Sometimes I think our story sounds made up, something fit for the big screen. It is laced with triumph and tragedy, beauty and dismay. Regardless of any pain or disappointments, our story is God-written and His hand has never left us... even when it's felt like it. I believe we have endured a lot of things in our five years together that many don't experience in one lifetime. Sometimes these things threaten to induce bitterness, so it's a 'one day at a time' decision to dwell on the beautiful things.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. - Philippians 4:8
Daniel and I met informally in August of 2005 after his family moved here to Florida from California. They had happened to inherit a house just four minutes from where I lived with my parents and brothers. We met at a church function and soon I was doing web design and photography work for the Christian hardcore band he was in.
It didn't take long before we started dating in April of 2006 and only two months into our relationship, we had the "forever" talk... in the pouring rain and everything. In October, Daniel gave me a promise ring. Two months later, he left the band to pursue a life with me, and in June of 2007, he proposed.
We planned to get married in January 2008 but exactly three months before the wedding, Daniel was laid off from his job. We had to cancel the wedding, or rather "indefinitely postpone" it. We were crushed. It was the worst thing that had ever happened to us, or so we thought. We didn't know when we'd finally be able to get married. I was just a preschool teacher and Daniel was only able to find a landscaping job and started attending the community college in January. In May, my older brother, Ron, moved back home. This presented itself as an opportunity that helped out all three of us. We decided to have Ron as a housemate, sharing the costs of the household. We then were able to set a date for our wedding, knowing Ron's help would hold us over until Daniel was finished with his schooling.
Daniel and I were married on October 18, 2008. It was a beautiful day.
We had originally planned to wait at least a year before we started trying for a baby. Anyone that knows me knows that I have been naming my future babies since I was old enough to play with dolls. To be a mother is all I have ever wanted. I even dropped out of college because I just couldn't manage to find any career ambition. My desire for motherhood clouded my goals and any career I could come up with paled in comparison. Needless to say, we did not wait a year before we made the decision to have a baby.
Just two weeks later, at exactly 25 weeks, I had my very last OB appointment. Our baby's heartbeat was hard to find and slower than usual, but we chalked it up to it being a new physician's assistant. Even the next day, it still didn't sit right with me and I began to feel concerned. Our little girl was never super active. She never kicked hard enough for anyone to feel her from the outside. This being my first pregnancy, I didn't know that it wasn't normal. I didn't know she should've been packing a decent punch by then. I just assumed that it was because I was overweight that I couldn't feel her too well. The night of March 10th, I suddenly had a panic attack, fearing that something was wrong. It came over me so quickly, bringing me into hysterical tears. I remember saying to Daniel, "What if something is wrong with her?" He tried to assure me that there was no reason anything should be wrong. I wasn't convinced, but for whatever reason, my tears stopped and I calmed down almost as quickly as I unraveled. I later came to believe that in that moment of terror is when our little girl was passing away inside me.
The next afternoon, March 11th, Daniel and I went to labor and delivery for peace of mind. After several nurses failed to pick up our baby girl's heartbeat on the doppler, an ultrasound confirmed the most devastating and horrific news no parent dares imagine. Our little girl was still. And so was her tiny heart.
Avery Nicole was born asleep on March 13, 2010 at 5:05am, weighing just 8.2 ounces and was just 8 1/4 inches long. It only took ten hours of labor to undo what six months of pregnancy built. Avery came into the world so silently. No precious cry, just our tears. No smiles, just grief. Hideous, aching grief. We held her and kissed her. We photographed her. She looked just like her Daddy. Her little nose and her tiny hands and feet were my favorite. I can still feel her little hand between my thumb and forefinger. I can feel her cold body in my hands. I memorized her the best I could, trying to fit an entire lifetime with my daughter into seven hours. Giving her up to the nurse was the hardest moment of our lives, watching our baby girl be whisked away under a blanket, never coming back. Never coming home with us, never growing up. (Please visit Avery's blog for a more detailed account of her death and birth.)
