Wednesday, August 1, 2018

Why I am Saying Goodbye to my Family

After laboring for a good 5 hours with extreme upper cramping, an epidural that was doing nothing, and throwing up green stuff I knew something was wrong. I could feel it. Maybe it was all the doctors and specialists that quickly entered and exited my delivery room like they were running a marathon. Maybe it was the look on Peytons face when I threw blood up all over him. Maybe it was the anesthesiologists that were quietly whispering in the corner. Or it could have just been pure mother instinct already kicking in that this was going to be a very extraordinary delivery.        
My OBGYN told me hurriedly that they were doing a C-section. It was not a question. It was not a suggestion. It was, “this is happening.” I remember them putting the shield up under my neck so that I couldn’t see the birth. At that moment I turned to every nurse or doctor that was hovering over my belly and said, “Listen, if this is between me or my baby, choose my baby. Let me die, save him.” Looking back its surprising that this came to my mind, because I truly was so naïve and confused at how severe this whole thing was until I woke up 4 days later. It wouldn’t have changed anything, of course they were there to save both our lives, but I like to think that I had some say in the matter. Everything was so out of my hands at this point.

            After they pulled him out, they took him right away to monitor and help him breathe. Then they put him in an incubator.  They said that they needed to take him right up to the NICU and that Peyton should follow because I would need an emergency surgery. They wheeled him up to me, I put my hand in and said, “I love you. Be strong. You’re going to be okay.” Of course I didn’t know that either of us would be okay but when you are a mother, newly or seasoned, comforting your child is second nature.

            4 surgeries, time on a ventilator, an endoscopy, a trip to the ICU, and a million fevers later I woke up and the first thing I said to Peyton was, “Did I almost die?” Peyton, always being the optimist replied, “Well…you’re doing good now.” Every day I asked him, “But could I have died?” I could not wrap my head around the thought of leaving this earth so unexpectedly. I was preparing to become a mother for the second time, not making my way to heaven. In a way, coming close to death has made me step back and reassess my life. Lets be completely honest here though, it has also scared the hell out of me. The thought that I hadn’t even said I loved you to Samantha had me crying every day. Every single time she called or visited me in the hospital I didn’t want it to end, and I made sure she was next to me at all times.

            The other thing that I realized was that I hadn’t told my family how much I appreciated them. Had I thanked them for helping me move to Florida? Had I thanked them for being my constant support and love during all my challenging times as a teenager? And for goodness sakes had I mentioned to my husband that I had very strong feelings about what Preston should wear home from the hospital? I just wasn’t ready. There were so many things left unsaid.

            Are you ever ready to leave this world? People sadly die unexpectedly every day and their families grieve so woefully. Of course death will always be sad, and I am not invalidating anyone’s challenging time of repairing a broken heart from death, but if I were to spare my children and close family even just a little sadness by leaving them something, anything, I needed to.

            My big 16-hour surgery is in two weeks, ya’ll! I am so excited for it because it is the next step in my recovery. They will be removing the obstruction that has prevented me from eating for a year, reconnect and remove any lingering necrotic bowel, and then flip my intestine so that the beginning will be the end, and the end will be the beginning. This is so that I am better able to absorb nutrients in the future. This is a complex and rare case and one that many medical professionals have never even heard of. Luckily my surgeon is kind of a big deal, and she is very confident and capable of doing this, which puts me at ease, even just a little.

 My last appointment I was asking her numerous questions about the procedure, recovery expectations and possible side effects. I then looked at her seriously with tears pooling up and asked her the question she probably dreads. “Could I die?” Apparently she wasn’t too fazed because she exclaimed, “Oh, yeah!” To which I let them tears roll down like a rainstorm. 

            I went back home and opened my laptop. I am hopeful for this surgery and optimistic for the outcome, but I want to be prepared for the worst-case scenario. I started to draft goodbye letters to my children. One may ask, “How could you even write something like that?” But, to be honest, the words came naturally. Whether I had help from the Lord prompting me what I needed to tell them, or I just really had thought of things already, I won’t know. But I like to think that these letters will help them if I pass away.

            2-3 pages don’t really seem adequate to say all the things I need to say in a lifetime, but the most important things are included. I talked to Samantha about how thankful I was that she was who made me a mother. She has taught me so much more about patience, love and kindheartedness that no one could have prepared me for. I apologize to Preston for not being able to love him on this earthly life longer. I tell him that he can get to know me through my family, my pictures, blog posts and sincere prayer. I give both my children guidance for the future, advice on what to strive for in relationships, putting education first, and leaning on their Dad for comfort only a parent can give. Peyton’s was the hardest letter to write, as I feel like I had to provide the most consolation to him. I included memories and inside jokes that we have laughed at over the years, gratitude for loving my imperfections, and encouragement to have future loving relationships.

            I wrote these not to make them sad that I was gone but to give them something to remember me by, and to turn to if they ever needed answers or advice they couldn’t quite find the answers to. I wrote these so that they could have only a small bit of comfort if the worst-case scenario happened. I wrote these because I am a mother who will do anything in her power to continue to love her family more abundantly, genuinely and passionately.

