This is a quick notice of changing the focus of this blog for the next month. I have had two children die from a rare disease. I want to honor them. February 28th is Rare Disease Awareness Month. Our family every year does a project for the day. All I am allowed to say is the first coat of paint is on. My husband did that this morning. February is an anniversary month for me, because our first daughter was born prematurely and died in February. It came as a surprise for us. She was due in April. Days after leaving a having a Valentine’s Day trip to New York City for a weekend, she died. The Valentine’s Day decorations are in the basement. I struggle every year to put the decorations up. I will keep you posted on the current pregnancy as well. Not much is going on, which is good news. I remain on physical restrictions such as I can’t go to the gym. I am very careful to say this, I have not spotted in a week. I hope everything is okay. I have had insomnia lately. We went from having no snow to having a snow storm daily! Welcome to New England! My current baby is lucky. First he or she has no clue that he or she is no longer on the West Coast. Second, it’s always 98.5 where he or she is.
Everyone is ready to relax so easy about pregnancy. “The doctors have an answer and everything.” Let me just relax right there. However, I lived through the bunch of medical testing done to rule out the causes of recurrent pregnancy loss. Our answer shocked us and the doctors. The only documented case in the known world. The information came too late, two cycles of chemo were completed. Sadly, another disaster had occurred, I was diagnosis with breast cancer. A month later, I found my mother had died to natural causes.
February 28th is rare disease day. The anniversary of my first daughter’s birth and death. This blog will turn to discuss rare disease awareness the entire month. Many have told me to forget the “babies” in so many ways. My body held them and love them until they died. I am scared of another loss. Nothing in life prepared me to be the spoke person of the first known case in the world.
When you are the first case in the world, ironic things happen in your life. When my daughter was 6 months old, it came to our attention that something was wrong with the quality of her care. The agenda was not my daughter, but their own. My daughter was about to symbolically drown in the Narcissism of those I had entrusted with her care. Sadly, the emptiness of my upbringing and the lack of wisdom of my age lead me to hire them. I learned a lot from those sad mistakes of a thirty something years old. I am older and see things more clearly. I have came to an understanding, “stop asking everyone for their advice! Listen to yourself!” I have a strong unmoving voice when I need it.
One of the promises, I made with the divine upon my diagnosis with breast cancer was to let me live and I would become an advocate to rare disease. You should see the project we are planning…. My daughter works with me on the projects. I can not change her sisters died of this sad rare disease. I can not change the fact that I had breast cancer. I can only teach my daughter how to become a social advocate.
Meanwhile, I barely say this out loud about the “pregnancy.” It is day to day… I am not sure which week I am in since it was embryo donation of a blastocyst. I am aware of some very light spotting this week, because I am always looking for warning signs of miscarriages. It was so light it wasn’t worth calling the doctor about. As soon as this blog is type, I am ordering the Doppler to hear the baby’s heart beat. It’s my security blanket.
Lately, I have been remembering my career goal resolutions. The wake up calls about my job choices are all over my life. I love my job working with kids, but this job was to be a stepping stone job. I missed so much work and there is no benefits. I am watching the weather. A blizzard is coming during my work week. There are no benefits. I miss work. I don’t get paid. I love what I do for a living. However, we have some serious bills to pay back for the embryo donation and the trips to the West Coast. Honestly, I need to stay focus on the “Rainbow” goal. It hurts when I see I am making the same amount of money out straight of school. I am lucky to have the back up job at the hospital, because first, we live less than 5 miles away. I can walk if I need to. I have been busy with the appointments. Pick up the book and study. There is a career fair in May. I considering going to. Of course, I am going to be dropping my resume for a part time position. I am trying to get use to the thought it may work out.
My daughter has been begging us to go back to last year’s vacation spot. Our family traditionally takes a few days somewhere else a year. One is usually in April and the other in August. I am not trying to sound rigid. It hasn’t work out over the past year. My daughter’s dance team is going to perform at a park over in July in PA. Hopefully, the baby will be delivered sometime late August/Early September. Somehow, she is going with her dance team. I counted my dates and I may be able to go with her.
