TREEHOUSE

Invaders

2010-02-08T13:19:00.005-06:00

I feel as if I've been invaded. It has taken over my emotions, my actions and my thoughts. For three days now....it's been the sadness that invades me.

If I could just sleep this portion of my life's memory away - I would. And when I wake up, if I could be pregnant again with a healthy, growing fetus - that would be my wish.

I've been absent for awhile now. I've been waiting. Just waiting two more weeks to tell you that I was 12 weeks along with my 10th pregnancy. I was hoping to share happy & hopeful news with my blogger followers. But then it happened.

Just when I was shedding a few of my "walls" - it happened. A day after I "peeked" at cribs online - it happened.

I was 9 weeks along and feeling pregnant. This one seemed different from the start. Hcg levels were very high (which is great). We saw the heart beating at our week 6 ultrasound and again at 8 weeks - it looked wonderful and strong. And I felt for the first time - pregnant. With morning sickness symptoms everyday (mostly at night). So, to us this one was different. We were becoming more hopeful than usual.

Last week on Wednesday it all changed. The night before I was feeling better than normal. This did not settle well with me. Wednesday morning I decided to call the clinic to see if I could move my next ultrasound up. I was feeling anxious and knew I would be a mess if I had to wait until the following Tuesday for my next heartbeat check. At this point, it was the morning sickness symptoms that were pulling me through each day. Assuring me that I was still carrying a healthy pregnancy. When that changed.....I needed to know.

My clinic fit me into their schedule that morning. We went in - no heartbeat. It was gone. I had a D & C the following day at Abbott. Sad enough....the Anesthesiologist remembered me from past procedures...which I actually found comfort in.

Today, I feel invaded. The sadness attacks me here and there. It's the strangest feeling - being pregnant, then not, then again, then not...over and over and over again. My walls go up, and then they come down...over and over again. This feeling - really sucks! But, I'm not ready to quit - not even close to ready. As weak as I feel today, I will become stronger. I will fight these invasions - whatever form they take. I'm not giving up.

A Video to Share

2009-11-13T00:42:00.007-06:00

A college friend sent me this video to watch. Check out the link below, if you'd like....

I Would Die for That

by Kellie Coffey

Searching...

2009-11-12T23:29:00.003-06:00

I've been doing some soul-searching these last few weeks. Asking myself some tough questions. Discussing the future with Scott. Thinking about what's next.... Where we go from here? Do we follow the same path we traveled last time? Do we take more chances? Do we change anything? Maybe we think a different way about the treatment process. And even bigger questions... Do we need to be parents? How important is it to us, to Scott.... to me?

We actually have had this discussion a few times these last couple of months. We love each other. We are happy and fulfilled and maybe that is enough. Maybe being a parent to a child is not in our cards. Could we sustain this fulfillment through the years - without children?

But then, we discuss it further. The idea now, today may be okay with us. But 10 years, 20 years from now....that's where I stop and think about the emptiness I may feel, not being a parent.

I wonder what my threshold is.... with these pregnancies. What's my limit? I will now be looking at the double digits. That seems unimaginable. I've almost forgotten some of them, like I've blocked the memory out. I truly feel as if I'm telling someone else's story. In some ways, this is true.....

When I was a young girl, living in South Dakota I had a neighbor friend that I would visit often. I remember one time playing with this friend, at her home. Her mother was sad that day. I had learned that the mom had lost a baby, had a miscarriage. I was 8 years old and somehow comprehended this. What I continued to learn is that this was her 11th miscarriage. That news was amazing to me. I could not grasp how that must have been, how she felt, why it was happening....all the questions a curious girl would think in her mind. I knew I was sad for her and wondered how she could go through such a horrible thing, so many times. This mother's story stayed with me through the years - to this day....we have this common thread. Generations apart, medical advances separating our lives - but we share this thing.

I think I've got a few more left in me. Maybe two or three - if that's what it takes. We'll see. Maybe next month - we'll start again....we'll see. But for now - I'm content.

THE CIRCLE - Our First Event!

2009-10-25T22:39:00.014-05:00

My dear friend, Mary Milota and I hosted the first event for THE CIRCLE last Sunday morning. It was a wonderful way to introduce our organization to friends and family. Thank you to all that made it over to Lake Harriet, in Minneapolis for the brisk morning walk and dedication. Thank you also to my gal pals, Kelly Kirsch, Nicole Meyer & Antoinette Golinghorst for your involvement in THE CIRCLE. And to all - please continue to follow future TC events! We hope meet new people, share stories and continue on with this important issue we've been faced with.

