Thursday, May 15, 2014

What Hyperemsis Gravidarum Means to Me

After the twins were born, I looked at them and thought: "Three kids is enough. I'll be happy with that number of children." I told myself to remember how blessed we were to have three healthy little ones and not to focus on the large family of four or five children I had envisioned before marriage. Logically, I knew it wasn't a possibility.

Months and then years went by before I finally acknowledged that our family wasn't complete. Someone was missing. 

Instead of being happy or excited about welcoming a fourth child into our family, I was filled with dread and even despair. Although the idea made me overjoyed, the reality that I would have to endure pregnancy another time kept me awake at night praying, thinking, and researching why I am one of the 1-4% of women who suffer from Hyperemesis Gravidarum (HG). 

When I was pregnant with Eliza, I couldn't stop throwing up. By the time I went to the emergency room for fluids, I was severely dehydrated and reprimanded by the doctors and nurses for neglecting my body and my unborn child. I just thought pregnant women got sick and assumed I was complaining about normal symptoms. A few weeks later, while visiting my OB/GYN for the first time, my doctor discovered my body was going into renal failure and diagnosed me with Hyperemesis Gravidarum; I was incredibly sick.  He gave Nathan and I such a stern lecture on taking care of my body that Nathan almost passed out. When the doctor told us I could die, I remember Nathan's legs buckling as he sank to the ground. I was immediately admitted to the hospital, set up on IV therapy, and somehow survived without long term damage to myself or Eliza. 

My pregnancy with the twins was a similar situation. This time, though, I asked for help. I even begged for help when doctors began running out of viable options. I received IV therapy, had a feeding tube inserted, and lost 20% of my body weight despite constant rounds of medicines and fluids. Throwing up 20 times a day left me so weak that I could not work. Because of the severity of my illness, my job actually considered me to be disabled. I remember thinking how accurate that word was to describe me. My father is a paraplegic, so I have always taken disabilities seriously, and I do not use that term lightly. My medications left me so drugged that I could not drive, I alternated between vomiting constantly and sleeping because the medicine didn't have any real effect on my body and sleeping helped me escape the torture, I relied on my husband and my mother-in-law to bathe me and brush my hair and teeth, and I couldn't go to any appointments without a wheelchair nearby. 

It was a nightmare.
16 weeks pregnant with the twins versus a healthy 34 weeks pregnant
Becca would come by most days and just sit with me, and Amalia would help braid my hair. I remember being too ashamed to have most people visit me because I felt like I couldn't control my body or who I was. I didn't want people seeing me wallowing in self-pity and trying desperately not to give into the sadness that was overtaking my life. The night after my feeding tube was inserted, I lay awake listening to the machine pump formula down the tube that was inserted through my nose and into my intestine. I could hear Nathan breathing beside me and tried to focus on his comforting presence, but after a few hours, all I could hear was the machine. I couldn't sleep, I couldn't move without the machine following me, and I felt trapped. 

I began praying to Heavenly Father and asked Him to take this trial away from me. I prayed and told Him that I had learned everything that I wanted to know from this experience and that I would be okay with no longer living like this. All the while, my throat burned from the tube rubbing against its raw tissue, and I did my best not to cry because becoming upset only caused the tube to move and created more painful friction. Eventually, I couldn't stop the tears. I felt sorry for myself. I felt angry this was happening to me. I wanted to die. I knew I psychologically and emotionally couldn't handle much more. I had reached my breaking point.

