Monday, April 22, 2013

"A pair of shoes"

“A Pair of Shoes”
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
~~Author unknown~~

Sunday, April 14, 2013

Ian's pictures

I've really struggled with this one honestly. I'm not sure why. I've been overanalyzing it and perhaps it's simply the fact that I don't want to share him. I don't want strangers and loved ones alike seeing him in this state. I feel like somehow putting his picture up is leaving him vulnerable, like I'm not protecting him. But it's him. How can I tell his story and not show everyone HIM? I'm not ashamed or embarrassed. I don't want to be pitied or make anyone uncomfortable which I know will happen. I struggled with this all day today and finally I realized that my desire to be completely open about his story and my desire to show others who have been through this that it is ok to fully share, outweighs any other feelings I have about it. I'm trying to bring awareness that this is not a subject that should be taboo. We NEED to tell others what we've been through. We WANT to talk about our babies. I wouldn't be true to my goal if I didn't post his pictures. Also, over the past week I have a dear family member that took his photo and altered the coloring so that it wasn't so traumatic for others. She did an amazing job however I'm not going to post those. I'm going to post the actual picture. I can't bring myself to alter him. Because I am not ashamed and embarrassed, I will post his picture as is. It is what it is and I want to share this in the most honest and forthcoming way possible. This is one picture that I took "a picture of a picture" so the quality is bad but I will post the three pictures I took of it. Please don't hesitate to comment on him. I would love to hear your thoughts :-)
So without further ado- Ian Nathaniel Early

Happy Birthday Ian

Happy Birthday sweet Ian. We love and miss you so very much. You would have been 8 today :-)

Wednesday, April 10, 2013

Ian's story

I'm finally putting it down. The only reason I am doing it now is because I want it to be done before his 8th birthday on Sunday April 14th, and I'm going to do it a rather unemotional way. I've had SO MANY ladies contact me about incompetent cervix, cerclages, and my story that I feel it needs to be down at this point and the only way I feel I can do it, is with facts and not emotions. Maybe the emotions will end up coming out and maybe this will end up being super long like my other posts that I don't intend to be lengthy. * Update: This is incredibly long and graphic.

I'm copying and pasting this from my last post as a beginning to the story:

"I was a naive new pregnant woman, not wanting to ask too many questions and make a stink with my concerns, at a group practice HMO that had sub-standard care with doctors I never saw more than once. First symptom when I KNEW something was wrong and should have spoken up- I had a RAGING fever at 11 weeks, that had me in shakes, chills, and hotflashes, feeling almost dead for days and they said "Don't worry about it, your immune system is lowered during pregnancy and you will be more susceptible to being sick". I was passing out, dizzy, and out of breath constantly, blacking out, seeing spots, and had a tender abdomen the entire time. I was told, "It's all normal". I had unusual thoughts of impending doom, anxiety, night terrors about losing my baby, sleeplessness, violent outburts and I was told "These are pregnancy symptoms." I tried to suck it up. I was impossible to live with. I knew deep down that something was very wrong but again, I was naive and uneducated. I had NO IDEA how wrong it could be."

The start:

At 20 weeks and 5 days I had a vaginal ultrasound done to measure Ian and find out gender. I knew it was a boy just like I knew my others were boys but of course confirming it sent us OVER THE MOON. Josh and I have always wanted sons and always felt we would have two boys. She did the complete set of measurements on Ian, and didn't once check my cervix. I NOW know that it is standard of care to measure the cervix, or at least VIEW IT, via ultrasound in the second trimester when the measurements of the baby are taken. I was again, being given sub standard care. GET YOUR CERVICAL LENGTH CHECKED AT ALL ULTRASOUNDS and they can do it manually early on. It's so easy and takes ten seconds and may save your baby's life.