            I hope they never have to read these letters. I am optimistic that all of the things written to them I will be able to tell them myself in spoken words in the future. I believe that they will always have me with them, but I can’t help wanting to have some control and influence in a situation that is so unknown and uncontrollable.

            So hold them babies tight, everyone. Tell them you are proud of them regularly and that if they ever make mistakes its never too late to start over. Don’t forget your husbands, they need love, too. Often stated, often acted upon and often showed. The future is given to us, but it is never guaranteed. I hope when it’s my turn to leave this world (either in 2 weeks or in 50 years) my family will know how I felt about them entirely.

Saturday, June 23, 2018

Lessons Learned From not Eating

It has been 10 months since I have eaten anything. (If you are new to the blog, check out THIS post, as it explains the history behind the madness).  This has been a challenging trial, to say the least. There are many things I have learned about myself, as I have had to endure this. I have also noticed things about the world as I have observed places and experiences that involve food. Spoiler: It’s everywhere.

I was throwing up all day every day in the first part of my recovery. I just thought it was a normal symptom due to having 90% of my small intestine removed. Unfortunately, after about a month of vomiting, they discovered through a CT scan that there is an obstruction (blockage) in my remaining intestine. The two pieces of intestine that were reconnected closed up, creating a blockage with little to no room for anything to pass through. Anything I was trying to eat had nowhere to go and would just come right back up. It was the most miserable month of my life.

Monday, March 19, 2018

I get by with a little help from my friends.

Since my diagnosis and hospitalizations I have often had people ask me how I am doing. It is always such a loaded question, like, where do I begin? How much do they know? How much do they want to know? Should I be honest, or should I act like I am doing good?

            Most of the time I say something along the lines of, “I am hanging in there.” or, “today is a good day.” I just figure no one wants to hear, “Well, I threw up all night and I haven’t pooped in a week, but enough about me, how’s the family doing, Susanne?” Turns out, people don’t just ask this question to take up time. They genuinely want to comprehend how I am doing and what they can do for me. I learned this when recently a friend asked how I was doing and I replied with, “I am feeling so much better.” She then turned to me without skipping a beat and said, “Okay, thanks for accommodating me. How are you really doing?”

            I paused and just let it roll. I may have rolled it too eagerly because pretty soon I was a sobbing mess, but my friend didn’t falter or awkwardly change the subject. She listened. She sympathized. And the surprising part was she thanked me for being authentic because then she was better able to understand my needs. It was there that I was realized that being vulnerable doesn’t make you weak; it makes you stronger for being genuine.

            The other thing I have learned is that people want to help, people want to be needed. I have seen this countless times as I have watched my tribe of family, friends, acquaintances and strangers have offered their love and assistance. This has been a very humbling experience for me…to say the least. I have always wanted to do things myself. I have a really hard time asking for help. I would almost rather serve everyone around me before asking someone to lighten MY load. I always thought like asking for help made me inferior, but then I would get upset when some of my friends kindly refused my help when I offered. By the way, why is this a problem with women? It seems like men easily can text someone, “hey bro, wanna help me move my whole house this Saturday? K, cool.”

            After my incident happened and I was on the long road to recovery I literally could not do certain things. I have felt so much love for people who jumped right in to fulfill the things I could no longer do.

            I feel love as I watch people deliver dinner to Peyton and Samantha. I feel love as I see a whole ward of mothers look after my children when I am in the hospital. I felt love as my new friend, a cosmetologist, came to my home to wash, cut and style my hair the night I got home from the hospital. I felt love as my friend came to the hospital armed with girls night in activities and proceeded to curl my  hair and paint my nails. I have felt love as people have sent baby blankets, get well soon cards, inspiring books and beautiful flowers. I felt love as I have been given countless priesthood blessings from so many willing men. I feel love when my daughter shouts to me as I am laying down, “I hope you  feel better!” I have felt overflowing love as I have watched my mother, father, and in-laws dedicate months and months of traveling to Florida to help us. I feel love as a friend has been doing my laundry. I felt love when our friends came and spent their vacation watching my kids, cleaning my house and running errands for me. I felt love when a few days after my surgery my husband carried me into the hospital shower and washed my injured body, completely drenching his fully clothed body in the process.

            I often have thought about this whole situation as a nightmare and an experience that impaired my life within a few minutes. I have recently started to try and shift my thinking to all of the incredible blessings that I have seen and the love I have felt as this has transpired. Had this never have happened I never would have become closer to my husband, my parents, my sister, Peytons coworkers, my new friends and fellow church members.

            If you are struggling with a difficult situation, may I share with you what I am starting to slowly learn? There is good.  Find it. Hold onto it and try and grasp it when you feel like you can’t go on another minute. Feel love as people administer service for you. A nurse in the hospital shared something with me when I was being discharged and overwhelmed at the thought of recovery. She said, “Someone asked me if I could eat an elephant.” Of course, I replied, “No!” To which they told me, “You could…one small bite at a time.”

            Remember, the Lord has not given you more than you we handle. These trials and hardships will make you so much stronger in the future. I know this can be difficult to hear when you just want to curl up in a ball and sulk in self-loathing. But, I know that you (and all of us!) were not sent to earth to be miserable.

            So if you are going to walk away with anything from this post; let it be this. Be vulnerable. Ask for help, feel love through the help and look for the good. I know you can do it!

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.