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(repost) St. Patrick’s day- 2011
17 Tuesday Mar 2015
17 Tuesday Mar 2015
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16 Monday Mar 2015
Posted Pregnancy
inTags
It has now been several years since I originally posted the blog below. In honor of Ansley’s upcoming 4th birthday, I decided to repost my story from the begining…
I recently read a book, Heart of the Matter, by Emily Giffin. The book began “…I find myself reconstructing those final, ordinary moments. Moments that make up our lives. Moments that were blissfully taken for granted—and that likely would have been forgotten altogether but for what followed. The before snapshots.”
I am all too familiar with the before snapshots, those days where everything was right in my world. When I truly felt my life was going absolutely perfect. I couldn’t have planned it better. Before my world was turned upside down. This week is the one year anniversary of my before. I remember every detail as if it happened yesterday. I can tell you the weather, what I did day to day, even what I was wearing.
Having given myself a year to grieve and allow my heart to begin to heal, I felt it an appropriate time to start my blog and share my life and my story. My hope is that I can raise awareness. Awareness for a condition called HELLP, which took the life of my daughter. A life that had not “really” yet begun.
12 Monday Nov 2012
Posted Uncategorized
inI have never been a big fan of roller coasters, and last week featured way too many ups and downs. Tuesday we found out we were having a pair of boys. I foresee baseball and boy scouts in our future. The ultrasounds looked great for both boys; strong heart rates, 20 fingers and toes accounted for, no soft markers for any issues!
The following day I saw my regular OBGYN. By her line of questions as she entered the room, I could tell something was amiss. Turns out, her in office quick screen I tested positive for proteinuria. Basically that means my kidneys are spilling proteins for some reason. While this is one indicator of preeclampsia, alone it would not lead to a diagnosis for preeclampsia. She was very surprised the specialist hadn’t caught it the day before. She decided to have me do a 24 hour screen, which is a much more accurate test to be sure there was not an anomaly. She also decided for the time being it would be best for me to work from home. She stopped short of putting me on bed rest and stressed I was not yet confined to the house or the bed for that matter, I just need to take it easy.
Thursday, things were looking back up again. All of my routine blood work came back and everything looked great. My platelet count was holding steady. This was great news!
But then came Friday’s news! I got a call from Dr. Reed. When I was pregnant with Ansley, I saw him once. I had not seen him since, but I knew when I was in the hospital he was the one requesting tests for research purposes and had been following my case. I was yet to actually see him in this pregnancy, so you can imagine my concern as I am listening to his voicemail and he is asking me to call him. Before I called him back, I called Chris and gave him a heads up.
Dr. Reed had been calling to discuss my sequential screen results. The sequential screen is a test that is done in multiple parts to screen for Down Syndrome, Trisomy 18 and neural tube defects. He started by discussing the Down syndrome results, I tested just outside the norm… again. I tested the exact same with Ansley and it was a false positive. He stressed they didn’t see any markers on the ultrasound, twins often throw the numbers off and as stands it was .2% chance based on my numbers. All in all, I was not too concerned about this result, but it is something I will keep in mind. There is another blood test I can do called MaterniT21, but it is only 95% accurate with twins. The bigger concern for him was my high Alpha Fetoprotein levels, aka AFP levels.
Typically, high levels of AFP would be indicative of a neural tube disorder like Spina Bifida. However, in reviewing my ultrasound he could see about 90% of what he needed to see to rule that out. He said they will check again in my next ultrasound, but he wasn’t concerned about a neural tube disorder. His largest concern was based on newer research that has shown a strong link between a poorly functioning/ weak placenta and high AFP levels. A weak placenta can cause pregnancy complications like preeclampsia, small gestational age, preterm labor, early preterm labor (28 weeks or earlier) and HELLP. Mixed with my history, the fact I am having twins, and now high AFP levels, he felt strongly that, at a minimum, I will develop preeclampsia during this pregnancy.
This was not exactly new news; my OB has done a good job of making sure we understand all that this pregnancy will likely encounter. She told me the day we found out about the twins that this would not be a normal pregnancy. She told me to expect bed rest, hospital bed rest, and that I would possibly deliver preterm via an emergency c-section. I have done the best I can of preparing myself for whatever happens while trying to remain optimistic. To me, this is just one more road bump to get past. That being said, this road is getting awfully bumpy!