In my follow up appointments, we learned the results of the blood tests that were taken while I was in the hospital. We found out that I have two blood clotting mutations: MTHFR and Factor II G20210A. The doctors believe these are what took Avery away from us. They caused blood clots in the placenta and in her umbilical cord. It was hard to accept that my own body harmed my daughter. While it was not my fault, and completely out of my control, my womb, where she should have been the safest, failed her miserably. Four weeks after Avery was born, I ended up in the emergency room with gallstones. I was told they were brought on by pregnancy. A month later, I had surgery to have my gallbladder removed. Just another of life's hurdles. It all felt so overwhelming.
It took a while for life to retain any semblance of normalcy. To be able to breathe without feeling shards of glass in my lungs. In June, three months after losing Avery, we made the very difficult decision to try again for our Rainbow Baby. A Rainbow Baby is the baby born after a loss... The rainbow after the storm. This was the next long struggle for Daniel and me. Month after disappointing month. With each failed month, I feared more and more that Avery would be the only child I could conceive. It was hard enough to be trying again instead of nurturing an infant. It added insult to injury in the worst way.
Finally, on January 21, 2011, I took a pregnancy test early just to put me out of my misery for the ninth month in a row. But we were pleasantly surprised when the word "Pregnant" popped up on the digital screen. We burst into tears and held each other. We were so thrilled and so scared at the same time. We were very aware that the same thing could happen again. The bliss was gone. It would be a long road to our Rainbow.
For my high risk pregnancy, I was immediately put on folic acid and also daily Lovenox injections to thin my blood. I would have monthly ultrasounds and I would see a hematologist and a maternal fetal medicine specialist. I had so many fears and worried a lot and I honestly have never prayed more in my life. So many times each day, I would utter out a prayer to God, that became more like a plea for our child's life. I ended up saying pretty much the same thing every single time. If it were possible, God would have gotten sick of my monotonous pleading! I had my days of strong faith and my days of fearful weakness. But each and everyday, I was in love with our baby and cherishing every single little moment. I absolutely love being pregnant. Even in fear, I enjoyed every second of life dancing in my womb.
On April 12th, at just 15 weeks and 2 days, we found out our precious Rainbow was a boy. We knew right then that he was Jude. We were so excited to find out so early on. We took it as a sign that he was really healthy and was developing very well. Our milestone week, though, was week 25, since it was the week we lost Avery. I was extra paranoid that week, but felt so confident and elated when I hit week 26! I loved watching my belly grow bigger and bigger, since I never really looked pregnant with Avery. I loved feeling Jude get stronger and kick me really hard. I loved letting other people feel him kick. I loved watching him kick! How amazing! I savored every little bit, always aware in the back of my mind that these things may be all I would know of my son.
Everything was going perfectly, until suddenly it wasn't. At 30 weeks on the dot, I had a horrible pain in my upper abdomen. Daniel and I went to labor and delivery, feeling some terrible deja vu from last time. I knew Jude was safe this time at least. I think God helped us out because he was kicking away like crazy, letting me know he was still with us. It turned out that I had elevated blood pressure, the first thing that went wrong with Avery at just 16 weeks. I was admitted and they kept me overnight for observation. My blood pressure wasn't staying consecutively high enough to put me on medication (Labetalol) so I just had to be monitored very well and have non stress tests (NST) on Jude. Just a precaution, they gave me a round of steroid shots to help mature Jude's lungs quicker just in case my blood pressure skyrocketed. If we faced pre-eclampsia, the only remedy would be delivery. Thankfully, that didn't happen. My labs came back normal and my pressure stabilized. I was discharged the following afternoon and ordered to go on bed rest and keep a close eye on my blood pressure.
