Wednesday, May 28, 2014

Our Story. Part II.

This second part of the story has been hard for me to come to terms with in writing. I've been setting time aside to write this but always come up with some other excuse not to do it. You have to be in the right kind of emotional place to write something like this. I want to be open and share all the details. Details that I know many of you have wanted to know but have felt uncomfortable to ask. I appreciate your sensitivity. I very rarely have to go too in depth these days. It seems as if we've crossed some sort of line that in people's minds, it's been long enough since we lost her that it's not a regular topic to be discussed anymore. Which, in a way, is nice to step away from that overwhelming emotional place, but, I also feel like she's been a little forgotten, which I'm sure is not the case. It's just such an awkward, tender place. Who really knows the appropriate way to handle such things? Not me. If someone close to me lost their child tomorrow I truly wouldn't have any words for them. I'd just embrace them and cry with them.

With that being said, this is the part of the story where things really start to go downhill.

January 30th, 9:30 am. Andy and I go in for our 35 week check-up. We go through the motions of the appointment. Our OB, Dr. Ryan Jones, sits there for 5 minutes and tells us everything is looking great and that we should be good to go if we didn't have any other questions. The thought creeps into my mind that I should mention to him that I've been extremely itchy all over my body. I was hesitant to ask because I've been told that your skin can become very itchy while pregnant. But this seemed different. My face, arms, legs, feet and hands were constantly itching. I felt like I was going crazy but I didn't want to bother Dr. Jones witch such a silly question. I had already had so many scares or concerns that I was made to feel silly for. I had made up my mind that I was not going to be "that pregnant lady" that called the doctor's office 20 times a day with questions or concerns and that I was going to be the "chill first time pregnant lady." So, at the last second as Dr. Jones was about to walk out the door I asked him if being itchy all over my body was normal. He asked me if I was specifically itchy on my feet and the palms of my hands. I said, "YES!" He then told me I probably had bile acid build up in my blood and that I needed to get a blood test done. That was it. He was out the door without any real explanation as to what bile acids were or how they got in my blood or even how serious this actually was or why it was serious.

Two days later I have my first baby shower with family and family friends. I was beyond excited that it was actually my turn for one of these things. So many wonderful women showed up to share their love and support for my little family. My mom, mother-in-law and a few other family members did so much to make Indira and I feel special. I went home with a ton of stuff, excited to show Andy and get it all organized.

The next day, after church, Andy and I finally head up to American Fork Canyon to take a few "maternity shots" that I had been begging Andy to do for me for a while. It was so snowy and beautiful and Andy took the most beautiful photos. I was so happy to be outside in the snow with he and little Indi documenting this amazing time for us. The pictures turned out better than I could've hoped. It was so fun to have Andy take the photos and see how he sees me through the lens. At this point, I remember having the blood test in the back of my mind but I felt that it would be ok.

Andy and my dad gave me a blessing that night.

Later, after everything, Andy would admit that when he sat down from that blessing, he had an overwhelming feeling that my pregnancy was not going to end well...

Monday morning rolls around and my family and I have had enough time to research "bile acids" and what it could mean for myself and Indira and it's not very good stuff. Dr. Jones told me he'd be calling me to give me the results so I wait and I wait all that morning. Around 10:30am I finally call and leave a message for the nurse to call me back with the results. Two hours later I call again with another message. a few hours later the nurse finally calls me back and this is what she says, "Hi Neena, I'm calling in regards to your message with your blood test results. It looks like you have cholestasis. Your blood levels are at a 47 and normal levels are anything below a 20. Dr. Jones is hoping to get two more weeks out of ya." My heart begins to pound. Me: "What do you mean two more weeks out of me?" Nurse: "Well, with cholestasis, the risk of a stillbirth goes up once you turn 37 weeks. So, Dr. Jones wants your baby's lungs to mature a little more and then we'll see how you're doing at your next appointment. He is also going to call in a medication for you that should help with the itching." (My next appointment was scheduled for two days before I became 37 weeks pregnant. I was 35 weeks and two days at this point. They weren't planning on doing any monitoring or any other explaining until I was two days away from being very high risk at losing my baby.) I started to cry and freak a little. The thought that in two weeks time from then I could be having my baby early freaked me out a little. I wasn't mentally and emotionally prepared for that. Then the conversation ended because I was dumbfounded and didn't know what else to say or do. She didn't give me any explanation as to what was really going on. She just told me I had Intrahepatic Cholestasis of Pregnancy and that they'd see me in two weeks. 20 minutes later she calls me back and tells me it's very important for me to monitor my baby's movement 10 movements every two hours. Indira was such an active baby that I didn't have to count out 10 specific movements every two hours. So I felt confident in that aspect.

(To explain what cholestasis is, basically, it only happens when pregnant. My liver started to malfunction and my bile wasn't being processed properly so it was starting to back up into my blood stream, which for some reason is very dangerous for a baby. When the bile backs up into your blood the main symptom is itchiness all over your body and especially your feet and palms of your hands. There's no cure for it. There's no way to get your liver to start functioning properly. It just goes back to normal after birth. The only thing they can do for you is put you on a medication that is supposed to lessen the itchiness.)

I went home nervous and excited all at the same time. The nurse seemed so nonchalant about the whole thing, I thought for sure that if it was as serious as I thought it was, that they'd be bringing me in to review everything with me and monitor me. I call Andy and tell him the results. He's calm but I can tell he's concerned. He asks me if I feel ok with what the nurse said and I honestly didn't have an answer for him. So, I call my dad. He's had so many medical issues that he always seems to have the right answer as to what I should do. He says he's been doing a lot of research and has found that anyone over a 20 in a blood test that tests positive for cholestasis usually goes in for immediate monitoring and on occasion is sent straight to labor and delivery with a result similar to mine. I was confused that my doctor hadn't recommended anything besides the meds.

