Sleepless Nights

Tonight is a sleepless night for myself. I've had a rough day with nausea and vomiting because I am out of my nausea medicine and am trying to make it two more days until I can get it refilled. Every time I tried to eat or drink today I got sick. Its frustrating because not only does it hurt to get sick but I'm not keeping down the food I need to eat for our baby boy. I am trying to do my tube feedings through my G/J feeding tube and had to decrease my rate down so that I can tolerate my feeds to get some nutrition that way. I've been trying my preggie pops which are hard candies that have ginger in them which is supposed to help with nausea, mint, and smelling rubbing alcohol but so far nothing is helping. I'm hoping that I can try and get some sleep and maybe that will help me feel a little better... On the bright side we did put our Christmas tree, Christmas village, and other decorations up today! I wasn't able to help as much as I wanted to and had to take breaks but was glad that I was able to do a little bit of decorating. Last year in December I was just getting my feeding tube placed and had complications with it getting infected and then flipping so I didn't get to help decorate for Christmas and spent most of December in the hospital. I was home for Christmas though and even though it was a challenge for me to get through with recovering and slept through most of it, it will be nice that I will be able to enjoy it more this year. I'm trying to get through the night since I'm not feeling well by focusing on the good things and the fact that I get to celebrate and enjoy Christmas this year and thinking of how next Christmas baby Scott Isaac will be here to celebrate his first Christmas!

 If you are having a tough night, can't sleep, not feeling well, or whatever it may be I hope that you are able to focus on something good to help you through the tough times! Stay Strong! 

Megan

Matthew 11:28 "Come to me, all you who are weary and burdened, and I will give you rest"

Week 15

Question Time... Gastric Stimulators with Pregnancy and Morning Sickness

Today I thought I would go ahead and answer some questions from people that have sent me messages about my pregnancy and GP. This is why I started the blog so that maybe in some way it would be helpful to those that are concerned about these topics. I'm in no way a doctor and my answers are based on my personal experiences. 

Question: "I bookmarked your blog and can't wait to follow this baby's progression, can I ask you a question, are they concerned at all about pain with the location of the gastric stimulator (aka gastric pacer) battery back as your tummy grows? I'm a pacer and a tubie as well, so your journey will be an inspiration for me one day hopefully!" 

Answer: I think the person that was most concerned about the pain with the location of the Gastric Stimulator (aka gastric pacer) as my tummy grows is me. That was one of my biggest fears not knowing how that would come into play as I progressed in my pregnancy. The doctors said that it should not affect the baby at all when it comes to the stimulator and the stimulation because it stimulates my stomach only and is not near my uterus. As for if it will move when I grow, it is stitched in its own 'pocket' and I have excess leads to allow room for growing. The battery pack itself is placed lower on me near my waist line on the left side. Some people depending on the surgeon and their bodies have it placed higher on the abdomen so it might be different but I am not quite sure. The doctors said for me that my body will grow and adjust with the stimulator and my GI doctor and OB/GYN are not too concerned about it, which made me feel more at ease. Medtronic, the company that makes my gastric stimulator does not have a lot of information so far on the topic of having Gastroparesis with the treatment of their gastric stimulator while being pregnant; however, their website does have awesome information about the Gastroparesis and the gastric stimulator. 

Question: " I am having a hard time with Gastroparesis and morning sickness. Was there anything that helped you get through it? I feel like it's never going to end and that I'm just going to feel like this forever. I can't deal with it. Any advice would be appreciated! I don't have a stimulator and I'm not tube fed and I'm very concerned about getting the nutrients. Thanks so much!"


Answer: First of all congratulations on your pregnancy! That is so exciting and I wish you all of the best for you, your baby, and your family! I went through horrible morning sickness like you are going through when I was in my first trimester. I too thought that it was never going to end and was worried about getting nutrients in since I was having a hard time keeping them down. My morning sickness lasted throughout the day and into the night especially in weeks 10-12, I think those were the hardest. I tried a lot of ginger things, ginger ale helped if I took little sips and they also have these hard candies called Preggie Pops that are natural and are supposed to reduce morning sickness and nausea. They have ginger in them and they worked well for me; I kept them with me at all times. I first got them at Babies R Us in a pack but then ordered them off of Amazon as well. They have good tasting flavors like raspberry, tangerine, apple, and lemon. If you can't find those maybe try some other hard candies that are easier to find. Try and drink liquids more too if you are having a difficult time with solids, maybe even chicken broth if that works for you. It was basically trial and error with me, but once you get out of your first trimester it should start getting better. I had lost 2 pounds from all of the vomiting and was concerned but my high risk OB nurse said that it was alright and just to keep trying. I take zofran to help with nausea as well since it is a safe medicine during pregnancy to help with my nausea. I know that it is scary when you are afraid that you are not getting enough nutrients and are vomiting, but if you do have concerns always call your doctor and ask. I've called a couple of times with questions that I felt so much better about after talking to the nurses. Good luck!

