These are my miracles, James and Noelle. Yes, every child is a miracle but the story of how these two came to be is pretty amazing. My son goes to school in Canada where he plays lacrosse. Since we live on Long Island we don’t see him often and a lot of schedules need to be adjusted when he is playing in the states so we can watch him. Last week he had his spring trip. My daughter never gets to see him play and really put up a fight to miss school to cheer her brother on. She watched him in the stands so proudly and when he won she jumped out out of her seat screaming!
After the game she ran to him and embraced him so tight. They giggled and whispered. When Noelle asked for a photo with her brother he actually said yes. Normally, taking pictures is a huge nuisance according to James. I looked at the picture and it was the most beautiful and perfect photo I have ever seen. I know they are not dressed up, it is not a holiday and there is nothing fancy about it. But looking at this photo says a lot to me. There was never supposed to be a Noelle. After my nightmare pregnancy and delivery with James I was told I should not have any more children. Guess what? No one tells me what I can and can not do.
Let’s go to the beginning. In the summer of 1999 I had a miscarriage. At the time the doctors didn’t feel it happened for any specific reason and saw no reason for me not to try again. In December of 1999 I found out I was pregnant again. I found an OB close to my house and went to all my visits. At my first visit a lot of routine blood work was drawn. At my second visit I sat with my doctor as we went over the results. At that visit, 27 years old, I was diagnosed with Lupus. The doctor assured me I had nothing to worry about, would be monitored and would have a healthy baby.
For the remainder of my first trimester and all of my second everything seemed to be status quo. During my third trimester I really began to not feel well. I was having dizzy spells and had fallen twice, I was gaining a crazy amount of weight and at every visit my blood pressure was getting higher and higher. My hands and feet were beginning to fill with water and I was so uncomfortable. Again, my doctors assured me they were on top of it and everything would be ok.
On August 20th 2000 I hadn’t felt the baby move in hours. I went into the doctors office to make sure everything was ok. I saw a doctor I had never seen before. I believe she saved James and my life. My blood pressure was through the roof and I was pre-eclamptic. She had me immediately rushed to the hospital.
After I was admitted I was given medication to lower my blood pressure. It wasn’t working. They decided to induce labor. For 2 days I labored while being monitored every step of the way. Finally, on August 22nd, 3 weeks early my sweet baby James decided he was ready! I was in active labor for hours and it was horrible. After his immediate birth I kept hearing a weird sound. It was like buckets of water being thrown on the floor. Then came the chaos. The doctor started yelling at nurses and staff and saying, “can’t you see she is hemorrhaging’? They did stop the bleeding and I was put into a special room close to the nurses station. It had everything they could possibly need in case anything went wrong. James was perfect. In 2 days we went home like every one else does.
A few days after James’s birth my leg started to bother me. I kept saying it felt like an internal black and blue. I was so traumatized from James’s birth I didn’t want to go to any more doctors. My husband finally convinced me when he said I no longer live for myself, a baby depends on me now. The doctor was pretty sure I had a blood clot in my leg and sent me for a sonogram. Sure enough, I had a DVT. A DVT (Deep Vein Thrombosis) is when a clot forms in one of the large veins, usually in the arm or leg, and it partially or completely blocks circulation. If a DVT blood clot moves into the lungs, a life threatening condition known as a pulmonary embolism can occur.
I went back to the hospital and was put on Coumadin and monitored yet again. I was told to follow up with my regular physician. At this point I knew something was very wrong and it was time to see what.
The first doctor I saw diagnosed my lupus and after hearing about my pregnancy and getting back more blood results said I also have Antiphospholipid Antibody Syndrome. Also known as, APS, Sticky Blood Syndrome and Hughes Syndrome. The key symptoms that had him test for that are, DVT and complications of pregnancy. These complications include miscarriage, pre term delivery and pre-eclampsia. It is also the most popular tag along auto immune disease with lupus.
APS is when the immune system produces abnormal blood proteins called antiphospholipid antibodies that attack platelets in the blood causing them to stick together and form clots. It mostly affects the legs, but blood clots may also form in the kidneys, lungs and other organs.
With APS levels of platelets can drop. This can lead to episodes of bleeding. I get very frequent nose bleeds and bleeding into the skin, which causes small red spots to appear out of nowhere.
Treatment of APS is medication to thin the blood. The patient will need this medication for the rest of their life. I take an aspirin a day.
This doctor told me it was in my best interest not to have any more children. I was devastated to say the least. My dreams of a big family came crashing down. After my diagnosis and a lot of thinking I decided, NO! NO WAY! I was not finished. I wanted more children and was going to damned if that did not happen.
I went to so many doctors all in agreement with the first. Finally, my husband spoke to a college friend that recommended I see one of the top rheumatologists in our area. He forever changed my life. While he didn’t really want me to have another child he said he would support it under his close care and the care of another very high risk OB. Before they had any chance to change their minds I ran with it. In September of 2002 I was pregnant again.
This time it was so different. I did not gain over 120 pounds. I was not ill. I felt great! I was on Lovinox shots that I administered to myself twice a day and aspirin. Some patients can stop the shots in the third trimester if there are no issues. I was not so lucky. Regular blood tests continued throughout my pregnancy to ensure my blood could still clot enough to stop bleeding if I bruised or cut myself.
On May 4th 2003 I went into the hospital for my scheduled induction. 2 weeks past my due date. It was a very long, painful and stressful delivery. On May 5th 2003 beautiful Noelle Rose came into our lives. The doctor that worked so hard to keep me and my baby safe turned to my husband and me and said, “That’s it! You are done! No more babies for you guys”! I knew he was right and would not test God again.
A patient with APS should not smoke, maintain a healthy body weight, remain physically active and follow a healthful diet. I do all of these things.
My family is my life. I do not know how I would live or be me without them. Seeing my children together this week brought so much joy to my life that I had to reflect and write about how they almost never had each other to love. I hope they realize the risks and precautions that were taken by me to give them each other so they are not alone after I am gone.
Be Happy and Smile