Douglas Edward Vermilya Jr. Aka “Mister Junior Bug”, was born on June 27, 2011. He was born with three congenital heart defects or CHD’s. Congenitally Corrected Transposition of The Great Arteries (LTGA), a Ventricular Septal Defect (VSD) and Pulminary Stenosis. He spent the first 36 hours in NICU for observations and we were sent home on the third day for our first happy home coming.
Douglas was a challenge. From the moment I found out I was pregnant with him I knew he would be the greatest challenge of my life. It started out minor enough with back pain, insomia and severe carpal tunnel during pregnancy. I spent the last few months with constant heartburn, his constant hiccups and his head….lodged firmly under my ribcage. It went to a whole new level when we found out about his heart defects at our 20 week ultrasound and we entered the terrifying world of congenital heart defects.
In every way, shape and form it continued to be true. With each day that passed, he was stubborn to the core. If it wasn’t his way, he didn’t want it and everything I thought I learned about motherhood in the previous 12 years spent raising my daughters went out the window. He was also the sweetest little boy I had ever seen and I was head over heals in love. He was born with a full head of hair that stood up on end like it was spiked with hairgel. No matter how hard I tried it just stood up on end, it earned him the nickname rockstar at his first cardioligists office and everywhere we went people just fell in love with him.
At one month old he began showing signs of congestive heart failure and was placed on two diuretics to shed the excess fluid from his lungs. His first month of life was his only time spent free of medications. Much of his life he thought of them as little treats and would open up like a baby bird eager to take them. It wouldn’t always be that way though.
At four months old he had his first heart catheter to determin the extent of all his defects. It was decided then, for sure, that we would go ahead with the Double Switch or DS. A risky operation, but one that our family and his team of doctors thought was the best choice for him. So, it was decided that a band would be placed around the pulmonary artery to prepare his heart for the DS and that banding would be done the following February.
Over the next few months life was quiet. Our Junior Bug’s personality was really starting to take shape. He had a strong love of music with a few of his early favorites being “Goodnight Sweetheart” by The Spaniels, “I’m Yours” by Jason Mraz and “Upside Down” by Jack Johnson from the Curious George movie. One of his many movie favorites but also more than that. Curious George was his idol and his best friend. He had his own George that he carried with him everywhere. He slept with him every night and George went with him to every appointment, test or procedure. The quilt I made for him had a curious george print for the backing fabric and when I had started making it, I searched multiple stores for any fabric that was George, with no luck, and was giving up. I had settled on another fabric, I’m not even sure what it was now but, I remember waiting for my turn at the cutting counter and was still browsing through fabric when I spotted it. It was Curious George with ABC’s, blocks and balloons on it. I cried in the middle of Joann Fabrics. Tears swelling up in my eyes. I got a few wierd looks and a couple of smiles from long time crafters who recognized what had just happened, because it was perfect. He was gonna love it and I was the happiest mamma on the planet.
It was perfect. He loved his blankie more than anything.
February of 2012 brought a new set of challenges as we prepared ourselves and our 8 month old for the PA banding, his first open chest surgery. It was decided that we all would be there that day. His big sisters insisted on being there. Knowing full well we would be up and in the car by 4:30 a.m. and that they would be there most of the day. I would stay at the hospital with Junior and my husband (who had taken the week off of work) would go home with the girls. He would get them off to school and then head up to the hospital (an hour and fourty-five minute drive one way) to be with us for the day. Then home to get dinner for the girls and keep the house moving.
The big day came and everything went beautifully. We had a few issues adjusting his pain/sedation meds which kept his heart rate running pretty high for the first few hours and made me a wreck watching him so uncomfortable. It was the longest and scariest day of my life. Recovery went quickly after that. He was sitting up the next evening and was released 3 days after that. We spent 4 nights and 5 days there total and surprised the girls when we beat them home from school that Friday. He was so happy to be home and seeing all of his own things. It was our second happy homecoming.
Life after that was pretty normal for the most part. Cardiology checkups were every six months for the next 2.5 years while we waited for him to be ready. Our biggest medical challenge during that time would be the inability to sedate him for his echocardiograms. Despite all efforts of the sedation nurse and maximum doses of meds he just wouldn’t go out. We gained a friend in that nurse and he became HER greatest challenge. She affectionately referred to him as her nemesis and he would smile ear to ear whenever he would see her.
