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My journey in the moment as it was happening

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My Details

Crystal Seidel Brandos;

Date Diagnosed :11/27/2012

Inital EF :<20%

Current EF :45-50%

Pregnacy Number :1

Thursday November 22, 2012 was the day that changed my world. Its thanksgiving and the first full day that we own our new house in rancho. 
The evening comes and we go to sue and mikes for thanksgiving dinner. I'm feeling uncomfortable and still swollen in my feet and legs.  Sue pulls out the blood pressure cuff for a family friend. I had a weird feeling with the thought of preeclampsia that I was reading up on and finally ask her to take my BP. She does and it reads 179/102. Everyone seems calm. She takes it two more times  . At this point, I have no idea what those numbers mean. I'm  advised by my MIL to call the hospital and talk to the OB on call. Once I call and inform him of my BP numbers, he tells me to come in. I respond with, "should I go home and see if I get better?". He's response: "you need to come in now, you have no choice, I'm giving the nurses your Name right now". It's  at this moment that panic, worry, and fear hit me like a ton of bricks. -is this really happening? - maybe I won't get admitted-maybe I'll just be on bed rest, shouldn't be that bad?-
Once at the hospital, I'm put in a hospital gown, given a room and vitals are taken. With my amazing nurse, Michelle, sitting at my feet and my husband standing over my shoulder, I'm told by the doctor on call that I have preeclampsia and  ill be having my baby within 72 hours. I'm stiffened with stock of what I've been told. Then, I burst into tears. -why me?- she's too small?- will she survive? Why? Why? Did I do this with all the stress of moving? I'm only 28 weeks along!-this can't be; it just can't - as I'm crying, Michelle rubs my leg and adam is squeezing my shoulder. I can't even look at him. I'm overwhelmed with fear and disbelief.  Adam excuses himself to make calls on how to finish moving out of our sold house in corona and move into our new house in rancho. 

I'm given a shot in my butt for the baby's lung development. My MIL shows up with toilette items, then my parents come down and stay for a bit. I feel very loved by all of them. I'm always putting others before me so I insist that everyone go home and rest. I even had adam go home because he needed to arrange the move and animal stays. adam leaves and Im exhausted and want to try to sleep. At that time, the NICU doctor comes in and discusses  ALL the possible difficulties that my baby could endure. Terminology I didn't understand.-more fear and uncertainties put in me-is this a nightmare? This can't be real? This can't be- this wasn't in my plan book- after an hour, he leaves and I try to close my eyes to sleep. But instead I stare in the dark, by myself, wondering why me? I write this to my baby girl:
  I was admitted to the hospital tonight and you have to come out early. Mommy and daddy love you so much and need you to be a fighter. 
-I'm so scared.
Friday 11/23/12- the day drags on. I try to relax and focus on getting my BP to lower. In my mind, if my BP lowers, then I'll be able to go home and be on bed rest.this was not the case- friends and family started hearing about my admission to the hospital . I call my best friend on the home and calmly tell her. She immediately starts crying and asks me how I'm so calm.-I need to stay calm to get my BP lower. I get texts and calls, but only answer a few. -I'm in denial that ill be having my baby soon. This day continues with peeing in a bucket so they can measure to see if theres protein in my urine.  Every time a nurse comes in, I'm asked if I have headaches or  blurry vision. Once this happens, the preeclampsia has gotten worse and baby would need to be taken out immediately. The day drags on.
-why is this happening to me? 

Sat 11/24/12- I have a few visitors. But I'd get so happy to see my friends and family that my blood pressure would go back up. I was advised by my nurses to limit my visitations bc it's important to relax and keep my BP low. i still have my dad stop by after work and he brings me M&M. he always knows the right thing to make me smile. it brings me back to my childhood days of him bringing me home sprite and flowers when i had the stomach flu. i feel at ease with my daddy there. im scared and happy that he's there to distract me. i love him so much. adam is gone most of this day, which is hard, but I understand. I listen to Christian music to try to calm me down and help bring my blood pressure low. the thought of losing my baby, frightens me to death. will she be too little? I always say things happen for a reason, but why this? What is god trying to say?

Sunday 11/25/12 today I think I start feeling dizzy when I get up to go to the bathroom. I start getting slight headaches, but still no protein in my urine. They start giving me advil. I notice that my pulse is above 90 but the nurses don't know why when I ask them. They keep asking me if i have history of anxiety.-ugh! NO! - At this point, I'm getting mixed signals from all the nurses and doctors. Some nurses tell me they think I may be going home on bed rest. -I'm so confused! 
This evening, I start having some difficulty breathing. I don't want to overreact, so I don't tell the nurses. Laying flat starts to feel difficult. I start coughing throughout the night. 