08 Monday Oct 2012
Posted RAINBOW BABY, Stillbirth
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When I first learned that I was expecting twins, I reached out to my HELLP Syndrome message boards to see if anyone else had gone on to have a successful subsequent twin pregnancy following class 1 HELLP. I was told about a lady in the UK, we will call her Ann, that was a member of another board and was currently in her second trimester with twins.
I reached out to Ann and introduced myself. I soon discovered we had very similar histories; both of us losing our daughters early in the third trimester when class 1 HELLP stuck suddenly. She was advised much like me to wait at least a year to try again and had many of the same tests done looking for anything that gives a clue as to why this happened.
At exactly the one year mark, Ann and her husband decided to try again. Surprise… they were expecting twins. While she felt comfortable with her doctors, she also was working with a doctor at a major research university in the US. And, while the doctors didn’t always agree on her course of care, she was being monitored very closely. She was actually being watched closer than I am. She was having blood work done weekly and in office BP checks twice a week.
I received an email from Ann this morning. She wanted to let me know at 25 weeks she developed HELLP again. And, again they quickly deemed her life was in grave danger and made the decision to deliver the twins. Neither twin survived.
My heart goes out to Ann, she has no living children, but now 3 babies in heaven. I cannot fathom going through that kind of loss again. It is a scary reality. Ann was the only one I could find in more than 17 countries (that is active on these boards) that was also expecting twins. I know that just because her story ended in another loss, it doesn’t mean mine will as well, but I was really hopeful she would have a successful pregnancy and that I could use that as inspiration. But instead, her story now reiterates the trepidation that I have already been feeling.
25 Tuesday Sep 2012
Posted RAINBOW BABY
inJuly 30, 2012 – It is official…. I am pregnant.
We got cleared from the doctor and decided we were ready to try again. Within the past month I must have seen a dozen rainbows which I took as a good sign. Each rainbow reassuring me that we were making the right choice to try for another baby.
I had planned to take a home pregnancy test on Saturday, but I just couldn’t wait, so Friday after work I went ahead and took the test. It was negative. Better luck next month. After all, there is only a 25% chance of getting pregnant even if the timing is right. The weekend came and went. Monday as I was getting ready for work, something urged me to take another test. The same negative line popped up rather quickly and as I was getting ready to throw it away I noticed another line starting to form. I stared at the test as the second line got darker and darker. I was speechless. I walked to the bed where Chris was still laying and handed him the test. Not really yet awake, he grumbled for a minute, realized what I handed him and I could tell had the same feelings I did. He got up, followed me back into the bathroom; he was not saying a word and neither was I. I was still trying to wrap my head around what I was feeling. This is what I had wanted- what we had both wanted! But, I was nervous, scared, and a little sad that I was not overjoyed like I was with Ansley and at the same time I was happy, very happy, but I wasn’t excited. I was on the verge of tears and I still can’t tell you if they were good tears or bad tears, when Chris finally said, “Guess we are good at the getting pregnant part”.
I took one more test for good measure and told Chris I would call the doctor and let her know. I knew she wanted to see me right away.
I drove to work as if it were just another day. I tried to process the news; I tried to force myself to be excited, but my mind kept racing back to Ansley, my last pregnancy, the only frame of reference I knew.
13 Friday Jul 2012
Posted Stillbirth
inOne of the challenges I have faced over the past 16 months is quieting all the questions that frequently fill my head. Questions most of which don’t have answers.
