Health Sweet Health

I am doing well these days and I was able to come home to Rexburg, Idaho with My Josh and Baby Ella on November 27th. Besides being a little lonely and missing my family in CO, I like being back in my own home with my lovely little family. We were planning on staying home for Christmas. My oldest sister Heather and her family will be coming to mom and dads for Christmas and she hasn't seen baby Ella yet so alas, we are going back home on the 23rd!

I measured my incision for the first time the other day and it is 13 inches long! But it is healing beautifully and I am able to do just about all things as before, what a blessing! My insulinoma has taught me that life is precious and that the mortal body is a miracle in itself! I'm eternally grateful to my Heavenly Father for this experience, now I know what real pain is and my capacity to emphasize, love and give service to others in similar situations has increased dramatically! I am also grateful the chance to be healthy again and live each day with more happiness and motivation. My medical bills are up to $81,000+ thus far, a little unsettling, yeah?! I remind Josh everyday that's it's okay because now he has a healthy wife again who has energy and he doesn't have to worry about me dying every night!

Well, this journey of mine hasn't been short, you see, I didn't start blogging 'til near the end of it. Nevertheless, I would like to say cheers to the end of this blog! I shall continue updating my original blog which you can follow by visiting bandjsteward.blogspot.com

On the mend

Things are finally looking up, I have been able to recover from the terrible stomach bug that plagued me all last week and yesterday I went down to Littleton Adventist Hospital to see if my drain could be removed. It started hurting when my mom would flush it with saline and it would leak saline through the hole in my abdomen. It wasn't pulling any pancreatic fluid out anymore so I knew it was time to check it. The radiologist injected some dye into my drain to illuminate the area to see if there was still a cavity filling with fluid. It only took like 30 seconds and he knew that it was healed up in there and the drain was ready to be removed!!! He pulled it out without any pain to me and I was a free and happy woman! Drains are the most uncomfortable and annoying things to deal with and I love being drain free! I don't need to take pain meds routinely anymore, I can handle the discomfort without it most of the time, so that's really nice!

My Josh comes in 3 days for thanksgiving and baby Ella's blessing and then to take us home! He hasn't seen El in one month!! We are so ready to be together again, I love him so much. He is the best thing that has ever happened to me and I am so thankful for him. He called me last night to tell me that we got our first medical bill from the Mayo Clinic, over $100,000!!!! Oh my gosh, he was in shock and I couldn't stop laughing. It's so outrageous and beyond anything we can pay, but we'll try to do the best we can. I just hope these bills that I have no control over won't ruin my credit because I have worked really hard to have excellent credit. Thank you all for supporting my family and I through this difficult trial. Your prayers, thoughts, concern, and love have made it bearable and I am eternally grateful for that. :) Below is a picture of my scar and drain.

Definatly a struggle..

Well, I've been at my parents house for a week now and it has been a struggle. I still have my drain in place and it is so uncomfortable! Hopefully it will be taken out the beginning of next week because it has mostly stopped draining. I found a radiologist here in Colorado who will take it out for me. Last tuesday night I got really really sick and ended up in the hospital for a day. They did a CT scan and it looked good. They thought it might be a bladder infection or food poisoning but nope. I was discharged and felt better for a day and then got really sick again so mom took me back to the ER so I could be tested for a bacteria but it came back negative. So the doctors don't know what is wrong with me. I think it's a bad case of the stomach bug. Anyway, I love being back with my baby Ellie. She smiles and coos all the time, precious!! She has grown out of all the clothes I brought with me so I've had to buy her some new ones. Josh is coming next saturday, the 21st so I've asked him to bring some bigger clothes! I will be going home to Rexburg, Idaho with Josh on Friday, the 27th as long as I have my drain removed before then. I am so excited to be back home and moving on with life. Soon I'll be back to my old self and healthy!

Here's a picture of baby Ellie, she's 6 weeks old now!

