Saturday, March 9, 2013


Through this journey we have witnessed so many unexpected things. Many caused heartache that will forever scar us. Our family was separated for the health of our heart child when our local hospital was no longer able to care for his complex needs.

At times we often wondered how we would pull through this, how our son would make it through all of the extreme procedures he went through. He has been as close to death as one could be, and our family hung on the balance like a teeter totter, just waiting for news.

Days passed, sometimes his health could change in minutes, so we also struggled with the fear of "is our child going to be one that is lost to this terrible defect?". I have witnessed so many times parents by their childs side day in and day out, health changing up and down and they suddenly lose their precious little ones after all of the fight and pain endured. This still weighs heavy on me at times, because unfortunately I have also witnessed families whose little ones were doing wonderfully. They would be laid down for an afternoon nap, only for their parents to discover they have passed when they go to check on them. The unimaginable, the parents WORST fear hangs closely to our family daily. Its something true that we could face, at any moment.

We don't let this stop us from enjoying our happy times. Our moments of making memories. Recently we were finally able to bring our baby home. After five long months in the hospital, two open heart surgeries in 4 months, the first resulting in our son being placed on life support, brain bleeds, seizures, feed intolerance (multiple times), on and off of a ventilator or some kind of breathing support, infections, extreme swelling. Medically induced coma. After his first surgery he was almost unrecognizable. Our family was divided shortly after his birth and first surgery. I went four months without seeing my older children.

This journey has been filled with difficult decisions throughout. Beginning with deciding to fight for our sons life. We also had to decide to allow our older children to go with grandparents so I could be at the hospital with waylon during vital moments, and to ensure that they had the best care during all of this. On December 5th I traveled out of state to Ann Arbor Michigan to the #4 top rated hospital for pediatric cardiac surgeries. So once again my husband and I had to make yet another life changing decision. Our previous hospital had recently decided to re-evaluate their heart program and informed us that our son was in heart failure and that they could no longer care for him, especially since he was so complex with his other problems. We had mere days to decide, and so much to take into account. Our family was once again torn apart, my husband and I who are eachothers backbones and shoulder to lean on were now being split apart, because unfortunately life still goes  on around you while you have a sick child, bills still need paid, your other children need fed and need a home to live in and a home for our fragile son and I to return to. But we had to choose a place that could take care of all of waylons needs, and ones that may arise. Like heart transplant. Our state only had one other hospital that treated pediatric cardiac patients and they had recently stopped their transplant center. And we wanted something seemingly close, so Boston and chop (the best in pediatric cardiac) was to far away, especially for traveling back home with a child who couldnt be around to many sick people, making airplanes extremely unsafe for us. Even more so with the flu and RSV season on the rise.

We chose a center that deals with kids like our son on a daily basis, and are also ranked #21 for neurology. They offer transplant. And we knew families from back home who had went to them with their children and had great outcomes. Some people questioned our decision on the center since it was so far away and I wouldnt see my other children or vice versa..... they wouldnt see me. All around christmas!! This was not planned in our heads when we were diognosed, we thought we would all be together, be home way before christmas and better yet, have christmas together. But decisions had to be made and quickly for the well being of the child we had fought so hard for. We werent turning back so once again we made a tough decision.

Days went by. Time was spent talking through a fuzzy skype feed. Christmas morning was nothing near what we were use to. My heart broke into a million pieces watching my older babies open gifts without me, and that our littlest baby was to sick to be home to enjoy being around his family. I wanted to be with them, but I needed to be there with Waylon. I felt torn on the inside. Even though I knew I was were I had to be.

Waylon would begin to do better and we would get close to going home and then something else would pop up.

Before christmas we thought we would make it home just in time. But at Waylons discharge echo a blood clot was found in a major part of his heart. They were contemplating going ahead and sending us home and having us on blood thinners to keep it from dislodging, which would have been fine. Until later that night blood in his stools became apparent something more was going on. They felt he had what is called NEC.
So like a slap in the face we were handed with another week or more of care along with stopping feeds to do a seven day course of antibiotics. So while others enjoyed their christmas I was not only away from my family and my beautiful childrens smiles on christmas morning, but I had to console a starving baby because he hadnt hit 3 days yet (hunger pains go away after 3 days, yet another terrible thing families like us have to experiance and know).

Things like this continued to happen, intolerance of his feeds, fluid around his lungs. We didnt think we would ever get home. We finally got to a good spot and all looked well. Everything was taken care of back home with cardiologists, pharmacy etc. But I still felt something was coming, something big and I didnt know what. For days his oxygen saturations kept dropping and he continued to need more oxygen support.
Then the dreaded talk came into play..... the second stage surgery. He had outgrown his shunt placed in the first surgery and we had to make the choice to put him through another surgery.

Choice. Funny word in all of this, because we have never really had one. Its all been made up of must-do's. January 15th 2013 signed consent once again for our son to be hung on a balance of life and death. To be packed on ice,cut open, put on a heart/lung bypass machine and a life saving operation performed. The first time was difficult, he was a tiny baby whom we hadnt had time to really meet or see. He was fragile to sound, light and touch. Heavily sedated. But now we held this baby boy who had a personality, who smiled, who knew his mommy as comfort.
Surgery went extremely well, even better than the surgeon expected from his list of complications from the first surgery. He was extubated the next day and continued to do well after. And once again we hit that roller coaster we know so well of being close to going home and then getting stuck at the top for a while when waylon developed an infection in his closed wound.

But he pushed on, and so did our lil family awaiting the time when we would all be back home. It was all long awaited. And we finally got that day. February 15th we were discharged for the first time since Waylon was born.

The day of discharge was unreal, I was excited but scared at the same time. I had been present in every piece of care for this little one during our stay. Learned everything I needed to. But now we would be flying solo. For 5 months I helped nurses with the care of my son and then was comfortable doing most on my own, but we were still in a hospital setting, with nurses right outside in case something happened.

I also felt relief. The day before discharge he was taken off ALL monitors, this was a first. I had a "free" baby. I had never been able to pick him up from his bed without having to watch for multiple attached chords leading to a monitor, a lifeline. Checking his every breath, heartbeat, oxygen levels. I had a glimpse for the first time of life at home and our new norm. I was ready.

Waylon has been home for a few weeks now. He has continued to do well. He adores his siblings and they him. He has found a new best friend in his daddy and I see a light in my husbands eyes like no other. The way he loves our son with all his "flaws" as others would call them, reminds me daily why we married. Through all of this our family has stood strong. While others have tried to knock us down and have waited to see us fail, we pushed through the rubble and built our own normal. We stuck by eachother and have grown stronger than I could have ever imagined. Waylons half of a heart completes our family.

Care for Waylon is on going. While moms are devastated with their childrens immunizations, I have to inject Waylon twice a day with blood thinner in hopes that his clot dissolves and doesnt dislodge. I have to hold him down for multiple needle sticks in an attempt to get a blood draw. And with limited access from his heart condition making bad veins and blood flow and from the hundreds of IV lines, PICC lines and central lines, there isnt much left to draw from. Many moms pray for naptime to come so they can get a rest. I pray that my son will wake up from his nap. I have to keep a constant fear in order to keep a realization of what could happen. But I also have to keep it running parallel with good thoughts and moments of making memories. Because if God forbid it be his time. I dont want to look back and the only thing I remember is FEAR, and the wasted time on it that could have been spent making a memory.