Twelve years ago, our family decided to have children. We started working on the basement as a spare room. The current computer room/playroom is the spare bedroom. It was decorated for our daughter, who never came home because she was born still. There is always lots to do to stay busy in life. My husband and I have been going back and forth about options. Last year’s vacation spot equals a lot of walking and driving. I am still on restrictions until I see the doctor in Early February due to the threatened miscarriage. I am not sure about all the walking. There is a state in New England that neither my daughter or my husband has seen, which may be an option. If we needed to be closer, we have options in the state. Family vacations seem to be something of this generation in this family. Neither my husband or I had growing up the few trips a few times a year. Usually, our family drives everywhere. It was only due to the program out on the West Coast that we flew. Generally speaking, we are somewhere on the east coast. I think we are going to wait until the last two weeks to decide. I am wondering if this pregnancy is going to be complicated.
I look more into the hospital that we decided to have our OB GYN care from. I have actually never physically been there. The hospital has had a few national awards for the maternity ward and different types of female cancers. It sounds like a match for us.
My aunt and I have since talked. She is snowed in. She has lost most of her balance so she stays in. Her son is having another surgery tomorrow for the blood clots. I offered to go see her today and to get her a cup of coffee, but she didn’t want it. Please do keep her son in your prayers. Bereaved parents never want anyone to truly understand what it is like to loose a child.
I had to write this quick before work. There are a few holes in my heart. The children I have lost are one hole. The other hole is the lost of my sister, my brother and their children. I love my Aunt very much. No one will always have the same point of view as you. My current pregnancy has been a battle with my own anxiety. I have experienced multiple types of pregnancy loss, so this is a reaction to my own sadness.
My Aunt could never have kids of her own. In her day, IVF did not exist. Forget donor comception. She is so happy about my pregnancy that she is already talking about delivery day. Every morning, I wake up that I made it through yesterday. It is one day at a time here. Sunday night, I became so overwhelmed speaking to her. She was telling me medical information about my nieces and nephew. I finally had to stop the conversation. Then she was trying to see if my sister could come to the maternity ward. My sister, who I begged to see me when I had cancer. I cried most of the night. There is one social media account I allow everyone on who knows me. I want to get rid of it so bad, but my daughter’s friend’s mothers are on it.
I had a good medical oncologist appointment on Monday. The family and I went to lunch. I was able to go to meditation class.
Yesterday was the nursing assessment for the OB GYN. I ended up an hour late for work. The fire alarm went off during the appointment. It happens. On the way back to work, I got stuck in the traffic of construction equipment transport detail. My patience was tested. One subject during the appointment reopened the hole in my heart. They kept talking about family involvement.
I got home last night we talked about it. It ended up into an argument. Right back to last summer’s mammogram appointment again. I have had many experiences with my mother-in-law by this time in my life. I am not banking on her watching my daughter. The argument appears to have broken this morning. This hole in my heart. People have brothers and sisters who love them. My anger and saddness is still there non-fading. I will keep Reiking it.
The restrictions were not lifted. I still can’t go to the gym. In a few weeks, I will see the doctor. I need to rent a Doppler to hear the baby’s heart beat for my own sanity. Yesterday, I got a wake up check about my own resolution of career goals. I have had so many appointments since the threatened miscarriage that I have studied for that test for a different license to work in the schools.
In my daughter’s life, I have had to tell her lots of bad news. One year in particular here was the news I had to tell her, the baby died, mom has breast cancer and your grandmother died. A few weeks ago this other relative made a decision beyond my decision to wait. I have been through 5 different types of pregnancy loss. I went to the ER for bleeding in the past two weeks. We had our first ultra sound with the OB GYN. I am not mentally ready or prepared to handle my daughter’s feelings too. My stress level just went from high to ultra high.
The stress in her life is high at the moment. She loved our dance school teacher, who died about a year ago from cancer. This week was the anniversary of her passing. The schools start going into full swing to prepare the students for the state exams. Our school system threw out the old test and this is the first year, my daughter will take an exam accepted by multiple states on a computer. The test known as the PARC is here. More than a few states have decided on one test. Everyone in my state will at some point make the transition. My daughter is like my sister, a perfectionist. She was awarded by the school committee a award for a perfect score on 280 math problems last year. This year she is resistive to the change. That a snap shot of the stress in the background. I never say this She has had a bad week and her behavior shows it.
