My full story, trying to put it all down on one page.

My Story .
I can summarize with saying that I had HELLP Syndrome Postpartum (It stands for Hemolysis, Elevated Liver Enzymes and Low Platelets, I had to google that one... )http://en.wikipedia.org/wiki/HELLP_syndrome. I was admitted to the Emergency Room six days Pospartum with intense and severe swelling of my face, arms, legs and hands and feet; all extremities. My blood pressure was high, up around 160/110 which my doctor told me over the phone was IMPOSSIBLE!! (when I told him I had the pediatrician take my BP at the visit for her checkup. He even asked me why I would have them do that??!!) It may have been higher than that because between delivery from Preeclampsia on December 20 and December 26 when I finally went to the ER, I was ill that entire time, I kept swelling, my feet, legs, arms and hands, it was difficult to walk, climb stairs, I was seeing spots, my vision was blurry, I was nauseated and tired and felt like I was going to die. On top of which I was exhausted for having just given birth, trying my best to care for a days-old infant, with help of my husband, of course, but my stubborn self wanted things to go much better much faster. My milk was barely coming in and she was dropping weight instead of gaining, but I was determined to breastfeed. My husband, however was worried we were harming her, which was very stressful.

My baby was miraculously healthy. I was induced at 37 weeks; for Preeclampsia http://www.preeclampsia.org/they call it premature still and still did not want us to leave the house much. Her weight at birth was 6 pounds 4 ounces. She left the hospital at 5 pounds 14 ounces but then got down to 5 pounds 10 ounces because of failing with early breastfeeding.
But with the help of a lactation specialist, and through supplementing, we got the hang of it, and she started gaining beautifully. She was and is, to this day, our little miracle.

It really was the story of the girl screaming in the dark and not being heard. When I was early on in my pregnancy, I had a bloodtest result that was the first red flag that may or may not had been an indicator of what was to come. The result was a low PAPP-A, (plasma associated with plasma protein A), The result was that of a 1. This was at 13 weeks. They told me this result, what it can point to is that it can be associated with eventual intrauterine growth restriction, they told me, but not to worry, with good medical care, this would not happen to us, not with the vitamins he was prescribing, hahaha . They said, they would give me extra ultrasounds in the 3rd trimester. Nothing to worry about they said, he only had one other patient with this low result before and everything turned out just fine. I now also know that this low result could also be linked to potentially eventually developing Preeclampsia. http://www.ncbi.nlm.nih.gov/pubmed/21427871


CONTRACTIONS


Fast forward to 10 weeks later, at 23 weeks, I started having very painful contractions. Very scary. They would stop me in my tracks. These contractions would stop me from what I was doing. I would feel like the wind was knocked out of me. The first time it happened, we were on vacation in Disney World, with another couple, our good friends, Nick & Chrissy. We just stopped what we were doing, got something to eat and drink, took it a little easier. But a week later, it started up again, more intensely, more scary. So we called the doctor. And they told me to go to the hospital, since I was pregnant! So I did. It was during the workday and my husband was at work. I didn't work the whole time I was pregnant. I was laid off when I was only six weeks pregnant due to downsizing, so I was home. But I called him.

When I got to the hospital, I had never been to a hospital before for myself, I didn't know where to go: they sent me to Labor & Delivery, and I had to tell my husband to meet me there. I thought he would surely have a heart attack, telling him this kind of news over the phone, to meet his, barely six months pregnant wife in Labor & Delivery. Well, right then, they hooked me up to the monitors, and sure enough, I really was having contractions. But they didn't do anything for them this time, but this wouldn't be the first time or the last time this would happen, that I would get admitted to L&D for contractions. I would end up having to go to Labor & Delivery 15 MORE times until I delivered!!