At 21 weeks and 6 days, I went into labor and didn't realize it. I did a lot of walking that day at a historical site and felt what I will call "tightening" on and off. I was in a cramped and HOT car in Florida for 4 hours and thought I just overdid it. I will try to describe from my point of view at the time, which was with NO experience and it was my first pregnancy. I was trying so hard not to be my usual alarmist, hypochondriac self. Starting at 9 pm until 5 am the next morning, the contractions were regular and painful. I had NO IDEA what was going on and sat in a rocker with my cat throughout the night and opened it would pass. I didn't even wake up my husband until 5 am. At 5 am I had lost my mucus plug and had bloody show. I woke my husband up and told him that something wasn't right. I STILL didn't realize I was in active labor.


We went to the ER and it a doctor over an hour to see me. She said she wasn't going to see me because she wasn't from my practice and that my insurance REQUIRED that I be seen by a doctor from my practice when at the ER. WTF. My parents were there by then and me and my father argued with her to at least fucking CHECK ME. She agreed but said she would do no further. I will never forget the look on face when she put the speculum in. She stated "Oh my goodness you are 4 centimeters dilated and your bags are bulging out." I cried out "I'm only 21 weeks and 6 days. That's too early right?" She said, "Yes, this hospital is equipped to revive a baby born at 24 weeks but no sooner, and even at 24 weeks the chances of life without disability is very slim. Let me get your doctor here and they will discuss it with you further. " She RUSHED away. I don't blame her. I couldn't even CRY because I was afraid it would break my waters. ALL emotion was kept at bay at that point. I was offically admitted. I don't know how much time elapsed and what happened over the next four days is a blur so I will try to gets my facts as straight as possible.

The decision:

I was not checked manually after that because they did not want to disturb anything. I was placed on immediate and complete bedrest. I could not get up for any reason and was not allowed to eat and had minimal fluids for four days. I vaguely remember them giving me something to completely stop my gastrointenstinal system, so that I wouldn't poop for awhile, I have no idea what it was. I had one ultrasound of my cervix done abdominally the next day and the specialist said that we had no idea if an infection was present or else an emergent cerclage could have been placed. They could not diagnose me for certain and they threw out the words "incompetent cervix" and briefly explained it. He said I was not a candidate for an emergent cerclage at that time unless they could completely stop my labor and all minor contractions/dilation/effacing for a period of time. This was the only way they could determine if there was an infection causing me to go into labor. If they were able to stop, it would be more likely that I had "just" an incompetent cervix. Although he made an educated guess that I probably had infection based on the fact that I was in active labor and didn't just have a premature rupture membranes or a cervical effacement with no labor.

He said our only option at that point was to try tocolytics (strong and dangerous drugs to stop labor) and the Trendelenburg position. The Trendelenburg position is when the body is laid flat on the back (supine position) with the feet higher than the head 15-30 degrees.

Tocolytics are drugs used to stop labor and the one they put me on was called Magnesium Sulfate. It BURNED going in my IV. I think they may have used another that started with a T. They can be poisonous to the mother after a short time, only a few days, and each woman tolerates it differently. Tocolytics are dangerous because they can cause fluid to accumulate in the mother's lungs and they are poisonous to the baby as well when used for more than a few days at a time. It IS possible to be on it for a few days, off, on, off, to try and tackle suppression of long term labor with NO sign of infection but it's not recommended. We were willing to do that though, ANYTHING just to keep him in longer.

I mentally prepared for alternating Trendelenburg position and strict bedrest for the duration of the pregnancy or at least to 24-28 weeks. There was nothing that was too harrowing for me to try, just to gain a few weeks. That particular hospital had an excellent NICU and had a fairly new protocol that stated they would try and revive babies at 24 weeks gestation if we wished, no sooner. I hear stories now about babies revived at 21-22 weeks and being healthy long term and I'm AMAZED. Even back in 2005 at a hospital with the top notch NICU staff and technology couldn't do anything near what they can do now.

