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!”