Friday, January 5, 2018

A Year Without Food

I went home from the hospital with something called a PICC line. (In fancy doctor terms it stands for a peripherally inserted central catheter. You’re welcome.) The best way I can describe it is similar to an IV you would get in your arm except it is inserted into your arm and the line goes into the main vein near your heart. A PICC line is where they can give you nutrients, medicines and draw blood labs. We inject vitamins into them every night. They use this instead of a regular IV if the person will need this more long term. Because I am not eating enough to sustain me, I get my daily nutrients from this line every night. Around 8:00 I hook myself up to a big bag of medicine that runs for 14 hours. This gives me all the nutrients and vitamins to keep me going. I think it is rather amazing that a bag of what looks like water can keep a person alive. Thank goodness for modern medicine!

At first it was hard to be hooked up to something all night. I felt limited and tethered to my bag. It was hard to carry around and also sleep with a tube on me all night. However, as time has gone on I rarely even notice it. Peyton has always encouraged me to not let the TPN (the bag of nutrients) hold me back and limit my lifestyle. We got a backpack to hold my medicine and that has been so helpful. I hook that thing up, strap it to my back and I am good to go. I have taken it to Samantha’s soccer games, church, the movies, the store, etc. A lot of people are surprised that they don’t even notice that it is not just a regular backpack.

When I came home from the hospital I was on limited foods and eating applesauce, chicken broth, crystal lite, and very small bits of “approved foods” like really moist chicken, and lactose free yogurt. I was very nervous about how my body was going to react to the foods. The small intestines is the place where the majority of your nutrients, food and vitamins are absorbed so I was nervous to see what would happen if I didn’t have much of that piece. I was also receiving tube feeds through a tube in my stomach that would keep my intestine working.

After I was home for about 2 weeks from the hospital things went from bad, to worse. I would throw up constantly, all day every day. I felt awful, depleted and hopeless. I would sleep with a bucket next to my bed because without fail I would throw up multiple times in the night. I was running on little energy because whatever my body was eating was coming right back up. They decided to do a CAT scan and discovered that I have an obstruction. This is due to more of my small intestines being necrotic. This is best described as a blockage. Anything I was eating or bile I was secreting had nowhere else to go. I was admitted back into the hospital for some additional tests. They administered multiple endoscopies where they put a balloon down my throat, blow air into it and to try open the obstruction up but after about 3 of those, they said they were not working and it was too dangerous to keep doing.

 I then had a tube inserted with two bags to drain my small intestines and my stomach. This is NOT a colostomy bag. It drains bile. Which, you’d be surprised at how much that is! I still have these attached to my stomach that has required me to be creative in my clothing. The great part about these two bags is I am not throwing up all day anymore! The bile now has somewhere to go and it no longer has to come up. I have felt so much better since they inserted this tube.

( Heres a picture of my two bags. I guess we're at that point in our relationship where I can show you things like this.) 

After that hospitalization, I went home where they stopped my food intake and my tube feeding. I was (and still am) sustained 100% on the nutrients bag. That’s right, I haven’t eaten anything in almost 5 months. I am allowed sips of water and chicken broth. This has been by far the hardest part of my trial. I love cooking and I love food and when I wasn’t able to eat anymore I mourned that. First of all, you don’t realize how much exposure to food we have. Everywhere you go you see advertisements for food, every church gathering, or activity with friends and family involves some sort of eating. The holidays were obviously the worst. Although Peyton bought me the most expensive water he could find. I would find myself becoming almost obsessed with food. I would have Peyton describe how it tastes, I would watch others eat and tell them in what order they should eat it. At the same time, I have had to withdrawal myself to situations where my favorite foods are being served or take a second and regroup when I am having a craving.

 I miss textures and flavors and chewing! With that said, I have been very strong in this whole process. I don’t say no to activities where there is food and most of the time I sit down with my family at dinnertime. I’m also a wife and mother so I am still cooking for my family. I miss date nights that involved restaurants, late night ice cream treats, and junk food at Disneyworld. I have to remind myself that this is only temporary.

Savages, I tell you!

My surgeon does not want to go in and remove the obstruction for about a year. Her reasoning (which I support) is if she were to go in now so soon after my other surgeries it could compromise the small portion of healthy intestine that I still have. So right now, for about a year I am giving my gut a “rest” and not eating food.

