Tuesday, July 17, 2007

Our Story

We were married in the fall of 2003, almost exactly 9 months after we met for the first time. We thought, like most people do, that we would wait a year or two before trying for a family. So a little over a year later, when we learned that Skeet’s sister was expecting a child, we decided it was time for us to add to our family so that the cousins would be close in age. I never told Skeet but I had been suffering from baby fever for months before that!

I knew right off the bat that I would need to see a doctor before we could get pregnant because I had suffered with endometriosis since I was sixteen and my cycles had been irregular for years. The first doctor I met with suggested I go on birth control to regulate my cycles. I thought this seemed a little too counterproductive, so I got a second opinion. My second doctor, Dr. S, was great! He immediately ordered tests and scheduled a laparoscopic surgery to try to reduce some of the endometriosis. After the surgery and the tests we began taking chlomid. We did round after round of chlomid with no luck. After 2 years, and knowing that taking chlomid for too long can actually hurt your chances of conceiving, Dr. S suggested we do one last cycle on the maximum dose with a trigger for ovulation. No such luck, we were disappointed yet again. Stumped, Dr. S ordered more tests and we were finally told that we would need to see a specialist. We were referred to a doctor in Las Vegas, Dr. D.

We saw Dr. D for the first time in January 2007. He ran more tests, looked at our records and concluded that our best shot would be In Vitro Fertilization. He gave us an 80% chance of success with this method and if we started right away we could do an embryo transfer in two months. After a lot of discussion, and some tears on my part, Skeet and I finally decided to increase the Home Equity Loan we had taken out with the intent of finishing our back yard, and instead give IVF a shot. We used our loan for the required tests and the cost of the IVF procedure, our insurance would not cover one cent of it, and then used a credit card to purchase the many, many medications needed. We thought an 80% chance of success sounded pretty good and were confident that within a couple of months we would be expecting our first child. Well, we were right!

In March of 2007 we saw Dr. D every other day for 2 weeks, first for ultrasounds and blood work, and then for the egg retrieval. They retrieved 46 eggs from my ovaries, and 40 of those were fertilized. 5 days later 23 embryos remained and they transferred the two best looking ones of the bunch. The next day, when they went to freeze our embryos, only 5 remained. So we had 2 perfect embryos in my uterus and 5 more on ice for future attempts.
Less than two weeks later, on April 2, 2007, I received a phone call from my beloved Dr. S. He asked me how I was feeling and how our blood pregnancy test had went. I told him that we were still awaiting the results but should get them any time that day. He then proceeded to tell me that the test came back positive, and congratulations! I, of course, made him repeat himself because I was in shock. I couldn’t believe it! We were really going to have a baby. I began crying, thanked him probably 5 more times, and dialed Skeet as soon as I hung up. Skeet was in Texas for work, but seemed almost as thrilled about our good news as I was. I then proceeded to call my mom, dad, sister, and everyone else I could think of to tell them the good news. This was not something I was going to be able to keep a secret, even if it was too early to start spreading the news.

The first few weeks of our pregnancy were uneventful. I did suffer from morning sickness but tried not to complain too much. I was just so unbelievably happy that we were going to have a baby. We had our first ultrasound at five and a half weeks and saw one sac and one baby but were told it was too early to see a heartbeat. Fortunately we were invited to come back the next week for another ultrasound. Skeet couldn’t make it that time so my mom came with me. I will never forget looking up at the screen and seeing the flicker of a little heartbeat. I couldn’t hold back the tears; it was one of the best days of my life.

The Saturday that I turned eleven weeks, I was admitted into the emergency room for severe abdominal pain. I was so scared. I didn’t know what was happening but was told that as long as there wasn’t any blood I shouldn’t worry. They did an abdominal ultrasound and saw my sweet little baby bouncing around on the screen with a perfect heartbeat. The ER doctor was stumped. The only thing he could find that might be causing me any pain was a very mild urinary tract infection. I knew what one of those felt like and this pain, enough to require morphine, didn’t seem like a mild UTI. Still, they gave me antibiotics and were about to discharge me when Dr. S came to my rescue. He too thought it was odd that I would need something as strong as morphine for an UTI so he decided to keep me overnight for observation and ordered an internal ultrasound for later that evening. At around 11:30 p.m. they took me in for a second ultrasound. By that time I was in a great deal of pain and felt weak and nauseated. This time they found that blood was filling my pelvic cavity, but my baby was still there with a very strong heartbeat. Dr. S rushed me into surgery.

