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This is the story of my son and I. It was written 21 months out. At 23 months out my blood work finally reached normal, and today we are just shy of 29 months out.
Hi, I’m Jade and my story starts a long time ago. When I was 20 I got married; I got pregnant a year later and was ecstatic! Shortly after the end of the first trimester, I lost my first child and my husband and I were crushed. Two years later I ended up needing fertility treatments to get pregnant again. After working so hard to get pregnant again, I was so happy and relieved. Again though, shortly after the end of the first trimester, we lost our second child. It was so hard to deal with both the losses. I spent the next 7 years infertile. I constantly felt that it was my fault that my children had passed; I felt broken. There wasn’t anything else to do, I was broken and cast aside. We tried to adopt but both times things started to look hopeful, the birth mothers backed out. I can’t blame them at all, I wouldn’t be able to give up my child either, but again we were crushed. After 7 years of infertility I prayed and got the distinct feeling that if I was going to have a child, I would have a child at the age of 30, I was 29. When the time came that being 9 months pregnant and 30 would be impossible, I gave up hope yet again. At 30 years and 5 months old, I unexpectedly conceived without fertility treatments! I had been eating salads every day at work and a Cafeteria lady asked me if there was anything I needed to share, insinuating that I was pregnant. I was offended because it was “impossible.”
A few days later I found myself feeling that if the snack machine didn’t have the candy bar I wanted, I was going to cry. I then proceeded to buy three candy bars just to get the one I was wanting. I told my husband that night, it was time to take a test. When the test was positive, I promptly apologized to the cafeteria lady and explained my history to her as well as why I felt so defensive with her previously.
I found an excellent female OB/GYN, I instantly felt I could trust her with my life. She discovered I needed progesterone to carry my children. Something my previous doctors had deemed unnecessary. At 8 weeks gestation, she had saved my son’s life! The pregnancy proceeded and we found out we were to have a son. We decided upon the name “Nathaniel” because it means “a gift from God.” We instantly knew that was his name. It just sounded right. I was due in late March. The first trimester was so hard, I was so full of fear.
Every time I would move I would wonder if the baby was still alive, but really early on, he would rest his head against a nerve from time to time so I knew he was there. It was as though he was letting me know he was there and alright. As uncomfortable as it was, I was extremely grateful for that feeling and when my husband would ask if I was alright, I’d just smile and say “oh just a little head pain.” An ironic play on the fact I am prone to migraines. Due to my past and not wanting to have to explain everything should I lose this child too, I put my pregnancy on a need to know basis.
At the end of the second trimester and the beginning of the third, I started to retain water and I couldn’t lay flat due to indigestion. I’ve always had indigestion and everyone told me that fluid retention was normal as you enter the third trimester. I started to become short of breath, not be able to do what I used to, and my back began to hurt in three marble-sized places. I’ve always been plagued with migraines, but my headaches went away. No one thought anything was wrong. I didn’t feel right and to this day I don’t know how anyone can walk across a room without having to sit down while they are pregnant.
On December 21st, at my OB/GYN’s suggestion I visited a chiropractor to attempt to relieve the pain in my back. It worked but a few hours later all the pain flooded back at once. At that point, I developed a blind spot in my vision. I called Labor & Delivery in a nearby town and they said everything was probably alright but if I came in, they would put Nathaniel on the monitor and make sure we were both okay.
We drove 30 minutes to the hospital. When I got there, my blood pressure measured 220/130 and they estimated I would survive only another 15 minutes. In attempt to save us, they got me as stable as they could and transported us to the nearest hospital with a NICU. I was then about 45 minutes from home by normal route and speed limit. I was then told I had HELLP syndrome and that my son would have to be born before sunrise via emergency c-section.
Looking back at my hospital records, I am not at all certain how I survived, but at 27 weeks gestation, my son was born weighing 1lb 13.8oz and he was 14″ long. I woke up in ICU. Half of me is jealous of all the women who were able to be awake for their children’s birth, but when I look at my story and knowing how much my son must have struggled, I am glad I was not awake, I probably would have died of fright and worry. Three days later I was stable enough to be moved to the postpartum floor. On Christmas Day I was released from the hospital and was able to visit my son who had been first below me, then down the hall from me, for the first time.
A mother’s first thoughts when she sees her child are reportedly of love and pride. I love my son, to the ends of the earth, I love my son, but my first immediate thought was “how can something so small be alive?” He was so tiny, you could just about see through his skin, he was in the process of opening his eyes for the first time and he was jaundice-ridden. My husband said “that’s your little boy” and then the wonder and pride set in, but so did the fear. My husband had visited my son every day and spent countless hours in the NICU with him. He had reported to me what was going on with him and the NICU nurses had also come to me to give me updates on his status. I was still not doing well. I was not able to breathe well, was still retaining water, and could hardly walk.
