First of all, I'm going to start by updating everyone with what has happened the last 5 years since my last post. In the last 5 years my husband, Matt, and I welcomed our 4th child to our family. We had a little girl named, Hadley. She is now 3 years old and is feisty but also very sweet. We love her so much!
I've never really felt like I was a good writer, so I haven't kept up on blogging. I have always been scared to be vulnerable in a public place. I shared many years ago that we lost our 7 month old baby, Porter, but lately I've been feeling the need to go into more details of everything that went on during that time. I feel like this can bring healing to myself and maybe help anyone else that has also lost a child. I hope it can help them to not feel so alone because it really can feel so lonely at times. I'm going to start back when our little Porter was 3 months old. At 3 months old I noticed his eyes were always red and splotchy around his eyes. Some people thought maybe it could be allergies, but the doctor told me its very uncommon for babies to have seasonal allergies. After a couple weeks I noticed that when I would pick him up from his naps that he didn't want to open his eyes. I would tickle him to try and get him to open them and he eventually would. I just knew deep down that something was wrong. I took him into his 4 month check up and the doctor said his eyes looked a little clouded and told us to watch him and make sure he was tracking things with his eyes. I left that appointment and just knew we had to figure out what was going on. I couldn't just wait this out to see what was going to happen with his eyes until his 6 month appointment so I made an appointment to go back to his pediatrician the very next day. I ended up seeing a different doctor and he sent us to an ophthalmologist because the retina in his eye wasn't as red as it should be. That ophthalmologist sent us to Primary Children's immediately because he had infantile glaucoma. Dr. Norman Zabriskie is the best in Utah and he scheduled Porter with eye surgery just a week after seeing him. Porter had to undergo surgery twice but we had to return week after week for him to go under anesthesia to make sure the pressure in his eyes were in a normal range. If we didn't the chances of him going blind was really high. I remember not being able to sleep at night and would be crying researching everything about infantile glaucoma. I struggled so much with just the thought of him going under eye surgery. I knew there were worse things in life and that he had a good chance of not going blind with the surgery. After one of his surgeries I remember driving back home with Matt and I was thinking about this trial we were going through and I got this feeling that there was worse to come...that I was going to have even harder trials in life.
In May 2013 just a few weeks after his first two surgeries I was holding Porter and a thought came to my mind that I wasn't going to have Porter for very long. This feeling came with a lot of peace and comfort. Once the feeling of peace went away I wondered why I would ever think something like that. I tried to brush it off and told myself that everything would be fine. In June I decided to go visit my sister, Sabrina, in Las Vegas. I asked Matt's sister, Emily, if she would go with me so I wouldn't have to do the drive alone since Matt couldn't come because he was at work. About 20 minutes away from my sister's Porter started to get really fussy but I figured it was because he was tired of being stuck in the car seat. After we got to my sister's house I noticed he developed a fever. It was a low grade fever so I treated him with Tylenol. Over the next two days his fever came and went and we had sleepless nights with him being fussy. I had decided if he was still not better that morning then I was going to go home early and take him in to the doctor. That morning Porter woke up so happy and his fever was gone and I noticed his first tooth had popped through. I thought that his fevers were do to teething since he didn't have any other noticeable symptoms. At that point I decided I would stay at my sister's one more day like I was originally planning since he was doing better. As the day went on I could no longer get Porter to nurse and his fever came right back. I called my brother, who also lives in Las Vegas, if he would come over to give him a priesthood blessing with my sister's husband. Right before bed I changed his diaper and it was completely dry. I noticed his eczema was also getting really bad so I put some creams on him. I tried to nurse him to get keep him hydrated but he started gagging every time I tried. I started panicking because I just felt like something was really wrong. I called the on-call nurse and she didn't help at all so I woke up my sister and told her I needed to take him to the emergency room. Matt's sister, Emily, came with me to the emergency room. The doctors took x-rays and took vials of blood. They noticed he had a double ear infection so they started them on antibiotics and IV's. They said by morning he should be good to go home. Around 6 o'clock in the morning the doctor said they aren't really a pediatric hospital and decided they wanted to send us to a different hospital that was more centered around pediatrics just to watch him a little bit longer before discharging us. They took us by ambulance to the other hospital without the sirens because it wasn't a life threatening situation. As soon as we got to the other hospital the E.R. doctor looked him over and commented on his eczema and how bad it was. He went on to explain to me how uncomfortable that is and that I needed to put vaseline on him. I felt like he thought I was neglecting my child and wasn't taking care of it. I told him I had put creams and vaseline on him just hours before. As I sat there watching Porter I noticed his eczema spots were getting worse by the minute. After a little while I asked the nurse if it was okay to try to nurse him. She said to go ahead and as I tried he refused to eat. He didn't want to be held so I laid him down on the bed and noticed that his leg started twitching. It was very rhythmic. I showed my sister-in-law and she saw his eyes roll back. I yelled for the nurses to come and look at him because I was pretty sure he was having a seizure. All of a sudden doctors and nurses were everywhere putting him on oxygen and giving him medicine. I called Matt and told him he needed to hurry and fly down. I needed him so bad! I called his Mom right away and asked if someone would take him to the airport.