I took it very easy over the next week, but obsessed over my blood pressure. I'm sure that didn't help, but it wasn't something I could control. On Saturday, July 30th, things just didn't feel right. I had an uneasy feeling and I didn't feel like Jude was as active as usual. I was at my parents' house and my aunt and uncle were over. My aunt was asking me about the baby shower in two weeks and I just had this nagging notion that maybe Jude wouldn't make it until then. I went into the bathroom to give myself my shot and I sat there, praying. I began begging God to let me keep Jude, tears streaming down my face. I couldn't help but feel like something wasn't right. Maybe the same intuition I had with Avery. I couldn't just ignore it. I had Daniel run home and get my fetal doppler that I used constantly. I was relieved to find Jude's heartbeat, but I was not content with his lack of energy. I took my blood pressure again and it was high. My doctor had told me if it stays high for more than 30 minutes, then I need to go to the hospital. Sure enough, 30 minutes later, it was still high. Without a beat, we decided to go to labor and delivery.
Once on the fetal monitor and the blood pressure monitor, I felt safer. I spoke of my concerns of Jude's movements but was told that movement slows down when the baby gets bigger and that it's normal. I didn't agree. My doctor had me stay the night at the hospital for my own peace of mind because she knew I'd be paranoid if they sent me home. In the morning she ordered a biophysical profile ultrasound and a cord doppler. Just moments after I got back to my room, my favorite nurse, Daniele, who was a saving grace when I had Avery, came in. I knew immediately something was going on. She told me Jude looked great but the blood pressure in his cord was elevated and he would have to be born. She said my doctor would arrive to perform the c-section in a little more than an hour. I couldn't believe it. Jude was coming at just 31 weeks. Because I was on Lovenox, I couldn't have a spinal so I would have to be put under anesthesia. That also meant that Daniel would not be allowed in the operating room. Neither of us would be able to witness the birth of our tiny sweet baby. It was a hard reality to face. Not the birthing scenario I'd fantasized about for the past 31 weeks. The most important thing was that he'd be alive, but it was still difficult to face yet another dire situation.
Jude Wesley was born via emergency c-section on July 31, 2011 at 12:37pm, weighing 3 pounds 1.1 ounces, and was 15.5 inches long. He was born breathing on his own and did not need to be intubated. He was only on 35% oxygen for less than 24 hours. During my surgery, I had a bad bleeding issue and needed a plasma transfusion. I slept most of the day, while mine and Daniel's families got to meet Jude in the NICU. I had consented to this because I had no idea when I'd be stable enough to be mobile and go meet Jude. I didn't want everyone to have to wait to finally see him. I know they were anxious to finally meet him as well.
Almost twelve hours after Jude was born, I finally took the wheelchair ride down the hall to the NICU. It was a hellacious struggle, to put it mildly, to get out of the bed and into the chair. I could not believe how much pain I was in... and I'm not a wimp either. When I got to my sweet baby, it was hard to see him because he was at eye level under the warmer. My medication was making me groggy and I was fighting to stay awake. I touched his little hand but I just wasn't mentally present enough to really take in the moment and feel it. The next afternoon, when I was feeling much better and more functional, I got to hold Jude for the very first time. That was finally my moment. I cried as he looked up at me, moving and breathing... Alive. I struggled with sadness that my pregnancy once again ended abruptly and that I would once again leave the hospital without my baby, but I was so relieved that he made it here safely. My doctor later told me that if he hadn't been born, he would not have made it through the week. The same thing that had happened to Avery was beginning to happen to Jude. The placenta was once again failing. They saved him just in time. What a miracle. Thank you, God.
I was discharged from the hospital a few days later, so unsure of how long our NICU journey would be. I ached so badly to bring Jude home and nurture him the way a mother is supposed to. We were so fortunate that Jude did so well in the NICU. He had no setbacks and only progressed in his growth and learning. That still didn't make it easy to leave him every night. I cried saying bye to him so many times. All the seemingly constant pumping breast milk and the back and forth to the hospital was taxing. As his stay came close to the end, things did go wrong... for me. On August 28th, again four weeks after giving birth, I had a horrible pain in my back. I couldn't breathe without a sharp, severe sensation. I took the last of my pain medication from my c-section to ease the pain, but Daniel encouraged me to go to the emergency room. Who knows what it could be... and what would I do when the pain came back and I had no more pills?