I digress, I HAD to have faith that I would make it 24 weeks. I was very positive even through all of this. I was determined. Our decision to revive at 24 weeks was something Josh and I had to discuss at length, review with the hospital, and sign for. We were not guaranteed that they could even revive him if born at 24 weeks as they never know the "condition" the babies are going to be in and it's completely individual to the mother and baby. individual even anyway. They never knew the state of a baby until they were out so they would not make any promises, even to revive. But we decided we would give him any chance possible if I could make it to 24 weeks and that is a post for another day.

At 22 weeks and 4 days, after all drugs, catheters, and IV's were removed, I was allowed to eat soft foods. I was still not allowed to get up. I was being monitored for contractions with straps and I remember feeling relieved that I was unencumbered and happy that after the first hour or two, I wasn't contracting. We even joked with my parents but I still refused to laugh, sneeze, cough, or breathe deeply for fear I would deliver him. I had banana pudding and struggled to pee for the first time in a plastic "chamber pot". Ian was PERFECT this whole time, kicking as usual, heart rate perfect.... through all of this. A nurse who came in to check on me noticed after about 2 hours that I was obsessively rubbing my stomach. She told me to stop and that it was a subconscious sign that my body was still preparing for delivery. WHAT????

His arrival:

Within that hour, the contractions returned. I was in denial. I thought, "they are strong, they will subside, we can do this." They started to get stronger and I had to call a nurse. Josh held my hand, I couldn't look at him. As soon as the nurse entered the room and I saw the look on her face (they were monitoring my contractions from the nurses station), I felt the rush of a million heartbreaks start to envelope me and as they quickly wheeled me out in the hall on the way to a delivery room, I let out a wail that was so gutteral and so haunting that Josh remembers it to this day. This wail and the proceeding screaming occured as if I was experiencing it from the outside. It was NOT me making these noises. All of the pent up fear, pain, anger, hurt came bellowing out like a waterfall.

I'm starting to get emotional and cry and I'm afraid I won't finish so I need to do this quickly and with facts.

The contractions started hard and fast. Everything happened immediately at this point. They got me in a delivery room and transferred to a new bed. They tried to get an epidural in but my vessels were too swollen because I was in labor. I had to do this without pain meds. I became hysterical and heard my heart rate plummet on the machine, told the anesthesiologist that I was losing my hearing and passing out. He gave me something to bring me to and told Josh and I that we couldn't have general anethesia. I told him I wouldn't agree to that anyway.

I was still hysterical, so they gave me morphine. Even through the morphine haze, the physical pain was unbearable. Plus the psychological pain and resistance of not wanting to push. The nurses and Doctor were horrified, screaming at me to push, that I HAD TO PUSH. I screamed back in agony. NO, I DON'T WANT TO. YOU HAVE TO. Delivering a baby that is not meant to be delivered is the most horrendous emotional and PHYSICAL pain I've ever experienced. I will just talk about the physical pain. I have been through two other labors and multiple miscarriages at various stages, a D &C a D&E, two cerclage placements and removals and I can tell you there is nothing of this magnitude. You would think because the baby is smaller, that it would be easier or less painful, but even though my body was in labor, it still did NOT want to deliver.