The doctor at the E.R. said they needed to perform a spinal tap on Porter to see what was causing his seizures. He told us to go get breakfast and to come back after we were done to see Porter. As we were walking back a nurse pulled us aside and told us to follow her to the PICU (Pediatric Intensive Care Unit). They had moved Porter there because he had turned blue on the table while they were performing the spinal tap. As soon as we got to the PICU a couple nurses/social workers grabbed a box of tissues and took us to a room in the back. This is when I really felt like I was dreaming. This is the kind of stuff that you only see in movies...this doesn't happen in real life. We went into the room and they sat both Emily and me down. I looked at Emily and she was sobbing uncontrollably. I wasn't crying...because I literally felt like I was in some horrible nightmare. I couldn't believe this was real and that it was happening to me. The ladies that sat us down and asked if Emily was the mom. I told them that I was the mom...I'm sure they thought she was the mom since she was the one crying. I thought something was seriously wrong with me because I wasn't crying. Looking back now I am realizing I was in an extreme state of shock. They told us that Porter was very sick and they didn't know if he would pull through. They had no answers as to why he was so sick. They were testing and researching everything that could be wrong. The E.R. doctor came up and "apologized" for kind of blaming me for Porter's condition and said he didn't know this was going to happen.
The word quickly spread through both sides of our family. My brother, Mike, called and asked how I was doing and what was exactly wrong with Porter. As soon as I told him what was going on I just started crying. For some reason telling someone about it made it so much more real. We weren't allowed in the room with Porter so I sat outside of the room watched him through the window crying. He was unconscious and I could tell by the minute he was swelling more and more. The "eczema" spots on his arms ended up being lesions where the blood was puddling in his arms, legs and fingers. This happened because his blood vessels were so thin that the blood was basically spilling out of them. My sister picked Matt up from the airport and brought him to the hospital. Lots of family members drove down that night. That night the doctor said that Porter was stable but we weren't out of the woods yet. Matt's family was feeling better now that he was stable so they all went home. The next morning the doctor said Porter wasn't emptying his bladder so they transferred us via ambulance to a different hospital. One that specializes in dialysis and that has a burn unit. They needed the burn team to treat his skin lesions as if they were like a burn. A few days later they did a CAT Scan to see how his brain looked. The images came back showing he had bleeding. They said the images showed that where the bleeding was in his brain would probably make him deaf and it could affect his vision. I just cried and couldn't figure out why we had to go through all of his eye surgeries just to have him go blind with this horrible infection. Doctors finally came to the conclusion that Porter had a bacterial infection that lead to septic shock and meningitis. They took Porter off of sedation and waited to see if he would wake up.
Every morning was one of the worse parts of the day. It was like I had woken up from a nightmare only to realize that this was real life. That my baby really was in critical condition in the hospital. I would scroll through all of the pictures on my phone just took look at him before he got sick. I feel like a lot people thought I was holding all of my emotions in, but I just tend to be more private. As soon as Matt and I would get into the car I just cried. I was able to hold it together long enough to be alone with Matt to just cry and to not worry about anyone watching me. As we were at the hospital with Porter I thought back to the time I had that feeling that I wasn't going to have Porter for very long. I told Matt about it and I was afraid he wasn't going to pull through. Even though I had this feeling we were still so hopeful that he was going make it through all of this.