Monday 11/26/12- early morning, I finally tell my nurse of my difficulty breathing during the night. She tells the doctor and she's convinced by the nurse to get me a chest X-ray. The results come back and I'm diagnosed with phanomia. I'm instructed on how to use a breathing machine to expand my lungs . A nurse comes in and explains toe what full bed rest is. This may happen if I'm here long enough. Wait! No getting out of bed! Going to the bathroom in a pan!- this freaks me out and DOES give me anxiety. I finally try to to go to sleep with Adam laying down in the hospital bed next to me. I try to move my bed down flat,but find it uncomfortable instantly. I try to them sleep at a 45degree angle. I feel like an elephant is sitting on my chest. I cough some more. What is going on? Am I over reacting? is my baby okay? 

Tuesday 11/27/12- robbed of my joy-
  On this day, i get little sleep from the previous night. In the early morning, adam kisses me goodbye as he goes to the new house to finish the move and construction. I am fixated on the white board in front of me that has 11/27/12 in black written on it. I try to take a deep breath in, but can't. I know that today is the day. i will be having my baby taken from me at 29 weeks and 5days gestational. Breakfast comes and I barely eat it.  Breathing in gets harder and harder as the morning goes on. My lunch comes and i only take a couple of bits out of my grilled cheese sandwich. At this point I feel like someone is sitting on my chest and I'm gasping for air. I sit up on the side of the bed trying to take a deep breath in- but I can't do it..I walk to the bathroom look in the mirror and tell myself to breathe-just breathe. -why can't I breathe?- is the baby okay!-am I dying?- I ring the nurse in and the doctor is called.
Finally another X-ray was ordered and the results come back. I will never forget the look on my nurse's face as she tells me that I have pulmonary  edema. I read her face -shock, disbelief and fear. I start to feel more worried even though I have no idea what pulmonary edema is....I'm too scared to ask the nurse for details. I wait to have adam explain it to me when he returns to the hospital. 30 minutes later, the doctor, dr. Henderson, walks in to tell me that the csection is planned for 7pm! - I am calm and try to focus on breathing. I do not cry-I can't cry-I stare at the small portable white fan that is blowing in my direction. -"breathe crystal breathe" I repeat this over and over in my head. An hour later, it gets more difficult for me to breathe. I'm scared. - i take a shower  but the breathing gets harder and harder. i stand one hand holding my belly and the other holding the wall. i say it aloud now "breathe crystal breathe". i keep myself from panicking, knowing that it would just make it worse. once back in my hospital bed, an IV is put it.very painful- they start me on magnesium to lower my BP. then the catheter. A little pitch but no fluid comes out. My nurse is panicking but tries to hide it the best that she can. She calls in another nurse and urine finally  starts emptying into a bag on the side of my bed. -my breaths in are now shallow and short, I feel myself sweating as I ask to lift my bed. I'm now in a ninety degree angle. I grab my phone and call adam. I try to talk but can't get all the words out. I hand the phone to a nurse. She tells him to come now. -will this be the last time I talk to my soulmate? Am I dying? - a code is called. My bed is elevated high with 8 people around my bed just watching, waiting. I start to panic-I can't breathe.-why is everyone just standing there? -why are they waiting? -is this death?-I start throwing up. I feel the air from the small fan being blown on my face. I feel like a zombie. Its an outer body experience. my head says just breathe, but my body doesnt react. I stare at the fan as sweat drips from my face and nurses put wet clothes on my forehead and neck. My doctor, stands at my feet and just stares. After what feels like forever, I'm able to catch my breath. I'm exhausted and scared. -still no tears-an hour later, adam shows up. I'm so happy to see him but don't have the energy to show it. The anaseiologist  comes in and explains that if I don't require being completely put under that adam can be in the OR room. I want this so badly, I don't wait to be separated from him. I try to control my breathing so just a spinal tap will do, but I know that this will not happen. The thought of being flat on my back reassures me that they'll have to put me completely under. I say nothing, just wait and hope that my breathing will change. 