.

The surgery was a success, and this time I was able to hold her. So for hours, I held her tightly in my arms. Telling her over and over that I loved her, she was going to be ok, and that I wasn’t going anywhere.

The rest of our NICU admission felt like groundhogs day. The same day over and over again. The doctors monitored her bradycardia, reflux, and shunt. Sadly, shortly after her surgery the shunt started to swell. The neurosurgery team didn’t know if it was a shunt malfunction or not. So Jocelyn endured more CT and X-ray scans and they changed the shunt to many different settings. Eventually, they programmed it to drain as fast as possible, and the swelling decreased.

About a month after her birth, I developed another complication. Ironically, it was the same night Joshua decided to go back to work. My c-section wound got infected and opened up, possibly from my chorioamnionitis. Because I was carless, I took my first Uber back to UW. I honestly thought they would stitch me back up and I would be on my way.

But no, they monitored the infection over night, and the next day my abdomen was tender, red, and warm. I immediately started antibiotics and they opened up the incision site even more. They informed me that the wound was from the inside out, and that I would have to pack it every day with fresh gauze. So I had to go back to UW to get it repacked daily. It took almost 4 weeks to heal.

Jocelyn’s oral feeds and reflux episodes were hard to handle. To limit the amount she refluxed, the doctors encouraged us to change her feeding tube from an NG to an ND. They said that it would dramatically reduce the number of reflux events, but would come with the major drawback of being connected to a feeding pump 24/7. We decided to go with the ND tube.

They moved Jocelyn from her shared NICU room to a big room that Joshua and I could sleep in. Before discharge, we were required to “room in” to learn her cares. I gladly traded 8+ hours of sleep to finally be in the same room as her. For the first time we were like a family, and on March 29th Jocelyn graduated from the NICU.

So far, Jocelyn’s had six ER visits and four hospital admissions, totaling 62. On June 21st, she was finally home as much as in the hospital.

As of now, we’re balancing speciality doctor clinic appointments, weekly therapy sessions, and time as a family. She got accepted into the birth to three program and is doing weekly PT, OT, and feeding therapy. Life has been busy, beautiful, hard, and full of love.

 

 

 

Update III

The MRI on the 19th of January was super informative, and I’m extremely grateful that I got one. The results showed the severity of her hydrocephalus. With her ventricles in the 30-40mm range. They should both be under 10mm. Even though that’s bigger than our last Dr’s visit, they measure the ventricles differently in an MRI compared to an ultrasound, so they very well could have remained the same. I’m hoping they stabilized.

After the MRI was completed, Joshua and I met with a neurologist at Seattle Children’s, and she was very informative, kind, and smart. She explained that she couldn’t find any malformation or blockage in her brain. There’s no cyst or tumor blocking the ventricles from draining. She was also happy that all of her brain is developed, it’s just severely squished. She also couldn’t find anything else wrong with her body. Her determination is that the hydrocephalus is caused by aqueduct stenosis, the narrowing of the aqueduct of Sylvius (the 3rd ventricle) which blocks the flow of cerebrospinal fluid (CSF) to the ventricular system. It’s just how her brain developed. There was nothing I did, and nothing she did, that could have caused or stopped this from happening. The 3rd ventricle just developed funky, with possible webbing on the inside, preventing the fluid to fully drain.

The only scary thing I heard was that there was so much pressure building up in her small little head, that it found a way to pop a hole and escape from the top of her brain. This is cause for concern, because anytime there’s an opening in the brain, it brings along a 20% chance of seizures.

She explained possible outcomes for her, and predicted a 90% chance of mild to moderate developmental delays. I’m thankful for all the various therapies they have for children. I never knew about occupational, physical, and speech therapies for infants. I’m hoping to get her on a plan that we’re all comfortable with.

I have an appointment with Dr. Cheng at UW tomorrow (when I’m 34 weeks) to have an ultrasound to determine when Jocelyn should be born. It’ll also be dependent on the surgeons at Seattle Children’s, and when they’re willing to operate on her. I’m hoping and praying it’s the best date for both of us. I personally want her to be here as soon as possible.

