This post has nothing to do with a clever project for your home. However, it is something I feel is very important to share, and I hope you take the time to read it. Be warned, it is quite long, and there are some graphic/really ugly photos in this post.
The following is a brief account of my experience with Hyperemesis Gravidarum.
My husband and I "tried" for over two years to become pregnant. By the time I actually became pregnant, we were SO ready for a baby! I was ecstatic! Finally everything seemed right in the world.
That feeling lasted about 12 hours. I spent the night I found out I was pregnant laying on the bathroom floor, vomiting. I just chalked it up to over-excitement, and maybe some "morning sickness" that didn't know it wasn't morning. I was pretty nauseous the next day and I couldn't eat anything without throwing up. After about a week of that, I was starting to feel awful.
By my estimation, we found out we were pregnant right at the 5 week mark. (Keep in mind, we had been trying. We had temperature charts, etc. We knew when the "good" days were!) At this point, I figured I was about 6 1/2 weeks into the pregnancy. I called my OB again, but they said they didn't need to see me until I was 8 weeks along. I told them I felt awful, and they said it was normal.
My husband saw how sick I was. I had lost four pounds since we had found out I was pregnant. (That's approximately four pounds in 10 days. For someone my size--5'7" 142lbs--that was kind of drastic!) My husband took me to the ER. There they asked me how far along I thought I was, and I told them 6 weeks and 4 days. They laughed. I told them I was serious. When they did the internal ultrasound, I measured 6 weeks and 4 days. (Who's laughing now?)The ER doctor said I was severely dehydrated, and they gave me two liters of fluids. They said I was having a rough time with the "morning sickness".
My so called morning sickness continued to get worse. I was working as a nanny, and I had to all but quit my job. I was very fortunate that the family I worked for was able to find a replacement who could cover all of my days except one. Even working one day a week was incredibly difficult. I carried gallon size zip lock bags everywhere I went so that I could throw up in them and then just throw it out! Every time I was in a car, a started vomiting. Every time. (My husband said, "It makes me nervous that you are driving down the road and puking. I wish you wouldn't do that!" I said, "I wish I wouldn't do it either!")
Every time I went to the OB, the doctor would say, "Your going to start feeling better soon. You just have to round this bend." As far as I could see, there was no "bend" to round. I was on a continuous circle of vomit and misery. I was heartbroken. I had wanted a baby for so long and had dreamed of being pregnant and "glowing". What I was experiencing was nothing like the picture I had had in my head.
I see this random picture that my husband snapped around my 9th week, and I recall exactly what I felt like in that moment. So sick. No energy. Despair. I had probably just thrown up, and I would do it again in about five minutes. Definitely not my fairytale...
I felt so guilty for being so unhappy. My prayers had been answered! What did I have to be ungrateful for? One friend actually said to me, "All you have wanted for the last two years is to be pregnant. Now you're pregnant and all you do is complain! No one feels good when they're pregnant! Get over it!" I was crushed. I felt my friend was right. All I did was complain. But it was hard not to complain when you couldn't even look at food without vomiting. Then I would think, "Maybe this is a sign that I am not going to be a good mom! If I can't even handle the baby when it is inside of me, what am I going to do when it is here?!"
My pregnancy continued to be difficult. The baby was very healthy, but I felt like I was dying. I lost 14 pounds in my first trimester, and I didn't reach my pre-pregnancy weight until well past the halfway point. I had a standing order at the ER for IV fluids. I took 4mg of Zofran three times a day, and I think it did help. Instead of vomiting 30 times a day, I would only vomit 10-20 times a day. By the end of the pregnancy, I was a bit better, typically vomiting only 5-6 times a day. (My OB said, "Some people just have a harder time with the sickness.")
One of many bruises from the IV's
I went into labor on my due date, and was having a beautiful labor. However, after almost three hours of pushing, I ended up with a C-section. My husband recalls that, as our son was being pulled out of me, I said, "He's out." I remember feeling like a veil had been lifted. I felt great! My mother-in-law was allowed to visit me in recovery. She saw me about 45 minutes after the surgery, and she said, "You look great! You have color in your cheeks!" I really did feel fantastic! (My husband says I asked for a cheeseburger. I don't exactly remember that, but I probably did! I do remember being very hungry!)
We took our baby home, and we were all very healthy. I figured I just wasn't very good at being pregnant, but it was all worth it!