I have some great doctors, surgeons and specialists I am working with. I have a home nurse who comes in once a week to draw labs and clean my PICC line; I go and visit my specialist in Miami once a month and my surgeon who did the surgeries have all been a great support. Even my OBGYN who was watching this all happen, has been a constant support, and we text often. I feel very fortunate to be surrounded by so many capable health care professionals.

Before having Preston I had decided to give birth at a well renowned baby hospital. I called it a baby factory because they just birthed those babies by the minute. But about a month before everything happened I decided to try another hospital, which was much smaller but had all the services a regular hospital would have. I told Peyton at the time I didn’t know why I chose the smaller hospital, but we went with it. Looking back I know I was guided by the Lord to choose this hospital because my surgeon had seen a similar case like this before and if I were to have given birth at the baby factory I would’ve had to have been transported to the downtown local hospital, and it was so time sensitive, I don’t know if I would’ve made it. Plus this allowed me to be close to Preston when he was in the NICU.

Although this is an unfortunate and rather horrifying event, there have been so many blessings through all of this. I feel grateful to be alive. Trust your gut (haha, that’s not really funny, is it?) Listen to the Lord, and he will guide you to where you need to be and with you need to be with.

The other day I was at the Kennedy Space Center and I was wearing my backpack. I had to take Preston out because he was getting fussy and some man yelled out to me. “I see you with your backpack and everything. You’re a great Mom! You’re doing a good job!” I wanted to fist bump the world at that moment. I thought to myself, “Heck yes, I am! I am killin it!”” But ya know, I just humbly said thank you J I never knew proper strength until I had to be strong. For myself, and for my babies.

So many people have offered to cook for Peyton, watch Samantha and Preston for my doctor appointments, drive me places, do my laundry, etc. I feel so lucky that I have my own cheer squad and tribe looking out for me.

The next step in my recovery will be my surgery in about 9 months to remove the obstruction. If all goes well I will be on a specific diet and hopefully be able to wean from the PICC line bag of nutrients. I will then be given tube feedings and hopefully in the future I will be able to eat enough things that my body absorbs to keep me healthy without any tubes or lines. I am hopeful this will happen and I am grateful I am here to endure it with my family. 

Monday, December 18, 2017

Gain a Son, lose a gut.

I’ve probably written this blog post in my mind at least 5 times by now. It is by far the toughest thing I have had to write. You know those disheartening stories that you hear about other people? You never expect these rare and devastating events to happen in your life. Let me start from the beginning.

We had been living in Florida one month, and I was 35 weeks pregnant when I woke up one morning feeling very poorly. I threw up a couple of times and started to have some cramping. I laid down and felt a bit better. For weeks I had been having Braxton hicks contractions, but they felt similar to the ones I had when pregnant with Samantha. I thought that these cramps were more of the same. As the day progressed the cramps turned worse and they were settling in my upper abdomen, which I thought was unusual. Peyton came home early from work, we dropped off Samantha at our new friends’ house, and we headed to the labor and delivery area of the hospital. They immediately hooked me up to a fetal monitor to track the baby’s heart rate and check on the contractions.

 They were a bit bewildered from the beginning because of where my pain was located. I was having contractions but they weren’t regular. They decided to relieve me from my unbearable pain by giving me my epidural. Then things got really bad, really fast.

After getting my epidural I had relief for 10 minutes before the pain returned. They decided to give me more of the epidural to rise the numbing up my abdomen, but it didn’t work. I started throwing up. Peyton was a great support and held my bucket, but as he wiped my mouth he saw blood.

He hurriedly walked into the hall and called for the nurse who came in and verified that it was blood. After that about 10 doctors and specialists came into the room and they all agreed that it was time to get the baby out as quick as possible via C-section and this would provide them the ability to see what was happening in my abdomen.

I remember them immediately wheeling me into the Operating Room and it felt like all the doctors and surgeons from the whole hospital had joined us. I kept asking everyone through tears who they were and what they were thinking was wrong. Everyone cheered me on and gave me assurance. I remember them pulling Preston out and my doctor exclaiming, “Here’s your baby, Catherine! Here he is!” They took Preston and put him on the exam table next to me. He wasn’t making a sound for what seemed like an eternity, but Peyton told me later it was only a few minutes.  After they got him stabilized they told Peyton to follow the baby to the NICU. They told him that they would need to do a surgery on me and that I would be put under. Before they wheeled Preston out I got to put my hand into the incubator and pat his stomach and hold his hand for a few seconds reminding him to be strong and that I would always love him. This was one event that I can remember with perfect recollection. After that my world went black.

