Sunday, March 1, 2009

Reflux Sux.

So, I'm a little emotional today. It probably wasn't a good idea to read blogs of other people's losses. It only reminded me of my own personal hurt. I guess now, while I'm already upset, would be a good time to tell you about my Jayden. Our Jayden.

In an earlier blog I briefly stressed to you the importance of having a second opinion if your child has reflux. But I never got to go into detail why. As luck would have it, when we had the quads, all three of the boys were born with the most terrible case of reflux. The first 2 months that they stayed in the NICU, it wasn't really obvious. They were tube fed for awhile until their vitals and health was more stable. Well, they were born healthy babies, but being preemies delayed their progress some. Once they were able to be bottle fed, the reflux started to show. It was still very minimal though. That's because they were only eating an ounce or two at a time. Before they were released, they had to go through lots of tests to make sure the reflux wasn't serious, and that they could keep their food down. Morgan, Kyle, and Devin were the first to come home. Jayden was still small and they wanted to keep him a few more days. But he came home the week after. The first night, the very first night, Devin had what we would later nickname as, an "episode". An episode was when they would throw up projectile vomit. Only sometimes, it would
result in them inhaling the vomit and choking on it. Choking to the point it knocked them unconscious. They would turn blue and their noses would start to bleed. All we could do to save them was call 911 then proceed with CPR. We've had to do CPR on each of our boys at least three times. Each time was life threatening. The ambulance soon learned the route to the house & knew when they got a call from us, they needed to get there immediately. All three boys went back and forth into the NICU for the next 2 months. And every time it seemed to get worse. We had Morgan, Devin, and Kyle home, and Jayden was finally coming home after his last episode. But before that, we had a meeting with the head of NICU. He wanted to talk to us about the severity of the reflux. We asked for this meeting because we had lots of questions. Why was this happening, and what could we do? We had heard about a surgery called a Fundoplication, and asked him about it. He assured us that was not the right route to take, and the boys would grow out of it by the time they turned one. The surgery was a big step and would have complications for them later in life. Which was to no longer be able to vomit. He thought we would regret that decision as they got older. We trusted his every word. And that is what we regret. We finally brought Jayden home on Thursday night. August 17, 2006. I'll never forget Friday morning. I was ecstatic to finally have all four of them home at the same time. Two months old was the last time we had them all home like that. Then due to episodes, it seemed that when someone was coming home, someone was going in. Until that Thursday night. Thursday night they all slept together. Friday morning my husband and I were on cloud 9. Basking in the glow of seeing our miracles all together. We took a few pictures of them all sleeping and I said I'd take more later. I never got that chance. And I hate myself everyday for it. I remember holding Jayden and Kyle. We were on the couch playing, when it happened. Jayden vomited. Alot. My husband jumped up and got the suction machine ready to help clear his nose and throat. But this time it was different. It didn't work. He started to turn blue. Then came the nose bleed. I knew what was next. CPR. I lay him on the floor and proceed with CPR while they get 911 on the phone. But this time it was different. Like he knew he was going to die. I'll never forget his face. He locked eyes with me, and stared at me the whole time. His eyes were piercing. They intimidated me on more than one occasion. They had a power about them. It sounds weird, but it's true. I felt so helpless. I just kept doing CPR, but I couldn't get his breath back. Why can't I do this? I've done it so many times before. They always start breathing by now. Why won't he breathe? My mind raced as I tried desperately to save my baby. I could see my child dying. He couldn't breathe, and he just stared at me while I tried and tried to save his life. The paramedic soon arrived and pushed me to the side and took over where I left off. He couldn't get him to breathe either. Jayden lay there with a lifeless body, but still alive. And NEVER took his eyes off me. Those eyes haunt me to this day. Paramedics were still doing CPR as they whisked him out to the ambulance. That ambulance didn't move for a while. That alone scared me. So you can imagine my relief to see it drive away. My husband followed them. I knew Jayden was in big trouble. But I wouldn't believe it, and I convinced myself this was just another episode, and he was just going back to the NICU, then would be home. Just like the other times. I was in denial. I kept my mind off the worst by folding laundry, cleaning, or talking on the phone. But refusing to talk about Jayden. My husband calls me an hour later to tell me he still hasn't regained consciousness and they are still working on him. He'll breathe, then stop. They are having to breathe for him. My mother in law comes over to help me with the others. I still won't let my worry show. I keep busy. My husband is not checking in regularly. I took that as good news. So did mom. She left. My husband calls to tell me my brother in law is there with him. Which makes me feel a little better knowing he isn't alone. I had an opportunity to go to the hospital with him. But something held me back. Perhaps God. My husband tells me that a team from Texas Children's Hospital has arrived to transfer Jayden to their hospital. He tells me that they're putting him in the ambulance now. He'll call from Texas Children's. This was good news. Heck, this was great news, Texas Children's is the best. He's gonna be all right. 10 minutes later, the love of my life, has to make what was probably the hardest call ever. To tell me, "We lost him. He's gone." Shock took over. I was still in denial. "No, no, no, no, NO! No he's not!" My screams were piercing. Neighbors later told me they could hear me from inside their house. I couldn't believe it. This wasn't happening. This is not how it's supposed to turn out. Keldron explained what happened. As they were loading him into the ambulance, he stopped breathing again. The doctor had to puncture his lung with a straw like needle to help get air to it. That held him for a few minutes. But he stopped breathing again, and they couldn't revive him. And through this hard news, I'm home alone. I'm getting the worst news of my life and no one is there. No one to hug me, comfort me, or help me. I begged Keldron to hurry home. When we hung up, my denial turned to rage. I looked around and could see my denial everywhere. My clean dishes, my straightened bookshelves, and even the now organized baby room. I was pissed at my denial. Had I not been in so much denial, I could have prepared myself for this. I tore my denial up. I broke those dishes I'd cleaned, instead of worrying. I knocked down the books I'd straightened, instead of talking about it. I destroyed the baby room I'd organized, instead of praying. Then, I just sat in the middle of the floor and cried. I forgot I had three more children that needed me in the living room. I didn't even care. My oldest children arrived home minutes after that call. I had to tell them. Their worry for me is what calmed me. My 8 yr old told me, "Don't cry mommy. Jayden can see you. You have to show him your happy cause he's gonna go with Jesus." The very same thing I told him when his turtle died. Every grieving parent knows how my next week went. Not having the strength to get up. Nor to eat. No more tears to cry, but was still crying. I was tired of being comforted by visitors I didn't want. I was negative on every level and wasn't afraid to show it. But not toward God. Not once did I ever question Him why. Because I know that there is a God, and He has a reason for everything. The day of the funeral was the worst, and the best. It was hot and humid that day. The worst day for a funeral. I couldn't believe I was burying my baby. When it was time to leave his coffin, I just threw myself over him in a last ditch effort to have one last hug. I wrapped my arms around that coffin and cried to him, and told him just how much he meant to me. I didn't want to say goodbye, but I had to. It was time. And as we were walking to the car, it was as though Jayden gave us a sign that he was alright. A sign that he was with the Lord. My husband and I turned back one last time. My husband hugged me and held me tight. At that moment, there was the most peaceful silence. And the coolest breeze came rushing through. It was like we knew he was trying to tell us goodbye. I cried again. But it was a different cry. An almost joyous cry. I felt a calmness come over me. And I could literally feel the weight come off my shoulders. I felt light, and airy. My husband said he felt the exact same way. From that point on, I have had nothing but a positive spirit when it comes to Jayden's death. I know God needed him to be home. I mourn, I cry, and I miss him, but I know He had a reason. And I Thank God for choosing my child. His child. Because this has given me the strive and passion to be a better Christian. To live right. So that I can make it to the gates of Heaven, to be with my baby Jayden again.