Upon my release I went to stay at the Ronald McDonald House at the top of the hill near the hospital. At night I would wake myself up with my own death rattle. Knowing something wasn’t right I got in to see my OB/GYN as soon as I could. She saw me and was instantly gravely concerned. She sent me back to my first hospital’s ER. The doctor who had taken care of me the first time came to see me. He said I was definitely still not well, but he assured me I was much better than I had been the first time he had seen me. They began to treat my heart and then sent me back to the hospital where my son was being treated so that I could be treated in their cardiology department. I was admitted there with congestive heart failure.
Due to the damage done to my body and my heart failure I was advised to never become pregnant again. I have the normal chance of developing pre-ecclampsia and HELLP, but there is no chance of my survival should I develop either. I promptly advised everyone, I was infertile for years, and after this, I have no problems with not becoming pregnant again!
They maxed out my medications before my body responded, but it responded. Within three weeks I was back to my pre-pregnancy weight and was feeling 100 times better. When people would ask me how I was doing, I’d tell them “I’m still kicking, and there’s no bucket!”
My son continued to grow and progress. It was touch and go at first, but he pulled through. He was very blessed to not have any brain bleeds and to have wonderful neonatologists. He had to have a somewhat controversial steroid in order to get off the ventilators, but after it was administered, he gained the strength to breathe on his own and his once collapsing lungs began to heal! He hasn’t had any side effects from the steroid that we have seen and without it he may have lost the battle, so any side effects that appear later in his life, I feel are worth it as it almost certainly saved his life at that stage.
After 85 days in the NICU, with me by his side every day except one (when I was unable to visit him physically due to my condition compounded by a freak blizzard), he grew and progressed to the point he could go home.
On March 17th, 2011; just 5 days before his due date, my son came home. He was on oxygen and monitors, but he came home! I rode in the back seat with the child I never thought I’d have. I kept my hand on his side so I could feel his breathing and I cried. That was the best 45 minute drive of my life. With my husband at the wheel, I finally felt my life was complete.
Two weeks later, my son was released from the oxygen and monitors and for almost a year, my son had a nurse that would come to our home to check and make sure everything was going well. He is now just a few days shy of being 21 months old, he is nurse and therapist free, and has the all-clear not to return to the pediatrician until he is 5 unless he is sick. He may be small but he is right on track and doing well and progressing marvelously! He has been constantly surprising doctors, therapists, and teachers alike (he was born into a family of educators). I am truly blessed to have him in my life.
I have fared well as well. I will never have another biological child, but my heart normalized. I have a murmur and my heart was obviously damaged, but it now operates within the normal range as far as hearts go. I was treated for depression as well. I have been totally and completely medication free depression, heart, and otherwise for 5 months now and I am continuing to do well. My blood work is still a little off and my kidneys and liver are still not operating normally, but they are showing progress as they are still healing.
As for my husband, I know the stress has taken a toll on him and the mountain of medical bills can still very easily do us in financially, but knowing how blessed we are to have our Son, we both feel that any hardship we face will be bearable as long as he is in our lives. Though I can be hard to deal with at times, I know my husband feels the same way about me being his life as well.
We are grateful for our support system, our multitude of friends and family that showed concern. We are grateful we were employed for a wonderful company that bent over backwards to help us out. I was working in their corporate IT department and the medical and HR departments worked miracles to help us out. They were also wonderful allowing my husband to stay home from his normal company travels and work from his office and local branches so that he could visit me and our son in the hospital. He did have to travel once or twice after I was dismissed and doing well, and before Nathaniel was dismissed, but the company was amazing at doing whatever they could to help out.
To this day, I am infuriated at every pregnancy book that does not do more than simply mention HELLP syndrome. It is a deadly complication that can arise quickly and silently. It often takes lives before anyone knows what happened, yet little is done to help people recognize it. Less than 6 days before my son was born, by all diagnostics I was “normal.” I was told the pain I was feeling was normal, everyone thought my perceived body changes were causing me minimal discomfort, when in reality, multiple organ failure was causing me excruciating pain. Women need to be aware of their bodies and willing to push until someone listens. HELLP is a life-or death situation. I don’t want to scare any one who is pregnant, because high blood pressure is the last thing anyone needs, but more people, women and doctors included, need to be aware of pregnancy complications such as pre-ecclampsia, ecclampsia, and HELLP. Every day is a blessing, every day pregnant is a double-blessing, and when development comes into play, every second brings strength.
Not all stories have as happy an ending as mine. We are both HELLP survivors, and we are both very happy to be alive. I still battle with depression and sometimes something unexpected will send me mentally back to the days where I sat next to the machine that pulsed faster than a hummingbird to provide my son’s body with hundreds of breaths per minute. I understand that world, but I no longer live there. I am glad to be with my son, watching him grow and develop, while at the same time I focus on my own mental and physical healing. My husband now feels and immense sympathy and empathy for families going through anything similar to what we were going through, he can hardly stand it as he knows their fears and worries. Through it all though, he continues to be our knight in shining armor and there isn’t a day that goes by that I don’t thank God for him.