The best (and worst) week of my life
I have wanted to be a mother since my earliest of memories. Lots of young girls dream about their wedding day and marriage. All I used to dream about was being a mom. I couldn't wait until it was my turn.
When I was 29 I got pregnant for the first time. It wasn't planned but we were so excited. Unfortunately in the 6th month of my pregnancy we lost our baby and I went through what was the MOST difficult time in my life.
We found out if we wanted to have a healthy baby, we needed to do IVF. And so began a year and a half of that process, filled with tons of emotional ups and downs, and I finally found out I was expecting a healthy miracle baby girl due February 21st, 2017. I felt like our time had finally come.
Other than severe morning sickness, we had pretty smooth sailing up until around 6 months of pregnancy. I remember it so vividly. It all started one day when I was getting a pedicure and I looked down at my feet, only to realize they were abnormally swollen. They didn't look like they were mine. I remember thinking to myself, that's strange. I thought this only happened in month 8 of pregnancy, towards the very end.
The next day I told my doctor and she said I must had eaten something salty and that mixed with the heat (it was 90 degrees that week), I was experiencing some edema. Nothing to worry about at all she said.
The next few weeks went by and the swelling didn't go away. On top of that, around month 7-7 and a half I really started to slow down. Walking places, even up a small set of stairs, was starting to become an extremely difficult task. Even walking on a flat surface was hard. I didnt want to move, I didn't want to go anywhere at all. I kept thinking about a lof of my friends who were pregnant and getting around just fine, and that's when I started to realize something might not be right. I went to yoga class with a pregnant friend and could barely make it through the class. She was absolutely fine.My first thought was that since I hadn't been the healthiest (I ate a lot of junkfood and didn't work out during my pregnancy), was that I was just out of shape and lazy. Or, since I'm so small, maybe my body couldnt handle the weight. Even going to meetings at work became hard. I found myself trying to catch my breath when talking in meetings and presentations. Even getting from the car to my desk was a mission.
As I got bigger things got much worse, and towards the very end of my pregnancy I was unable to walk at all. My feet were in so much pain and they started to look like elephant feet. I kept saying to my doctor at every visit - can you please look at my feet? They hurt. They're not ok. I'm not ok. What is going on here? I was complaining to her constantly and was convinced that I was the most annoying patient she ever had. Every other day It was something else. I was out of breath, I was abnormally tired, I hurt. I knew something was wrong but my doctor kept telling me I was ok, so I trusted her. Deep down I knew I wasn't. She kept saying "oh honey, that's just pregnancy!" and made light of everything I was telling her. 3 weeks before I was due to give birth, she started to listen.
That week things had gotten really bad. I started to feel what I thought were contractions and was in pain all over. She thought maybe I had developed late onset gestational diabetes, so she told me that after the weekend, I should come in that monday and get my blood sugar tested. I had my baby shower Sunday, January 29th. Monday, January 30th, I had my husband take me to get the blood test. Usually I'd go to blood tests on my own, but I couldn't drive or walk, and didn't want to be alone. I was supposed to have a meeting at the office that morning, so I figured I'd pop in to get the test and go straight there. Little did I know, we wouldn't be going anywhere that day.
When I got to the doctors office the nurse took my blood pressure and a urine sample, which is protocol when you're pregnant. We didnt even have to get the blood test done - right away, she noticed my blood pressure was high and that i had protein in my urine. Those are the two main signs of the pregnancy disease Preeclampsia, so she told me I had to rush to cedars to get monitored. She told me there was a 75% chance that they were going to have to induce me that day. What! The baby's furniture hadn't even been delivered yet, and I didn't have my hospital bag packed.
I got to the hospital and hooked up to monitors right away. They monitored me for 4 hours, and within that 4 hours, wanted to see if I had another high blood pressure reading. If I did, then I definitely had preeclampsia and they were going to have to take the baby out right away. Turns out, I didn't end up having another high blood pressure, but I wasn't leaving. I told my doctor I wouldn't go home. I felt sick and I couldn't imagine going one more day (let alone 3 weeks) living like this. Every piece of me hurt. She spoke to my high risk doctor and they decided that it was probably best to induce me.