For those that are new to the organization, THE CIRCLE is a local, newly-formed community of women, couples & families affected by pregnancy loss and infertility. TC is supported by these people, along with their friends & family. Our goal is to provide continued support to those affected, to raise awareness on the subject and to offer local resources & personal stories on pregnancy loss and infertility. As THE CIRCLE grows into a non-profit organization, we hope to build our resources and provide more support networks & opportunities for women, couples & families in-need. TC began with a thought a few years ago. I had experienced a number of pregnancy losses and discovered the many others that were also going through a loss or an infertility struggle. As we shared our personal accounts, I felt a need for such an organization and discussed the idea with Mary....and here we are!

We plan to host another great event next spring, when it warms up again! And look for a website for members and visitors of THE CIRCLE to view in the future! We are selling some great TC apparel that has proven popular! Here is what we are currently selling to promote THE CIRCLE:

We also have t-shirts for kids and toddlers (in long & short-sleeve) for $16.00 each. If you are interested in purchasing any of the TC apparel, please contact Cinda at cindapfeil@mac.com to place your order!! If you wish to make a donation to THE CIRCLE, contact Cinda as well for a mailing address. We hope to raise money to continue supporting TC and it's planned resources for the future women, couples and families in-need.

Here are the photos from our first THE CIRCLE event this fall, on October 18th. BIG thanks to Ginny Lippert for capturing it on camera!

In The Waiting Room

2009-09-25T12:43:00.005-05:00

My distractions are constant. What's that about. I can't concentrate. My mind wanders. I feel like I'm sitting in a waiting room - just waiting.

This typically does not happen to me.....after a loss.

The last time we talked, I was practicing. We were practicing. And the practice paid off. I became pregnant. I took an early home pregnancy test on Sunday, August 30th. It was positive with the faintest line possible - but positive none the less. So it began, again. My ninth pregnancy was upon us, with new hope and new drugs. As I have been since my third pregnancy, I was guarded. But there was something new to focus on. I now had the knowledge that lipids could protect the embryo from the harsh and unstable environment that was my womb.

The process began on Monday the 31st. I made calls all morning long, to the three clinics that would assist this pregnancy. After the phone calls I went into my OBGYN for a blood draw. They would monitor my HCG and progesterone levels. By 3 o'clock I had my second Intralipid treatment at my home, in my living room. At 8 o'clock, Scott gave me my first Lovenox injection. It's a subcutaneous injection that is shot right below the naval. All these things, along with a handful of other pills will serve an important role, in protecting the embryo as it develops.

For almost two weeks I proceeded with checking my HCG levels, to ensure the process was progressing. Everything was looking good, the numbers were doubling like they should, but I was still guarded. We shared the news with friends, as we saw them, but I was not ready to put it in my blog - just wanted a few more days or maybe an ultrasound....something more.

I spoke to my local physician on Wednesday, September 9th. We planned to do our first ultrasound on Monday the 14th. I would be 5.3 weeks along by then and my HCG levels would be high enough to detect something on the monitor. This is good, right? I also did my first weekly blood draw for Chicago's laboratory. There are two lab tests they will perform that monitor the pregnancy while following the Intralipid treatment, in case there are any adjustments that need to be made while on Intralipid.

The next day I had another HCG blood draw. At this point my numbers were 549 and they should be around 1000 or more by the next blood draw. I got the phone call in the afternoon. I was sitting outside putting together a lovely flower basket arrangement for a friend. It was a beautiful day and I was feeling more hopeful than days before. I answer the phone call, it was my doctor. I was not expecting to hear from him, as he was not at the clinic that day. I expected to hear from the on-call nurse. So, right away I knew. He told me the HCG levels had gone down. They were at 529 (from 549). We both knew what this meant. But he said "Let's do another draw in a few days, just in-case it's lab error". I agreed, even though I knew it was not a mistake at the lab. This is what has always occurred. I've been down this road many times before. I knew it was another pregnancy loss.

Looking back, 7 of the 9 losses occurred between 4.5 weeks and 5.5 weeks. Typically the first sign was spotting. This time there was not a sign to "tip me off". The progesterone masked the usual signs. It wasn't until a week later that I began to spot, starting the miscarriage process.

