The worst best day

Yesterday was the one-year anniversary of the worst best day of my life.

On January 7, 2011, my son Arlo was conceived. I didn't know it until about a month later, and I didn't plan on getting pregnant when I did. But I was elated when I found out. (Okay, after the shock wore off, I was elated. Completely overjoyed and utterly scared. Still am. :) )

This day, 1/7/11, had the potential to just be one of the best days of my life, nothing more. Except for what followed.

By the end of February, I had been diagnosed with severe hyperemesis ("hi-per-EM-uh-sis"), a disease of pregnancy which would persist until my placenta was delivered on September 24th of that year.

My hyperemesis was one of the worst cases ever. It only affects 0.5-2% of women anyway, and of those cases, it usually subsides by the 18th-20th week of pregnancy, or about halfway to full term. Few cases go to 25 weeks. Even fewer to 30. Full-term (40 week) cases are extremely rare. But such was mine. The severity of my disease was worse than any doctor in my OB practice had ever seen or heard of, and worse than any that their regional and national colleagues had also seen or heard of. (They asked around.)

[Listen: If you have a weak stomach, stop reading here. Seriously.]

Hyperemesis is basically extreme morning sickness. But it's so much more, and so much worse. My experience was horrible. On the very best days (which were rare), I vomited 10-20 times; on the worst days (which were more frequent), I vomited 70-80 times; and on the average day (of which there were so, so many), I vomited 20-50 times. (I estimate that I threw up around 5,000 times during my pregnancy.) From March 2nd to September 25th, I was unable to eat or drink anything. The smallest sip of water, the tiniest nugget of ice, the most miniscule bite of a cracker, would launch me into a vomiting fit which lasted an hour. I threw up blood almost every day. I threw up bile. I threw up my stomach lining. I threw up nothing, having painful dry heaves for hours on end. My neck hurt constantly from bending over a toilet or trash can for hours, days, weeks, months on end. My stomach was always in pain from the retching. The constant nausea was dizzying, gross, and overwhelming.

Within 5 weeks of being diagnosed with hyperemesis, I had lost close to 40 lbs. and was hospitalized for 11 days. There are medications given to hyperemesis patients, anti-nausea meds like Zofran and Phenergen, steroids, and gut meds like Reglan, Protonix, etc. Not only did these meds not help me at all, they each actually made me sicker. Every dose I was given would cause me to vomit more, and would give me stomach pains, lower back pains, liver problems, kidney problems, something. I was told the situation was grave. My doctors discussed a feeding tube and hospitalization for the next 25-30 weeks, until I delivered. After much consultation between physicians of various specialties, they decided to put me on IV nutrition, called TPN ("total parenteral nutrition"). These were gallon-sized bags of various vitamins, minerals, calories, and fats that kept me alive. I used a syringe to add liquid multivitamins and folic acid to the TPN bags just before administering. Through my PICC line (a central line IV which entered in my bicep and emptied out just above my heart, allowing my medicine and nutrition to be pumped quickly through my body), I daily ran one bag of TPN over the course of 12 hours, along with a bag of fluids which I ran through my IV for 10 hours a day. I began this regimen in late March, and for the remainder of my pregnancy, there were only 2 hours of the day when I wasn't toting around an IV bag.

I was sent home in April, but a nurse visited me once a week to change my IV dressing, draw my blood, and take my vitals. A local hospital lab would examine my blood and determine what I was missing--i.e. was my sodium low?, did I need more calories?, were my liver enzymes elevated?--and a team of clinical pharmacists would craft my bags of nutrition for the next week accordingly. I received a delivery of my bags and my IV medicines on Friday each week, and they would take up nearly our entire refrigerator space. (Luckily, there was no need to keep much food in the fridge, since I wasn't eating.) Caring for my IV (keeping it clean, dry, uncrimped) was a hassle, but a necessity. Since the PICC line emptied into the chamber above my heart, I was told that any infection could be deadly.