Time in between appointments was spent enjoying our family and watching them all grow. Junior’s love for music continued to grow as well with a keyboard we ran into for the kids. It was one of the fancy ones that has a million buttons to push and tons of preloaded songs on it. It quickly became apparent that it was His keyboard as he would turn it off on anyone else who tried to play it. Stevie Wonders “Superstition” was added to his music list after that. He loved instrumental pieces and would sit and listen intently when at my oldest daughters band concerts. Clapping enthusiastically after each song ended. Shortly after he turned two it turned into an obsession for him with a new musical love…. the Mariner Marching Band. Brianna had joined the high school marching band. He would wake up every morning, be a cuddle bug on the couch with me and his cup of milk for about five minutes before asking for a turn on my phone. I had a couple of games on there for him but it was the band videos that he wanted. He would run off and hide in his room or the kitchen or wherever he could be alone and conduct along to the videos for hours on end. He loved it. He loved so many things. He absolutely adored his sisters and they him. They were like mini moms with him and he took his role as little brother very seriously and drove them nuts every chance he got.
He loved balloons and his toy cars and bubbles, but preferred for you to blow them for him. He lit up every time he saw our car and would drive me crazy asking to go bu bye. Whether it was a stroller or a golf cart or a wagon… he wanted to go for a ride. It didn’t matter where you were going just as long as he could come along. His favorite rides though, were around the yard with his Dad on the mini bike. Some days they would ride so long he would fall asleep. The only thing that could come close to topping the mini bike was the water. Whether in the bathtub, at the beach or in the kitchen sink he could play in the water for hours on end.
He was a happy little boy who made everyone around him smile. Now, he could be a stinker bug too, don’t get me wrong he had his moments. Some days he would make you want to pull your own hair out as he threw a fit because he just wasn’t in the mood to say “more milk please”. Crying, yelling and refusing to ask and then turn around 20 minutes later, walk up to you and smile and say “more milk please” like nothing had ever happened. Or when he wanted to “help” mamma clean the carpets and squirted half a bottle of dawn dish soap in the living room. I still get suds in spots if I do just a water rinse with the steam cleaner.
He had a special knack for making my heart melt though. That precious smile and those big blue eyes and the way he always wanted to sit and be my cuddle bug every chance he got. I was completely smitten with him and him me.
We rang in 2014 with his regular cardio checkup. The echocardiogram showed not much of a change so it was decided that at the end of July the doctors would do another heart catheter to determine where he was at. If he was ready we would do the DS the next day. If not, then they would tighten the band a bit.
The weeks leading upto the surgery were pretty hectic as we celebrated his third birthday, took a quick trip to visit my husbands side of the family up north and made arrangements for everything that needed to be taken care of while we would be gone. I was planning on staying at the hospital with Junior again and if they did the switch it meant roughly a two week stay and being prepared for the possibility of longer.
Junior and I went to the hospital on July 22 for his pre-op testing and he was amazing. For the first time ever, he didn’t fight or fuss at the nurses or techs. Anything they asked he said OK and let them do what they needed to do. He helped all the docs listen to his heart. He would stick his arm or leg out for blood pressure readings and we would count while we waited. He loved numbers and you could always distract him with counting. I had never been so proud of him and we headed home, me with higher hopes of a less frustrating hospital stay.
The following morning, Junior, his Dad and I headed down to the hospital for his heart catheter and he was to be admitted to a room afterwards for us to stay the night. All went well and showed he was ready for the DS and after several hours of trying to keep a half drugged toddler from moving, we were finally taken to his room. Which, was strategically located directly across from the play room (they knew we couldn’t contain him any longer) and that was where we spent most of the remainder of the day. We watched him laugh and play and jump and run. We ended the night cuddled up in the bed watching Finding Nemo (one of his absolute favorites) and hoping that tomorrow would go well.
We woke the next morning and headed straight over to the playroom while we waited anxiously to be taken to pre-op. Getting in as many hugs and kisses and smiles and cuddles as we all could before handing our little boy over, with George and his blankie in hand, to the surgeon for a 6 hour open heart surgery that would change our lives forever.
The surgery went well. Not just well, it went perfectly. His numbers were great. There wasn’t much swelling so they had even closed up his chest right away (sometimes leaving it open to relieve the pressure from swelling) and we were on cloud nine making nonstop phone calls to tell everyone the wonderful news. We had the usual issues of playing with the pain/sedation meds, though not nearly as bad (they knew him well enough by now), and we were settled in for a relaxing evening. About 8:00 that night his blood pressure started to slowly drop. They played around with meds for a bit and by midnight had decided to open his chest back up to relieve the pressure and get his numbers back up. It worked for a couple hours and they began to fall again and by 4:00a.m. it was decided that they needed to put him on ECMO (a type of life support) that would take over the work and allow his heart to rest up a bit. Adding the ecmo equipment and all that needed to be done with it, I couldn’t stay bedside with him at night but was able to get a room in the ronald mcdonald house that is on the same floor which was a blessing.