This is all very hard to recollect for you, as my emotions following the next few days were all over the place. There are about 4 days where I do not remember anything. Peyton kept a journal to help me piece it together.

When they put me under after the C-section and investigated further they discovered that almost my entire small intestines was tangled up and had lost blood supply. Because of this, my intestine was dying. The first surgery I had immediately after delivery was to untangle the intestines to see if it would regain blood supply and return to normal. It took them over 4 hours to untangle my intestines, working hard to be delicate with them in order to not make further damage. After they did this surgery they knew they had to go in the very next day to see if untangling the intestines was successful. After the first surgery was Peytons best and worst night of his life thus far. His son had just joined the world and his wife was going to possibly leave it. The surgeon discussed with Peyton the severity of my situation. At this time he told my Mom to come right away and called the Bishop of our church to have them administer a blessing to me in the ICU (Intensive care unit).

The next day when they re-opened me they learned that previous surgery was not successful. They started to remove and resect the pieces that were no longer salvageable. This was difficult because some of my intestine was necrotic in places and healthy in other parts. The only way to do this successfully was to get rid of a good portion of it and then reconnect it.

(Here is my small intestine.) 

For a few days I was intubated and sedated. Preston was still in the NICU and Peyton would spend all day going back and forth visiting his fragile son and wife. I cannot imagine what Peyton was going through emotionally as all of this was happening. Both our families do not live by us, but our new Florida family jumped into action, arranged care for Samantha and had people deliver dinner to the hospital for my mom and Peyton. I will always be appreciative and grateful for our new friends who became our family to help us in our time of need.

They performed various x-rays and endoscopies in my time in the ICU. One day I started to have bad fevers and they decided to do a 3rd surgery to go in and see if I had an infection from the removal. They were relieved to discover that the intestines were okay and they further flushed out my abdomen to make sure it was clean and healthy.

After the 3rd surgery, I started to awaken from days of anesthesia and coming out of the fog of pain medication. What that brought was paranoia, anger and confusion. Peyton’s favorite “ICU moment” was when I exclaimed, “We’ve been duped! This is a magic show that we are in!” I “remember” seeing certain things that were not happening and hearing things that were senseless and outrageous. I also was very confused at what had happened to me.

My days in the ICU were the darkest days I have ever experienced. I was coming in and out of heavy pain medication, which made me sleepy and jumbled. I remember I would cry when Peyton would have to go home for the night because the nights are the times when I would hear imaginary people talking. I was left to my own contemplations. At one point Peyton said I asked them to sedate me so that I would not have to experience another emotional and hysterical night.

Every day Peyton would explain the situation and what had happened to me. He would describe my new anatomy and what the future could mean for me. He would try and use easy words for me to understand due to my foggy brain. Then I would fall asleep to take a nap and I would forget everything that he had told me. He learned to wait a few days to tell me details and to only tell me the pieces that I would need to know at the time.

After 6 days in the hospital I finally felt well enough to go meet my son, Preston. I will never forget this moment. I was apprehensive and nervous to go see him. I had a lot of equipment that I was still hooked up to and my physical comfort level was tolerable but not great. The moment that I was wheeled into his room in the NICU my whole heart burst and I forgot all of my pains for the hour that he was in my arms. He was perfect, and so much tinier than the pictures of him that Peyton had shown me! (5 lbs. 12 ounces). Every day I was able to go up to the NICU and visit him for around an hour. These were my most precious memories in the hospital.

The days passed and I ended up progressing. I was able to drink chicken broth and sugar free crystal light. After 2 weeks of being in the hospital I was able to eat applesauce and yogurt, which was a huge improvement. I had a feeding tube (into my stomach) that gave me my additional nutrients, also. Some days in the hospital were better than others, but after a week in the ICU, I was transferred to the Progressive Care Unit where I spent a month before being able to go home. I lived for the hours where I would be able to see Preston and Samantha.  

The day that Preston was able to go home from the hospital was a day filled of mixed emotions. I was so excited that he was healthy and able to go home and be with our family, but I had a hard time not being able to be there for his first days in our home.