…Just to name a few
I have spent hours and hours reading medical journals and anything else I could find on HELLP Syndrome seeking answers. There are tons of theories and even more statistics, but at the end of the day they all say the same thing. Because there is no known cause; there is no known way to prevent HELLP and the only treatment is to deliver as soon as possible. How can this be, with so many advances in modern medicine that so little is known about this deadly condition? {Yet another question}
As I researched, the question that really got under my skin was: why had I never heard of this before? I read baby books and spent countless hours on baby websites, not once had I heard of HELLP Syndrome. I was very annoyed when I went to the March of Dimes website and there was no mention of HELLP under pregnancy complications. There moto is “Working together for stronger, healthier babies”. (I am glad to report that as of April of 2012, it is now listed. Not sure if it was due to my emails as I never got a reply, but regardless, glad it is listed now)
At times, I have felt even some in the medical industry don’t really know much about HELLP. I say that not because of my OBGYN or my primary care doctor, in fact I have been very pleased with the care I have gotten from both of them. But, over the past year, I have had to see countless doctors. The first doctor that shocked me was a neurologist; I suffer from migraines and have seen various neurologists for many years. He told me on several occasions he had never met anyone that had a case like mine; he had only ever read about it. Months later I had to see a cardiologist, as were talking he had a nurse taking notes. She stopped the conversation to say, I don’t know how to code this. I don’t see HELLP as a condition in our system and I don’t know what it is. He told her to put it under either PreEclampsia or Eclampsia and note it was HELLP. At least he knew what category it would fall into.
The irony is while I have had doctors tell me they aren’t exceptional familiar with HELLP, every labor and delivery nurse I come across seems to feel they are an expert on the topic. I say they feel they are an expert because it takes very little time talking with them to realize they usually are not. I had one go as far as to tell me I should sue my doctor for missing my PreEclampsia and letting it get all the way to HELLP. When I told her I never had PreE she said, “No, that is impossible.” Sorry to tell her, it is very possible. My blood pressure was good until the day it all went wrong and I was not swollen at all. I had another nurse tell me “She sees HELLP all the time, and whoever told me it was rare was wrong”. No comment on that one.
But, as I mentioned earlier my main doctors have been great. When I first saw my primary care doctor and told her what had happened, she asked me for my OBGYN’s info. She promptly called her to discussed my case and asked if she could send over all of my records. She has gone to great lengths to educate herself on HELLP Syndrome. And, any test she runs she sends over to my OBGYN. As the patient I really appreciate this, it is nice to have your doctors on the same page and it prevents any unnecessary double tests.
As I approached the one year post HELLP mark, my primary care doctor wanted to do a complete physical to make sure my body had recovered fully. This would also start the process of me (and the doctors) determining if we would try for another baby. In addition to the normal physical tests, she tested for various types of Thrombophilia. She explained that my insurance may not cover these tests, since I had not had multiple miscarriages, but they only costs a few hundred dollars if not covered. They tested me for both Leiden Factor 5 and MTHFR .
A few days later I received a call from my doctor. The test results were in. I tested positive for 2 variants of MTHFR and they were running an additional test to see if my homocysteine levels were affected, which they were not. She explained about 30% of the population, including her, has at least one of these genetic abnormalities. And really, it just means extra folic acid and maybe blood thinners in a future pregnancy.
As I processed this news, I got angry. You mean there was a simple blood test that could have been done? And, while maybe it wouldn’t have made a difference, maybe it would have. But, it isn’t a standard pregnancy test because someone behind the desk at an insurance agency won’t cover it unless you have had multiple miscarriages or like in my case test positive. I realized the link between MTHFR and HELLP is nothing more than one of the many theories, but still… I am a member of a HELLP survivor board and almost everyone on that board tested positive. Maybe a coincidence or maybe something more, guess I will add this to my list of unanswerable questions.
02 Monday Apr 2012
Posted Pregnancy, Stillbirth
inTags
The time had come to deliver Ansley. My contractions were almost constant. In an instant, my hospital room transformed into a delivery room. On one of my final pushes, I realized Chris was no longer by my side. I looked around the dimly lit room, my eyes focusing through the tears, and see him in the far corner of the room facing the wall. Within seconds he fell to his knees overcome with grief and although it didn’t seem possible, my heart broke even more.
A few minutes later Ansley was born. She was so small; much smaller than anyone anticipated. After all, it was just a month earlier that she was measuring big. She was about the size a baby should be at 22 weeks. Apparently, HELLP syndrome had been manifesting in my body for a few weeks. Intrauterine Growth restriction (IUGR) is yet another complication caused by HELLP Syndrome. Had we been able to have the c-section in time, based on Ansley’s size, her survival rate would have been less than 1%.