Every time I went to the hospital, they sent me to Labor & Delivery, and every time, they hooked me up to the monitors, and each time, they did detect contractions, sometimes as close as six minutes apart. They were very concerned. They would check my cervix to see if I was dilating, thankfully and miraculously I never was, which was an amazing blessing. I also never spotted and never leaked fluid at all. They checked my blood pressure and very often did a test which is called a fetal fibronectin
http://www.marchofdimes.com/pregnancy/pretermlabor_fetalfibronectin.htmlwhich is a test which is a swab of the cervix to tell if you are close to delivery, close to rupture. I always passed that test too.
I would often get saline bags of IV fluid to hydrate me, because that was considered a non-invasive way to calm my uterus down. They eventually told me I had an 'irritable uterus'. They would get very stern and lecture me about how much I was eating and drinking though I thought it was plenty, my appetite was fine, and my weight gain was right on track, but they would want me to double or triple it my liquid intake for the baby, to drink up to 2L of water a day.
The IV's would usually do very little but make me very nervous but would not calm the contractions. I very often was administered a drug called terbutaline
TERBUTALINE
The drug, the first time they gave it to me was a shot intravenously in the leg. I talked myself into it very bravely, because it was such a wave of activity, me being so early in my pregnancy to be having all of these contractions and the doctors and nurses telling me that this would calm things down and was very safe for the baby and was safer in general overall than delivering. These were my options, it sounded like. I beared through it, it wasn't too bad. The shot itself was just a shot, it was ok. The aftereffects were really something else entirely!
http://www.medscape.com/viewarticle/737609I started to feel like I was hyperventilating, like my skin was crawling, my heart was pounding, I was all jittery, and couldn't calm down, couldn't relax, and couldn't find my center, basically. Couple that with the stress of all of these experiences happening to me all at once, worrying about my baby, trying to stay strong for my husband who is watching this all happen to me, not knowing how to find my strength, and then finding them putting an oxygen mask over my face, and for the first time, I just break down. I close my eyes and let the tears flow. This pregnancy was not supposed to go like this. I have always wanted to be a mother, the way a person knows they are meant to do something. Some people are just compelled in that way, and I always had been, since childhood. And when I got pregnant, I was elated, and so was my husband, slightly nervous, but mostly and entirely excited and overtaken with joy with the thrill of it all. I thought about it all the time, read every book, saw every movie, admired everyone elses' baby, was the favorite Auntie for years.....


It's hard even now, to go back and try to put into words what the emotional and physical experience felt like, but it was overwhelming, and I tried as best I could to power through, continue to rest, take it easy and try to relax, but the odds seemed to be stacked out of my favor, and the direction of my health did not seem to be in my hands most of the time. I would go for a walk and be blindsided by pain, I would be reading a book, and contractions would start, I would be doing very little and things would just come to a crashing halt. I had to cancel plans and limit my activities. I wouldn't attend this party, or I would sit on the sidelines at that event. I didn't go trick or treating for the first year ever. My whole family went to Radio City Music Hall to see the Christmas Spectacular and I didn't think it was a good idea to be that far away from my doctor.
I ended up moving my baby shower up to 32 weeks, because we just weren't sure how long the pregnancy would be sustainable. Would I make it the full term or not?


For the mother-to-be going through this kind of thing, it is hard to relate to most people, because most everyone you talk to cannot relate to this. Pregnancy aches and pains are supposed to be funny. You're supposed to complain about your weight gain, not really to the point that you are worried there might be something wrong with you. You should be able to wear your shoes. Your face shouldn't swell, your hands shouldn't swell the way mine did, where most bracelets, let alone my wedding ring, didn't fit for four months Postpartum. This wasn't normal. This wasn't status quo, and there was nothing I could do to control what was happening. People should say "aww you are only pregnant in your belly" not the look-away,-say-nothing thing that comes when you swell to what seems like twice your size.
It was more than just appearances though, it was trying to muscle through the experience of being pregnant and keep focused on staying healthy for the baby, drinking enough, resting enough, when I could barely lay on one side without having contractions start up again and feel winded.
Finally at the end of the pregnancy, I was eager for it to be over and that's when the rash started.