The surgery

The surgery happened on Oct 28th 2009. All went fairly well and it took about 3 1/2 hours. My tumor was taken out with little complication, there was a small tear on a part of the pancreas but was repaired with a piece of my small intestine. My gall bladder was removed as well as my appendix. The surgeon decided to remove the appendix because it was unusually long and wrapped around my colon which he thought could lead to a future problem. Thank you surgeon!!! Recovery went okay for the first couple of days, I had an epidural and IV pain meds to keep me comfortable. I started having blood in my stool which lead to some worry that there might be internal bleeding. But after more tests, we discovered it was just old blood from the surgery and was perfectly okay. On Friday they took my epidural out and started weening me from the strong IV pain meds, this lead to disaster!!!! I was in excruciating pain in my back, abdomen and chest. They started the strong pain meds again but nothing worked. This agonizing pain lasted for 3 days. So finally monday morning the surgeon ordered for me to have another CT scan and they found old blood and a tiny bit of pancreatic fluid around the area of the incision. They inserted a needle in my abdomen and drained it out, then gave me some more pain meds. He said part of my pain is also probably from passing a leftover gallstone. This morning I had another CT scan to make sure there was no more fluid accumulated, however there was so I had another drain inserted into my abdomen. I will leave the hospital with it in. My pain is manageable now and I am starting to feel better. Yay!!! As soon as I have a good 24 hrs, I can go home to my baby, which by the way she is doing wonderfully with my sisters!

first stop.. Colorado..

Baby Ellie and I made it to Colorado on Wednesday the 21st. She is doing really well, she takes formula great and I have a nice supply of mommy milk for her as well. My sisters love her and take really good care of her so that gives me much comfort.

Earlier this month I began to have severe, stabbing pain all through out my rib cage and back. It would last for hours and no pain medicine would relieve it. I finally called my mom and explained the pain to her and she said, "that sounds exactly like what I had when I had gallstones" So I went to my doc and sure enough, I now have gallstones. The surgeon at the Mayo Clinic said he would be happy to take my gallbladder out the same time as the surgery to remove my insulinoma. However, he said my gallbladder ultrasound and blood tests confirm that there is inflammation on my abdomen so he recommends I wait 6 weeks so that it can subside. I was devastated with that news, living with the pain and low blood sugar for another 6 weeks???! no!!!! I called the surgeon right up and told him that it would be very difficult to do this, so he had me get another ultrasound and blood test and discovered that the inflammation had gone down some and that we could continue with the scheduled surgeries on the 28th as long as the tests that they preform at Mayo continue to look good. Cross your fingers! I haven't had any pain for over a week now so that's a great sign!

My husband flew out here to CO last night for an internship interveiw today and also to see baby Ella and I before I head to Mayo. It is good to be with him again, I love him soooo much. He gave baby ella and I a blessing and it really gave me peace and comfort. I feel more confident that things will go well for me and that my baby will be well taken care of. Thanks my Josh!!

The surgery is scheduled

I contacted the Mayo Clinic this week to see when we should schedule the surgery to have my Insulinoma removed, My doctor said that the surgeon is only avaialble on Oct 28th or Dec 2nd. So I opted for Oct 28th. My mom is going to come with me to the Clinic and I'm going to leave baby Ella with my Sisters in Colorado. We decided it would not be good to bring her to the clinic where she could catch all kinds of germs. It's going to be hard on both of us but I know that she will be well taken care of. I have started a supply of my milk for her while I'm gone and she takes it from a bottle very well. We are also going to start her on formula just in case my milk supply runs out. Josh is right in the middle of the semester so he is going to stay behind and continue school and work. That is going to be VERY tough! But we decided it will be the best way. So I will be leaving for Colorado (my families' house) on the 21st of Oct. with baby Ella so I can teach my sisters how to take care of her. Then mom and I will leave for the Mayo Clinic in Rochester, Minnesota on the 26th. I will have a CT Scan and consult with the surgeon on the 27th and then surgery on the 28th. I am very nervous and scared as I have never had a surgery before. Please pray for my little family and me these next coming weeks as they will be difficult.

Life as a mom... with low blood sugar!