When we were considering having another baby, we talked about what we would do if I had "morning sickness" again. Everyone said it was unlikely that it would be that bad a second time, and I agreed. I still thought I probably didn't have the best frame of mind with first pregnancy, and that I would just "be more positive" with the next one, especially since I knew I would get through it.
We got pregnant the first time we "tried" with the second baby. I knew I was pregnant because I woke up one morning and threw up. The next morning the same thing happened. I hadn't puked since my last pregnancy! I decided to take a pregnancy test, even though I was only on day 24 of my cycle. Sure enough, I was pregnant.
By the time I was 5 weeks into the pregnancy, I was in the ER with severe dehydration--despite my attempt at a positive attitude. My OB (same practice, different doctor), said he wanted to get me hooked up with a home health care group. He said I had Hyperemesis, and that it was a pregnancy disease. I was so sick, that that really didn't mean a lot to me at the moment.
The next day a nurse from Matria Home Healthcare came to our house. She put an IV in my arm right in my family room! Then she proceeded to show me how to insert an infusion in my leg that would pump continuous Zofran into my body. I was like, "This is crazy! I cannot do this! I won't do this! I just want a normal pregnancy!" I would soon realize that, for me, this was as normal as it was going to get.
Zofran infusion in my leg
Infusion sites needed to be changed about every 12 hours due to pain and swelling.
My husband and mother-in-law started scouring the internet for anything they could find on HG. They discovered that, while it is a rare "disease", my case was not unique. They found this fantastic site by the HER Foundation (Hyperemesis Education and Research): www.helpher.org. On the title page of the site it said, "HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting with the potential adverse consequences for the newborn."
I could not believe it. This was exactly what I had experienced with my first pregnancy--and it had a name! It was a real condition! I wasn't crazy! I was so thankful to learn that I was not the only one to have a difficult pregnancy, but I was so heart broken that I had suffered alone with my first one!
Our lives were drastically changed during my second pregnancy. My health became a full-time job. I was not well enough to take care of myself, let alone my 18 month old son. The women from our church came to our home 9am-6pm, Monday-Friday, and took care of my son and me. A home healthcare nurse came to my house every three days to change my IV. I had to call my personal nurse (her name was Liz!) every morning and check in. She needed my weight, med levels (had I given myself any bolus doses?), my ketones (I had to pee on a strip every morning), my nausea level, etc. Our dining room became our medical supply closet. There were so many bags of saline (I needed three liters each day). Endless supplies of needles, syringes, dressing kits, medicines, blah, blah, blah. I say it like that because I can hardly bear to remember it all. My husband and I were in survival mode.
By the seventh week of my pregnancy, I had a minor break down. I couldn't do it any more--and I had a LONG way to go. A very lovely nurse came to my house to change my IV, and I told her I didn't want to be poked anymore. (By this time, I already had several huge bruises on my arms, and I was so dehydrated even with the fluids that it was becoming difficult to find a vein that could support an IV.) The nurse, bless her heart, took pity on me and called Liz. Liz and Mary Beth, my home healthcare nurse, talked on the phone and decided to see if I could get a PICC. (Matria's initial hope was that, after a few days, my body would stabilize and I would not need to have continuous fluids. Fat chance. After two weeks they realized I was in for the long haul.) I must say that my insurance was great, and everything was approved by that afternoon, and by that evening, my PICC was inserted.
First PICC line
Getting the PICC was not a painless process, but it was worth it to not have to be poked anymore! Plus, every time they needed to draw blood, which was often, they could do it through the line! Bonus! Unfortunately, my first line only lasted seven days. It was in the crook of my left arm, and the vein was apparently too small. I got a horrible phlebitis (painful swelling in the vein), and the PICC had to be removed. They used an ultrasound to insert the second PICC into my right bicep, and I had no complications with the placement of that line.
My husband became a professional at changing IV bags, working the pumps (I had to have two--one for the IV fluids and one for the Zofran), taking care of the house, our son, my care schedule, etc. I truly would not have made it through without his help and support. At night, he would lay down next to me (because I was almost never out of bed) and I would say to him, "Please find someone who will be a good wife to you and a good mommy to Quinn. Please love someone else and let them love you." It sounds so dramatic, but I was sure I was not going to wake up in the morning. I really believed that there was no way someone could be as sick as I was and keep on living.
My son checking on the baby
Mary Beth became my permanent nurse. Sometimes she would stop by the house more than once a day! She always let Quinn hold the Doppler.