Today, the process is over. I'm physically healed, other than some fading bruises from the daily Lovenox injections. I'm now waiting for the next step.

I spoke with the RE from Chicago two days ago. She shared with me the results of the Chicago lab tests that monitored my Intralipid treatment. The tests came back completely normal - meaning the lipids did their job. This loss was not due to the environment (my womb). It was something else, something unknown. So, this brings up more questions and more concerns, which brings on more tests.

I'm back in the waiting room. I'm here often...for two days or ten days or two months...always waiting. Specifically today, I wait for the lab tests to come in the mail from Chicago. They will arrive next Wednesday. Then we wait two more weeks for the results. From there...we'll see.

My mind wanders. I think about something for a few minutes, then something else, then something else. It's not always related to parenthood. But the idea of being a parent seems to cloud my thoughts. I wonder if it will happen. I wonder when it will happen. And mostly how it will happen. The odds seem to be against us, with many obstacles in the road. The fact that I get pregnant weighs on me most. Why would I give up, if getting pregnant is half the battle. I have that battle won, right? I wonder...am I being selfish? Trying so many times, with a loss each time. An embryo, a potential life that slips away. I feel I've failed these little chances of a baby. My mind spins....just spins around. What's the answer? So many questions! And yet here, I wait.

Practice Run

2009-08-14T04:57:00.005-05:00

I was sitting in church last week, on Sunday morning. Our place is a lovely Catholic Church in Linden Hills, nestled in South Minneapolis and just a few blocks from the beautiful Lake Harriet. I was introduced to the church by a dear friend that was married there in 2001. The church is set up like a small arena or round theater with the center space as the alter. It's simply decorated and brings in some nice, natural light in the morning.

Being a visual person, I'm constantly looking around, soaking in every detail I can in the hour I'm there. I tend to get distracted by movement, sound and the presence of others in the space. The sounds on this day are amazing, as a favorite cantor sings out. Scott and I are always amazed by the effortless and rich voice that comes from this young girl. She has an amazing gift to sing! So it's a special treat when she is there, as part of the service.

Another distraction that morning becomes a mother, sitting across the room from me. As the priest moves through the homily in the center of the church, she sits behind him and is in my sight. She holds, in her arms a young baby - about three months old. The child is like an extension of her body, as she holds her close and with ease. What I crave is how a mom nuzzles a baby close to her neck. This must be an amazing feeling, to be that close to your child. As I follow her moments, I seek out other mothers tending to their young ones. It's like a task I've been given for the morning. I find a few more moms with little ones, a couple of dads as well.

These past four years I have a tendency to notice mothers with babies and mothers with "bellies". The bellies still fascinate me! I don't think there's anything more beautiful than this. I've never gotten to the point of having a "bump", so I find myself wondering what it would be like - what I would look like. Fascinating - it's the simple things in life that can make my mind wander...

Today, I'm not pregnant.

We're calling it a practice run. And we may have more of these to come, before we can see the Intralipid in action. Tomorrow we start the process over with another treatment. This time I will not need to fly out to Chicago. Instead, I will have the intravenous infusion at my home. With help from my amazing physician Dr. A, I was able to access the drug for administration through a local program. I'm more than delighted, knowing I can eliminate the stress that comes with traveling to Chicago every time I need the treatment.

I expect tomorrow to go smoothly. We start over, again. We hope for a positive pregnancy test in about two weeks. If that does not happen, we do it again. They say.... practice makes perfect.

In the Midst

2009-07-29T13:57:00.006-05:00

With the afternoon off and enjoying the splendors of summer and some amazing piano mixes from Pandora, I begin.

The treatment last week went well. It took all but 45 minutes for the IV fluids to fill my bloodstream. The clinic was bustling with other patients and staff. I found myself wondering what their stories were. In the waiting area we sat in a semi-circle, as the love seat sofas were arranged in such a fashion. There were two couples to my left occupying one side of the space. They seemed to know each other, as they spoke closely. The young man I shared my cozy sofa with was a bit anxious, hunched forward, ready to dart if his name was called. And the nice man to my right had a wee little infant with him, in a carrier. He would sweetly "shhh" the baby when she stirred. I thought, "why is he here, he has a new baby"....possibly his wife needed some sort of procedure after childbirth. I would ponder this for awhile.