I was also told that TPN shouldn't be administered to a patient for more than a few weeks, because of the risk to the patient's liver. I was on it for about 30 weeks. My liver enzymes, in turn, became highly elevated. My doctor said if they didn't go down, my liver could be seriously harmed, as well as my son's, since his tiny, still-forming liver would have to try to work hard for the both of us. It could kill him. But they couldn't take me off the TPN, because there was no other way for me to live. Instead, they removed all the lipids from my nutrition, which caused two of the three elevated liver enzymes to decrease. However, without the added fats, I stopped gaining back the weight I lost. I wound up weighing less at full-term than I did when I got pregnant. 

As part of the procedure for monitoring high-risk pregnancy patients, I would get a call from the clinical pharmacist, June, once or twice a week to ask me how I was feeling, how much I was throwing up, and if I was able to keep down any food/liquids. The answers were always the same: Horrible. All day. Nope. I mentioned each time I talked to June that I felt absolutely exhausted. As the weeks went on, I would emphasize the extent of my exhaustion: I physically couldn't get off the couch. I awoke, moved from my bed to our living room sofa, and wouldn't get up until it was time to go to bed again. I would get winded walking the 10 steps to the bathroom. Getting dressed made me so tired I got dizzy. I couldn't take a 3-minute bath without needing a 30-minute nap afterward. I talked to June about 25 times over the course of my illness, always mentioning the exhaustion, and she didn't seem overly concerned. She said it was understandable, both because of my throwing up all day and not eating or drinking, and also because pregnancy just makes a woman tired. I didn't question it because it made sense it me.

Unfortunately, it was more than that. As my due date (October 1st) neared, I began begging my doctor to take my baby early (once I reached full-term at 37 weeks) to put me out of my suffering. (As I became closer to full term, the disease got much more severe.) She said she would consider inducing at 37 weeks if my baby's lungs were developed. We had this conversation on a Tuesday, and we scheduled an amniocentesis for the following Monday (which would be 37 weeks and 3 days). She said to pack a hospital bag; if it came back that my son's lungs were developed, she would induce that day. This same day, I had my bloodwork taken by my nurse, as usual. On Thursday, as always, I received a call from the clinical pharmacist to go over my blood results and talk about how I was feeling. June, who usually called me, was out of the office for a while, so I received a call from Jodi. When I told Jodi (as I had been telling June weekly) how incredibly exhausted I was and how it was getting worse, she asked, "How have your hemoglobin levels been?" I told her that I didn't know because no one had ever discussed that with me. She did some clicking on her computer, then abruptly told me that she needed to call my doctor and would call me back soon.

What I didn't realize, and what all my doctors, nurses, and pharmacists to this point had failed to consider, was that iron cannot be added to TPN. And one needs iron to maintain normal hemoglobin levels. Because I was not able to eat or drink, nor was I getting any iron supplements for nearly 8 months, my hemoglobin levels had dropped drastically and I was considered critically anemic. Each week, my bloodwork showed my dropping levels, but they were unfortunately (and nearly fatally) overlooked. When Jodi (thank God for Jodi!) called me back, she explained that normal hemoglobin levels are 12 (on the low end) to 15, blood transfusions are normally given to patients whose levels reach 7.7, and I was currently at 6.2. She said that I would soon be receiving a call from my doctor, but that I should not expect an amnio on Monday. Even if the baby's lungs were developed, if I was induced or went into labor with my levels so low, I would likely die from blood loss. (A woman typically loses 2-3 levels in vaginal labor, 4 or more during a c-section.) If they hadn't discovered my anemia, my hemoglobin would likely have kept dropping and dropping; with the doctors not knowing I needed blood, during delivery I would lose enough to kill me.

I was immediately sent to a hematologist, who was horrified (the look on his face was, honestly, sheer terror) when he looked at my chart. He had examined my blood and informed me that my bone marrow was not doing its job of making new blood cells, and that my current blood cells were very unhealthy. He compared them to raisins because of how shriveled they were. He wanted to give me a blood transfusion then and there, but because of objections from my OB (who determined that a transfusion would be too risky for the baby), he agreed to start with IV iron infusions. He gave me my first one about half an hour later, explaining that it may bump up my hemoglobin a few tenths of a point, and--not to get my hopes up, but--there is a small chance that the iron could trigger my body to do what it is supposed to do naturally, and tell my bone marrow to start making healthy blood cells. If the former situation, we would then do a blood transfusion; if the latter situation, we might see my levels raise a full point, and would determine then if I would need blood or we would continue with infusing more iron.

