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.