I delivered Ian Nathaniel Early still in his bag of waters at 5:07 pm April 14th, 2005.  My bag of waters was black indicating infection and they broke it. He was 15 ounces and 11 inches. I did not want to hold him at first so they took him to the table and were surprised to see his heart still beating. They said they didn't know how long he had and did we want to hold him. I said no still, I couldn't, I was so sorry my baby. Josh said yes and they handed Ian to him wrapped up. I was still hysterical, apologizing and weeping to him in hysterics, obsessively, over and over.  Josh brought him up to his face, cried over him, told him how much we loved him and held him over me on my chest as he opened his mouth and tried to take a breath. I was both HORRIFIED and OVERWHELMED at the same moment. His perfection and beauty was OVERWHELMING and his dying in front of me was HORRIFYING. HE was PERFECT and such a beautiful mix of the two of us, just too small. I remember being shocked that he was alive but couldn't move his limbs. My parents were weeping to my left watching this. My mom (my parents were there and our priest to baptize him) could not BELIEVE that I took his towel off and looked at his perfect muscular little body. She cried "Why are doing that, leave him be!" My dad said "STOP it Jan, let her do it, she wants to he looks like." I kissed his nose and was HORRIFIED that it permanently dented his nose. My kiss damaged him while he was alive.... while he was dying. It's in the only picture we have, taken after he died. I was shocked that he was gasping for a breath that he would never have. The only thing we saw move on him was his little mouth automatically opening and close for breath, like a fish. Josh and I watched him go from fairly pink, to dark pink, to red as his brain bled under his skin, to purple, to blue. We saw it all because it skin was so thin and vasculature was right at the surface. He was gone that fast. Minutes. His eyelids were still fused together but he had the most incredible bright blue eyes that were visible through his paper thin eyelids. They were brighter than the brightest sky and ice combined.

A nurse asked for a picture. We handed him over for a moment. We see a smile in his picture. His eyes and smile were perfectly innocent and free from the horror we were experiencing. We cling to that. We held him for hours and finally gave him up in the middle of the night and left the hospital empty handed. That was the worst part but again, I will get into that another time.

Thank you for listening to Ian's story. Thank you for reading about our short time with our precious baby.

I was/am infertile.

*This is a post to avoid if you don't want to read about periods, my sexual activity, and PCOS. Definite TMI but I want the information out there.

I was infertile and I suffer from secondary infertility now.

Wow, that was hard to write. The emotional and spiritual issues associated with all of that will have to wait for another post. I feel I need to clarify some things about me:

I was as infertile as they come. Unable to conceive. For years. Many, many years. It was my issue. Without embarrassing my husband and putting information he doesn't want on here, let's just say he and his stuff excels in this area and leave it at that.

Some background: I was a late bloomer. I got my period at 12 and it has NEVER BEEN REGULAR. Not one. The periods differed in severity, some months when it finally came it was nothing, sometimes it was MAJOR and crippling. But more times than not, it was nothing. The first year I was dating my husband, I remember we noted that I had only 4 periods that year and we had sex that year. There was no way I was ovulating. You might be wondering "why would she be taking that chance not using birth control without a diagnosis or knowing for sure. I always "knew". I don't know how else to explain it. I was sexually active for many, many, many years before being married and never used any form of birth control. I wasn't diagnosed with PCOS (poly cystic ovarian syndrome) until I was 19 but I always knew. I have always been "stocky"- overweight, whatever, very Italian looking, thick head hair, short, tomboy, had a period of bad acne in college, etc.  I was also raised by strict Catholic parents and birth control and sex was not discussed. Birth control was not available to me. I was supposed to just abstain. Except I was premiscous. My entire life was controlled, except for the times I was able to be sexually active and hide it from my parents. That was my rebellion. I was naive and uneducated.  I spent years just hoping that "things would work out" and I wouldn't end up pregnant. I didn't even want to be married or have children, ever. In fact, I contemplated having an abortion if I were to ever get pregnant prior to meeting my husband at 19. But even then, then I somehow knew conceiving would be a challenge. In college when my husband and I had been dating for over a year, contemplating marriage, and I wasn't feeling well, I decided to be checked out. I went to a doctor and explained all of the lovely PCOS symptoms, had blood work done, said I read up on it and wanted to get on birth control to regulate myself and make sure I didn't get pregnant (haha) in the beginning of our marriage.

My blood work came back with HIGH testosterone and high insulin levels. I was diagnosed with PCOS and insulin resistance based on those results alone. I have never been hairy, never had actual cysts on my ovaries (although I'm SURE I have but it just hasn't been documented), never had skin tags or a lot of the other things that come along with it. But they said I had it just the same and that a lot of women don't present with all of the symptoms and that it's completely individual.