Two days after that first iron infusion, I went back to the hematologist to get my blood tested. Much to everyone's complete and utter surprise, my hemoglobin levels had jumped drastically to 9.2! The doctor expressed his total amazement and shock, as well as being very pleased with how I had taken to the iron. (I consider this moment to be the first thing going right with my pregnancy.) I received several more infusions over the next 2 weeks, and by the time I delivered, my levels were at 10--safe enough that if I lost 3 or 4 points, I could live.

I was induced a week later, on a Friday night. The day/night I labored and delivered Arlo (September 23-24) were the worst of my life. I was sicker than ever, vomiting all night and day, and in excruciating pain, despite all the pain meds. The medication they gave me caused hallucinations, and I could not figure out what was going on. I would hallucinate conversations with the doctor that never happened, while actual conversations that occurred I don't remember or I thought I was dreaming. I don't remember the doctor breaking my water, but she did; and I remember the pain of contractions that followed. Unfortunately, though my labor was progressing, every time I had a contraction, Arlo's heart rate would drastically drop. He would be in danger if I labored any longer, so after 22 hours of labor, I was asked if I would consider a c-section. I wish they had offered that 22 hours earlier, honestly. I was in horrible pain (the anesthesia was not enough, and I could feel part of the cut into my abdomen, on my right side) and throwing up as they delivered my son, vomiting blood and bile on myself and the doctor who stood by my head during the delivery; and when Arlo came out, I was so sick and shaking from pain and anguish, that I could not even look at him. They wheeled Arlo away before I really got to see him. I was still sick and angry that I was still sick.

Then, a few minutes later, the doctor delivered my placenta, and my nausea and vomiting stopped. Just like that.

Arlo, praise God, was extremely healthy. As the doctors explained, he had been getting perfect nutrition, in a way, because of my illness--he got all of the vitamins, minerals, and fats directly through the TPN, with no "extras" (like chemicals, preservatives, and just the other unhealthy junk you find in most food), and he also got all my built-up stores of the stuff he needed. Although pregnancy severely depleted me of everything I needed, so much so that my nails and hair were falling out, Arlo was born with a full head of gorgeous, silky black hair and hard, long fingernails. Even though he was a week early, he was still nearly 9 lbs. When my doctor pulled him out, her first exclamation was, "Wow! Now that is a TPN baby!"

If you've made it this far in my story, well, first, thanks for reading. Second, you deserve a reward. :) Here's the precious gift I was given at the end of my horrible season of suffering, and your little treat after reading about all that nasty puking. :)

Arlo Quinlan

...at 3 days...

...at 3 weeks...

...and at 3 months.

See? Wasn't that worth it? :)

The Lord was so very merciful to return my ability to eat fairly quickly. I started out very scared to even attempt eating, but once my nausea subsided, hunger soon won out. I began with clear liquids, then full liquids (like ice cream and creamy soups), then soft solids, and finally, full solids. Everything tasted absolutely amazing. My first meal of soft solids was breakfast in the hospital a few days after Arlo was delivered. I was served scrambled eggs and a biscuit. I told my husband that it tasted like movie theater popcorn to me. :)

It was about 8 or 9 days after I gave birth that my cute little baby gave me selective memory loss. The sickness I had endured no longer felt real. I often compare it to feeling like I read about this terrible, life-threatening case of hyperemesis in a textbook, rather than experiencing it. I record my suffering here for posterity's sake, but also to look back on in case I ever think I might want to get pregnant again. (Dear Future Kelsey reading this: You don't. Seriously. Stop. I know he's cute, but he needs a mommy, and it's highly possible another pregnancy will kill you.)

So, January 7th, 2011... I remember you with fondness for the fun night you were, with disdain for the suffering that followed, and with thankfulness for the incredible gift you finally provided. And thank you so much, my Lord and God, for preserving my life, my son's life, and for blessing me so richly through my suffering. You are good.