Two weeks later, I was given the clearance to go home. Peyton’s parents flew in to help with Preston, which was super helpful. It was so nice to come home and be with my children full time again. I had missed being with them. I never knew how much I loved being a Mom, until I wasn’t able to do it.

My diagnosis is short bowel syndrome, which is defined as the removal of more than 50% of small intestine. The main function of your small intestine is to absorb the nutrients from the food that you eat. I am still trying to understand what this means for me long-term and my ability to get the nutrients that my body needs.

I have chosen to write about this in my blog for a few reasons.  After I came home from the hospital I wanted to learn more about my diagnosis and to connect and learn from people who had similar stories. This condition is pretty rare and every time I turned to the Internet to find comfort or knowledge I came up ended handed. I want to be the support and resource for someone who is dealing with this frustrating and difficult condition that I didn’t have. If I can tell my story and give consolation to one person who is struggling, it will all be worth it. I have posted a few things on Facebook and there has been such an outpouring of love from family and friends. In the early days of my hospitalization acquaintances, friends, families and even strangers were praying for me. I had never felt so physically defeated but stronger because of the faith of so many people. I truly will never be able to provide my gratitude sufficiently. I am incredibly grateful for so many people who have cheered me on during this difficult journey.

So what now? How is my health since this happened 4 months ago… I plan to do a few other posts updating you on my status. I will tell you this. I am struggling but I am strong. My family has been a great support to me in my depression and meltdowns. I feel fortunate to have such a loving, sympathetic and devoted husband who has been there every step of the way. Every day has gotten a bit better, and I can feel the effects of so many blessings. I can do hard things, and I know that I have many people who will be there rooting for me.

Thursday, August 17, 2017

Maasai Mara National Reserve in Kenya Africa

After leaving Nairobi we boarded a small prop jet that took us into the Maasai Mara National Reserve. The reserve covers 583 sq. mi in south-western Kenya. Flying into the park we could see just how huge this place was. It was fun to be up above and see all the animals roaming below. The great migration is the time of the year when all the animals travel from Tanzania's Serengeti National park to the Maasai Mara reserve to stay for better hunting. This is 1,800 miles and on that adventure an estimated 250,000 wildebeest die while traveling. We knew that we wanted to travel there in August to see them in action. 

During our stay at an all-inclusive lodge (Below) (there was nothing for miles) we went on numerous game drives (safari) in order to see the animals. We would get up early when they were hunting their prey and at night before sundown. It was a scavenger hunt to try and find all of them.

 One day we decided to catch the wildebeest crossing at the Mara River. For hours the wildebeest gathered at the foot of the river waiting to cross. The river is dangerous because it is filled with crocodiles and the current can be hard to cross. We watched and waited for what felt like forever before all of a sudden they started crossing the river. I was so proud of them! Watching hundreds of wildebeest cross the river was crazy to experience. Some had a hard time making the journey, and babies and mothers had to be careful once they made it onto the other side because they had to climb a steep mountain. Luckily we didn't experience any crocodiles hunting during the cross, but we saw them lurking nearby. 

One morning we got up before the sun to take a hot air balloon ride over the savannah. It was so peaceful floating up above and catching the sunrise over the reserve. After the balloon ride we were served a brunch in the savannah under a tree. We were lucky enough to spot some animals as we floated on. This was definitely a bucket list experience and I am glad we did it. 

One afternoon we wanted to go see where the Maasai people lived. We traveled right outside of the reserve and were taken to a tribe that lives off meager means. We were invited into their village and taught how they survive and their customs. It was sad seeing their living situations as they live in dwellings that were made of mud and cow poop. They showed us their tricks of jumping very high and how skilled they are at hunting and creating their houses. Although it was sad to see their living circumstances, I love seeing how diverse the world is and all the different cultures. 

 The Maasai Mara was one of my favorite parts of the trip. Africa is truly beautiful. I fell in love with the sunsets, the wildlife and the country. I loved seeing animals that you don't normally see in their own habitat instead of in a zoo. I could've watched them for hours. I am so glad we went during the great migration and that we were able to experience this amazing part of wildlife. I definitely recommend it. Heres the lodge where we stayed.  Check it out HERE.

After we left the Maasai Mara we headed to Zimbabwe and Zambia to visit Victoria Falls, which is where we experienced the craziest thing we've ever done. Stay tuned!