I was also told that "you may never be able to have children. Conception will be difficult at the very least." It was blunt and said very coldly. If I didn't already have a clue, I would have fallen apart at that appointment. And that was back when I didn't want children!!

I was placed on 500 mg of Metformin/Glucophage twice daily which was fairly new and controversial at the time. I was also placed on birth control. I immediately lost 20 pounds within a two month period due to the Metformin and it TORE my stomach up. I had a love/hate relationship with it and I would go on and off of it on a whim. Same with the birth control.

After we were married, I tried to 6 months to a year without BOTH and I gained 50, yes FIFTY pounds in that 6 month- 1 year period. I also came home every day and went straight to bed. My periods were irregular again and I had no libido and no energy. Not good for a new marriage.

I made a drastic decision that I was just sick of myself, went back on the Metformin and birth control, went on the SOUTH BEACH diet, was strict and stuck with it, and ran every day. I'm not sure how I did it. I have never and may never have that kind of self control/management again. Having my husband on board also helped. South Beach was new, the hype was all over and HUGE, low carb stuff was available everywhere (even at Hardees and McDonalds!!) and I saw immediate results. IMMEDIATE. Within the first three days. I've dieted a lot over the years, and this is the ONLY way my body can lose weight. The only way. I HAVE TO cut carbs. Nothing else works. And it's hard because I CRAVE carbs, even on Metformin. It was terribly hard but seeing my body change and my energy increase was so reassuring and that's what kept me going. I also think I have some major auti-immune issues going on and that it was a miracle I ever had any lasting pregnancies, but I do believe the South Beach helped with my inflammation and flares back then so that whatever is wrong with me in that regard was kept at bay (I'm only now going through testing for all of that, yes after completing our family, that's a whole other post though) I was about 23ish when I South Beach and all of that jazz and it had nothing to do with my biological clock at the time. I thought babies were way off and still wasn't sure if I wanted children. The drive to do this was strictly to feel better.

We made a huge move to Florida around that time and decided as soon as we moved down there that we wanted to start a family. We weren't ready but for some reason, BAM, my biological clock was a-ticking. I think starting fresh there, the sunshine, being lonely... they all were reasons I wanted to have a baby.

I came off my birth control (this is an important fact I will talk about in a minute) and I picked up an ovulation kit that September/October we moved just to see if I was ovulating. I had one period after coming off of the birth control, ovulated on time according to the kit (I was still so much less informed than I am now) and we did the deed. I got pregnant right away, didn't realize it like so many women wish, took a pee test a week after my period was supposed to be due, and it came back positive. WHAT? SO easy now that I knew what my body needed! Wow! I went in to the doctor that next week, it was now November, and found out I was 8 weeks and 5 days pregnant. We saw the heartbeat! My very first pregnancy, how awesome right? Unfortunately, this story doesn't end well, my sweet sweet Ian was lost at 22 weeks.

After we lost Ian we conceived N fairly easily after about 4 months. I did have to go on and off birth control for about 1-2 months.

Let me say no, and I have NO IDEA why this is- could be the PCOS and/or the auto-immune issues but it needs to be said. I've seen some other women experience this too. I have ONLY EVER BEEN ABLE TO GET PREGNANT COMING STRAIGHT OFF BIRTH CONTROL. Withing the month, either no period and I got immediately pregnant or had one cycle and then got pregnant. I'm thinking it regulated my body in a way that only birth control could do and my body, no matter what diet and exercise regiment I'm on, does not regulate itself to allow a "sticky" or long lasting pregnancie. Over the last few years I have gotten pregnant a few months after going off birth control (2-4 months) but they have ALWAYS ended in first trimester miscarriages. I DON'T think it's just a fluke.

I don't know if having my first somehow "kicked my reproductive system into gear" but I was surprised that we got pregnant with Nathan so easily. It could have been that my cervix was still very soft and effaced and the sperm just got right up in there. We will never know. We thought it would take longer.