I got induced at 7PM on Monday, January 30th. And the labor wasnt easy. I just hurt EVERYWHERE. It was hard for me to hold my breath during contractions when they told me to, and I just felt so sick inside. My gut, as it had been for a while, was telling me something was not right. But what did I know, really? I had never been through this. And so I figured "I Guess that's just what labor Is". Its not supposed to be fun.
After 17 brutal, very difficult hours of labor, On January 31st at 1:29PM I gave birth to a beautiful 8lb5oz baby girl named Kate Kasher. My husband and I were in heaven. Naturally, it was the most incredible moment of our lives. Our little miracle that we had been waiting for what seemed like forever for was finally here. The nightmare was behind us and we were so relieved.
A few hours after she was born and I had been moved to my postpartum room. We had some family and friends come by the hospital. During that time one of the nurses came in and told me that she thought Kate was breathing a bit too fast and thought they should take her up to the NICU. Immediately my husband threw up, and I started having a panic attack. WHAT? You have got to be kidding me. This can't be real.
The nurses took her to the NICU and they soon told us that Kate hand some extra fluid in her lungs and had to be hooked up to oxygen. The doctors told me she was likely going to be fine and not to worry too much. It would just take a few days to get her breathing normally, this is something they've seen before and it's often reversed itself.
I barely slept that night. When I woke up the next day, I had started to feel a bit lightheaded and thought maybe it was because I was panicking and also forgot to take my antidepressant the day before. I usually get lightheaded and a bit nauseous if I miss a dose, so I kept telling myself that was the problem. I took my medicine and shortly after my nurse took me to go see Kate in the NICU. As he was wheeling me to the elevator, the entire room started spinnig and I started seeing spots. I told him he needed to turn back around and bring me to my bed, and that I wasn't feeling ok.
My OBGYN called my room, asked me about my symptoms and after I described them to her, she told me she thought it was possible that I had a blood clot on my lungs. She ordered a CT scan for me and they sent me downstairs to get it. The CT scan didn't show a clot, rather - it showed some excess fluid surrounding my heart. My doctor called me back and she told me this and said they were going to give me some medicine that would help me rid my system of the fluid and that I should start to feel better.
At 8PM that night, I got the medicine and started to feel worse - not better. I had been moved back into my postpartum room and was getting ready to go to bed when I really started to have diffculty breathing. I asked the nurse on call if I could get some oxygen because I had tightness in my chest. They hooked me up to oxygen under my nose and told me that I was probably just having a panic attack because of everything going on with the baby. I begged the nurse to stay close to me that night and said I really didn't feel well and that I was scared. She sat by my side until I fell asleep.
Around 5AM I was woken up by a team of doctors, about 6 - standing around my bed. Including my OBGYN. They told me my oxygen levels had dropped severely overnight and that they had to take me to the other part of the hospital to do some testing.My OB said she thought maybe I had Pneumonia or a rare heart condition due to pregnancy. But she reassured me she didn't think that it was the heart condition and that she wanted to do an echodardiogram to be sure.
They wheeled me to get an echogardiogram and as I was sitting there with the same 6 doctors around me, breathing got harder and harder and before I knew it I was gasping for air. I made a notion to the nurse to give me an oxygen mask. Within seconds I was moved to a gurney, and about 10 more people rushed in as I was hooked up to a huge mask and taken to the ICU. I remember the entire thing so vividly. When I got to the ICU, I was hooked up to an even BIGGER mask and had about 5 monitors/screens behind me. A nurse came in and put a catheter in me, and started draining fluid from my body. Within about 30 minutes, 5 liters of fluid had been removed from me and I started breathing normally again. To put things into perspective, they drained about 25-40 pounds of fluid from my body. I gained 80 pounds during my entire pregnancy. Almost half of it was fluid.
The entire cardiac team at cedars then showed up in my room and I knew it wasn't good. Was I dying? What was happening? When can I see Kate? All I wanted was to be ok and be with my baby. I remember having so many moments where I thought my life was over and that I'd never have that chance.