PUPPPS RASH
I developed a rash that I didn't even mention to my doctor until an hour or two after I delivered. I had been dealing with them for about a week until that point. Little did I know this was also related to the pregnancy, and my skin was trying to reach out and scream out to everyone "HELP HER!!
I was surprised and I still am how little information is out there on PUPPPS and how few doctors I have mentioned I have had it, know about it, as well. "http://en.wikipedia.org/wiki/Pruritic_urticarial_papules_and_plaques_of_pregnancy
The rash, it's hard to describe, someone online, on message board, where I found most of my information on PUPPPS rash described it as "Dante-esque". It wouldn't calm down with ointment, it mostly was more irritated with lotion or cream or gel, it itched like crazy and the only thing that would stop the itching is to take a shower and cake my whole body in Aveeno oatmeal bath for chicken pox. I couldn't bathe yet since I had just given birth. So I would stand in the steam and cake myself in this powdery goo and get relief. I would take 2 Benadryl at night but then would feel the guilt of potentially passing the Benadryl in my system to the baby while nursing, and yes, I nursed through all of this whole ordeal!!
Having Julia finally born and in our lives made the nightmare of delivery of PUPPPS, Preeclampsia and HELLP worth it all.
Having her down the hall, or in my arms, or even near me in any way made everything better.


I went to the regular OB for this and he gave me Prednisone which you are also not supposed to take while breastfeeding, but I did anyway, and weighed the pros and cons. It might be why she ended up getting thrush. Puppps was a terrible thing to go through, and for awhile took my mind off of everything else, because it is hard to focus on much else when you are head to toe in hives and itch. At one point, I had welts from my neck to my ankles, on my arms, legs, neck, everywhere but my face. It was worse on my tummy, buns, thighs, legs, arms, hands, and feet. The soles of my feet, palms of my hands and my face were spared.
So all in all, the rash lasted 10 weeks, 1 week before I gave birth, maybe even 2 if I can recall, but I wasn't too attuned to it because it was low on the list of things that was going on and it hadn't peaked in severity yet. It was at its worst 1-2 weeks after delivery and finally completely went away 6 weeks Postpartum.
Delivery

Having Julia. When I can separate in my mind the crap that came before having my beautiful baby and the awful parts afterwards and focus on the delivery itself, I can find my happiest memories. My pregnancy was such a long and painful and scary time when I just tried to be brave and hold on and make it through and look forward and think positively and hang in there. And then finally one day it all became worth it. It was worth it all along, but it was coming true, we were going to get to meet her. I had a relatively easy delivery considering everything we had been through. When it was time, it was time. I was induced because of Preeclampsia. I had proteinuria of +3 and blood pressure of 140/90 which was just the borderline cut-off for high blood pressure. What they were most concerned with was the protein and all that I had been through up until that point, and the fact that I was 37 weeks meant I could now be induced. Prior to this, I was on bed-rest for all of 24 hours. We had just gotten the first real serious snowfall of the season, over a foot, and we were within 5 days of Christmas. I was buzzing with excitement. I was almost over the limit of excitement of finally having my baby, and Phil was too, we could hardly really process what was happening. They started me out with a Pitocin drip at 1:30 in the afternoon and I ended up delivering Julia at 19:19(military time), 7:19pm, just under six hours of labor. I went so quickly, every time they checked my progress, I thought they were joking. They told me I was going to more than 75% likely be a C-section because I was early, she had not descended and because I didn't go into labor on my own, and was getting Preeclampsia. I readied my mind for it. About 4 hours in, I was prepared to hear that I was going to get a section, and sure enough, they told me I was 9 centimeters and I would be pushing soon. I couldn't believe it. I got an epidural somewhere in there, I am not sure if I was 4cm or when that was. I was a complete and total disaster before the epidural, and not sure how I would have gotten through the experience without one, or without someone surgically removing my brain so I could forget the pain. I was looking at Mom and Phil both for support and they both were so wonderful and so helpful but it was so hard to even remember how to breathe through the pain. And the pain would come right on top of each other. Pain on pain on pain.
But it was over relatively quickly. I couldn't believe how quickly the phases were moving, and all of the sudden the room filled with people and I was pushing. I wanted the pushing to not last forever so I gave it everything I had, and it only took four pushes and she was born. Seeing my husband regard our baby for the first time, was one of the most amazing moments of my life. It changed both of our lives forever. All of these illnesses, all of these things that had happened, they were all just like tides in the ocean, just part of the flow of what had to happen to get us to this moment. She was here, and she was perfect. She was a tiny miracle. I couldn't believe how warm she was, and how calm she was. She seemed to know us right away and want to be held and touched. It was amazing to me how much better I felt instantly after giving birth. The pain was mostly gone, but the pressure was really gone. I felt like I had lost 100 pounds, though unfortunately it was hardly any weight loss at all thanks to the Preeclampsia....

