Monday, April 8, 2013

Our Story: Wyatt "I Love You Still." Six months later.....(Trigger)

Warning; This is a long blog full of details and triggers.....

This is a link to the slide show I made for Wyatt. I wrote the song. Brook accompanied me with the piano while I sang.
Six months ago today was a day that most would think would stay as a terrible memory in my mind, yet that day is one I will cherish for all time. The nightmare started long before Wyatt was delivered still. With support from some amazing people, his birth was surprisingly peaceful. Of course it is difficult to give birth to a child that you know cannot cry, but that was the day I was able to hold him, and see his precious face. It was also the day that I knew he was not suffering.

As I have shared before, any pregnancy after a loss is challenging. It is very hard to relax and enjoy the moments. This pregnancy was following a happy birth story though, so I was more hopeful. I knew that I had little control over the outcome, so I did my very best to be healthy for him, and my very best to value every moment we had together. I love the quote my dear friend Joy, put on his candle. "Even the Smallest of Feet have the Power to Leave Everlasting Footprints."

I will always remember finding out I was pregnant with him. I will always remember anxiously waiting for my appointments. I would mark it in my calendar as "Get to see Wyatt." My favorite part of pregnancy is feeling a life move inside of me. I will also remember the first time I heard his little heart beat, and the many other times I listened to it. I will always remember throwing a "Gender reveling party, " announcing we were having a girl, only to find out he was actually a boy. ;) I also will always remember when the doctors gave us scary news, and when we had to make the most difficult decisions of our lives. I will always remember his twin and having surgery to remove the baby from my tube. I was asked once, "If you had the choice, would you do it again." My answer is "Of course." Even knowing what the outcome would be, I would do it all again. Although their lives were so very short, they were alive, and we shared those moments together in the closest bond anyone can have.

It's taken me a while to get this story put in writing. This pregnancy was filled with so much anxiety along with the love. Here goes....

We decided to start trying again after getting some promising results from a laparoscopic surgery and blood tests. We had a reassuring appointment with the reproductive endocrinologist specialist that helped us have a successful pregnancy with Hunter. He informed us that my hormone levels had dramatically improved, and my surgery showed that everything was in perfect working order.

I started on Clomid and Progesterone, just like with Hunter. I started taking ovulation tests and all that. When it was positive, I called and arranged an appointment for an ultrasound. The nurse said it wasn't necessary, but she would arrange it if I wanted. With Hunter's pregnancy they made a big point that this ultrasound was very important because there is a slim chance the Clomid could make me create too many eggs. Everything about my pregnancies were not typical.

Thank goodness I went in, because she found that I had 3 mature eggs as well as others that were growing. She gave me a HCG shot that day to prevent the others from forming as well. The HCG shot gives you false positives on the home tests, so I was asked to have a blood test done after the effects were supposed to wear off. If you know me at all, you would know that I am not that patient. I read online that you could, test out the HCG. So I bought a whole bunch of cheap tests and tested everyday watching the lines get dimmer and dimmer. I was so frustrated though because that second line wasn't going away. The tests were not
supposed to be accurate until the line went away and then started to come back. Well the line never went away and then started to get darker.

Of course I did some research and started to wonder if that meant multiples!! Although I know having twins would be extremely challenging, I was hoping that was the case. After losing our first set of twins, it just felt right.Then I started worrying because we had THREE eggs. Oh my, I wasn't ready for that!

I was convinced we were pregnant, but Brook wouldn't acknowledge it. He said he would believe it when the blood tests came back. It didn't seem as though he ever relaxed enough to grow attached to this pregnancy. That is one of the many ways we experienced this loss differently. The blood test came back with pretty high numbers. They said I was certainly pregnant! HCG can very so much that they couldn't tell me if that meant multiples. The numbers kept raising fairly quickly, and I was back on the computer researching. ;)
My numbers could indicate more than one baby, maybe even 3 or more.

Then the day came when how many babies we might have quickly left my thoughts. I started bleeding. I reminded my self that the same thing happened with Hunter. I was informed once again that it could be a side effect of the medication I was taking. As it got worse, they asked me to be on modified bed rest and increase my progesterone.

I ended up getting really scared and went to the emergency room. Bad idea! They did an ultrasound and after waiting for what seemed like forever, the doctor came in, and asked if I knew what a molar pregnancy was. I had actually just read about it because having high HCG numbers was a symptom, but my numbers were not quite that high. He said that he didn't think I was pregnant and that I actually had a tumor growing inside of me that needed to be removed. He said he wanted me to to go home and wait to talk to my high risk doctor and let him decide what to do next.

That was the beginning of a roller coaster ride from Hell. I went to see my doctor the next morning full of terror, but to my surprise, he found a fetal pole and sac. He said at this point in pregnancy, that was exactly what he would expect to see. He said I did have a blood clot that was causing the bleeding. I was asked to lay down as much as possible and told not to lift.