Speaking of when she should be born, I had a scary week! Last Thursday I started to have strong, extremely painful contractions every 4-5 minutes. After an hour of them not going away, I texted Joshua to come and take me to the hospital. I checked into St. Peter’s, even though I’m supposed to deliver at UW, because it was the closest hospital. They ran every test imaginable to try and figure out why they were happening, and every one came back negative. They filled me with 2 liters of fluid in an IV, thinking it could have been caused by dehydration, but that didn’t stop them either. They checked me twice, but both times I didn’t dilate at all. They were stumped as to why I was having consistent contractions without going into active labor, so they called UW and told us to head up there. We took the drive up to Seattle, they did the same tests, and also couldn’t explain why it was happening. The best they could say was, “pregnancy sucks, we don’t know why your uterus is angry. This should pass within a couple of days, but if it doesn’t, head back up here.” So I spent Thursday through Saturday dealing with contractions and a huge amount of lower back pain and pelvic pressure. Thankfully, today I feel much better. The contractions are coming around every hour, and the pressure isn’t quite as bad.

I’m hoping what happened to me can sway a decision on when Jocelyn should be born. She’s been head down for over a month. Maybe it’s just so big, and my torso is so tiny, that my body is thinking it should get prepped for labor. And here I thought I wouldn’t have to deal with the pains of labor because of having a scheduled c-section. Boy was I wrong!

I’m hoping to feel more prepared after the visit tomorrow. It’ll help us figure out when we should kick everything into high gear to prepare for her arrival.

 

 

 

Update II

Day to day, things have been getting easier. I owe that to my family, friends, and amazing husband who have let me heal from afar. From the bottom of my heart, thank  you for loving and supporting me, even when I couldn’t be around or talk. Also, thank you for all the prayers. To the close friends and family that I talked to, thanks for just being there for me and for letting me grieve. For not trying to rush me out of feeling bad, and for giving me great advice when I needed it.

I’m not 100% better. I still deal with bouts of jealousy when I see a healthy baby or a glowing pregnant woman. I still worry about the future and what her prognosis is going to be. I still want a healthy child who doesn’t have a disability. But I’m thankful that it’s getting easier.

We transferred up to UW and I had my first appointment on December 23rd, when I was 27 weeks pregnant, and I’m so happy with that decision. I feel like we’re getting the best care imaginable. I was born 3 months early, weighing 1 pound 12 ounces, and had to stay in UW’s NICU for almost 3 months. I was in good hands then, and my baby will be in good hands now. The ultrasound that morning showed that her ventricles stabilized from her scan two weeks prior. One ventricle was at 22mm, and the other was at 29mm. This is positive news. This means that her ventricles are partially working and draining. Her head still measured about 1-2 weeks ahead of schedule.

I’m going to have an MRI this Thursday at Seattle Children’s to hopefully give more answers. It’s going to check for any abnormalities in her brain that an ultrasound can’t detect, and will hopefully explain why this is happening. Once the Doctors know why it’s happening, it will help determine the best surgery route for her and when they plan on doing the surgery. It’ll also determine when my due date should be. I’m hoping upon hope for ventricles that have stabilized or that have miraculously gone down.

She’s been super active and growing stronger every day. I love her kicks and adorable hiccups. Joshua can see her movements while watching my belly, and I’ve been trying to capture a video of her moving. It’s such a surreal but amazing experience.

It’s crazy how much I already love her with all my heart. That I would give anything in the world for her. I would trade having hydrocephalus in a moment, if it meant that she didn’t have it.

 

 

 

Update

What a hard couple of weeks. Filled with waiting, and some answers. The pain still hasn’t subsided, and I don’t know when it will.

I finally found out my amnio results. And thankfully, they came up negative. This means that the amnio didn’t detect any sort of genetic disorders, or chromosomal abnormalities like Down syndrome. It confirmed, along with the ultrasounds, that she doesn’t have a neural tube defect like spina bifida. It was also negative for fetal infections like cytomegalovirus and toxoplasmosis.