He spent 5 days on ECMO, recieved countless blood products, had to be restrained and put on even higher doses of meds to keep him from trying to move and from pulling the tubes out of his chest. He was so strong it took two nurses and the ecmo tech (a big strong guy mind you) to hold him down once because someone forget to close his restraints. On the sixth day after surgery they took him off of ECMO (but left his chest open) and he was doing well. Day nine they closed his chest up and it was time to start cutting back the meds more to get him waking up. Day ten he was moving and looking around a bit but always kept his eyes only halfway open or so.
At around 3:00 a.m. on day eleven I woke to the nurse saying my sons name with the nightshift RN and one of his doctors standing there. They told me that they had cut back on his meds and were trying to wake him up because his nurse wasn’t noticing any movement on his left side and they were afraid he may have had a stroke. My heart sank as I waited for the CT results to confirm that it was indeed a stroke. For the first time since we had arrived at the hospital, I was truly scared. For the first time(and not the last), I broke down in front of them all. Right there in the main bay of the ICU. The doctor cried with me and his nurse hugged me tight. That was the moment I knew our lives would never be the same.
It was a mild stroke and we were quickly seeing movement return but it was going to be a long road with physical and occupational therapy and possibly speech therapy but we weren’t sure as he hadn’t spoken since before surgery. It was also important for us to get him off of the pain/sedation meds to really see the full extent of damage from the stroke. But that brought another challenge in the form of severe withdrawal. We had to take baby steps with dropping him down and transitioning him over to methadone and valiuum for the withdrawal effects. Every couple hours he would start to get the shakes, his temp would go up, he couldn’t keep still, his stomach would cramp up and he would get naucious and throw up. It was heartbreaking to watch. I was helpless. The only thing I could do was hold his hand and rub his head and tell him it would be ok. “It will pass, just hold on baby, it will pass.”
Day thirteen came and things were starting to look up. He was doing better overall and we were moved to a private ICU room which meant he didn’t need constant individual monitoring. I was able to sit and hold him in my lap for the first time in almost two weeks and climb up in the bed and cuddle with him again and I was on cloud nine. He had his first session with the physical and occupational therapists together and it went well. I got to see my baby smile and heard him giggle at the pretty occupational therapist who was blowing bubbles for him to try and pop. That night I asked if he wanted a turn on my phone, he nodded, still no words. He then sat back on the bed and watched band videos and was conducting away with a vengeance. He used his right hand only but it didn’t matter to me because it was the first real sign that I had had since the stroke that my little boy was still in there. That, who he was, his personality was still the same. I went to sleep that night feeling great. Confident that it wouldn’t be long and we would be going home.
That feeling wouldn’t last for long as i woke to the next wave of withdrawals kicking in. It was around 4:00 a.m. and took about 20 minutes to work him through it, he nodded back off and I laid back down. An hour later he was up again and getting himself all worked up. We were going to have to use suction this time to help clear out the congestion in his lungs that he refused to cough and break up. He hated the suction tube in his mouth and would fight like hell to get it away. The respiratory tech was coming to help as his sats were dropping. I was asking for more help, for a doctor because something wasn’t right. We kept trying to keep him sitting up and he kept fighting to lay back when he suddenly sat upright, eyes wide open and his jaw bit down on the suction tube. The next thing I knew the code button had been hit, he was in respiratory distress and his room was filling with, well everyone. By the time they were able to get him intubated he went into full cardiac arrest. I stood and watched as they pushed med after med, dose after dose. There was one being pushed every two minutes and there wasn’t a person there that didn’t take a turn doing chest compressions on him. At some point they had asked me what I wanted them to do. How far I wanted them to go. I told them whatever it takes. They were preparing to put him back on ECMO if they could get his heart beating again and after 45 minutes….they did. His heart was beating and before I knew it the surgeon was opening his chest to start the hook up. I watched my little boy die and watched them bring him back and that’s when I knew I would never be the same.
He would spend two days on ECMO this time. Not knowing at that time what caused it all to happen, whether or not it was a seizure, meant that this time we couldn’t sedate him deeply because neurology needed to run tests and observe him. He had 100 electrodes and wires hooked up to his little head for the first 24 hours and thank goodness there was nothing.
The next four weeks would be an up and down, two steps forward one step back pattern. He had a problem with some of the adhesive from tape and bandages pealing his skin. A constant battle between constipation and diarrhea. He had two sets of therapy session each day where he worked with all three therapists at each session. He was cleared to drink thickened liquids and eat solid foods but nothing too thin. The first two days of that started well and then his appetite began to dissappear. Between all the different meds, some of which had nausea and loss of appetite as side effects and the NG or feeding tube that was still in place which added to his difficulty in swallowing it would be several months before he was eating normally again (well almost normally).