I have the most amazing friends and family and was actually able to do that even with a 2 year old at home.
It wasn't easy laying down so much. I am not a person who does well sitting still. Plus it gave me way too much time to read scary things on the internet. It was really hard on Brook and Hunter too. The silver lining in that is that they grew closer during this time. 

The bleeding continued and then the cramping started. This is when I really started to worry. I decided to go take a warm shower to relax. In the shower I started getting the worse pain I have ever experienced that went shooting into my right shoulder. If it had been my left, I would have been certain I was having a heart attack. I screamed for Brook to call 911. He came up stairs and I was violently vomiting due to the extreme pain. I remembered that panic attacks can mimic heart attacks, and the pain was starting to let up a little. It was only hours before my doctors office opened, and I didn't want to go back to the ER, so I took a Vicodin(something they said would be somewhat safe in pregnancy,) and then I rested the best I could on the couch counting down the minutes till we could call my doctor.

He got me in right away and did an ultrasound. I had gotten good at reading ultrasounds, and I immediately spotted the little heartbeat flicker on the screen. He showed us and said, the little one seemed to be doing fine. Then he moved around a little and showed us another little heart beat. It was only seconds later that he explained that it was a tubal pregnancy, but for those seconds I again imagined life with twins. He told us that that even though the twin was growing as expected and had a strong heartbeat, that we would have to have this baby removed right away, or we could all 3 die.I will blog again about the effects of having to agree to let a doctor remove a live child from my body.

My doctor was amazing and supportive, but the anesthesiologist, was horrible. I know it is required to explain the risks of pregnancy, but made a point to tell me about 5 times how risky this surgery would be to the other baby. He kept saying it would be so much better if I was in my second trimester. It was like he didn't have a clue that allowing this baby to grow much longer could cause serious problems even death.

My doctor was amazing. Since I was pregnant, they couldn't give me the same anesthesia that most people would have for this surgery. They couldn't give me the "forget me not" drug. I was wide awake as they rolled me into the surgery room. I was terrified and in a state of shock. They hooked up the medication and placed a mask over my face as a tear rolled down my cheek. Dr. Whitten wiped the tear off my cheek and said, "We are going to do everything possible to let you walk out of here still pregnant." That simple gesture was one of most kind things anyone has done for me.

I woke up from the surgery hearing nurses having normal day to day conversations. The moment on nursed noticed I was awake, she came over and told me that everything went great and my baby was just fine! It was a strange moment of grief and joy combined. I will always know that Wyatt's twin had to be removed, but I will also always know, that I gave permission for doctors to kill my baby. :(

I went home on much stricter bed rest. I was willing to do anything to help this little fighter continue fighting. I had many more ultrasounds and they monitored the bleeding. The baby was growing fine and the clot was looking better. Finally my doctor said I could start seeing my regular OB. He recommended doing the screening for birth defects because that would allow us to work with a high risk specialist, although he assured me, he no longer considered me high risk.

We debated on the tests, but the 3D ultrasounds and high risk doctor was very appealing to me, so we agreed. The first tests came back perfect. We had our appointment and everything seemed fine. Then the doctor came in and talked to us about the blood clot. She wasn't reassuring at all. She was only in the room a few minutes, but she managed to shake my confidence in this pregnancy. She said the blood clot was causing a 30% separation. When I asked when we would see her again she replied with as little emotion as possible, "Well, hopefully in 6 weeks." That was one of many times I left that office with tears streaming down my face full of questions and doubt.

Following more bleeding spells and lots of time on the couch, I made it to that 6 week appointment. It was the one that they were going to be able to tell the sex of the baby. We decided to let it be a surprise we shared with our family at a gender reveling party. I was much more concerned about the status of the the blood clot and the test results. (They told us the second set of results showed a high risk for Down Syndrome)They did the ultrasound and found many more markers for a chromosomal problems. The biggest concern was that the baby was weeks behind in size.

The doctor said that the blood tests and ultrasound were not able to diagnose anything, she was pretty certain our baby had Downs Syndrome and/or something worse. She started asking our feelings about abortion. I was angered and quickly answered that there was no way we would choose that. She started to explain some of the possible things our baby might have. She called them, "fatal" diagnoses. I realized that I answered without even giving Brook a chance. I looked at him and asked, "We are not interested in THAT right?" The doctor to continued to explain about the awful effects some of these chromosomal problems can have and that many would eventually cause the baby to die. She strongly encouraged us to have an amnio test done. I was terrified to do this because of the slight risk of miscarriage. She explained that having these answers can really help in the decisions we make down the road. We decided to give it some time to think it over and and let the baby grow more. Every appointment I asked about the blood clot, and she would blow it off.

We left that appointment with an envelope that would tell us if we were having a boy or a girl. I decided that since we had no control over any of this, to just enjoy every moment we had. I went to the bakery and asked them to make a cake filled with either pink or blue frosting. We arranged the party and let everyone join us in finding out what was in that little envelope. The frosting was pink and I instantly began imagining life with a little girl with Down's Syndrome. At this point that is what we were praying for.