So being a mom is pretty much the best! It's everything I dreamed it would be. My favorite thing about Ella is right after she is done nursing, she has mommy milk dripping down her chin and she's completely blissful. I call her my milk drunkin' baby!! It tickles me everytime, I never tire of it!!! She is two weeks old yesterday. I love her more and more everyday and I'm so grateful to have her. Josh is so cute with her, When he comes home from School/Work all he wants to do is hold her and kiss her. It heart them!

My blood sugars have become progressively worse this past week. I notice that I need food more and more during the night especially. Last night Ella slept for about 3 hrs straight and when I woke up to get her I could barely stand up because I was so weak, dizzy and sweating. I leave a cup of juice on my night stand for such occasions and in just moments it gives me the strength to get to the kitchen for something more substantial. I know most people think it's an easy thing to deal with... how hard can it be to eat frequently? Let me tell you, it isn't easy and I find myself emotionally drained sometimes but I try to be brave and strong. I try to remember that Heavenly Father hasn't given me more than I can handle and he loves me.

I am beginning to have severe pain in my rib cage area that my mom believes is gall stones. She and my oldest sister had to have their gall bladders removed right after giving birth to their first babies. It looks like I'm no exception to this.

I have tried to post pictures but my internet must be too slow because they never upload. So please check my facebook page for the most recent pictures of my new little family!

Thanks and much love to you all!

Baby Ella is here!

Baby Ella was born on September 21, 2009 at 11:49am, weighing 7 lbs 11oz and 18 inches long. She is beautiful and healthy and looks just like her Pops! Everything went well, I am glad to be home with her. She loves to cuddle and is a pretty good sleeper, sometimes I have to wake her up to eat!

I stayed in the hospital for a little bit longer to monitor my blood sugar. With the IV and eating frequently, there were no problems. However, when I was getting ready to be discharged, the nurse checked my blood sugar and it was only at 57. She freaked out and tried to make me stay longer until it was back up to a safe level but Josh and I insisted she let me go because staying in the hospital won't make any difference. She didn't believe us. So because it is such a rare tumor, we had to explain the whole thing to her so she would understand and not be so freaked out about it. We told her that even if I was to stay in the hospital longer, it will inevitably go back down. We explained that I've been living with this for the past 9 months and that I know how to manage it at home. Finally, she understood and let me go. I was free!! Phew!

The first night home was a little nerve racking for me because I didn't know what to expect and I didn't have the nurses continuously monitoring me. But everything was fine, I am up many time at night with baby Ella anyway so it's easy to check my sugar levels at any time. However, last night when I was about ready to go to bed, I checked my sugar and it read at 158, I thought that couldn't be right, that's diabetic levels and there is no way! So I figured at least it wasn't low and went to bed. When I got up with Ellie about 3 hrs later, I was sweating really bad, dizzy and so weak I couldn't stand long enough to change the babys' diaper. But I checked my sugar and it read at 122 which is normal levels. I drank some juice quickly and instantly felt better. I know it was dangerously low because those are all the symptoms. I guess I better buy a new sugar tester because that was really scary...

Baby news

My doctors' appt last wednesday brought good news! Labor is scheduled to be induced starting Monday night, Sept 21st. I am already dialated to 2cm and 70% effaced. Baby Ella is finally coming! I can't express how excited I am for my very own baby, I have waited for this day my whole life! Despite the excitement, there is much nervousness too! I have a feeling I'm going to be an emotional mess, it's already started!

My doctor will keep me in the hospital for longer than usual because he anticipates some complications with my blood sugar. I think that's what makes me most nervous. Not knowing what to expect, but my Josh will be there as well as my mom and two sisters, Sadie and Nikki. Oh and of course my baby Ella!!

Thanks for all the support and love everyone. It has not gone unnoticed! I will update again after the baby comes! <3

Here's a pic of me just a few days ago at 37 weeks pregnant. She's almost here and I am SO EXCITED!

Brittany's Struggle

Hi Family and Friends,

I decided to start a blog to keep you all informed on my baby and Insulinoma. Alot of you may not know about my health problems so I will explain.

