I'd made it through the first trimester & I thought I was in the clear to start buying things online (nursing pillow, nursing cover, a carrier with matching leggings because I just KNEW she was a girl, etc.). I started imagining the outfits I would have her wear & how I'd do her hair, who she'd look like, how our dog, Tyson, would be with her, if I was going to cloth diaper & which breast pump I would buy. Everything was perfect. It always had been. I always got great grades & graduated with a Bachelor's in Nursing. I was talented in gymnastics, drawing & cheer. I was good with kids & I was pretty. Ryan was amazing at every sport he did. He was so smart & so handsome. He was a former youth leader & loved kids. He had just joined the army & was a great soldier. We attended church on a regular basis. We were kind & fit & financially stable. Our parents were still married after 20+ years as well as our grandparents & we had amazing friends who loved God as much as we did. Nothing was going to happen. Everything was perfect... until it wasn't.
October 31st, (aka Knowing Day) we went into the ultrasound room giddy to see our growing baby. The ultrasound tech put the warm gel on my belly & we saw our baby kicking! She looked.. & looked.. & looked. She tilted the bed back because we couldn't get a good picture of her head. Still couldn't. She did a transvaginal ultrasound to get a closer view & called the doctor in. With no hesitation, Dr. Hill said "you're baby has a neural tube defect called Acrania/Anencephaly". She went on to explain what it meant, but I didn't listen to her. I knew those words.. I'd studied them in nursing school. I'd seen the graphic pictures in my textbooks. I knew.. but Ryan didn't. She told us our baby wouldn't survive & said she would leave us alone for a few minutes to gather ourselves.
Ryan stood in front of me & held both my hands & I asked him to pray. I don't remember the words he said, but I felt a lot better hearing him talking to God. As I choked back tears, Dr. Hill reentered the room & told us our options. Terminate the pregnancy or carry our baby. Without even looking at eachother, we both said "we'd never terminate". From that moment on Dr. Hill never asked again about our decision to carry to term & encouraged questions. We were to be seen every 2 or 3 weeks from then on because, in the words of Dr. Hill, "this is an extra way to bond with your baby". I wish I'd thanked her for not pressuring us to terminate because, unfortunately, many doctors do.
We called our families & I updated my status on Facebook stating our devastating news. No one could believe this was happening to us & honestly, we didn't either. The next week we had an appointment for any questions that we had & found our that I was right & she was a GIRL! I'm a resesarcher, so I had written down tons of questions (I had a list of questions for every appointment we had after that, as well). I asked things like "can we donate her organs or my breastmilk?", "will I make it to full term?", & "how soon can I write out a birth plan?". Ryan had questions too. He asked things like "could anything happen to Tiffany?", "was this anything we did?", & "how can we prevent this in future pregnancies?". When we got in the car, I asked if we could name her Joy because she'd made us so happy & he agreed.
I made her a page on Facebook called Prayers for Joy Hubb (which is now Joy in the Journey). I posted weekly updates with any new information we found out, pictures of my bump (even though I never even got a big belly, haha), requests for prayers for us to have strength & understanding, to raise awareness for Anencephaly & for us to share the word of God through our journey with Joy. The outpouring of love was overwhelming. There were countless messages & comments from people who have gone through a loss of a child (some even to Anencephaly) & I mourned with each of them.
I had a normal pregnancy (minus the neural tube defect). Morning sickness, cravings, back pain, braxton hicks contractions, heartburn, super painful rib kicks/being kept up all night by kicks, being constantly hungry but only being able to eat a little because there was no more room. But on Wednesday night, February 18th, I started having real contractions. I was only 31 weeks, so I didn't think they were real at the time & I attributed it to the workout we'd done the night before. The next day, they were a bit worse, so I took it easy all day with Tyson laying right beside me. By the time Ryan got home from work, they started getting closer & he had me call the nurse line to see if they thought I should come in. Ryan showered while I talked to the nurse & we ate some wings before the 30 minute drive to the hospital.
I walked to Labor & Delivery holding Ryan's hand. They had me hooked up fairly quickly & I was laughing with the nurse so she didn't believe I was really in pain. She soon noticed that they were very close contractions on the monitor & had the doctor come check to see if I was dilated. Sure enough, I was a 5 cm with a bulging bag of water. I began to cry & whispered to Ryan that I was scared. As they prepped my room & I handed them my poor excuse for a birth plan (it was a rough draft that I had stuck in my wallet to take to our next appointment to be looked over), Ryan called our families even though it was 4 am back in Virginia. When I got to my room, my water broke not 30 minutes later. The nurse stayed with Ryan & I the whole time & even prayed with us. I don't remember her name or even what she looked like, but I can tell you she was a blessing. She helped coach Ryan on how to coach me through the epidural free birth I wanted & encouraged me the whole time.
After only 3.5 hours, I'd progressed to 10cm & could start pushing. I only had to push for about 5 minutes until Joy came. She had kicked me up until the last push & I knew she was gone. On February 20, 2015, 4:25 am, our Joy was born sleeping. Ryan held her, then me. She was beautiful, silent, & so tiny, but tall. She got her bath, weighed, & measured. 2lbs 2.5 ounces & 13.5 inches long. She had green eyes like me, dark hair at the nape of her neck, & Ryan's feet. We held her, held eachother, smiled, cried, prayed, & I sang to her. Karl Hedberg from Now I Lay Me Down to Sleep came to take pictures for us. We dressed her in a cheetah print dress my mom bought her when I was only 9 weeks. He did a beautiful job at capturing this short time we had with Joy & the memories from that day.
After 7 hours of Ryan & I passing her back & forth because we just couldn't put her down, I noticed her already bruised skin was turning darker & decided to let them take her. Ryan held me as I cried & I had never felt closer to him than I did in that moment. We were released from the hospital later that morning after we met with the bereavement counselor, the lactation consultant & the doctor. Leaving the hospital with empty arms was the hardest thing I ever did.. I thought.
We decided to take her body back to Virginia to be buried back home so we flew out a few days later. Her funeral was beautiful. We had an open casket viewing for family & a closed casket during the services which were done by one of our best friends & pastor, Josh Tompkins. He told the story of David & Bathsheba losing their son to an illness & how David chose to praise Him through his storm. We had a balloon release after her burial with green & pink balloons. I was numb that day. I don't remember crying at all until I laid down to go to sleep that night. I've never hurt as much as I did kissing her goodbye.
The following months, I pumped the breastmilk she gave me. At first, it broke my heart knowing she'd given me this milk & that she wouldn't be the one getting it. I donated my first few ounces to a grateful mom & baby & it fueled my desire to pump as much as possible. I set a goal of 5000 oz & met it just short of 4 months. In those 4 months, Joy's legacy milk nourished 15 local babies & many babies from the milk bank that I donated to in California.
Her 1/2 birthday is today, August 20th. I can't believe that time has kept going without her here. I still have hard days a lot, but I have an overwhelming peace that I can't put into words. A friend of mine on the anencephaly support group said something along the lines of, "it's our job as parents to bring our children up to know the Lord & our babies have already met Him" & I know that is why I have such a peace that only God can give.
Joy made us parents. She will always be our first baby. Our future children will know of their big sister & the huge impact she had on the world in the short time she was here. We will always speak of her & share our Joy with the world. We will always spread awareness for Anencephaly.
- Joy's mommy, Tiffany