I then was able to begin recovery and have my sisters and my dad come into the room. They were able to come meet the baby and see me as well. It was amazing to me that they were there the whole time. It was a whole Dorothy wakes up at the end of the Wizard of Oz kind of moment! And you were there, and you, and you. All in one room, and now meeting our little precious addition.
Then, it seemed, we would be changing rooms and going down the hall to where we would spend the rest of our stay. Julia would go to the nursery and I would go to the recovery room of my own.
Recovery

At that point, once in my room, I was assigned a nurse. I was then starting to feel the effects of having been through something as momentous as giving birth. I don't think I thought I could stand, and they didn't think I could either, so someone assisted me to stand from my wheelchair to the bathroom because apparently it is important to empty your bladder after giving birth.
They also took my vitals for what will be one of the first 100 times in the next 24 hours. The nurse helped me from the bathroom to the bed. Then about 30 minutes later they came back and had me try again to empty my bladder and told me it was very important for me to try, because they measured my output and my measurement was extremely low. They sat with me, and then left me alone to see if it would help if I had privacy. It didn't. They then determined that after everything that I had been through, that I was now going to need to be catheterized. This was a one-time procedure that was necessary to do (and I am only sharing this information because of everything else that happened. It completely stunned me, it hurt like crazy!! and for about 18 months, I didn't even tell my mother because I was so looped and so spent at this point, I barely could remember all the details of everything that I had been through.)I don't mean to scare anyone, but the word barbaric definitely comes to mind.....
All in all though, the recovery process wasn't so bad. The best part was being with my baby, and being together with Phil, the three of us, bonding. It was also nice having visitors. In my mind, before giving birth, I imagined myself being in the hospital for awhile and getting time to heal for a bit, but the healing time is barely just beginning, when we had found ourselves signing forms for our release and our time was up.
The best part was when Phil bought Julia some Christmas themed outfits. We didn't have anything at all Christmas-themed for her, our beautiful surprise December 20th baby, because she wasn't due until January 9th. It wasn't in our minds that it was a possibility that she would come so early (even with all of our earlier drama, at least not thinking she would be as early as before Christmas)


He went to the mall and got the absolute cutest outfits for her very first hospital pictures. The hospital also gave her a candy-cane striped stocking cap that was so tiny. It had a giant bow on it. We had that cap forever and it looked so warm and snug and she looked so cozy in it! She had a stunning head of absolutely beautiful dark brown-- almost black silky hair! Everyone was stunned by her hair! Her pediatrician said, she is absolutely the most beautiful baby he had ever seen, and he has seen a lot of babies!
She was the sweetest baby I had ever seen, and my heart filled with joy instantly when she was born. It was an unexplainable wave of love that came over me, over us. It was this shear joy, this shared connection. This powerful thing that meant that she looked to us for her needs to be met and she trusted that we would meet those needs and just that wide open trust and love. It was boundless love. I still can't get over that. My brother, when we called him, he said, doesn't it feel like your heart just quadrupled in size? And he hit the nail right on the head. That was really it.
Emergency Room

It is hard to tell this story in a linear way, because it just didn't seem to happen that way. There were good times and it wasn't all 911 drama and emergencies. We went home happy and excited. We played with Julia and took a million pictures. We introduced her to the puppy, as we had worrisomely planned for months, which went fine, of course. Julia slept mostly and was very content. We showed her each of the rooms of the house. I was exhausted but thrilled, of course.
My first feelings of, this is not quite right, was when my parents came over on Christmas Eve. We were told by her pediatrician, for the holidays, because she was still a newborn, and still premature, not to leave the house. We were 2 days out of the hospital. We went to the doctor that day and Julia had dropped weight, which I was worried about. She was now 5lb10oz. I weighed myself and was more than I had ever weighed, possibly more than I was when I delivered. I burst into tears! I remember learning from my big sister that when you give birth, you lose 20-30 pounds. I was somehow on the losing end of that deal. What the hell!?!/!?