The next day I call at exactly 8am to leave a message to demand a non stress test because that seems to be standard procedure from what we'd been researching on the internet. About an hour later I get a call from the nurse again. This is what she says, Nurse: "So, I told Dr. Jones about you wanting to have a non-stress test and he said that if that's something you want to do we can defnitely get you scheduled for it." Me: "Yes, it is absolutely something that I want. I've been researching on the internet and everything states that it's standard procedure to go in for one immediately." Nurse: "Oooooh, the internet... You never know what you're going to get on there." Me: "Well, I wasn't given any information on what was really going on with me so we had to go look it up." Nurse: "Ok, so when would you like to come in?" Me: "Immediately." So she schedules me for that afternoon. Andy wasn't able to come so my Dad made sure to come with me.

When we show up to the office, I'm feeling pretty nervous because Indira had been very slow in her movements for the first time ever. I hadn't felt very much in the last hour or so which was very uncommon for her. As we sit in the waiting room, I can see the door to the room where they do the non-stress tests. I can hear a test being administered. The heart rate of the baby sounds so steady and loud from where I sit. I was hoping mine would sound the same. Sure enough, it did. Indi's heart started blaring through the monitor the instant it was placed on my belly. The nurse left my dad and I in the room and said that it needed to monitor her heart rate for about 20 minutes. About five minutes after she left the room, we heard Indi's heart rate drop dramatically and then sky rocket to way higher than what was average. My dad and I looked at each other with concern. It happened a few more times before the nurse came back in. She took the strips that printed out of the monitor to Dr. Jones to get his opinions. She said that those dramatic drops and then spikes were called decelerations and normally weren't anything to cause a panic but that it must be reviewed by the doctor.

She returned a few minutes later and explained that we needed to go next door the the hospital to get another test on Indira called a biophysical profile. This kind of test monitored a few more things other than just her heart rate.

My dad and I walked over to the hospital and were helped into a room with an ultrasound. The tech was nice enough and explained that a biophysical profile monitored the baby in four categories. Each category was scored with two points. If the baby doesn't pass in one category, it wouldn't get any points at all in that category. So a high score would be 8/8. The four categories monitor heart rate, muscle tone, movement, and breathing. It's a timed test and if the tech can't get a score for one of the categories in 30 minutes the baby receives a 0 in that category. He said some bpp's are done in five minutes because he's able to see all four categories in the baby immediately without poking, proding, or waiting for the baby. Other tests take a full 30 minutes and he only sees one or two of the categories then the baby fails the test. The mother is then sent straight to labor and delivery.

If we're gonna get down to the nitty gritty about how Indira's bpp went, technically she received a 4/8 but the tech passed her at a 6/8 with a few minutes to spare in the 30 minutes. In his words, "did you feel that?" Me: "Uh, i think so." (I barely felt anything. I couldn't completely tell if it was Indi moving or him pushing on my abdomen.) Tech: "Ok, I'm gonna call it good. So, I'm gonna give her a 6/8 (she failed on one aspect completely) and go give your OB a call. To be honest, some doctors will send you straight to labor and delivery with these results and some will send you home." And with that he left the room. I look at my dad with shock in my eyes at the thought in my head that he could walk back in that door and tell me that they're sending me up two floors to get induced and this little babe could be in my arms by tonight... But, he doesn't do that. He walks back in and says Dr. Jones felt good to send me home.

As my dad drives me home I couldn't shake the thought racing through my mind that if Indira is living in a poisoned environment inside of me, that she's better off on the outside of me than on the inside. I felt so powerfully that she needed to come out. A feeling that cannot be denied as motherly instinct.

The next day, Wednesday, February 5th, the worst day of my life...


  1. I feel sick you went through this. I'm so sorry. Thank you for raising awareness about cholestasis; I've never even heard of it. Well done, for writing such hard things

  2. Thanks for writing about this neena, truly. I can't imagine how hard it must be. You are so brave. I had never heard of cholestasis either.

  3. You can help women all over the world to switch doctors if they feel like they aren't being heard. I switched doctors at 28 weeks with my last baby because I felt I needed to. I was SO glad I did.

    I'm sorry for your loss, her memory will still bless your family and countless lives forever. Prayers and comfort being sent your way.

  4. Reading your blog I am so over whelmed with emotion, I myself suffered from the loss of a still born at 37 weeks October 4, 2013. At times it feels as if no one else in the world can understand what I am going through, as time passes it does get easier- as much as I hate to say that. We keep his memory alive everyday as I'm sure you do with your daughter. His nursery is still set up as if he's going to magically appear in his perfectly done crib, his clothes still hang in his closet, and his bottles still sit in our cabinets waiting to be used. I tend to put on a brave face and keep my emotions on the back burner but after reading your story I relive every moment of what was the best and worst day of my life. I promise there is a light at the end of the tunnel. If you ever need a ear to vent to or just someone who actually has been through what you have please feel free to contact me.

  5. Neena, I'm so sorry. I came across your blog and tears have been rolling down my cheeks as I read. My heart aches for you.
    Lindsey Flynn

  6. Oh Neena, I'm so sorry. I've had cholestasis with every pregnancy and it is such a scary thing. I'm so happy you are documenting this and creating more awareness. Too many people (and Dr's) dismiss the itchiness and downplay the seriousness of it. You are such a strong woman, thank you for taking the time to share your trials.