Brook and I had long discussions on abortion. I was arguing that there is nothing they could tell us that would cause me to choose that option. I read about doctors being wrong, and about children surviving some of the worst diagnoses. The real truth was that I knew I could never forgive myself if I made that choice. After long debates, we decided that we would let the baby live as long as "she" could and that we would make those difficult decisions about how long to provide life support later.

At the next appointment the doctor said she couldn't tell for sure if we were having a boy or a girl. She said the baby had ambiguous genitalia which was another sign of a chromosome problem. She urged us again to do the amnio test. We agreed. My fluid levels were a little low that day though, so we had to schedule it for another day. I asked about the blood clot, and she said "It has nothing to do with this."

We came into her office for that appointment and it was as if she didn't know who I was. She explained the procedure and then began. She said that there was blood in the fluid. She had a puzzled look on her face and asked, "Did you have any bleeding with this pregnancy?" I couldn't believe she would ask that. She knew about the massive amounts of blood I lost. I reminded her of the blood clot, and she said that the blood wasn't a concern. I asked again about the blood clot, and she said it was gone!

The first tests results came back clear, and so did the second and the third, and the blood clot was gone, so at our next appointment I went in expecting great news. We were told that the baby was a boy, and that was a shock. We were told we might have to decide if we would raise our child as a boy or a girl. She said he is chromosomally a boy, but it looked like he would have female genitalia.Talk about another crazy conversation to have with your husband.

At this appointment the tech doing the ultrasound was making small talk with us, but I could read the worry on her face. I started asking questions about our Wyatt. I asked if he had grown. She said he had, but not much. She said my fluid levels were really low, but she didn't go into detail. Then the doctor came in and started explaining our situation. She said she was still concerned that he had a chromosome problems and that sometimes, very rarely, they can be wrong.

I wasn't quite getting what she was saying. My mom came with me to this appointment, but Brook was at work. The doctor asked us to come into her office to talk. She explained that I had very little fluid left, and the without it, the "baby's lungs couldn't develop. ( We had asked them to call the baby Wyatt, but they never did. They seemed so detached.) She said typically in this situation since I was past 24 weeks, they would do an emergency C-section, but since "the baby" was so small, he wouldn't survive. Then the most awful words came out of her mouth, "expect fetal demise in the next few days or weeks."

An awful pain started in my stomach and my world started to spin. She said they don't have  tube small enough to help him breathe. I couldn't understand why I couldn't get the fluid back or why we couldn't find a smaller tube. I refused to just go home and let him die.I left the office in tears once again. How was I going to explain all this to Brook? I actually don't remember the rest of that day.

News quickly spread to my friends and family. So fast I wasn't ready for it. I decided to spend my time researching other possibilities. I read about a procedure that can temporarily replace fluid. I found articles about really small babies surviving. I researched hospitals that had better success.

Oh I remember more of that awful day. We met with a neonatologist from Renown. She basically said if we "asked them to deliver him early," that he would likely suffer and had basically no chance of survival. I ended up getting the steroid shot even though we really thought we were giving up at that point.

I started calling around to different hospitals around the country. I couldn't believe that I actually got a hold of the doctor in Illinois. I was even more surprised when he started talking about the statistics of a child Wyatt's size and age. He said he had a fighting chance! I began a huge battle getting approval from our insurance to go to see him and the doctors their. The record smallest baby was born at that hospital and is now in college.

Against our high risk doctor's advice, we flew to Illinois and met with the doctors there. They were ready to admit me to the hospital and deliver him that day if needed. They said they would hook me up to oxygen and try some other things to try and help Wyatt (they always called him by his name) stay in longer.

After the ultrasound, they discovered that Wyatt was much worse off than first discovered. They said he was anemic, and they couldn't even find his lungs. The told us they would do what ever we wanted, and that they would fight for Wyatt, but they agreed that his chances were slim and that he would likely suffer.

It was as strange moment. The way these doctors approached it, I felt like for the first time, I could let the "momma bear" fight down and really start to think. I thought about Wyatt, Brook, Hunter and even my self. Brook and I decided it would be best to go home and let Wyatt rest comforted in my womb until he passed.
The doctor told us that there was no indication that he was suffering and that he would slowly lose oxygen in his brain and feel as though he was falling asleep.

We flew home and I listened to my heart beat monitor many times a day. He kept on fighting for a few more days. (Much longer than the Reno doctor thought) I woke up on October 8th 2012 and I just knew he was gone. I hooked up the monitor and wasn't surprised at all to find no heartbeat. This was one more moment of a strange mixture of emotions. The greatest emotion I felt was actually relief.

We went to the ER and met my regular OB, Dr. Najima, I will post another time about how amazingly supportive she was through all of this. She confirmed that Wyatt had passed. They began inducing the birth that morning.


Its getting late and this is already turning into a book, so I will write more later.

I want to thank everyone who has helped us through these past 6 months and through the difficult times during my pregnancy. I really don't know what I would have done without you all.....

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