6pm comes around and my parents come in the room. I'm so happy to see them,but again I don't have the energy to show it. I see the worry in their eyes. -will this be the last time I see the parents that brought me into this world?-this isn't how I'm suppose to go? They're not suppose to see me go out of this world, only in- they tell me my wonderful friends are waiting in the waiting room. I want so badly to see them and hug them and tell them how much I love them, but I can't -it's hard to talk, let alone breathe . I'm assured that they can open the doors to give me a wave as I get rolled from my room into the OR. My in laws come in and visit briefly. I start feeling anxious bc of all the people in the room. -I'm struggling to breathe, with leaking boobs and my bag of urine next to me- I ask everyone to leave except adam and my mom. Im being prepped for surgery and have to take off my wedding ring. as i hand it to adam, i feel sad. as i watch him place it in his pocket, i briefly think of our honeymoon in Jamaica. I try to keep my focus on this to help relax me-but it doesn't work. I then stare at my mom sitting in a chair at my feet. The fear in her eyes are so prominent as she holds back tears. I want so badly to hug her and sit on her lap like I did as a child. I feel so much comfort in her arms. It's the feeling I always wanted me and my daughter to experience. -will I have that chance?-will I die? Will my baby survive?- the cardiologist comes in with a heart ultrasound machine. My mom steps out. Adam is already suited up to go into the OR but i know that this wont happen. -As the wand is being scrolled around my chest, my breathing starts to get more difficult again. I feel adam grip my hand and rub his thumb between my eyebrows. I close my eyes. I feel his unconditional  love through his touch. When I open my eyes I look up at him as he stares at the Eco screen. His eyes are filled with tears and worry but he holds back. It's at this moment that I realize that this is more than just Preeclampsia , something is definitely wrong.-I'm dying-I feel it,I know it-I hear the doctor repeat "moderate, severe,severe" - I'm rushed from my room and through the hall, where the waiting room doors are open. I see my parents, my in laws, but my focus is on my girlfriends. I see Christina, Wendy, Lauren, and Emily crying- will this be the last time I see them? Do they know how much I love them and how much they mean to me? I yearn to give each person a hug, especially my parents, but can't. I get rolled to another set of doors where the nurse tells adam that this is as far as he can go. I'm overwhelmed with fear and heartache -I'm not ready to say goodbye-what do you say in your last words to the love of your life?- I say I love you! He says it back-he kisses me and I get rolled past him, through the doors. I say it again before the doors close, but this time no response-I know he's crying and can't speak.-I try to take a breath, but I can't- I can't leave him!- this can't be the end to our story -he's everything to me-he's my rock and my whole heart- I'm not ready to be separated from him- 
  I'm quickly placed on the operating table. Laying on my back with my arms stretched out like Jesus on the cross. They warn me that the a-line they need to insert into my artery will be painful. They need to do this to monitor my blood pressure during the operation. The area on my right wrist is numbed first then the anaseiologist attempts to do the a-line. First attempt-fail. Second attempt-fail. I hear him say that he needs to try the other wrist. I hear the frantic in his voice. I focus on the OR ceiling light above me. I talk with god. -I'm ready if you want me, but please don't take her. Please let her live. I don't want to go just yet, but I'm ready if you want me now- I keep staring at the light as I grasp for air. Now my left wrist is being poked. Attempt three-fail. I hear him requesting the hospital doctor to try. I start to panic. I can't get air. I feel as though I'm suffocating. My nurse, Michelle, puts the air mask on me- I can't take it! I feel more suffocated with it on. She then holds it above my face as I try to breathe in, breathe out. -I finally say "I need to be put under" .at that point, I hear the hustle and bustle of the nurses and doctors working at a fast pace to prep me. A sheet is put up at my neck line that inhibits me to see my belly. Cold runny substance is rubbed on my lower stomach. I look up at my nurse Michelle and say "pray for me". She responds "I will" . this is the last thing i hear before the gas mask is placed on me and my eyes close. 
  