After an x-ray and a CT scan, they found that I had pulmonary embolisms... blood clots in my lungs. They concluded that they were caused by the bleeding from my c-section. It was perfect timing that I went to the hospital. I came so close to the end without even knowing it. I later read that only some people have pain with a PE. The first symptom for others is sudden death. Wow. God really had His hand on me. For the next four days, I was in the hospital and it was the worst time of my life, next to losing Avery. I cried so much everyday. I felt so uniformed and so lost under the care of the doctors. I felt like I was just waiting and waiting, with no information. Sleeping was so hard, between pumping milk for Jude and blood tests around the clock. Due to the stress in my body and the emotional toll of the situation, my milk supply began to dwindle. It was upsetting. But I opted to stay on two Lovenox shots a day to shrink the clots so I could pump and soon breastfeed, instead of painlessly taking a Coumadin pill because they are dangerous to babies. For the several days I was hospitalized, Jude was learning to eat by mouth. He was learning to eat without me. This all proved fatal for my chance to nurse him like I'd planned. Another loss for me. To this day, I still feel like it's something I should be ashamed of.
After much effort on my parents' part (tracking down Lovenox in the right dose), they finally agreed to discharge me. It was Thursday, September 1st. I got the call in my room upstairs that Jude was ready to go home. We would be going home the same day. I am sad though that his discharge day was clouded by my traumatic clot experience. Even so, it was the day we prayed and waited for! It was like a dream, dressing him in his tiny going home outfit and putting him in his car seat. Walking out of the NICU with him. Putting him in our little SUV. Riding in the car with him. Seeing him in the light of day. Crossing the threshold of our cute little house with him. Thank you, God, for letting us bring our baby home.
Through all of the life threatening medical issues I endured after Jude's birth, paired with Avery's loss, my doctors highly recommended that we not have any more children. This was a very low blow. It made it even harder that we agreed with them, though reluctantly. The multitude of extra care only bought us six more weeks for Jude. My body did the same exact thing as the first time, it was just prolonged a little. Four weeks after both pregnancies ended, something went terribly wrong in my body. What could happen next time? My doctor assured me I'd very likely have another preterm birth... or even worse, another loss. We could never bear that again. Another preemie may not do as well as Jude did. And burying another child would definitely break us forever. So this is a new reality that we are to this day still trying to come to terms with and accept. It has not been easy. Our joy over Jude is mixed with sadness over our lost dreams. It's difficult to live that way. All we want to do is enjoy our miracle. We don't want to make room for the sadness. We do better as the months go on, but new babies around us and seeing siblings together can spark the pain at any moment.
Now, I am on Coumadin indefinitely. Once a month, I have to go to the hematologist for a blood test to check my INR. It tells me how thick my blood is. I have to stay between a certain range to be safe from future clots. Because of my medication, I cannot eat many foods high in vitamin K, a natural clotting aid. It would interfere with my medication and possibly make my blood too thick. This includes healthy foods like lettuce, broccoli, cauliflower, spinach... It definitely makes it more difficult to make healthy choices. I cannot get pregnant on my medication or it is most likely lethal to the baby. Not only should we not get pregnant, but we cannot. Because of my clotting mutations and previous clots, I am not allowed to take birth control, making it even more of a conscious issue, fighting to avoid the one thing we want most.
Despite the hardships and traumas we have endured, we know our little family is blessed. We cherish each and every moment with Jude, watching him grow and learn. It's hard to watch him get bigger and bigger, knowing we will never experience these precious stages again, but we are so grateful that we get to share these amazing moments with him. He is a miracle, alive because of his big sister in Heaven. Jude will grow up loving her as if she was here all along. He will grow up with so much love. He is our greatest gift and the joy of our hearts.
It's our hope to find true peace in our circumstances. To find complete joy in these beautiful things that God made out of the dust. We are works in progress, but by the Grace of God, we will get there.
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