I asked the doctor why she died. It was likely the perfect storm. She was tangled up in her umbilical cord, although my doctor didn’t think that had much to do with it. There was also a true knot in her cord; this combined with having a hard time getting blood, nutrients and oxygen from me was likely the reason. She wasn’t going to order an autopsy. At the end of the day, HELLP Syndrome was the cause of death. She said they would send my placenta off for testing; that would provide more helpful information than an autopsy.
By the time the nurse had cleaned Ansley up and handed her to us, the sun had come up. We studied our daughter memorizing every detail. She had my lips, my nose, and the same little fold in her ear as I have. But, she had her daddy’s long torso, and her face was the same shape as his. She was a perfect blend of both of us.
As we looked at our daughter, I managed to convince myself that she was breathing. And for just a minute I thought they were wrong that she wasn’t dead. Chris assured me she was not breathing, but then I heard it again. As it turns out, what I was hearing was the inflatable wraps they put on your feet and legs. I had heard the wraps inflate and deflate for the last several days, but between all my medicines, the lack of sleep and the pure desire to have my daughter live I had forgotten all about them.
The nurse returned with the smallest little outfit I had ever seen. We dressed Ansley and laid her in the bassinet. She had many visitors waiting to meet her. My parents were already in the waiting room and Chris’ parents were on their way. Later that afternoon his grandparents and my friend Maren stopped by to meet Ansley.
Ansley spent the day in my hospital room. It would be the only time Chris and I would have to spend with our daughter. The hardest part of the day came that evening- when we were told we had to say goodbye. I held my daughter for what would be the last time.
Just when I thought I was done for the day, emotionally, physically and mentally exhausted. I was presented with paperwork. The paperwork recorded Chris and I as her parents, her birth name and date and decisions like what funeral home she would be taken to and if we wanted her buried or cremated. Decisions nobody should have to make on their child’s “birth” day.
29 Thursday Mar 2012
Posted Pregnancy, Stillbirth
inBy 6am Sunday, my parents were back checking on me. They must not have been home for more than an hour or two, but much like me, they probably weren’t sleeping. Nurse Sharon told me I did well that night, better than they had anticipated.
It wasn’t long before my doctor, Dr. Kasparek and Dr. Kootnz, from Maternal Fetal Specialist stopped by for a visit. And for the first time, I was given some straight answers about what was going on.
They explained, I was very ill. They were worried about my liver rupturing and I was not out of the woods yet. My back pain was all due to how enlarged my liver was. They explained because my blood platelets were so low, my blood would not clot and that is why they didn’t go ahead with the c-section the night before. They apologized for the neonatologist and told me behind the scenes there was a lot of conflict about the course of my care. They hoped it didn’t carry over into my room. He is the baby doctor and it is his role to focus 100% on what was best for the baby with complete disregard for me. Dr. Kasparek explained that I was their patient. Ansley, having not been born yet, would have been a wildcard. They had to focus on saving me not her or they may have lost us both. She said, “last night you were sitting on top of a mountain, nobody knew what side you were going to slide down. It was 50/50 you could have easily gone one way or the other.” But, I had made a few improvements, they felt I was heading down the mountain in the right direction.
Until Dr. Kasparek’s visit, I didn’t realize I was so sick. How is it possible that I was THAT sick? Shouldn’t I have had a fever or felt worse?
I was glad my parents were there to listen to what they had to say. Since they had gotten back, Chris had run home for the first time to pack a bag. And, it is always good to have extra ears when listening to doctors.
Soon after Chris got back, his friend Chuck called. It was his son’s baby shower we no-showed the night before. He asked if everything was okay – NO NOTHING IS OKAY. Chris told him what had happened and how sick I was. It wouldn’t be long before word would spread. My phone began ringing off the hook, my Facebook page blew up with condolences. I never answered my phone or looked at Facebook. That would have meant I would have had to face reality. And, I was still very much in denial about Ansley’s death.
The rest of the day was a blur that is until my contractions began that evening. I soon found out I was too ill for an epidural. They couldn’t risk it, I could have some pain medicine but that would be all. It was going to be another sleepless night.
26 Monday Mar 2012
Posted Pregnancy, Stillbirth
inTags
Saturday turned into Sunday. Time went from moving in slow motion to becoming a complete blur. I had heard the words, Ansley had passed away. I saw everyone react, but for all I knew, this was just a very bad dream.