When I came out of surgery I was told that I had what is known as a heterotopic pregnancy; which is when a pregnancy occurs in two different places. In my case I had one embryo implant in my uterus and one in my left fallopian tube. When my body decided to abort the embryo in my tube, the bleeding had caused my tube to rupture and blood to fill my pelvic cavity. I ended up losing my left tube, but was so grateful that my baby still had a strong heartbeat and would be okay. After that, I thought that if our baby could survive such an ordeal, it could survive anything.

Fast forward 8 weeks, we are now nineteen and a half weeks pregnant and about to have our level II ultrasound to find out the sex of the baby and make sure it is developing properly. By then I had completely healed from the surgery and was very much enjoying my growing baby bump. I had developed a habit of rubbing it all the time; it’s something I still miss. We arrived at Dr. S’s office with video tape and CD in hand to record pictures and video of our sweet little baby, and with the hopes that we will soon know the gender of our first child.

From the very beginning of our ultrasound I knew something was wrong. I was laughing and trying to make jokes but our ultrasound tech was very quiet. After a moment she said “there is something wrong”. I asked her if it was bad and she answered yes. I immediately began to cry and Skeet held my hand. She started to point out that the baby had very short arms and legs and at that point I couldn’t even watch anymore. I just laid there on the table and cried while she finished the ultrasound. They then moved us into an exam room to wait to talk to Dr. S. When he came in he said that best case scenario would be that our child would be a dwarf, or a little person. He said that he needed to look over the images one more time and that he would call us later that day. No one ever told us the gender of the baby and we left without a video or pictures of the ultrasound.

Instead of going back to work I went home and I cried. Skeet called my parents and my sister and they all met me at home and cried and prayed with me. We prayed for our little baby to be okay and for us to have the strength to deal with whatever we would have to endure. I started to feel a little bit better but when Dr. S called later that day my world came crashing down around me. He said that from the pictures he saw, our child likely had a lethal form of skeletal dysplasia. It would be lethal because the baby’s ribcage would never be large enough to allow his/her lungs to develop. The baby would most likely pass away immediately after birth. However, he wanted us to see a perinatologist to get a second opinion.

The next day we saw the perinatologist and he confirmed that it was a form of skeletal dysplasia and would most likely be lethal. They did an amniocentisis and sent us home to wait for a more certain diagnosis. Unfortunately all the tests were inconclusive. We spent the rest of the pregnancy praying that the doctors were wrong and that our sweet little baby would just be a little bit smaller than everyone else. We did however, find out through the amnio that our baby was a little girl and we named her Avery.

I cherished every moment of my pregnancy after that. I read to Avery almost every day. I would also sing to her, my favorite being “You Are My Sunshine” and I would cry. I didn’t dare make any plans, I just prayed. As much as I wanted to believe that I would bring my daughter home, I couldn’t bear having a baby shower or a nursery knowing that I may have to pack everything away someday if I did end up having to let her go. We were given the option to terminate our pregnancy but that was never an option for us. This child had been given life by our Heavenly Father and it was not our place to take that life away. My plan was to give our child every chance at life; I would not be responsible for taking it away.

On the morning of October 10, 2007, 31 weeks and 5days into my pregnancy, I woke up with back pain and decided to get checked out at Labor and Delivery. They confirmed that I was, in fact, in labor and I was asked to decide whether or not we wanted to stop the labor. I chose to try to stop it. I wasn’t prepared yet. I wanted those last eight weeks if I could have them. I was kept overnight for observation and released the next morning. That evening I was re-admitted for dehydration but was released early Friday morning. Friday afternoon I stood up and felt a gush. It wasn’t a lot of fluid but enough to make me worry. When I called labor and delivery they told me that if it happened again I needed to come in and get checked out. We had an appointment with a pediatrician that day to discuss a birth plan and right before we left for that appointment I had another small gush of fluid. I told Skeet that we would be stopping by the hospital on our way home from our appointment.

When they checked for amniotic fluid at the hospital the test came back negative. They were letting me go home. I stood up to use the restroom and change back into my clothes and felt another big gush. This time it didn’t stop and I hobbled to the bathroom to stand in the bathtub until the fluid stopped. They eventually helped me back to bed and confirmed that my water had broken. Avery was on her way.