I was on pins and needles for weeks waiting for these results, especially for Down syndrome and toxoplasmosis. Cats play an important part in the spread of toxoplasmosis through their feces. It also spreads through consuming undercooked meat. Currently, I’m living with three kitties, and even though I haven’t touched the litter-box since I found out I was pregnant, there was still a chance that I could have got the parasite. It didn’t help that the symptoms my baby currently has is exactly what would happen if she had the infection. When a fetus gets toxoplasmosis, they can develop (among other things) hydrocephalus and an intra uterine growth restriction, which is any fetus under the 10th percentile. As of the last scan, she measured in the 7th percentile. Waiting for the results, on-top of dealing with my baby girl’s hydro, was devastating. If I found out she had an infection that I could have easily prevented, I wouldn’t be able to live with myself.

We had a second appointment with the OB/GYN specialist after another ultrasound on December 9th at Multicare Maternal Fetal Medicine in Tacoma. During that scan, I was 25 weeks pregnant, and her body measured in the 7th percentile, with her head between the 97th to 98th. It measured two weeks ahead of schedule. I also heard the bad news that 1 ventricle raised from 21mm to 31mm. The other stayed around the same at 22mm. For a healthy baby, both should be under 10mm. Rather than hear that her condition stayed the same or got better, I heard that it got worse. And that was the hardest news to hear.

During that appointment, I mentioned that I’d done a lot of research about hydrocephalus and it’s treatment options. I brought up how I would be more comfortable having the baby’s probable surgery at Seattle Children’s rather than Mary Bridge Children’s Hospital. Seattle Children’s is ranked nationally in 10 children’s specialities, including neurology and neurosurgery in which they rank 9th. They have a huge team of neurosurgeons that can do shunt surgeries in their sleep. They also are in the process of developing new ways to treat hydrocephalus. Starting from her first day of life, I want her to receive the best care possible.

After that appointment, I immediately told my OB doctor here in Olympia that I wanted to be switched to the Maternal and Infant Care at UW because of it’s connection to Seattle Children’s, and she started the referral process. I heard from UW a couple days later, and everything went through. I have my first appointment with them on the 23rd. I’m hoping to schedule a fetal MRI and a meeting with a pediatric neurosurgeon ASAP.

Lastly, I heard from the genetic counselor that my insurance is going to cover a microarray from the amnio test. This is a more thorough test that analyzes the chromosomes in more detail. It can tell if there are any micro-deletions and/or micro-duplications in the  chromosomes. It brings the small possibility of explaining why she might have hydro. If it’s genetic or just how her brain developed.

So, here’s to more waiting…Waiting for the microarray results, and waiting for the first UW visit. Waiting for an MRI, and waiting for her to be born. I have no idea what her ventricles are now. Are they the same, better, or worse? Is she in any pain?

Honestly, I just want to sleep until she’s born.

 

 

Waiting…

Boy, do I despise waiting…

And it’s all I’ve been doing lately. I’m waiting for the amnio results to come back, which are more than 2 weeks late. Waiting for another ultrasound to see if her ventricles are the same size or bigger. Waiting for my fetal MRI. Waiting to see what’s going to happen to my baby girl once she’s born. This brings the thought of surgery and shunts, and what’ll happen once she has one. I’m not a very patient person. I also have high anxiety.

So much is out of my control. There’s too many unknowns and too many variables. I can’t seem to wrap my head around it all. It’s to the point that I can feel the stress and worry in my shoulders and neck. It’s also affecting how I sleep.

The only good news I’ve heard so far is that my gestational diabetes test came back negative. That’s something I can cross off the “things to worry about” list.

You can call this fate or a coincidence, but on my drive home from work today I heard a familiar song by for KING & COUNTRY called “It’s Not Over Yet.” What drove up and stayed directly to my left during the entire song was a Pediatric and Neonatal ambulance for Mary Bridge Children’s Hospital. Probably transporting a precious child. My eyes couldn’t help but well up.

They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you wanna settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet, it’s not over yet
And even when you think you’re finished
It’s not over yet, it’s not over yet
Keep on fighting
Out of the dark, into the light, it’s not over
Hope is rising
Never give in, never give up, it’s not over yet

 

 

 

Upside Down

The past couple weeks have felt like a nightmare. Sometime soon, someone is going to shake me awake, and I’m going to tell them all about the worst dream of my life, because this can’t be real life.