The doctors introduced themselves and told me that I had just experienced heart failure. Just like that. They said my lungs had filled up with so much fluid that my body retained during my pregnancy, and that my heart had to pump extra hard to keep me alive. Because of that, my heart became weak. They said it's a condition called Peri Partum Cardiomyopathy and that less than 1000 women a year get it. They told me I was very lucky to be at Cedars and that if I had a home birth, or if I were at a different hospital, I may not have made it as a lot women who have this condition do not. I could not believe my ears and that this was actually my life. I looked at my mother and my husband who were in the room with us and started hysterically crying. I just kept thinking about them, about my sister, about Kate and what would happen to them if I died. It was the most emotionally exhausting moment of my life and all I wanted to know was that I was going to be ok.
The doctors told me that they couldn't really give me an answer, and that we had to take it minute by minute and see how I was recovering. I was so scared. They kept looking at my ankles to make sure the swelling had gone down and looking behind my neck which would also determine whether my swelling was going down. They also told me (in the middle of all of this), that I could never have a baby again. They said Jaime, you really need to hear us when we say this, as it is very serious and you cannot take it lightly. You CANNOT get pregnant again. It will kill you.
Imagine having just had a baby. And all of the hormones and emotions going through your body and mind. And then almost dying, and then being hit with this news. Honestly...I didn't even care about having another baby at that point. I just wanted them to tell me I was going to live.
I stayed in the ICU for 2 days and then was moved to the cardiac ICU floor. Everyone there was about 60 years old or older. What the hell was I doing here, I kept thinking to myself. I still had not seen Kate. Jake, my husband, kept going back and forth from my room to hers which was on the opposite side of the hospital and facetiming me. She was hooked up to all of these machines and so was I, and we could only see eachother through a phone screen. All I wanted was to hold her and tell her that we were going to be ok. I kept thinking about how I was living a real life nightmare and that my daughters birth was so not what I ever imagined it would be. We prepare for this day, plan for this day, for so long - and in the end it was nothing we could have prepared ourselves for. I kept thinking - its not fair, everyone gets to go home with their baby and enjoy this happy time in their life, and here I was fighting for mine.
Over the next 5 days I was put on 4 heart medications and started to show improvement. Kate got released and sent home on February 5th - she was luckily 100% ok and recovered. The day before my birthday, February 7th, my doctors all decided that I was well enough to go home too. That was the best news I had ever gotten, because for a few days I thought I was never leaving that hospital and was never going to see my daughter again.
I can't even put into words or describe the feeling I had when I walked into my front door. I was home - with my husband, my baby, my family, my dog. The people I never thought I'd be with again. It was the best day ever.
I had been sent home with a laundry list of instructions that I had to follow for my recovery. Most importantly, I was told I could only have a liter of fluid a day (including water, coffee, soup, etc) and that I had to be extremely careful not to intake too much. I had to watch my salt intake as well and have less than 1000MG a day. For the first month home, I was pretty much scared to eat or drink anything because I thought it would kill me. I was honestly too scared to do anything. I had major, major PTSD. I couldn't sleep, I thought every night when I went to bed that I would stop breathing in the middle of the night because of what had happened to me in the hospital. Anytime I felt tightness in my chest, I thought I was dying. This went on for a few months, and I'd say around the 3rd month life started to feel a bit more normal. Still, nowhere near the normal I knew. I was 32 years old and I Felt like I was 75. I was a new, young mom - and I could barely hold my daughter or even walk up the steps with her, let alone walk up the steps at all without having to catch my breath. I just wanted to get back to my normal self and be able to be the mother I always dreamed of being.
I also had to attend cardiac rehab for 3 times a week for 3 months. There, I would be hooked up to a heart monitor while walking on a treadmill or doing some sort of light excersize. I wasnt allowed to work out or do any activity anywhere besides that. That was another place where I was by far the youngest person there and I just couldn't comprehend why I was there at all. I learned so much about my health and about heart health from those classes and it really helped me in my recovery.