I went back, as my name was called and settled in on the exam table. I stayed in my street clothes with my dressy sandals and long necklace dangling. I dropped my signature on a few documents, one of which was agreeing to the "pilot study" - the treatment I would undergo throughout this next pregnancy. My vitals were checked and the nurse was on her way with the treatment. They checked my vitals three times during the 45 minute process and once more afterwards. I was off, payed the hefty bill and ordered a taxi back to O'Hare Intl. I was back together, with Scott in Minneapolis by dinner time.

Since then, I have been busy double-checking local agencies that could possibly perform the Intralipid treatment locally. Last week I had no luck, but this week I may have found one! Walgreens Option Care has agreed to administer the drug, if allowed by the RE in Chicago. After a few loopholes, due to the drug being used in an experimental setting and such, I received the call from Dr. A., my local physician that has been with me through this entire journey. Dr. A. and Dr. C. talked together on the phone today. It's looking like I may not have to go to Chicago for the treatments going forward. The Option Care agency will administer the drug here, at my home. Wonderful news! I should know for sure by the end of the week.

I should also know if I'm pregnant by the weekend. Positive or negative..... If it's positive, my local clinic will draw blood to follow my hcg and progesterone levels. I'll move forward with next treatment and an early ultrasound (5 or 6 weeks) to confirm that the embryo has implanted and looks good :). And I'll continue with the medical protocol prescribed by my physicians. If it's negative, I'll wait for my cycle to renew and start the process over again.

This week last year I had a kidney stone....my first of two. They SUCK! And the timing was terrible as Scott and I decided to start trying again for a baby. Without our new diagnosis we were going into it blind, but hopeful. As July 2008 approached we began the journey again. Then right after ovulation I had a kidney stone. Really! No, really? Great timing! I visited the ER three times and was finally admitted to the hospital. Ugg! The entire time I was thinking...."I could be pregnant" and every time I was approached by the physician on-call about pain management I would tell them that I may be pregnant. They would proceed with a blood test that stated a negative result. You see, there are about 10 precious days that a woman does not get to know if she's pregnant or not. We just have to wait. It would not show up on a blood test - I fell into this time frame. In the doctor's eyes, I was not pregnant. In my eye's it was just too early to confirm this. This posed a problem because of the heavy drugs they prescribed me for the pain of the kidney stone. Scott was the rationale one, telling me to take care of myself and not think about the chance of pregnancy. I finally passed the stone, 4 hours before they had planned to surgically remove it. Good news!

A week went by and I had forgotten about the pregnancy thoughts, when I was feeling like crap for a few early mornings now. I was in Spicer with the family and decided to run over to the market for a test. Hmm, it was positive. And of course I was thinking that this "embryo" had a tough start with all the drugs pumped into my body the week before. Looking back, now we know it would have had a lot of "fighting" to do, to grow in my womb for 9 months! Now we know, and now we are more prepared!

I have flashbacks to my losses. Each pregnancy has a story that I can remember and share. Some of them were brief stories, when I only knew I was pregnant for a week or so, then the spotting would start. When this happened - I knew. Some of them were more trying on me. As I was further along and began to "feel" pregnant.

I can say I cherished those brief weeks. I loved feeling pregnant! It was so amazing. One very big thing I am thankful for is being able to conceive. I know that can be half the battle! For Scott and me it was the thing we did well! I think about the women in my life that have struggled with this and my heart goes out to them! I find myself thinking I was the lucky one, being able to get pregnant. I would always find peace in knowing they would eventually get pregnant - I still feel this way. All those women I knew that struggled, now have happy results. And they will continue to. Science is an amazing tool for women now. Many years ago, the options were slim. Here I am, an outcome from this slim chance to have a family biologically. Aaron, my wonderful brother and I were adopted at age 6 and 5. We were so lucky to have been brought together with our parents back in 1979. We have the best parents on earth!

If this process does not have a good result, I have peace in knowing that we have the option to adopt. Through these past four years I have not gotten anxious or stressed in being without a child. I knew and still know it will happen.

I think my story started back in 1974, when I was born. Aaron and I lived with our young birth parents, we were left with the babysitter, then scooped up by the birth grandparents, and lived with a foster family briefly..... then adopted. And before my story was the one of our birth mother - being adopted as well. It's almost like a higher power wants us to adopt a child....following history's path.