I started taking notice of the pain I was having and called my doctor. I asked for a refill of the Percocet I had after giving birth. He said no, they don't refill that. The pain I was having was what I thought just pain in my abdomen from cramping from after giving birth, but after learning more about HELLP Syndrome, I now know it as epigastric pain. I had this pain starting on Christmas Eve and did not go to the ER until December 26.
I didn't know I was in trouble, but things were starting to get worse, not better. The swelling that I experienced at the end of my pregnancy was starting to get more pronounced and more painful. It was hurting me to walk. The look of my legs was thick from thigh to ankle, hardly tapering at the knee. The ankle was so swollen, they were puffy and sore. The tops of my feet would hurt just to tap to the touch. My face had swollen, my hands and arms and my whole body more or less.
I would have something to eat and feel lightheaded, nauseated and disoriented. I was also on the least amount of sleep of my life and in the most pain after childbirth, but it was starting to be clear that I was not well.
I was absolutely 100% more concerned about Julia though at this point, however though.
I did not have a good lactation consultant and I was under the impression that unless I wanted to introduce nipple confusion, supplementing formula was the devil and for lazy moms, and breastfeeding was the best. I was determined to make it work! I would only give her the tiniest amount of formula at first the first few days, meandwhile my milk was barely coming in. Also, I was dealing with all of these things, and she is starving! I can't believe to this day, I put her through this!
I am so glad I got better advice, and quickly. We ended up supplementing with formula for 3 solid weeks until she kept getting diarrhea and I finally said enough is enough, and we threw out the formula. I breastfed for 14 months proudly after that!!
So a long story short, we went to a doctor visit on December 26 just to check that she was indeed gaining weight and that everything else was going well. Well we go to the visit and her weight gain was perfect, better than anticipated! They were so happy, and we were so happy too because we had been basically feeding her for 48 hours straight, like a bunch of crazy people:)
At the very end of the visit, I asked if the doctor didn't mind, would he check my blood pressure, and explained to him about my Preeclampsia and how they induced me, and he told me to call my doctor right away.

He said my BP was 160/110 and I should probably go to the Emergency Room of the hospital where I delivered.
I was stunned. That couldn't be right. So I panicked, and of course called my OB. We did this on our drive home. We were on our drive home, and my OB called back. He was very defensive and rude. He asked first off: why would I have the pediatrician take my blood pressure? what kind of blood pressure cuff did he use? that reading is impossible! I would be in a hospital if it were so high! If I really found it necessary, I should just go to an ER, he doesn't know what else to tell me.
I hung up the phone in tears. What a long miserable road it had been. How long had I been shoved aside by this doctors group? Oh it's you again? The one with the contractions? I just couldn't take it anymore! I didn't know what to do! I didn't want to go to an ER! I had never been to an ER!
I certainly didn't want to take Julia (little did I know you are not allowed to bring infants, though, duh, that makes sense) And I wasn't sure what my health issues meant.
So anyway, an hour or 2 later, my mom takes me there. I am still not even driving myself places so soon after giving birth. They admit me pretty fast but don't seem to link my chart from upstairs in Labor & Delivery. It really should have been much more obvious. It took 14 months for someone to tell me that what I presented with was Postpartum HELLP Syndrome.)http://en.wikipedia.org/wiki/HELLP_syndrome.
I had extremely low platelets, elevated liver enzymes and hemolysis. I finally got my medical records after a similar amount of time had gone by too. I started getting a little bit angry and a little bit questioning, "why did nobody catch this? why wasn't I treated?"