Ever since I came to school here at Brigham Young University-Idaho in August 2007, I noticed that my health was changing. Thing like, feeling more tired, no energy, less endurance, (I couldn't handle my usual exercise routines anymore), I seemed to get cranky very easily when I didn't eat on a normal basis and fasting on fast sunday was impossible anymore. I would get dizzy, blurry vision and feel like I couldn't walk. I didn't think too much of it, I just assumed I was hypoglycemic. Which means low blood sugar. As long as you make sure you eat normally and manage it there are no more symptoms.

However, when I got engaged to my amazing husband Josh, who also attends school here, I noticed it was getting worse. In the mornings I would wake up with an overwhelming feeling of fatigue. I could hardly see anything but I knew as long as I ate breakfast really fast, the symptoms would subside. So I did, then I would look back on those mornings and remember I was unconsciously eating high sugar foods and putting things in weird places, etc.

On my honeymoon in December 2008, Josh found me lying in bed, my eyes open but not really there. I would not respond to anything he said or did. So he took me to the ER. They asked if I was diabetic and if I had accidentally taken too much insulin. But I wasn't and never have been. My blood sugar was at 34 (normal blood sugar is between 110-130) so they gave me a shot of sugar to bring it up fast and then sent me home with a prescription to eat candy. When I came to, I could remember things while I was low, like Josh talking to me and things going on around us. It's like I couldn't think for myself, I was helpless.

Josh and I decided I should drink a glass of juice before bed so maybe this wouldn't happen again but it did. Josh and I were both in school full-time, working part-time and dealing with me having these same scary symptoms almost every morning. Josh would try and get me out of it by talking to me and giving me orange juice through a straw but he said I would get mean, I'd kick him and refuse to eat or drink anything! It was really trying our new marriage relationship. We would get frustrated with each other, we didn't know what was wrong and neither did anyone else. I would call my mom all the time and just cry because there was alot of stress with everything going on. I found out I was pregnant on January 21st 2009. Excited and scared all at the same time. Sometimes I would go for weeks and not have any low blood sugar symptoms and then all of a sudden they would come like crazy.

Finally, in March 2009, I went to the doctor for my first pregnancy check up and told him of my other symptoms. He was immediately concerned and had me come in the next day to do a blood sugar test. The test came back with results all leading to a very rare tumor called an Insulinoma. It is benign and usually located on the pancreas. He said they'd have to do further testing though to confirm it. So a few days later, I was admitted to the hospital here in Rexburg. They made me fast the whole time and kept my blood sugars up through an IV. They preformed and ultrasound and MRI of my whole stomach and couldn't find anything. I was there for 3 days and although my doctor was almost sure it was Insulinoma, it couldn't be confirmed until they could locate it and they needed better equipment to do so.

So I was referred to a specialist at the Mayo Clinic in Rochester, Minnesota. My mom and I flew there in April 2009 while Josh stayed behind to continue the semester. We were there for one week, they did more ultrasounds and testing with no luck. Until they finally decided to do an Endoscopic ultrasound where they put me to sleep and put a tiny camera down y throat to locate it that way. SUCCESSFUL! They found it on the head of the pancreas. A dangerous place because thats where all the bile ducts and other important arteries and things are. This Insulinoma is about the size of your finger nail bed. It is extremely rare, only 20 cases in pregnancy ever reported and only 300 cases at the Mayo Clinic in 25 years. It produces extra insulin, causing my blood sugar to drop dangerously low, consistently. I've had to manage the dangerously low blood sugar levels by waking up every 4 hrs at night to eat certain foods and every 1-2 hours during the day. I have gained about 40 pounds from the extra food to maintain sugar levels and another 30 from the pregnancy. The surgery is too dangerous to do while pregnant so it has been postponed until after Baby Ella arrives in late September 2009. The last month of my pregnancy has been much better. I don't have to wake up and eat at night because pregnant women are more insulin resistant. However, after the baby arrives, the doctor anticipates some very extreme lows so I may need medication until I can get back to the Mayo Clinic for surgery. We got an estimate from the Mayo Clinic for the cost and it could be between 20k-60k to have the tumor removed. So, your prayers, support and even donation would help us out and be forever appreciated!

That's where we are now, waiting and hoping everything will go smoothly. Please stay tuned!