September 5, six weeks and two days after being admitted he was finally discharged. He still had the ng tube for supplemental night feedings until he reached a high enough calorie intake on his own. He was down to three heart meds twice a day each and on a wean schedual for the methadone and valiuum, each one four times a day. He had just recieved his valiuum and was pretty out of it when we said our goodbyes and loaded him into the car that day to go home. He refused to fall asleep the whole way, half nodding off and waking himself back up. It was almost as if he thought if he fell asleep he would wake up back at the hospital. Like it was a dream he was going home. He didn’t talk, he just watched out the window and played on my phone a bit. I had said to him ” I bet you’re happy to be going home” and he looked at me and said “happy” and that was all. When we turned down our street he started saying unbuckle, unbuckle. He was so excited to see his house, his room, his toys and especially his big sisters. It was our 3rd….and would be our final happy homecoming.
Over the next couple months, I put the skills I learned from my crash course in nursing to work. I administered his meds through the NG tube, four doses at 9:00 a.m. and p.m. and a dose of withdrawal meds every three hours. I would set up his feeds nightly and replace the NG tube when needed, a task that happened far more often than I wanted as it would get caught on something and ripped out. He hated it and would cry and fight as his Dad and one of his sisters would hold him down and as I fed the tube down through his nose, quickly checked the placement and then taped it in place.
His stubbornness remained in full swing at all times, as well as mood swings from the meds, as his new therapists learned. They would chuckle with me as they would give him a task to do and then he would proceed to cry and complain but do the task at the same time anyway. Like he just wanted to be clear and sure that everybody knew he didn’t want to be doing this right now. Then, as soon as it was done he was sweet as pie and running to help clean up, blowing kisses and waving bye bye to everyone. It was hard to watch though. This was a little boy who ran and jumped and crawled around all day and now his arm and leg would give out on him or not work the way he wanted them to. A boy who always held his sippy cup in his left hand and now most times he couldn’t pick something up with it. There were days he would get this look of disgust on his face as he watched his hand not working right. Like he was a broken old man.
By the beginning of November he was off of the methadone, valiuum and acting more like his old self everday. He went off of one of the heart meds as well, which was the one that was affecting his appetite. He was eating more within 24 hours and by the middle of the month his ng tube was out. He still had a few issues with some foods though, sweets and sticky foods in particular. Just the sight of a cookie was enough to make him gag and things that were sticky he still had a hard time swallowing.
December 12 was his cardiology checkup and we learned that his left ventricle function was severely depressed with no apparent cause to why. The only issues we had been having were these fits he would get into that we all thought were more behavioral than medical. They adjusted his meds and the plan was to check again after the first of the year and decide what needed to be done from there. That appointment would never come though.
On December 22 I started my day out at Toys- r -us finishing up the shopping for Juniors christmas presents while he was at home with the girls. I got back to the house around 8:00 a.m. and he was watching woody woodpecker with our oldest. I cuddled with him for a while on the couch before doing some cleaning. I was planning on going back out that afternoon to finish shopping for the girls and had just made Junior some mac and cheese. He took one bite, gagged and refused to eat anymore. He then started up one of his fits which I promptly yelled at him for and placed him on the couch until he could chill out. I went into the kitchen to put his bowl of macaroni in the sink and as I was turning to walk back in to the living room I heard him hit the floor. I could see from across the room that he wasn’t right. He was having a seizure, a first and I was freaking out. Brianna called their Dad (who was at work an hour away) while Morigan called 911 and I tried to get him to respond. CPR and mouth to mouth until the ambulance finally came and then the dreaded question… what hospital do you want us to take him to? The closest hospital to me is only about 15 minutes away driving the posted speeds, it was the hospital that I had both of my girls at, but it is one of the smallest hospitals around and one that I knew really wasn’t equipped for a case like Junior. The paramedic noticed my thought process as the distress must have shown on my face and said lets get him somewhere close and get him stable then you can have him transferred.
One of our local police officers on the scene drove me ahead of the ambulance, the girls stayed at the house, and he walked me into the hospital. I gave insurance information to the clerk as they were wheeling him in and around the corner and began working on him. The doctor came out and told me that they wanted to intubate him and that the chopper from his hospital was on its way to pick him up. As they were trying to intubate him he had another seizure. They did an ECG and it showed he had had a heart attack. They brought me back to him and did an echo which showed very minimal activity. Things went quickly after that. They shocked him and were doing chest compressions. The doc said the chopper was about 15 minutes out and then my husband walked in. Meds, more compressions. No response. Another echo….no activity….”how long has it been?” my husband asks. “About 30 minutes so far. It’s rare to get them back after longer than that.”
We knew then that, that was it. His fight was done. The chopper never landed and we said goodbye to our beautiful little boy that day. Our fighting warrior was now our gaurdian angel. Our family forever changed and now left with a new challenge….the greatest challenge of all….learning how to live each day without him.
Infinite Hearts United 