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.

Pre-admission:

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.

7 comments:

  1. this is so incredibly moving. there are no words to describe how I feel after reading the part about his arrival.

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  2. Thank you so much for reading it. I know it's a hard read.

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  3. Im so very sorry for your loss. Praying for peace for you.

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  4. I found your blog due to your recent comment at Mo´s. Just wanted to say I was reading. And crying, to be honest, which I NEVER did before because of a stranger's story. Ian was beautiful.


    Kerstin

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  5. Thank you so much for your feedback. You have no idea how much it means to me.

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  6. I stumbled onto your account, quite litterally. I dont even know what combination of clicks brought me here. but I have sobbed as I read this account of the birth of your perfect angel, Ian. to you and josh, I am amazed at the strength you had and still have each day. I am ashamed to say, that I believe this experience would render me useless, for the rest of my life. I don't know you. however, I feel it imperative I tell you what a beautiful, strong, and inspiring individual you are. I know your sweet Ian is beaming with pride, because he was blessed with a mother like you.

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    1. This is the most incredible and touching comment I have ever received. Thank you so much for taking the time to share your feelings. You have no idea how much this means to me and how it touched me to my core. There are no words. Thank you so much my dear unknown internet friend. Thank you.

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I would love to hear from you even if you wish to stay anonymous. Share your story, ask questions, or just say hi :-) You can always reach me at amorecappa@gmail.com