I should also add that after all of this happened, I found out that both of my feet were broken due to all of the swelling in them. As I mentioned earlier, before I gave birth my feet hurt so much that I could barely walk. The doctors wouldnt do any x rays or MRI's because I was pregnant, and then after the heart failure/hospital stay, the pain went away for a minute since I was off my feet for so long. As soon as I got out, though - the pain came back and I went to get that MRI on them. It showed fractures all along both sides of my feet as well as across my toes. I had to be in a boot for 2 months.
Fast forward 6 months where I'm at a checkup with one of my cardiologists. Her name is Michele Hamilton and she specializes in PPCM. After getting an echodardiogram, an MRI, and a bunch of tests done - she gave me the news that my heart was FULLY RECOVERED. My ejection fraction, which was 29% when I was in the ICU, was back to 60%!!! 60% is the Ejection Fraction of a NORMAL heart. The Ejection Fraction is a measurement of the percentage of blood leaving your heart each time it contracts. I could not believe my ears, yet again - this was a true miracle. How did I get so lucky? I know for sure I have angels watching over me and felt like the luckiest girl in the entire world to be recieving this news. Dr. Hamilton was the one who told me when I was in the hospital that she really couldn't tell me if i was going to be ok or make a full recovery. Every single day I thank my lucky stars and my guardian angels. I felt like now I could move on with my life and really work at getting back to the old Jaime, which, to be honest - I haven't felt like in 2 years. It has been a wild ride.
My daughter is now 7 months and I am really starting to be able to take care of her the way I always wanted to. I can hold her for long periods of time, walk up the steps with her, put her carseat in the car...do all of the things that I never thought I'd be able to do again. It's still a bit challenging for me to be with her on my own at times without an extra pair of hands but Im getting better at it every day. As long as I keep up the work on my end and stay healthy, it's only going to get better and easier. I am still on my heart medications as my doctors want me to stay on them until the end of the year, just to be safe.
I am one of the lucky ones. I know it and I thank god every single day for that. If there is anything I want to do in my life moving forward, it's to educate people on this condition and raise awareness because It is ridiculous how nobody knows about PPCM. If women were able to read about it leading up to their pregnancy in books like What To Expect, or even in pamphlets at the doctors office - it could save their lives. I have seen and was given a million pamphlets at the doctor during my pregnancy. WHY on earth was this not one of them? I would have probably diagnosed myself with PPCM or maybe would have asked my doctor about it had I known about it. I also want to help women who are going through it and let them know that they are going to be ok. When I was diagnosed and so scared, I kept searching for things online that would make me feel better. I wanted to read peoples stories, I wanted people to relate to because I felt like I couldn't relate to anyone at all. I wanted to read success stories and know that things were going to be ok.
My biggest message for pregnant women is that you need to be your own doctor. If something is not right, if you don't feel like yourself and if your gut is telling you something is wrong....you NEED to trust it. We all look to our doctors because they are the ones who should know these things and "they" are the educated and smart ones. NO. YOU are. You know it, and I KNEW it. I only wish I spoke up more and did something about it when I could have.
I feel like I got a second chance at life. I look at my daughter every day and think about how she is nothing short of a miracle. She was by no means easy for me to have and I consider her a true gift. I have accepted the fact that I can't ever have a baby myself again. We definitely want to have more kids, so when we are ready, will have to look at adoption or if we're lucky - a surrogate. I honestly couldn't imagine being pregnant again, it was so hard for me. I would never want to risk my life for it. I would not do that to my husband, I would not do that to Kate. This experience has not only made me a stronger woman, it has made me realize what is most important in life and also forced me to cut out anything negative that doesn't make me feel good. Life is TOO SHORT to be stressed, to surround yourself with anything but happiness if you can help it. I believe in the end that this happened for a reason and that was to teach me these lessons. If you are going through PPCM, just know that you are going to be ok and try and take away the positive from this experience. It makes it a lot easier. We don't know why it happens to us, but if it does, lets take the good away from it and pass along our knowledge and experience to others that are suffering. And of course, stay strong and trust in god. He's got your back.