One minute the room was packed full of people, the next minute it was just family and a nurse. I don’t remember seeing anyone leave, but they had all disappeared. More evidence this must just be a dream, people don’t just disappear in real life.
I was told the course of my care would be changing. The focus was now solely on me. There would not be a c-section it was too risky, instead they would be inducing labor.
I was given a blood transfusion of platelets as well as a few other medications. It was the middle of the night. I was mentally, physically and emotionally exhausted and not asking many questions. My parents left as did Chris’s mom. They suggested I get some sleep. As exhausted as I was, there was no chance of me sleeping.
Sharon the night nurse pulled up a chair next to my bed where she would spend the rest of her shift, she turned the lights down and for the first time I cried.
I must have dosed off a time or two, but every time I did, I was awaken by alarms. My oxygen levels were dipping too low or my blood pressure was rising too high. I was told to focus on slow deep breaths.
Soon they were hooking me up to oxygen. Pulmonary Edema (aka fluid in my lungs) was setting in. This was yet another complication from HELLP Syndrome.
20 Tuesday Mar 2012
Posted Pregnancy
in
We arrived at the Emergency Room at Emory John’s Creek Hospital. They told us that since I was in my third trimester we needed to go straight to labor and delivery. It was standard procedure. Having not done our hospital tour yet, we were unsure where we were going. A nice young lady escorted us upstairs where we were greeted by Nurse Linda. Nurse Linda asked what brought me there. I gave her my same list of seemingly minor issues: my back hurt, I just did feel great, and my blood pressure was up 160/89 at home and 220/212 at the urgent care. She said well let’s get you in a room and check a few things.
She began to put me in one room and then changed her mind, one of the many things that only made sense in the days to come. She had me change into a hospital gown, collected a few samples, checked my BP it was now 189/96; she hooked up a fetal baby monitor and advised that we make ourselves comfortable.
We debated calling family, but there was really nothing to tell. We were sure it wouldn’t be long before they would send us home. Instead we watched a little TV, I believe the 6 o’clock news. A quiet room with TV, defiantly a benefit of being in L&D rather than the ER. It was neat to lay there listening to Ansley’s heartbeat on the fetal monitor. I had heard it many times before in the doctor’s office, but only for a minute or two. Ansley was way more active than usual. I told Chris we must have a little gymnast because she is doing back hand-springs.
Hours passed and nobody was really telling us much. Finally, Nurse Linda came back in and advised they would be coming to drawing more blood and may start and IV line, just incase the doctor wanted to use it. She was very nonchalant.
A few minutes later the anesthesiologist came by. He said, “I hear you have stubborn veins”. Story of my life, nurses and lab techs always have a hard time finding my small deep veins. He was not much older than Chris and I. He hung out in the room for a while making small talk. He explained it was a slow day at the hospital and he prides himself on getting a good vein every time on the first try.
He plunged the needle into my arm much like someone throwing a dart. Before he could get the tube on, a volcano of blood erupted. It went everywhere, all over me, all over him, the bed, the floor, I am pretty sure even the ceiling. It was a shocking sight, but he made a quick joke and laughed it off.
He said while he was there he was going to put and IV line in my hand in case they wanted to give me some fluids. Then for good measure he added a line to my other hand as well.
I bit more time past before Nurse Linda reappeared, she wanted to introduce me to the night nurse, but explained she was going to hang around for a bit. The doctor should be in soon to talk to me.
It was now after 9:00, Dr. Betty Anthony finally stopped by my room. She told me I was very, very ill. I had a condition called HELLP Syndrome. It was serious. My platelet count had dropped to 30,000 and was continuing drop.
I may as well have been listening to Charley Brown’s teacher. MAW, MAW, MAW, MAW. What she said meant NOTHING to me. I had never heard of HELLP syndrome and 30,000 sounded like a big number to me. Not to mention, I didn’t feel ill, my only real complaint was my back hurt.
There was no questioning the next words out of her mouth. They were prepping the OR for an emergency c-section; I was going to deliver Ansley that night. They were waiting on the blood bank and the neonatologist would be in soon to speak with me. In the mean time, they were giving me a corticosteroid injection-every little bit would help.