I hope that this is helpful not only for the people that asked these questions, but for people that may be wondering the same thing. I hope that everyone is having a wonderful weekend!

~Megan

"Only in the darkness can you see the stars" - Martin Luther King Jr.

First Trimester

Right now I am already starting my 15th week of being pregnant and am in my second trimester. I wanted to fill you all in on how my first trimester went and the first appointment we had with our Perinatologist. I'm playing catchup right now but I think its important to share how my first trimester went.

Here is a journal entry I had wrote after our first baby appointment.

October 15, 2013:
Today was our first appointment with the Perinatologist. Our doctor is Dr. Karen Raimer out of All Children's Perinatology. We see a high risk OB/GYN because of all my chronic illnesses and since I have the feeding tube and gastric stimulator implanted. Jonathan (who is my wonderful boyfriend and is going to be an amazing daddy), my mom (aka Mimi), and I all went to the appointment. We went over my medical history, medications, past surgeries, etc. with the nurse Rhonda who was great. Then we did our first ultrasound and we got to see baby for the first time. I was 8 weeks and 6 days pregnant during the appointment. It was amazing and incredible to see baby. We were all so excited to see baby. We saw your heart beating and that made me tear up. Then we got to hear the baby's heart beat at 175 bpm and hearing that for the first time was wonderful. My mom and Jonathan were smiling ear to ear during the ultrasound. We got a print out of some pictures from the ultrasound. Jonathan pointed out that in one of the pictures our baby looks like a heart shape. After the ultrasound we met with Dr Raimer who was great. She took the time to answer any questions and said that baby is growing perfectly and is right on track. We found out our due date is May 21, 2014!! I was concerned about having the gastric stimulator implanted and the feeding tube and if it would affect the baby at all, but she said that it should not be a problem and that it was a good thing I was getting tube feedings to get more nutrition to help the baby grow. Dr Raimer gave me paperwork for bloodwork and urine tests to make sure all of my levels are where they are supposed to be. Our next appointment is November 6, 2013 at 3pm and I will be 12 weeks pregnant by then. We can't wait until our next appointment to see how much our baby has grown!

Here is another journal entry I wrote after our second appointment.

November 6, 2013:
Today was our second appointment with our Perinatologist at All Children's Perinatology. Jonathan was sick so he could not come with me to the appointment, but I did have my brother Matthew (aka Uncle Matt) and Jonathan's mom Wendy (aka Nana) to come with me. I was so thankful that Wendy drove us down to the appointment and that she and Matthew got to be apart of this experience. We got to the appointment and I did my blood pressure, temperature, a urine test, and went over my medications and to see if there were any changes in my health. They also checked my weight and I had lost 2 pounds, most likely from all the morning sickness I have had the past few weeks.. by the way I think that they should change the name to all day sickness because it never stops, but at least I'm over the worst part now. I went back out in the waiting room and then they called us to come in and do the ultrasound. Wendy, Matthew and I went into the ultrasound room (this is my favorite part of the doctors appointments) I love getting to see baby and was so excited not only to see how much baby had grown but also to see Wendy and Matthew's faces when they saw the baby on the ultrasound for the first time. I think one of my favorite parts was this time we got to see the baby kick and wave! At one point baby even 'jumped'! I loved seeing baby's little fingers and toes! The heartbeat was at 164 bpm during the visit and baby is growing right on track with its estimated due date. This visit we had Dr. Prieto another Perinatologist in the practice. He was nice and said that the baby looked perfect and the neck looked great. After meeting with the doctor we set up our next appointment which is going to be the anatomy ultrasound of the baby and I'll be 18 weeks pregnant then! That is the one I am really excited about seeing all of the organs and making sure that everything is the way it is supposed to be. One of my biggest fears is that the baby will have stomach issues like I have, but it has been very reassuring hearing from the doctors that our baby is healthy. I had bloodwork done to check the baby for Down Syndrome and also they can do a gender blood test! How awesome is that?! We will know if we are having a boy or a girl in two weeks! 