I have to imagine that this is the worst pain a parent or soon-to-be parent can face. Hearing and dealing with a child’s diagnosis. I would give anything to take the hydro away from her and have it myself.

I went in for a routine 20 week ultrasound on November 4th. There my husband and I saw our baby from head to toe, and she confirmed it was a girl. I had joyous tears streaming down my face, and was so elated. We immediately told all family members and announced the news online.

I got a voicemail the following Tuesday, November 8th, that a nurse wanted to go over the ultrasound findings with me over the phone. I figured that she wanted to discuss my bicornuate (heart-shaped uterus) because that was noticed during an 11 week ultrasound. There was no way it could be anything major.

I remember the phone call vividly. A friend told me a joke when she answered the phone, so I had to regain my composure. I was in an upbeat mood. It’s crazy how fast life can change, and the wind can get knocked from your lungs. She told me that the radiologist had some concerns in that he noticed my baby girl’s ventricles measured 2 centimeters, that they should both be under 1, and that there’s fluid building up on her brain. She said that they didn’t have the technology or the specialists at the practice I was currently at, so she wanted to refer me someplace else. I left the phone call in utter shock. I had no idea a condition like this even existed.

I got the phone call from the specialist the following day, and the receptionist told me that it was wise to make an appointment as soon as possible, and that the earliest they could see me was November 17th. Like any worried parent or soon-to-be parent, I spent the following week researching non-stop about hydrocephalus and ventriculotomy. I learned about shunts, infection rates, and that it’s a permanent condition. That if my baby has it, that surgery will more than likely be needed. Even though I had all these facts and fears, I was praying that the original ultrasound was wrong. That this had to be a misdiagnosis.

The 30 minute drive up to the specialists in Tacoma, WA was nerve-wracking to say the least. I could hardly eat breakfast, and Joshua was trying to calm my nerves. When the ultrasound tech started her scan, she immediately started with her head, and that’s when the waterfalls started. I couldn’t help but cry during the entire exam. When she finished, she told me that she was going to grab the doctor. When the doctor arrived, she had a confused look on her face. I immediately asked, “do you not see it?!” Hoping that it was in fact a misdiagnosis, and that the whole trip was pointless, but there she confirmed that my girl had hydrocephalus. That one ventricle was measuring 23 mm, and the other was at 21 mm. She also pointed out that her body was in the 6th percentile, and her head was in the 97th. Her body isn’t growing as fast as they’d like, because the umbilical cord from the placenta is placed low. They also noticed a smaller than normal femur bone. Because of all these “soft markers” she was concerned that she might have Down syndrome.

After the appointment with the specialist, we met with a genetic counselor. There, we learned all about the genetics that make up a baby, and the possibilities of her having Down syndrome. We left the appointment with an amnio scheduled for the following day. My husband and I were both concerned about the risk for miscarriage, so we spent the evening talking and deciding on if we wanted to go through with it or not. Eventually, we decided that the need to know outweighed the possible small risk. Overall, the amnio test wasn’t that bad. It was hardly painful, and extremely quick. I spent the rest of my weekend resting at home.

So now, I’m in the process of waiting, and I’m not a very patient person. I’m waiting to hear back about the amnio results. I’m also waiting for my future ultrasound on December 9th. I’m hoping to God the ventricles are either the same or smaller, and that the fluid in her brain is either the same or reduced. I’m also interested in having a fetal MRI done soon.

Overall, this is the hardest thing I’ve ever dealt with, and I don’t know when it’s going to get easier. It’s hard to listen to everybody’s advice to stay positive and to enjoy my pregnancy. It’s gotten to the point where I’ve announced to everyone that I don’t want their advice unless I ask for it. I can’t keep a fake smile on my face, so I feel like I’m making everybody around me uncomfortable with this dark cloud over me. And to be honest, I’m super jealous of happy parents and parents-to-be. I want to shake them by the shoulders and say, “You have NO IDEA what I’m going through, you have no idea how my world has turned upside down!”