Here I am, pondering that thought. Yes, that is always an option. But Intralipid is the step we are standing on today and we're excited!

Thank you all, for reaching out with positive words and hopeful messages. Each and every one of those notes, email, posts, and other various forms of social networks have touched me deeply! Along with Scott, I get my strength from you!

Love, Cinda

The Treatment

2009-07-20T20:57:00.005-05:00

So, I'm flying out to Chicago tomorrow morning to meet Dr. C at the Rinehart Center for Reproductive Medicine. She specializes in recurrent pregnancy loss (and fertility complications). Dr. C. runs her own laboratory as well, in Chicago. She's a pioneer in the field! And, she seems to have unlocked the mystery to my many pregnancy losses. It's a quick trip... flying in & out on the same day.

After my 8th loss last December, my physician (Dr. A) got me in-contact with the Rinehart Center. I didn't have any luck with the local "top doc" specialists - so we needed to look elsewhere. We needed to dig deeper this time.

After a phone consultation with Dr. C, I went through a series of lab tests. I've had many tests in the past that have given us insight on the "miscarriage" issue we were having, but we still were losing the pregnancies. These new lab panels checked more "unlikely" or "uncommon" sources for the problem. They were not the usual lab tests performed by many labs in the area. Millenova Immunology Laboratories is one of very few labs in the nation that perform these type of blood tests... they dig deep!

After the process of sending my blood work to Chicago's lab, we had another phone consult with Dr. C. We now had some answers...

The lab work determined that my natural killer cells (NKa) were elevated (over-active). They don't know the cause for this but it would explain the pregnancy losses. Basically every time I would become pregnant this NKa factor would attack the embryo that implanted, seeing it as foreign, thus causing me to lose the pregnancy. Fortunately they have recently found a way to "suppress" the natural killer cells, allowing the pregnancy to continue. The immunologic treatment is called Intralipid. It's a synthetic product composed of soybean oil, egg yolk, phospholipids, glycerin and water.....hmm, a bit strange - but it seems to do the trick! It will change my rate of success from less than 1 percent to 80 percent. This is great news!! I will be case study number 121 for the treatment, as it has not gone to trials as of yet. It's said to be completely safe with little to no side-effects.

This brings me to tomorrow's Chicago trip. I will be having my first "lipid" infusion - 1 of 6 infusions I'll need throughout the pregnancy. The intravenous treatments are performed and timed, based on my cycle. The first infusion is to occur between 5 and 9 of my cycle. Then Scott and I do our thing..... if we get a positive pregnancy test, I'll need to get over to Chicago for the second infusion ASAP. Thereafter, I'll need an infusion monthly, up to 20 weeks gestation. After that my NKa (cells) lower naturally and should not pose problems for the term of the pregnancy.

Along with the Intralipid infusions I will have daily Lovenox injections (to keep my blood from clotting), a daily baby aspirin, the usual folic acid supplement (needed for my MTHFR result), daily progesterone (first trimester only...glad to hear it!). I will also have a weekly blood draw at my local clinic that is shipped to Chicago's lab - to track the Intralipid dose efficacy rate.

So that's the story - in a nut shell. I'm sure I've forgotten a few important notes along the way. In the past four years I've learned so much about this subject...more than I ever thought necessary. But I'm always excited to take-in the process and share my story with others. I know so many women, so many dear friends that have their own story to share. It weaves us together!

Tomorrow is a big day for us! I'm excited to start this new treatment and obviously hoping for a good result! As always, I'll be "cautiously optimistic" as we go through the course of treatments. But I'm feeling good about trying something new! Going into this with a new set of tools is very comforting! I may be able to "attach" myself to the process this time.

I will keep posting, as I have new thoughts and stories to share. Until then, my best to you all!

Love, Cinda

Ready. Set. Chicago.

2009-07-17T22:30:00.002-05:00

Here I am. Finally sitting down. Starting to type. Here I go...

I've been writing journals in my head for years now. Always having thoughts to share, stories to speak of. Now is the time for blogging, as Chicago is less than a week away. Finally...it looks likes this trip will actually happen! My many phone calls to Rachel (Dr. C's RN) to re-schedule this time-sensitive treatment due to health factors that got in the way. My flight is this coming Tuesday. My appointment is at noon...and I'm ready!

1,579 days ago I took my first home pregnancy test...it was positive. And the journey began. Eight known pregnancies since that day. Yes, I'm ready.