One week after Jayden's funeral, Devin had an episode. It was not a serious one. But now, the NICU decided to take no more chances. an said bring Kyle in too. They were going to give them a Fundoplication. When Kyle got there, he went through many pre-op tests. They discovered his lungs were 75% full of fluid. Had Devin not had an episode, and been rushed to the ER, which prompted the decision for surgery, Kyle would have died the same exact way as Jayden. If your baby has reflux, or your friends baby has reflux, or even if your neighbors baby has reflux... please point them this way. Or tell them how, what should have been a simple case of reflux, took our baby's life. If their doctor told them, "he'll grow out of it". Take him to get a second opinion. My husband and I took it upon our self to call a G.I. doctor. Deep down, we knew that thes repeat episodes were not normal. Even though the NICU doctor was confident he would grow out of it. His appointment would have been the day of his funeral. Our pediatrician never got to treat Jayden while he was in NICU. But he studied his case well, and visited him many times while he was in the NICU. Even he is angered to know something could have been done sooner. He his angered to know it was brushed off as simple reflux. Even though it hospitalized each boy on more than one occasion. He explained to me that he passed from asphyxiation. He suffocated from his own vomit. Jayden's lungs were full to the top with fluids from vomiting so much, and inhaling little by little. And that when they attempted CPR that last time, there was no more room for air. Had we followed our instincts, and gotten that second opinion sooner, Jayden might be here with us today.


Kacey R. said...

Wow. I have no words except to say how sorry I am that you have been through this. I have NEVER heard of the condition you are talking about and EACH of my children had reflux. And we were told EVERY time they would "grow out of it." I am sure this was a painful post to write, however, I am sure you will touch someone with the knowledge you are able to provide. Thank you for being so generous with your story. Your family is beautiful.

Angie Ledbetter said...

Knowledge is power. My prayers to you.

Stacy Quarty said...

Thank you for sharing this most personal and moving story. It's a great gift.

Emily said...

Thank you so much for sharing this. I'm so sorry for your loss. I have friends who's kids do simply have reflux, no aspiration involved. Then I have other friends who's kids have reflux and aspiration yet they have heard so many negative things about the nissen fundoplication that they wont do the surgery. My own daughter refluxed and aspirated so badly that she was dependent on a ventilator for the first year of her life. The nissen was a life saving surgery for her but the side effects she's suffered have been difficult to watch.

Thank you for giving me a story to point friends towards to help them see that aspiration is not something to take lightly at all. Reflux is one thing, aspiration is another. Once again I am so so sorry for your loss.