Matt had taken almost two weeks off of work so I told him to go ahead and go back since Porter was stable and not much was happening at the hospital and we would figure a system out. For all we knew Porter could be in the hospital for months. He went home and the very next day (day 13 of being in the hospital) the doctor said they needed to do an MRI on him to see why he wasn't waking up. I called Matt and told him I just knew the news was going to be bad. I needed him to come back. I went back to my sister's house and prayed and I just cried to Heavenly Father. Asking how the heck am I supposed to attend my own child's funeral. I prayed that he would help us get through this. There was no way I could do this on my own without him. I needed him so much! Matt and his Dad made it back in time to meet with all of the doctors. I also had my brothers, Mike and Steve, my sister, Sabrina, and my parents there. The doctor said Porter's brain had bled so bad that if he were to survive and come through this he would basically be a vegetable. He would need a trachea to breath, he would lose all the tips of his fingers in one hand, he would've been put through multiple skin grafts to replace the skin that died from the lesions. He was probably blind, deaf and wouldn't be able to walk. They basically told us that they can keep him on life support for however long we wanted him to be but that we could turn off the machines and let him go. We both felt like we need to let him go and to return to our Heavenly Father. He needed to go back home. We waited two days to try to come to terms with this before we decided to pull the plug. A photographer came in and took pictures of us holding him and so we could say our last goodbyes. He passed away 3 minutes after they turned off the ventilator. I held him for almost an hour. It was the first time I was able to hold him since he got sick.
We left the hospital without our baby. I cried daily while Porter was still alive and right after he died. I went numb. I went so numb that I couldn't even cry anymore. I thought something was wrong with me. I felt like I was dealing with all of this so different than what you would normally see. I briefly told one of my brothers and he said it was because I was in complete shock. Its the body's way of trying to deal with something so traumatic.
It was funeral day! I still don't know how I got through that day...but I know it was mostly because of Heavenly Father. On the way to the funeral Porter's ophthalmologist, Dr. Zabriskie, texted me telling him he wished he could be there and prayed for our family. He called us every few days to see how Porter was doing and to check in on us while he was in the hospital. He is one of the best doctors we have ever come in contact with.
About a week after the funeral I prayed to Heavenly Father asking him to continue to help me. I asked him to help me to see his hand in my life because I needed it so bad. The next day a lady who lives across the street from my brother, Tony (Matt and I used to live in Tony's basement apartment before we had Porter), called and said flowers had been delivered to her that were for us. I barely knew this lady even though we were in the same ward and neighbors. This was a year and a half later after we had moved from my brothers house. I was surprised she was even able to find my number. The next day I went to her house and picked up the flowers. I quickly told her we had lost our baby and she had no idea. She said she had a book and wasn't sure how she even got it and handed it to me. It was a book about losing a child and how to grieve the loss of a child. I walked to the car where Matt and Carter were waiting. I showed him the book and I just knew this was Heavenly Father showing me he was still there and that he was going to help me through this process.
I felt like we had people there for us right after Porter died, but just two weeks after the funeral it was just us. People slowly stopped reaching out. It felt like people thought the worst of it was over and so they didn't check in anymore. I needed people even more those following weeks and months. I know people don't always know what to do in this kind of a situation, but I just appreciated it any way people reached out. One thing that I want to put out there is I know its scary to bring up loved ones that have passed away, but it means so much when people do. It helps us to know that our child has not been forgotten. It doesn't bring up the pain of losing them because we have that pain regardless. If you don't know what to say just ask us to tell you something about them. For me I hesitate to bring it up because I know its an uncomfortable topic for people. I know people don't know what to say when they hear that I've I lost my 7 month old baby. It doesn't bother me that people don't know what to say. It's just nice to be able to talk about Porter and I know most any other Mom or Dad would love to just be able to talk about their child. It's healing to talk about them. It also makes it feel like they aren't so far away. I do want to put out that that we have had so many tender mercies since losing Porter. What I do know about going through this trial is that Heavenly Father is there! He is real! I know its hard to see his hand in your life when you are going through some really dark times, but if you ask him to see his hand in your life that He will show you he is there and that he hasn't for gotten you!! You are never alone!
Vickie
