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.