She held this in for a few weeks that some relative decided to share that I was pregnant, when I had strictly told people to wait. My daughter told me this week. First, over the past five years, I have had to hold that child, while she cried about her sister being born still. There have been days, she came home with tears in her eyes because so and so found out that they are going to be a big sister/brother. I wanted to be there! I wanted to be the one to tell her! I deserved to have a part in this! Someone made a choice while I was at work. I was not asked or told. It was done. It’s brothering me. So, I had now understand what is going on. This is a piece of me that wants to say, hey where were you during the breast cancer. Try explaining chemo to a kindergartener and come and see me.
Friday night was the hardest day. I was trying to do my shot and it was not happening. I am on baby aspirin to prevent blood clots. Each attempt made a bigger mess. Finally, I deciding I am going to do this again. I have the one and half inch needle at back side. I am starting breathing exercises because it is not happening tonight too easy. It’s been a good 20 minutes. All of sudden the bathroom lights go off, because my daughter thought it would be funny. I had a strong talk with her. It was a huge safety risk. I could have seriously cut myself. It’s not an easy shot. I can’t see what I am doing. Someone lost TV, but it wasn’t for the bathroom incident alone.
Yesterday, I felt so emotional drained by the choices of others. My husband’s arm has healed finally enough to get the Christmas stuff down. (He broke his elbow in between my plane trips to the West Coast last month.) I came home and someone is watching TV, when she isn’t suppose to. She starts to cry and scream. Finally, I told her to sit down. Every day since she went back to school she has been crying. She tells me, “I am thinking about my sisters.” Then she sobs that she is scared this baby is going to die from the same rare disease as her sisters. The year before I had an embryo donation. I heard some mothers at RESOLVE talking about how they are gradually explaining egg donations to their children. I explained the baby has a male and female helper. How does one explain embryo donation to a 9 years old? It would be some serious bad luck for the same rare disease to happen again. (Statistically thinking, we were the first case in the world.) I held her tight and let her cry it out. Last night, she was herself again. I say this very cautiously this morning. I can’t. It appears the spotting is lighter than I can see or it has stopped. Resolve is going to put in contact with resources. As much as I can walk the walk, trust me in my soul, I am so anxious.
Tomorrow is my annual I see my medical oncologist appointment. I had to reschedule it due to the ultra sound. Almost 5 years now… :D!
I know my aunt loves me. The threatened miscarriaged almost 2 weeks ago scared her. What she does is to have everyone pray for you. My mother was one of five girls. Some of my aunts had kids after high school. My mother was considered an old maid at age 28, when she got married. Times have changed. When she got pregnant with me at 36 that was considered old. I am the baby of the first cousins. One of my cousins had a sad lost. Her daughter was born 10 days before me and she died in the hospital due to an infection. She had dressed her daughter to go home, when it was discovered the baby was not breathing right. The baby died within hours later. My mother made my cousin my Godmother. I was surprised yesterday to get a congrats private message on the one social media account, I allow people from the face to face world to follow. I know everyone is hopeful. I have been pregnant 7 times. Five ended in loss until the doctors were able to tell us what happened. My own daughter Hope was not announced until late second trimester. There were the few I trusted. 10 years ago, social media was a baby. What was the public announcement. I lite a candle at church.
I am also not happy my daughter was told by some other relative at this point. It took time to learn how she knew. All these people are so relaxed. I am still spotting. I may be 7 weeks now. I had a strong conversation with my aunt brother and sister took my daughter Hope’s birth and destroyed it with their agenda. One of my choices, we argue about is my choice to carry my daughter to term. I asked my cousin to keep it quiet. My brother is an functional alcoholic. I am aware he said many things to the doctors. It was humiliating for this emotional abusive guy to strong arm doctors into his side. I also felt it was tasteless to tell me back then. What was the point of that?
I anxious about the spotting. I am on the shots today. First day without suppositories. It’s lighter not gone. Decisions were made without my knowledge. My anxiety is that much higher today. The other relative has apologized for telling Hope. What can you do now. My aunt was trying to help, but everyone needs to talk to me before decisions are made.
The OBGYN called. I have known about an ovary cyst about this since the first trip out to the West Coast for the ultra sound. There is a cyst on my right ovary. They want to follow up about it. I have an ultra sound scheduled on the 11th anniversary of my discharge from the hospital without a baby and shoes after my first daughter’s death in 2004. I will talk about her more in February during her birthday and rare disease month.