We called family and waited to hear whether or not we would be sent to another hospital because ours did not deliver babies earlier than 34 weeks. Fortunately Dr. S had pulled some strings and we were able to stay there and have him deliver our daughter. Avery’s heartbeat was strong when they hooked me up to the monitor, however, they had a hard time keeping track of her because she was small and kept moving to avoid it; every hour or so we would have to readjust.

After I received the epidural, I was finally able to drift off to sleep. Skeet slept as well, in my room with me, while our families tried to sleep in their cars and the waiting room. No one wanted to miss the chance to meet our special little girl. At around 2:30 a.m. the nurse came in to readjust the heart monitor and to check my progress and Dr. S decided it was time to push. They paged the on call pediatrician and the respiratory specialist and we woke Skeet. My sister came in to coach me and Skeet held my hand.

Avery was born breech, at 3:17 a.m. on Saturday, October 13, 2007. She didn’t cry, she never even took a breath, and she had no heartbeat. She was gone. They wrapped her up and placed her in my arms and I was in awe of how incredibly beautiful she was. Although she was tiny, at only 2 pounds 9 ounces and 13 inches long, she still fit perfectly into my arms. Everyone took turns holding her and saying their hellos and goodbyes but it was when I saw Skeet take her into his arms that my heart broke. He looked so sad and I finally saw all that he had missed out on. He didn’t have the same bond with Avery as I did and I could see he realized that as he held her.

After everyone left I held on to her, trying to take in every moment because I never wanted to forget how it felt to hold my child in my arms. We were told that because the birth was so hard on her body, we should keep her wrapped up and we should expect that, once they took her to get weighed and measured, we wouldn’t get to see her again. I never had the chance to bathe and dress her. I didn’t get to look at her feet or toes. I never even saw whether or not she had my thick black hair.

At around five thirty that morning I started to feel sick and weak. I decided to say my final goodbye and I let Skeet walk her down to the nursery. I never saw my daughter again. I was discharged from the hospital the next day. The funeral home had already come to pick up her body and I knew that I would soon have to start planning a service. I cried as I was being escorted out of the hospital in a wheelchair. Most women leave the Labor and Delivery wing with a baby to take home… I left with only flowers and condolences for the death of my first child. They never gave me hand or footprints of Avery and told me that even though she had a full head of black hair; it was too short for them to cut a lock of it for me to keep. The only things I had were the few pictures that were taken of her and a small recorder that we had used to record her heartbeat.

In the days after Avery’s birth I suffered from extremely high blood pressure, fluid in my lungs and a fever that reached 104 degrees. Luckily my mother and my sister were able to help with burial arrangements. Avery was laid to rest on October 17, 2007. It was a beautiful service but the worst day of my life.

I knew that it would be a while before my heart would mend enough to even think about having another child. We still had 5 frozen embryos and Dr. D had offered to do our next transfer at no cost. We finally received a diagnosis, from the X-rays they took of Avery at the hospital, almost 5 months after her birth. They concluded (although they couldn’t be 100% sure because no blood work was done) that Avery had Osteogenesis Imperfecta Type II, or brittle bone disease. The doctors believed that her bones were breaking in the womb and then when they would heal it caused malformations of her hands, feet, arms, legs and even her ribcage. I can’t even imagine how terribly painful her birth would have been for her had she lived. I thank the Lord that she was not allowed to suffer through it, although I still wish sometimes that I could have seen her open her eyes, or heard her cry.

We decided to wait almost a year before we tried again. We did a frozen embryo transfer, of two embryos (one embryo was lost during the thawing process), on August 18, 2008 and received a positive pregnancy test but were told not to expect a viable pregnancy because the numbers were too low. At 7 weeks an ultrasound was done which showed a sac but no baby. I was given pills that induced a miscarriage. I was devastated once again but still held on to hope that our remaining two embryos would result in a healthy baby or two.

In May of 2009 we were ready to try again, this was our last shot and I had all of my hopes and dreams riding on these last two frozen embryos. On the day of our transfer we were told that only one embryo had survived the thawing process but it looked perfect. It was transferred and we were told that a blood pregnancy test would be done 10 days later. This time I began to feel something that made me hopeful. I felt pregnant. Smells would turn my stomach and I found that I couldn’t eat certain things that only a few days before I loved. I began to believe that things might actually work out for us this time.