As hard as the physical part of the pregnancy was, the emotional part was probably worse. I was watching my life play out before me, but I had no way to participate in it. My son broke his leg when he was 20 months old. I was not able to go to the doctor with him. I couldn't pick him up because I wasn't strong enough. I didn't even have the energy to read him a book. He stopped calling me "mommy" and started calling me "Holly". I figured it was because there were so many people coming in and out of our house that called me by my first name that he wanted to do it too. It was painful.
I literally did nothing for a very long time. I went three and a half weeks without so much as a sip of water, because even water sent me into raging convulsions. I didn't leave the house for 11 weeks, except to go to the hospital or for an OB visit. And even for the OB visits I would call ahead and make sure they were on time, because I couldn't sit up for more than a couple of minutes, and there was no way I was going to be able to sit in a waiting room for 45 minutes. I couldn't be left alone with my son, because I couldn't take care of him. I couldn't drive. I couldn't bathe myself. I am grateful to my husband and step-mom and mother-in-law for making sure I got a bath everyday. This pregnancy was a very humbling experience.
Mary Beth changing my site dressing
I had my PICC for 11 weeks before it needed to be removed. My skin had broken down to a point where I was at risk for a systemic infection. Mary Beth started using paper dressings and began cleaning my site every 24 hours, as opposed to every six days. But after three days, it was apparent that the PICC needed to come out. It was unfortunate, because I really could have used another six or eight weeks with the IV's and meds, but I survived.
Skin starting to breakdown
Skin deterioration, about two days before the PICC was removed
I went back to the Zofran infusion in my leg. I had to be vigilant with taking sips of water every few minutes in an attempt to stay hydrated without shocking my system. It was a difficult journey, but it did have an end. Praise.The.Lord.
This is me at 24 weeks pregnant with Morgan. I weigh the same today as I did then. Crazy.
At 37 weeks, I was contracting regularly and was dilated to 3cm. I was already set to have a C-section at 39 weeks. I was so sick I BEGGED them to take the baby. The doctors said they could not legally take the baby until 38 weeks unless I was at risk, and I, even though I disagreed!, was not at risk. The day before my 38th week, I had an amnio to verify lung maturity, and my daughter was delivered the next day.
Still feeling like garbage on delivery day
I did not have the immediate reaction that I did with my son, but my health was restored before my daughter was six weeks old. I did have some post-partum issues the second time around. I think I was so focused on feeling better right away that, when that didn't happen, I was crushed! Plus, I had a couple of bad reactions to some medications (think terrible, painful rash), and the site where my spinal had been inserted wouldn't close, so I had massive headaches. Add that to the already crazy hormones you get after delivery, and I was bound to have some issues!
Quinn and Morgan in the hospital on the day she was born
My doctors performed a tubal ligation while they had me open for the C-section. My husband and I had given the tubal a lot of thought and prayer, and we decided it was what was best for us. I decided that I did not want to take the chance on another HG pregnancy. There was a time when we didn't know if we would be able to have children, and here we were, blessed with a healthy boy and a healthy girl! We also believed that there would be other ways to grow a family--other than this body--if we felt so inclined!
The grieving that took place during my second pregnancy over the struggles in my first pregnancy was tremendous. In my first pregnancy I really doubted myself, and I felt like such a failure. I was too sick to be mad that I had gone undiagnosed--and being mad wasn't going to change anything!--, but I vowed to spread the word and help others as soon as I could.
I signed up to be a volunteer "counselor" with the HER organization, and I receive a few calls a year from women or families who have found my name through them. However, most of the referrals I get are from friends or family members who know that I have HG experience, and they contact me for advice on helping one of THEIR friends or family.
Just this week, I was contacted by an HG support group that was working with a patient in Chicago. We were able to get some help to a young woman who was so desperate she was considering ending her pregnancy. Sadly, there is such little support for HG suffers that many of their pregnancies DO end in termination.
The group that I was contacted by is "Beyond Morning Sickness". They have A LOT of resources and a great network for HG sufferers. You can check out their website here.
I hope that my story has given you some insight into what HG really is, and I thank you for taking the time to read it. This is certainly not an exhaustive report on HG, and I have many other stories to share, but I hope it is a start in getting the word out there! If you ever has a question regarding HG, please do not hesitate to contact me, and I will do my best to help out any way I can!!!
And just so everyone can see how well we are all doing, here is a family picture from last fall.
Enjoy the Son!