    I wake to no baby in my arms and no movement in my belly. My joy of holding my child and my joy of a fantasized childbirth ripped away from me. Stolen-robbed.  No joyous tears or congratulations balloons, just questions, uncertainties , disbelief and fear. When I open my eyes, Adam is standing over me with my mom sitting in a chair behind him. They ask questions, but I find it hard to have the energy to respond. Everything seems fuzzy. They tell me I'm in the ICU-I wonder why I'm not in the mother baby unit, but don't ask . Adam shows me a picture of my beautiful daughter, Scotlynn. So tiny and fragile-  relieved shes alive- thankful god let both of us stay here- I see exhaustion in their eyes. I tell them to send everyone home and visit me later. My mom kisses my forehead. Oh, how it feels to feel her presence. - adam passes out on the couch next to my bed. I drift off to sleep and am wakened by my ICU nurse . She gives me a sponge bath and changes my pads underneath me. -dignity is stripped away. I feel like an old person- with the pain medication in full affect with the push of a button, I find myself smiling and attentive and easier to breathe. This nurse is young and sweet. I tell her my Love story with adam and she shares hers about her boyfriend. She even shows me a picture of them two . -to some degree, I feel civilized again- able to breathe and talk and smile- 

11/28/12- I wake to a knock at the door. A person walks in to take my blood for tests. I wonder what the test is for, but don't ask. Then the same Eco guy comes in and does an ultrasound on my legs. Adam explains to me that he's checking for clots. I worry but am in too much pain to think about it. I press my pain medication button- I get served lunch and look at the webcam screen on my iPad and see my  2 lb 15 oz baby girl grip Adams finger. I'm struck with guilt that I can't see her in person or touch her. I feel disconnected., like a piece of me was dismembered. I'm told I have to wait until I can be wheeled down to the NICU to see my daughter. Adam comes back to my room and gives me a vague update on Scotlynn. Just then a doctor walks in and stands at the doorway. He shares his concerns with my elevated heart rate and attempts to explain what happened to me. It's all fuzzy and I can't comprehend anything but the words "you shouldn't have more children". -What?why? I don't understand- 
A nurse comes in and puts antibiotics in my IV line. (Zpac) Christina shows up and adam leaves to take a shower at his parents house. I keep looking over my shoulder to see my heart rate increasing . 120-125-140... I tell Christina to turn on the portable fan in front of me. I feel hot and start to feel zombie like again. It's happening again! It's hard to breathe, I focus on the fan as sweat drips from my forehead. I get clammy and turn ghostly white. Christina calls adam to come back and she runs to get a doctor. Wendy walks in and I'm in a state that inhibits me to speak. I just keep staring at the fan feeling my head get heavy. I close my eyes as my head is slumped down and my hair is now wet from sweat. Adam comes in looks at my chest and slightly sees hives. The ICU doctor is at my other side and is yelling in my face to respond. i finally am able to mumble something. they are discussing the cause to my reaction. Adam suggests that I'm having an allergic reaction to the zpac.  The doctor agrees and gives me Benadryl. My eyes close. I wake to Christina at my side, knitting. Adam is behind the curtain sleeping. She explains a little what happened. She stays for awhile then leaves -so grateful for my best friend who is pregnant to be so loving-

11/29/12:
Today, I notice the large bruises on my wrists. The IV on my left wrist is painful and ask if it can be removed
Being Poked and  peroded is a regular occurrence at this point . Friends and family come to visit me in the ICU. I see my sister and brother and my niece kylee. It's so nice seeing them. My sister and niece , brush and braid my hair. I can't even lift my arms. -I feel loved and grateful I have my family. Finally, I'm able to be wheeled down to see my baby with a heart monitor strapped to my wheelchair. She's so tiny and beautiful. I'm so in love! I want to hold her and kiss her like a mother should, but can't . The incubator and IVs overwhelm me. Why? Why is this happening? what is her future? What's mine going to be like? I get discharged from the hospital on December 1st and leave with no baby, no joy, but a heavy load of guilt, confusion, and an external defibrillator strapped to my body to possibly shock me if my heart rate gets too high.-terrified of the future for me ,my baby, and my strong husband .

The next 46 days are a nightmare with driving 40 mins everyday to the NICU and not feeling at all at 100%. getting the up and down daily updates about my daughter and me being strapped with an external defibrillator for a month bc my EF was below 20% at the time of delivery was a constant struggle. Being told to take care of yourself shouldn't be the case when you have a helpless preemie. She needs me-but I feel like I have nothing to give-

At this point (7months later) my EF is about back up to 45-50% And  my baby girl is perfect! she'll obviously have developmental  delays,but she'll catch up. With all the joys of being a mother, it's been difficult with the thought of being advised to NOT give Scotlynn a biological sibling. It's been a struggle to be told you should not have more. On one hand , I understand the concern and I DO NOT want to get that close to dying again. But, on the other hand, I feel that it's a doable thing to have another pregnancy down the road. With so much research and the proper monitoring for PPCM, I want to believe that I'd be okay. does any other PPCM moms feel this way? I feel alone in these thoughts bc everyone around me thinks I'm crazy for even wanting to carry another child. Dr. Fett states that I pretty much have a 20%chance of relapsing in a subsequent pregnancy. I'm trying to search for an answer from god. -Am i being too selfish? I'm grateful for a healthy daughter and blessed with getting my heart healthy again. But, i can't ignore my yearning and desire to give her a sibling and feel a baby flip,kick, and hiccup inside my belly again. only god knows our plans. I pray for clarity and grace for not only me, but for all the PPCM survivors out there! it's comforting to know , I'm not alone . God bless!

By Date Added: 7/19/2013 Date Last Updated: 7/19/2013

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