On the day of our pregnancy test, I gagged at the smell of Skeet’s coffee and it was a wonderful feeling (I normally love the smell of coffee). However, later that day I was at the cemetery cleaning Avery’s headstone when I received a call from Dr. D. He said that although the test had come back positive, he believed that I would soon miscarry. He explained that I had what they call a bi-chemical pregnancy. When the embryo implants but does not begin to develop. Again, I was devastated. At this point all hope was lost. We had no more embryos and were still trying to pay off our debt from the IVF. Plus, I didn’t know what was causing this to happen.

Dr. D ordered blood work and a scope of my uterus and everything came back perfectly normal. He said that he believed if we could do one more fresh IVF cycle, we would have a healthy delivery. We are now torn. I have felt what it is like to have a child growing inside of me but I had that child taken away. Now, I want so badly to have that chance again but don’t have the resources to do so. I don’t want to give up on the idea of having a child of our own, having Avery’s brother or sister, but at this point I am afraid to have hope that it will ever happen for us.

(added on July 22, 2011)

**In January 2010 Dr S. performed a procedure on me called Ovarian Diathermy.  This was our last shot.  Our hope was that my body would respond to the clomid and that I might release some good quality eggs, giving us a chance of getting pregnant without having to spend thousands of dollars.  After 6 months and 3 failed rounds of clomid (I did respond, and ovulate but no pregnancy) we got our first surprise positive pregnancy test on August 21, 2010, on a non medicated cycle.  After a touchy pregnancy we welcomed our miracle baby, Sawyer, on April 27, 2011.  He was born healthy at 7 pounds 9 ounces and 20 inches long.  He came into this world at 10:13 a.m. which just happens to be his big sister's birthday!  We are thrilled that our dream of having a child to hold has finally come true and we are cherishing every moment with our sweet little man.   We have learned that prayers are answered and miracles do happen!!  I am so glad that we never gave up.  Who knows... someday we might be able to give Sawyer and Avery another sibling too!**

6 comments:

Anonymous said...

Your story is just absolutely heart breaking and I can't imagine what you are going through and have been through. I too have endometriosis and have had a miscarriage and have gone through ivf 2x. I strongly recommend Dr. Kanayama in NYC he is a world known specialist in endometriosis and has held the title of the Top OBGN for endometriosis for several years. He explains that there a factor with endometriosis that can cause miscarriages in some women with endometriosis. I can't remember the whole thing exactly but the reason behind it explains why some women with severe cases have no problem getting pregnant and other with only a little endo struggle with infertility and miscarriages. He does not believe in lupron in treating endo or any medication he beleives it is a surgical disease. It is so worth a call. If you call him he will talk to you without even have met you, the only doctor I know that will get right on the phone. He is a godsent and one of the best doctors I have ever met. I ended up having 2 children because of him. I just wish you success in what ever path you choose and that you will one day have a baby to bring home.

Anonymous said...

http://www.gynecosurgery.com/dr_kanayama.htm

Anonymous said...

I also wanted to add that you can get grants from the healthy department of the state that you live in to pay for ivf, you just have to make less than a combined income of $200,000. I applied and was approved in less than a month. I only had to lay out a small portion like a couple of hundred because your responsibility is based on a scale in realtion to your combined income. THey are deparment of health DOH grants.

Christa said...

My heart is breaking for your loss right now... after reading your story. You are a pillar of strength- something most people aren't. I have PCOS- we tried for 3 years to get pregnant- we did finally, and my daughter was born in Jan 08. I know what a horrible roller coaster infertility is! I will pray that the Lord will bless your faith and multiply your income so that you are able to afford further treatments- that will enable you to become pregnant again and give Avery a sibling.
Don't lose faith- I don't think your daughter would want that!!!

nathan&ambersymank said...

Thank you for sharing your story. I have been stuggling with endometriosis as well and have had trouble concieving. Keep your head up. You and your family will be in my prayers.

Danny and Cathy said...

I don't know how I found your blog but I'm so glad I did. Thank you so much for sharing your story. I know that you will be and have been blessed with a wonderful family. You are a strong women and I commend you for everything. I miscarried twice before I got mine and I can't even imagine adding more pain such as what you have had. I wish you and your family the best!