Moments later Chris and I were alone in the room again, both of our heads spinning trying to wrap around what just happened, or more what was about to happen. It was time to call our families. Chris picked up the phone and called my parents. My mom answered the phone. I heard him tell her we were at that hospital, I was very sick, and I had to deliver Ansley that night. I heard my usually soft-spoken mom scream “WHAT!!!” through the phone across the room. She and my dad wold be right there. He told her what hospital we were at and then proceeded to call his parents with the same news.
My parents and Chris’s mom arrived what seemed like moments later. My parents live an hour away, but it couldn’t have been more than 30 minutes. The doctor and nurses hadn’t been back in the room yet. I tried to explain I had a condition called HELLP syndrome, but that was really all I knew. I heard Nurse Linda say as she entered the room, “yes that is right. We are pretty worried about your liver” This still didn’t add any clarity to the situation. Chris had seen the name in his Google search the night before, but it was described as the most severe form of Preeclampsia and since I didn’t have Preeclampsia he didn’t click on it to read anymore.
Nurse Linda brought me an ice-cold towel and told me they were going to be starting a Mag drip. The first push of medicine would make me hot. Hot, that was an UNDERSTATEMENT. As soon as the meds hit the IV my veins burned like crazy followed by insane sweating. My mom pulled my hair up it was soaking wet instantly. Nurse Linda explained the Mag would prevent me from having a seizure or stroke and while uncomfortable it was necessary. About this time my brothers showed up.
Nurse Linda assured me I was in good hands, and that she had been off for 3 hours now and really did need to leave. She told me she was off the next day, but would call me to check on me. As she left the room it was filling with other people. A tech brought me the phone, my doctor was on the line. She told me that while she couldn’t be there tonight, she has been informed every step of the way and fully supported the decision that was made to deliver Ansley. She told me I was in great hands with Dr. Anthony and she would be there first thing in the morning. By this time the room was full. The night nurse Sharon, who I soon learned would be my personal nurse for the night, two additional nurses, a tech, the anesthesiologist, the neonatologist and Dr. Anthony along with my parents, my brothers, Chris’s mom and of course Chris and I.
The neonatologist told me he was going to scrub up. That at 24 weeks Ansley would have a less than 10% survival rate. They were prepared and would do everything they could. He told me that if it were up to him I would wait 24-48 hours get a few more corticosteroid injections and that would raise the survival rate immensely. I was game, lets wait! I was quickly told that was not an option and the choice was not up to me.
They began to prep me for surgery. They removed the fetal monitor to wipe down my stomach. The incision would not be a normal one it would be vertical because she was small and had not dropped yet. They put a surgical cap on my head and placed the fetal monitor back on my stomach but couldn’t find her heartbeat. I panicked! “Oh there it is” a nurse said with relief in her voice, but then it was gone again. The second nurse took the monitor and was moving it all over my stomach. It only took a second for the doctor to get frustrated. She requested the print out of heartbeat and took over. She dug the monitor deep into my stomach. I wasn’t even breathing at this point. And, I don’t think anyone else in the room was either. On several occasions they heard a beat or two, but then it was gone again. Her heartbeat was weak at best. Dr. Anthony requested an ultrasound machine, this would be better anyway. She could see exactly where she was.
Instantly the neonatologist appeared with the ultrasound machine. There seemed to be even more people in the room now. Dr. Anthony wasted no time getting it set up. She stared at the screen for a while. Sharon my night nurse shoved a thermometer in my mouth, still getting ready for surgery. I could see Ansley out of the corner of my eye. She wasn’t moving.
Dr. Anthony took a deep breath looked up at Chris and said.
I am so sorry, she is gone.
I heard the words, but I didn’t react at all. I felt like I was an audience member simply watching a show. I saw Chris drop his head into his hands, tears stream down my mom’s face, shocked looks by all in the room. I even saw myself, the nurse was prying the thermometer out of my mouth telling me I had to stop clenching my teeth. Time was moving in slow motion. Chris’s mom told the doctor she was wrong. The other nurse found the heartbeat why couldn’t she. Dr. Antony left and returned with a second ultrasound machine, in so much disbelief herself, she thought perhaps the first machine was broken. It wasn’t broken. My daughter had died practically before our very eyes.