The results are normal from the ultra sound. I do continue to spot. Yesterday, I started the shots. For three days, I will take the suppositories and the shot of progesterone. Tomorrow, I will stop the suppositories. It is a theory that the suppositories are causing the spotting. I don’t know how long it will take to get the suppositories out of my system. I am carefully monitoring the spotting. I am concerned that I am going to jinx myself. It is a little less and a little less pink. I have been thinking about all my pregnancies, this is the first one with spotting and progesterone suppositories. Hopefully, it goes away.
Today, we got to meet the new OB GYN practice. I already loved them from the phone calls of last week. Ultra sounds are not my strong points. An ultra sounds for me is like having a mammogram on my anxiety scale, when I pregnant. (Remember I am a breast cancer survivor too.) All my miscarriages occurred mid second trimester, when a routine ultra sound failed to get the baby’s heart beat. I was very anxious about this ultra sound all weekend. We showed up an hour early… I guess we are use to Boston traffic not Providence traffic. The waiting room was the first hurdle for me. I am so glad when people don’t experience the loss of a pregnancy or the road of infertility treatment. They are still innocent. In times when I anxious it makes my anxiety worst. However, a woman is delivering tomorrow is sitting across from me. She is almost chasing her two years old everywhere. She says to him, “Momma will have a bigger lap tomorrow.” She leaves and I am the one who tells her not forget her cell phone.
My anxiety was off the charts this morning. My tears just wanted to come out. Today, my husband went to the appointment no questions. The tech was great. I told her we are not your usual couple due to all the losses and fertility treatments. Then, I got she got it through the conversation. First, couldn’t see the baby without the probe. Finally, she said to me, “please breathe, we got a heart beat.” I didn’t just breathe. I sobbed with combination of joy and grief.
I heard from the program on the West coast. The heart beat was on target. They told me it was okay for the baby to measure a few days behind. The OB GYN calculated a due date of September 3rd. The West Coast program calculated a due date of September 1st. I drove to the fertility pharmacy and picked up my meds. Of course I drove by my old fertility center. Tonight, I plan to start the process of switching from the suppositories to the shot for progesterone. I am going to try to administer the shot to the buttocks myself. Hopefully the spotting will go away… I think I am going to let my husband handle the conversation with my mother-in-law. I have acupuncture tonight. I will try afterwards. I am going to continue my Reiki and meditation. One day at a time hopefully, I get to delivery day.
Since last Monday, when I discovered I was bleeding, my anxiety level has been extra high. This is my 7th pregnancy, I have only had two experiences with bleeding in pregnancy. I naturally miscarried at 6 weeks, which was my first miscarriage. When I was 9 weeks pregnant with my first daughter, who later died of a rare disease, I was treated at the local hospital for a threatened miscarriage. The other 3 losses, which I have never agreed with the words are considered “late miscarriages.” I did not know the baby died until an routine ultra sound would pick up there was no heart beat. A lot of people are telling me this spotting is normal. Well if it is, not in my case… Last Monday, I had just turned 6 weeks pregnant, which made me remember my first miscarriage.
My daughter was close to 13 months old, when at nap time, her glass cross fell from the wall for no reason and broke. After cleaning up the mess, I discovered I was bleeding. Unlike that pregnancy there is a lot of difference between the two pregnancies.
I am still happy that I decided to go to the ER on this past Monday. The baby during my first miscarriage was measuring at 5 weeks no heart beat at 6 weeks of pregnancy. What I do know is this little one that I am pregnant with is measuring exactly 6 weeks as of Monday. The hospital got a regular normal heart beat. There is a sadness knowing they are finding only one. Two were transferred. I am still hoping maybe the other one will just show up. I have googled and googled and googled. Some women went on to have a baby. Others went on to miscarry.