Morning Sickness
I was wondering how I would do with the morning sickness during pregnancy. The first trimester was definitely the most challenging so far when it comes to morning sickness, but I made it through. There were days were I spent most of the day vomiting and would have to keep a bucket by my bed. I think the most confusing part of it was I didn't know if it was morning sickness or if it was my Gastroparesis acting up. With my Gastroparesis I do get sick so I wasn't sure which one was the cause of my vomiting. By the way, my morning sickness was an all day thing.. it didn't just occur in the morning and in fact it seemed like my worst part of the day was at night. I did lose two pounds from all of the vomiting but when I talked to the doctor about it they said that since my morning sickness was improving and not all day like before I should be alright and it wouldn't affect the baby, which was very reassuring to me. I was not tolerating much food by mouth and that is when I really appreciated having my feeding tube still. It gave me a way to still give nutrition to the baby and make sure it was getting what it needed to grow. 

Thanks for reading :) 

~Megan 

"A grand adventure is about to begin" - Winnie the Pooh 

A Little About Me

Since I am just starting out with this blog, I think its very important to be able to share my journey with you all to understand a little more about me and my illnesses.

I was completely healthy growing up and hardly ever got sick. I was very active and involved in gymnastics, cheerleading, soccer, and dance. Well you know the saying "Sweet Sixteen".... well lets just say that mine wasn't so sweet. I started getting sick around my sixteenth birthday. I had a bad stomach virus that lasted for about 3 weeks. I couldn't keep anything down during that time. I actually ended up going to the Emergency Room for dehydration. After I thought that the stomach virus was gone, I was still getting sick alot throwing up. I had to keep going to the emergency room for fluids. Throughout the next couple of months I would still get sick. It started to seem like it was happening more and more often. 

When we realized that this was still happening and I was nauseous, vomiting, having reflux, and losing weight we saw my pediatrician and she recommended that I go see a Gastroenterologist.

I was misdiagnosed with something called cyclic vomiting syndrome. I was still getting sick, ending up in the hospital alot and the medicines were making me sicker.  

I was going to the hospital every four to six weeks for fluids. I have done many tests such as endoscopy, laparoscopy, gastric emptying study, MRI, Cat Scan, Barium x-ray, and many others.  The gastric emptying study was what diagnosed me with Gastroparesis in summer 2009.

After having a correct diagnosis I was glad to finally have a name for what was going on with me, but realizing that there was no cure for this disease was difficult to handle and wrap my mind around that I will have it for the rest of my life. 

I was constantly in and out of the hospital.. I frequented doctor offices more than I did going to the movies, the mall, or football games like everyone else my age was getting to partake in. I was missing school and when I was able to attend classes missed half of them because I spent most of the time in the bathroom vomiting. It was a real struggle to go through... trying to deal with what was happening to my body and still trying to be "normal." It was also challenging because people didn't believe that I was actually sick, they thought I was making it up, doing it for attention, you name it. It was already really hard on me physically with what was going on with my body and not being able to control it, but I had lost most of my friends because they didn't understand what I was going through. 

I went to Nationwide Children's Hospital, January 2010, in Columbus, Ohio for further testing and to see about further treatment. I had a 9 hour test there called an Antroduodenal Manometry. This was how they diagnosed the Visceral Hyperalgesia. For treatment options, I tried two more medicines but they did not work and gave me bad side effects. The other option was the Gastric Neurostimulator also known as the Gastric Pacer. 

 (Here are photos from when I had the antroduodenal manometry test done in Ohio)

I had my Gastric Neurostimulator implanted on March 18,2010 at The Cleveland Clinic in Weston, FL. Dr. Rosenthal, my surgeon performed the surgery which lasted about 45 minutes and then I was in the hospital for 24 hours after that. After getting out of the hospital I started keeping solids down again, it was amazing.

                  (This was before my Gastric Stimulator surgery in pre-op)

 

I started to eat more of a variety of foods and actually keep them down for the first time in a long time. I went from vomitin 10-12 times a day to 1-2 times a week. I have to make sure that my settings are adjusted every so often when my symptoms come back in full force but that is just a matter of using a Medtronic device to program my stimulator.

