Cholestasis The Diagnosis that changed it all at 33 weeks

This is by far the question we have been asked the most since having our little Penelope a month early. “What happened, if you don’t mind me asking?” At first, it was hard for me to talk about it without tearing up instantly. Everything happened so quickly. I was so scared for our little one for weeks. It took everything I had to stay calm through those weeks and during our hospital stay. Little did we know then that Cholestasis the diagnosis that changed it all at 33 weeks.

With all the questions and concerns our readers expressed. I figured writing about our diagnosis and c-section experience was the best option for sharing. Reliving it along with adapting to my “new mom” life while my hormones were all over the place has been a trying experience. Sometimes it just makes me want to cry thinking about it still. Let’s be real . . . most of society just says “oh it was just a c-section”, when in fact it is a major surgery that can have many different outcomes. The healing process is also long and painful.

Let’s start at the beginning.  My pregnancy wasn’t the easiest for me for the first half. The first 18 weeks I had nausea all day, every day!  I could not get rid of the nausea with medicine or any kind of food. Outside of that misery, I had a healthy and uneventful pregnancy up until 33 weeks. One day I felt that something was off. Brent was on a 48 hr shift at the firehouse. There were two nights in a row when I was experiencing extreme itching all over my body.  It started around 10pm and lasted until 5am . The itching was especially bad on my palms and feet. The first night it happened I was up all night and tried all kinds of remedies. Since it was the coldest and driest time of year here and I already had some dry itchy skin, I thought my skin must be really, really  dry. But when the same thing happened the next night and was even worse, I new something wasn’t right.

Luckily we already had a doctor’s visit scheduled for the very next day and I could ask and get some answers. Little did we know that I would be diagnosed with Cholestasis. At this point, let me say that I always encourage others to do their own research to learn about medical diagnosis. Anything shared in this blog is based solely from my experience and not intended as any professional literature or advice. I will not speak on my diagnosis as if I am a medical professional because I am not. Here is the link to the Mayo Clinic if you want to read more on this diagnosis from a professionally trusted source.

I had never heard of this diagnosis before. One of the major symptoms is extreme itchiness all over your body and specifically on your feet and palms. My doctor knew exactly what it was when I told her the symptom. She did the bloodwork to confirm the diagnosis wIthin 2 days and immediately had me on medicine to help. 

The issue with this diagnosis is that your liver isn’t excreting bile acids from your body. This creates a toxic environment in your body as the bile acids build up. The max number according to the blood work scale should have been a 10 bile acids (at least those were the parameters I saw in my chart). My bile acids were very high at 60. I was prescribed a medicine to help pull the bile acids out of my body and an antihistamine to curb the itching. After a week of being on the bile acid medicine they took blood again and found my numbers had essentially doubled to 120. This was not a good sign and my doctor had me increase my medicine dosage. 

The potential long term outcome was, by far, the scariest thing to learn about this diagnosis. The bile acids building up in the body creates a toxic environment for babies in utero. The risk was the potential for a stillborn baby. The typical protocol for this diagnosis is to try and get the baby to stay in the womb to 36 weeks and then deliver if possible. They were able to keep Penelope and myself safe until the 36 week mark. The major concern in those three weeks was that she could be fine one day and not fine the next day. The baby’s condition in this environment could change quickly without warning. Those were by far the scariest 3 weeks of my life. All I wanted each day was to feel her kick all day everyday. I just wanted to know she was ok in between the twice a week doctor visits we had. 

The last doctor’s visit before the hospital was an ultrasound with a high risk, maternal fetal doctor. The appointment was on a Monday morning at 7 am. This was the only appointment Brent wasn’t able to go to because he was coming off shift that morning at 8 am. Of course it had to be this visit we got some news we weren’t expecting. The doctor saw a high amount of matter floating in the amniotic fluid and that was very concerning to him. He calmly said to me “go home, pack your bags and go to the hospital asap.” I was on my way home and on the phone with Brent since he was now off shift.  Part of me was excited that we would finally get to meet Penelope. The other side of me was so nervous because she’s going to be 4 weeks early. I was nervous if my diagnosis had affected her health at all. I felt so guilty that it was my body that could cause her harm. At this point I just wanted to see her born and healthy.

Brent and I made it home about the same time that morning. Luckily we already had our go bags ready so we packed them in the car and headed to the birth facility. We were admitted around 11 am that same day. 

They started the induction process around 1:30 pm. After about 6 hrs, I was feeling some contractions and they continued to get more intense as the next 6 hrs went on. 9 hours into the induction process, the contractions started to really get uncomfortable and we saw that  Penelope’s heart rate was dipping with each contraction. The medical staff were not happy with this and watched us both very closely.  The next three hours were spent adjusting my position to see if her heart rate would stop taking dips with the contractions. By 12 hrs into the process, the contractions were even stronger and her heart rate continued to show those dips. It was 1:30 am Tuesday morning when the doctor and nurses came in to re-evaluate and advise us on how we moved forward safely for both of us. 

My goal was to have a natural birth and the team was doing everything they could to honor my wishes. But, at this point, that was no longer the best option for Penelope’s health. It was at 1:30 am that they brought up the option of a c-section and the doctor said this is her best and safest option with what her heart is doing. A c-section was the last thing I wanted to happen but I knew Penelope’s safety was our top priority. Brent and I said let’s do the c-section and give her the safest chance we can at bringing her into this world. Within minutes I was being wheeled out of my hospital room and down to the OR. I was terrified for Penelope and myself to be safe and praying over the team and the surgery and our outcomes to be good. I knew if I panicked or freaked out when they wheeled us into the OR, it could complicate things.

The first time I got to see and touch Penelope

We still had no idea the gender of Penelope at this point. She finally came out and cried and the doctor announced, “It’s a Girl!”, and the entire OR team cheered with excitement. Very few people in that room knew it was a girl and they were all excited for a surprise gender birth. Brent quickly went to her and didn’t leave her side. When she was ready, he brought her over to me so I could meet her and it was the best moment of my life. She was here safe and healthy. I could finally breathe and relax.

With this experience being nothing like we had planned. The one positive thing I can say is that we picked an incredible team and facility for our child’s birth. Our doctors, midwives, and nurses were all so knowledgeable and kind throughout the entire pregnancy, hospital stay, and birth. They really did make the experience the best it could be considering the huge change in plans. We are so grateful and blessed for the team we chose. If there is one bit of advice I can give it is this…Pick a team that you trust 100% and trust their medical professional advice. Know that you have a team that has you and the baby’s health as a top priority. 

The entire process was extremely scary for me. I’m feeling grateful and blessed to be home healing and healthy with our little Penelope. She may be tiny but she is gaining weight and doing great.  Our pediatricians are helping us navigate the preemie, newborn life right now. We can’t wait to see her grow and watch her personality develop. She is our absolute world and we love her more than anything. Cholestasis the diagnosis that changed it all at 33 weeks…but it didn’t change how much we love our little Penelope!

I am always interested in hearing your stories and what your experiences were. Know that you aren’t alone in this world and that every pregnancy and childbirth can be so different. Being kind to one another and supportive of our experiences is the most important thing we can do for each other. It’s not a competition as to how your baby came into the world. What matters is that the baby and momma are safe and healthy! Let’s normalize being honest about our experiences and being so incredibly proud that our bodies just created life! Because, girl, you made your own people and that’s pretty freaking amazing!

Leave a comment below and head over to my social channels to watch little Miss Penelope grow! Cheers to the future and all the fun it will bring to our little family! If you want to get to know us a little more go read our About Us blog!

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