The local ER at any hospital treats everything from miscarriages to strokes. It scared me, when the doctor looked me in the eyes and said I was at even higher risk to miscarry. My acupuncturist pointed out two things. Was this based on my age and history? I know people don’t always understand egg donation. The risk of miscarriage is not the same of a embryo created from a 40 year’s old egg. Please do not misunderstand this little one is mine. I had a battery of recurrent pregnancy loss tests in my life. I know many never get an answer. Years upon years later, our family was discovered to be the first known type of dominant carrier of this rare disease. Statistically, it was quote to me the disease both my children died from horribly happens in my state once every 3 years. I am not happy about our circumstances. If I need to represent our state, can I have another reason to represent the state. There is an extreme feeling of isolation from this knowledge. I hope never to be remember just for this. Please let me be know for something else when I die of old age. Most people would have not choose to continue to stay in contact with others in the rare disease community. I have stayed in contact and I see other families are starting to have the same diagnosis. When our first daughter died, we had to pay for her blood to be sent to another country to confirm the diagnosis. The testing is now available in this country.
Back to the current pregnancy, because this is embryo donation, there have been a lot of calls between me the new OB GYN and the West Coast program. We are all trying to figure out why I am spotting. One theory is this is being caused by the progesterone suppositories. I wish I could say there is a defined pattern. There isn’t. Sometimes, it picks up at 1AM. Sometimes it is gone for 8 hours. Some days, it happens for 20 hours straight. I am tracking this all day long. It happens, when I think it isn’t happening. It doesn’t happen, when I think it is happening. We are all just guessing. I desperately want to control and fix this. Recently, I started sleeping through the night.
I finally was approved to switch from suppositories to the shot. I am hoping the ultra sound on Monday will enlighten all of us about the nature of this spotting. I do have some nursing friends, who I am hoping will help me with the shot. I don’t know if anyone has an effective method for giving yourself a shot in the buttocks, but I am listening. It is a 3 days process. My husband is an excellent banker, father etc.. That being said his method of giving the progesterone shot in the buttocks is not one of his strengths. I am considering having a friend with a nursing degree help me.
It ends up when the ER gave me the paperwork for the OB GYN. They didn’t give me the second page of the ultra sound report, which is more phone calls and tracking stuff down. Friday, I had to come home after dropping my daughter off to try to look for it. It has been a true frustration. It’s the process of a process again.
I feel like I have been wearing this heavy mask all week. I am very anxious about this. I hate going to work with this huge question mark over my head. Staying home is not the answer either. It was a dream to finally get pregnant. Our daughter has limited understanding of what is going on. She was sent to after school program on days, which weren’t her days. Monday, she didn’t know she was going to afterschool until half way through the school day. School just started back after vacation. About mid week, she asked me how serious it was. I felt for her. That kid at 9 year old knows what chemo and cancer is. I told her I was most likely having a side effect from a medication and the doctors are working on it. Needless to say, I am done with this. Our whole family is. It’s been a week of walking on egg shells and just blindly hoping against the odds. I know a lot of people are praying. I appreciate this. My aunt has called me a few times. Social media friends have sent messages. The few that know are calling me and checking up on me. I hope all my worry has been for nothing and we have a good ultra sound on Monday.
I barely slept last night. I woke up around midnight and googled everything about what a chorionic bump is, which is increasing my risk of miscarriage right now. They saw it on the ultra sound. I was told yesterday by the ER staff to stay home today. I did call out. i had some good friends reach out to me on Twitter and Facebook. I called my aunt. My anxiety is extremely high right now. The OBGYN will not see me until next week. I will stay home and rest today.
Last night, I was suppose to go to a Reiki Share instead of meditation class. They called me while I was in the ER. Strangely enough, it was the Reiki practitioner with my name who called. She helped me when I lost Addison, our daughter who was born still the week before Thanksgiving. I have an acupuncture appointment today. I am hoping she calls me early.
There is nothing the medical profession can do at this point. It’s a waiting game. This chorionic bump is considered a rare pregnancy condition connected show how to fertility treatment with articles on Google that frighten me. I have Reiki and several other meditation tapes. I am going to send all my prayers and energy to this little one and hopeful everything will be okay.
I am got to get my daughter to school. I decided to just send her to afterschool as a precaution. Yesterday the bleeding just sped up without warning. All I can do is send reiki and prayers to this little one. I am hoping beyond hope to make it to next week’s OBGYN appointment. The program out on the West Coast looked at the documents and I was told you have a viable pregnancy. The doctors don’t talk to you over the phone, which annoys me.