Another thing that I feel needs to be documented with reproductive immunology booming now. I have had hives (some HORRIBLE all over my body and some barely there) with every.single.miscarriage. I always knew when those pregnancies were doomed. Except of course with my first pregnancy, my first loss, at 22 weeks, because that was not an early miscarriage and was due to incompetent cervix and Beta strep/Group B strep.

So back to my first and "easy" pregnancy. I was a naive new pregnant woman, not wanting to ask too many questions and make a stink with my concerns, at a group practice HMO that had sub-standard care with doctors I never saw more than once. First symptom when I KNEW something was wrong and should have spoken up- I had a RAGING fever at 11 weeks, that had me in shakes, chills, and hotflashes, feeling almost dead for days and they said "Don't worry about it, your immune system is lowered during pregnancy and you will be more susceptible to being sick". I was passing out, dizzy, and out of breath constantly, blacking out, seeing spots, and had a tender abdomen the entire time. I was told, "It's all normal". I had unusual thoughts of impending doom, anxiety, night terrors about losing my baby, sleeplessness, violent outburts and I was told "These are pregnancy symptoms." I tried to suck it up. I was impossible to live with. I knew deep down that something was very wrong but again, I was naive and uneducated. I had NO IDEA how wrong it could be. And I will stop here because I want to tell the rest as part of Ian's story.

I suffered from secondary infertility after my second was born, N, and it took us five years and a horrendous miscarriage to conceive C. I also suffer from it now, but we are done growing our family. I feel I had some chemical pregnancies inbetween there but I wasn't considering them pregnancies at that time. I have been pregnant since C multiple times and I have lost them at various times during the first trimester. I STRONGLY feel that there were THREE specific reasons I was able to conceive C in July of 2010 and that they all had to be "in line" in order for this to occur. I feel I know my body well after all of this so here it is.

The first, is that I had a miscarriage and emergency D&C on January 1st 2010. I see literature now showing that women with implantation problems and possible auto-immune issues undergoing IVF have a "injury" to their lining in order to help with that. Doctors will put a slice or do a D&C if I'm not mistaken to aid in the chances of implantation. I also think the first cerclage Shirodkar stitches I had placed with N so soon after losing Ian (which some pieces have been left in there, can't be retrieved) and the Teflon tape they used to keep it shut, may have interfered with me getting pregnant for many years. I feel that having my cervix stretched with the miscarriage and D&C in January somehow aided in my conceiving C in July. I have NO other reason to believe this other than a feeling I have. No doctors have mentioned either the cerclage or the tape affecting future fertility.

The second, is that I had came straight off of birth control and didn't even have a period when we conceived C.

The third is that I was not having ANY auto-immune flares of any kind. Which was unusual for me. It was just a good month, no allergies, no hives, no tiredness, no joint aches and pains, no hair loss, no edema, none of the lovely auto-immune issues that I face daily and have for years.

Call it luck, call it divine intervention, call it what you may, but I do REALIZE what a miracle it is that my body brought two living children into the world, particularly my second living child, knowing the full extent of how fucked up my body is (and I'm still learning).

I hope this helps some of you who are struggling with the same. This is SO MUCH LONGER than I intended!

Tuesday, April 9, 2013

Cerclage detail that I forgot- Teflon tape!

Oh my goodness, my husband just remembered a HUGE detail about my FIRST cerclage (two Shirodkar stitches, NO CERVIX at the time of placement). The doctor also used a Teflon tape, yes, Teflon tape vertically along the inside of my cervix to keep it shut along with the stitches. I have never heard of anyone else having this done and I have no idea if this is common practice or if this is something he felt he needed to do to keep N inside because the situation was so bad at only 10 weeks. Just like he decided to do the second stitch mid surgery. So, hubby gets the credit for remembering this detail, and I'm so sorry I didn't put this in sooner!