After getting the Gastric Stimulator it worked great for awhile. My GP symptoms were still present but had reduced in how often. When I would start vomiting more often and wasn't able to hold my food down and would get dehydrated they would adjust my settings with the device pictured above and it would help me start feeling better. 

In March 2012, I started to get really bad flare ups with my Gastroparesis again and even with adjusting the settings it didn't help. We found out that my leads of my Gastric Stimulator had protruded through my stomach wall. I had to have surgery to get the leads replaced so that it would start working again. However even with the leads being changed I wasn't getting the same relief as before. I was not tolerating anything by mouth. I started getting dehydrated more and more, losing weight, and vomiting all of the time. The hospital was basically a second home at that time because I was inpatient for so long. I was getting malnourished and the doctors put me on TPN and placed a hickman so that I would be getting nutrition through my veins. I was TPN dependent until December of 2012, when they placed a G/J feeding tube in my abdomen so that I would get formula through a tube to get my nutrition because the TPN was affecting my body. 

(My G/J tube after surgery. The G part is the part of the tube that I use for venting my stomach out to help with nausea. The J part is the part I use for my feedings, it bypasses my stomach and goes into my intestines)

I went over a year without eating or drinking anything by mouth. In March of 2013, I went to a motility specialist at the University of Miami and also saw a Medtronic representative who checked my Gastric Stimulator and saw that the battery had died. This meant I could finally get a new stimulator and I was praying that it would help me as good as it did the first time. In April, I ended up getting sepsis, a bad blood infection and they had to pull out my hickman that I had kept for IV access. That was probably one of my most scariest experiences so far because if not taken care of it could be fatal. 

In May of 2013, I got really sick with a bad Gastroparesis flare up and was in the hospital from May 2-June 5. I wasn't tolerating my tube feedings very well, dehydrated, had tons of pain and was trying to get a new battery still for my Gastric Stimulator. The problem was I had to be healthy enough to undergo surgery, so I spent most of May at St. Josephs Hospital North where my GI doctor goes trying to get healthy enough to where I could have the surgery. I was transferred to Tampa General Hospital where the surgeon is out of so that I could have the surgery to get a new battery. After having the surgery and getting a new Gastric Stimulator which was placed on May 30, 2013, I stayed in the hospital trying to handle the pain and be able to tolerate liquids again. This time it didn't work right away like it had the first time. I was discharged and had been home for about a month before I was able to tolerate liquids again. The first time drinking something was so amazing. After a couple weeks of tolerating liquids I was able to start tolerating solid food again! I'm still not able to get enough calories by mouth so I still do my tube feedings as well. 

 I also deal with several other chronic illnesses in addition to Gastroparesis such as: Visceral Hyperalgesia, Raynauds, Myofascial Pain Syndrome, Fibromyalgia, Spina Bifida Occulta, Eosinophilic Gasroenteritis, on and off Pancreatitis, low platelets, and some other things as well. 

I want to focus on my Gastroparesis issues mainly with this blog and documenting and sharing how my pregnancy goes with having Gastroparesis, the gastric stimulator, and a feeding tube. 

Being sick really makes you realize not to take anything for granted and to appreciate everything in life, the good, the bad, the ups, and the downs. I know that even though sometimes it is hard to see that everything will work out the way it is supposed to. I don't like being in pain and suffering but it definitely has made me stronger as a person. I'm very excited for this next chapter in my life with being pregnant, having a wonderful boyfriend and seeing what happens next. In my next entry I'll talk more about being pregnant and what that is like so far, but I wanted to include my story to give you an idea of what I have been through and where I am coming from.

Stay tuned... :) 

Thanks for reading and I hope everyone is having a wonderful day!

~Megan

"Don't lose hope you never know what tomorrow may bring"

Welcome!

Hello everyone!

Welcome to my blog! 

I decided to start a blog because I have gotten many messages and questions from people through my Facebook asking me about my chronic illnesses, my pregnancy, and how I try to balance all of that with having a life. I thought that it would be helpful to others that are curious about my journey and be able to share my experiences with those that are interested. 

Whether you know me personally or just found my blog randomly I hope that it gives you some insight to my life and is helpful for you and/or someone you may know! :)

~Megan