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.