The next day, I vomited so forcefully that the feeding tube became dislodged from my small intestine. My prayers had been answered (although in a round about way), and I pushed myself to drink Carnation Instant Breakfast constantly in order to avoid another tube. This is what I had hoped to avoid experiencing ever again.
I am currently 17 weeks pregnant with our fourth child, and I unfortunately have gone through almost the same exact trials once more: IVs, hospitalization, a feeding tube insertion, and even vomiting up the feeding tube. The silver lining this time, though, is that during my feeding tube insertion, doctors did a biopsy of my small intestine and discovered I have an extreme case of Celiac Disease. I have been gluten free for 5 weeks now and able to eat small meals once or twice a day for 2 weeks. Because my small intestine is so destroyed and weakened, my gastroenterologist told me I would be dead in 5-7 years if I did not stop eating gluten; I suppose I did have more to learn after all. 
12 weeks pregnant with baby # 4
I have hesitated to write about my current pregnancy because I knew that most of my posts would be negative due to the trials in my life. I also know that my experiences with Hyperemesis may make it seem that I am ungrateful for my fertility, but I assure you that I am indeed grateful for my children and my body's ability to produce such healthy babies. I just wish my pregnancies were a little less cruel. 
I have been keeping a journal during this pregnancy, but finally decided to share my story after speaking with my doctor.  A few weeks ago, he told me, "Please promise me you'll keep a journal of what you are going through. One day, your child should read about everything you were willing to endure to have him or her. And even if you don't think you are strong, you are. You knew it would probably be like this and you decided to have another baby anyway. To me, that takes courage." 
And yes, to me, Hyperemesis Gravidarum is about having courage. It's about surviving countless IV insertions and bouts of nausea and vomiting and focusing on the ultimate goal: having a child. I'm not saying I'm a hero by any means (because I have cried countless days), but I am able to face each trial because I have the knowledge that it will all be worth it in the end. Sometimes, this goal seems far away because this illness is such a thief. I feel like months of my life have been stolen from me. For weeks, Eliza would come to my bedroom and tell me, "Mama, you missed all the fun today while you were in bed." And for months now, my husband has been the sole parent, a full-time student, an employee who works from home, and a nurse who administers my IVs. He has done it all, and it has taken everything from him in return. Seeing Nathan and my children suffer because of my sickness has been demoralizing. I have suffered from immense feelings of guilt and have felt like an incredible burden to everyone I know. Furthermore, I have felt completely alone with the severity of the sickness. My doctor told me I was the sickest pregnant woman he had ever seen during his 30 years of practice. A few days ago, he hugged me and with tears in his eyes told me that knowing I had gained weight was an answer to his prayers. He let me know he had never seen someone "so desperate for relief" and that thoughts of me crying in my hospital bed often kept him awake at night (and yes, my doctor is the nicest man in the world). I was crying that night because I felt like no would could ever know how much pain I was feeling. I felt like my ability to relate to others was taken from me. 

Ultimately though, Hyperemesis Gravidarum has forced me face the reality that I will never have more children biologically. I know I will never put myself or my family through another pregnancy again, but I obviously do not regret any of our pregnancies. I am grateful for our wonderful friends and family members who have gone to the hospital with me, brought us meals, watched our children, cleaned our house, and braided my hair. My current pregnancy has shown me the selflessness others possess, and Nathan and I have been truly overwhelmed by love. I'm trying to focus on how fortunate we are to know so many loving people rather than the torture I have endured. It helps most of the time. I'm just glad the worst is over (although an IV currently remains in my hand). 
16 weeks and doing better!
Today is HG World Awareness day, and I thought I would tell my story. For more information on Hyperemesis Gravidarum and support if you or someone you know is suffering from this illness, contact the Hyperemesis Education and Research Foundation (HER) at http://www.helpher.org/.  

6 comments:

  1. I completely agree with your doctor. You are so much stronger than you give yourself credit for! Yes, this struggle takes so much from you and out of you, but you endure and place your child's life above your own. It's incredible to me how much you are willing to sacrifice to bring a spirit into this world. I'm so sad and sorry for the burden that gets placed on you with this illness, but I'm glad that something amazing comes from it in the end. Love you!!

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  2. You are amazing! I admire your courageousness in doing what it takes to bring a new baby to the world. I pray that you continue to feel better and get healthier and healthier.

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  3. Cecilia you have such amazing courage. You're one of my many heros because of your selflessness, strength, and compassion. You are so amazing and your children are eternally blessed to have you as their mother. Nathan is such a wonderful man I'm so glad you have him by your side every day.

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  4. Congratulations on your pregnancy! I really hope you get to feeling better soon and that you and baby stay healthy.

    On a side note, I'm not sure if you knew, but I'm gluten intolerant too. I've been gluten free for more than 19 months now. I'm glad they got your celiac diagnosed. It's crazy how gluten can wreak havoc on your body. If you want to know my whole story with that or are wondering what in the world you can eat, you can e-mail me at sarahbugc at gmail. I hope you feel better soon!

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  5. You're such an amazing mom and woman! You are the DEFINITION of courageous.

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  6. You are incredibly courageous and I know others will benefit from reading this! I'm glad you're alive and thriving now. And, able to share your experiences with us. We all struggle in different ways, but there's similar themes that come through all trials if we're looking for them. Hugs, friend.

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