MARCELO'S STORY: A WARRIOR'S TRIUMPH IN THE FACE OF A CONGENITAL HEART DEFECT
“I just don’t like his color, I think we should take him to the nursery to be evaluated by the pediatrician,” and that was beginning of the nightmare which would be the beginning of my son, Marcelo Sebastian’s life. The nurse’s name was Sheila, she was a middle-aged Asian woman with a slight build and moderate accent. Not very impressive to look at as far as nurses go, but ultimately the person who saved my Marcelo’s life and whom I will forever be eternally grateful.
My husband Ed had left moments earlier to get me some torpedo sub sandwiches from a place called Lucci’s near our home. A sandwich that I had been craving for months, full of salami and cheeses virtually prohibited in pregnancy. I, being the pillar of health and protection for my unborn child, dared not take a bite of lunchmeat the whole nine months with the worry of toxoplasmosis poisoning. The tasty delight of a sandwich was intended for a job well done during labor. Contrary to my first son Luciano’s birth which was an agonizing 31 hours including 3 hours of pushing, Marcelo beat the time with flying colors making it into this world in just under 12 hours with minimal pushing and quite an uneventful progression.
I recall the pediatrician on duty that morning in the nursery left a very bad taste in my mouth. Immediately discounting my thoughts and commenting on very fear inducing ideas to what he thought my precious little angel might have wrong. He basically had my son in a helicopter on his way to Los Angeles on a stretcher with tubes everywhere and I just couldn't believe that. Little did I know or care to believe at the time that a mere 11 hours later that is exactly where my son would be.
I don’t remember much of the short walk over to the nursery from my room. The nurse said I should just let her take him and I should rest. That was certainly not going to happen. I knew my baby and despite him having trouble making the right breathing sounds at birth, to the audiologist mentioning his coloring during the hearing exam, and the overwhelming feeling in my gut that something was just not right, nothing could be wrong and I’d hobble with her to the nursery to prove it! I grabbed my catheter bag slid out of bed to my feet and waddled with her out into the hallway. The nurse told the doctor he seemed a little blue to her and wanted to make sure it wasn’t just the lighting in my dim room. I noticed his lips a little bit on the dark side but assumed he was like my mother. She generally wears light lipstick to tone down her lips and Ed has dark lips too, drastically different from my pale lips but I figured it was just him having a feature from someone in the family, surely it couldn’t mean anything more than heredity?
The doctor hooked him up to a machine I later would know all to well called a pulse-oximeter, which measures the levels of oxygen in his blood. It was registering a low number, however I did not understand in the slightest at that moment what it meant. His levels were around 72 to 75 percent which was low considering you and I most likely register 95-100% oxygen in our blood. I tried to explain to the doctor that the dark lips what I later came to recognize as “blue” (or cyanotic) was merely a family trait and wanted so badly for Marcelo to be ok. Even though, in my mind and the pit of my stomach called foul play I figured it was maybe something minor, no big deal, right? I mean, I took exemplary care of myself, bought expensive pre-natal vitamins, never ate lunchmeat like a good little pregnant woman, stayed away from chemicals and cleaning products, how could this be happening? Boy was I wrong, it turned out to be nothing minor at all. The nightmare continued…
They called a neonatologist from the NICU upstairs and she came in. She was able to really calm my nerves. Her name was Dr. Nguyen. I didn’t like it that the pediatrician had been so frank with me, and I repeated many times what I thought about his analysis. She had a reassuring demeanor. She put him on some light oxygen and said that sometimes it takes a few hours for a baby’s lungs to fully function. She without worry in her voice explained how often it could take up to 48 hours for the lungs to transition into the world of oxygen. I was calming every moment, but never the less panic stricken inside. She didn’t want to jump to conclusions, even mentioning the machine was possibly not registering correctly.
Another nurse named Bonnie from the NICU came down to the nursery and they started him on oxygen explaining that newborns come out with a tiny hole in their heart called the patent ductus arteriosus (PDA). This tiny hole is suppose to close soon after birth when a child is breathing air and not amniotic fluid. In PDA, there is an abnormal circulation of blood between two of the major arteries near the heart. Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, this is an essential part of the fetal circulation. After birth, the vessel called is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open. This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries. This hole is necessary while in-utero so the blood bypasses the lungs and is oxygenated by the mother through the umbilical cord. If this didn’t happen and the lungs worked while in the womb the babies would drown in amniotic fluid. They don’t take the first breath until birth. And she went on to explain that this PDA generally closes on it’s own within 48 hours or so. That calmed my nerves a little. Another man who had come in with his newborn even made me feel better saying he was an echocardiogram technician and they saw this all the time, whew maybe it would just be a simple thing: that rollercoaster was suddenly on a downhill and I could breath again, who knew we were heading up another peak? And the freefall on this one would seem never ending.
I remembered I had put my cell phone into a small pocket in the front of my gown and I called my husband who was on his way back from the Italian store with the sandwiches. I was panic-stricken. I was sobbing, telling him to come back right away. Our baby had a heart problem and he needed to be back ASAP. Knowing me and my over worry he tried to calm my nerves and said, “Mo (that’s what he calls me), Marcelo is fine I’ll be right back, no worries,” but I could hear the franticness in his voice, as if one of the most beautiful moments in our life was suddenly and drastically taking a turn for terrible. I can only imagine the worry on his mind and he drove back to the hospital, sandwiches in tow just hoping this was all a huge mistake. I think in his gut he also had known something was wrong before he left. His last words as he walked out the door were, "keep and eye on him, Mo."
My mother called next. She was there with us the whole delivery, just like with our first son Luciano. I gave birth at 3:01am and by 4am she looked exhausted. My father was home with Luciano and I told her to go home and come back in the morning to bring Marcelo’s big brother, who was so anxiously awaiting his arrival, to the hospital to see his beautiful little brother for the first time. Visiting hours were after 11am and I had been in the nursery for about an hour at this point. It was about 10am and she was calling to see how I was and let me know that they were on the way. As I answered the phone she said Luciano had just finished eating breakfast and couldn’t wait to see Marcelo. I broke into tears, I’m sure I was barely audible and I sobbed to her, “Mom, there’s something wrong with his heart,” and burst into more tears. My mom, also knowing my exaggeration, and being the medical optimist said, “oh, he’s fine, they just want to check him and make sure everything is ok.” I told her to hold off bringing Luciano because Ed had just arrived and they were going to take him to the NICU just for “monitoring.” You see, the neonatologist was not quite the doomsayer that the pediatrician was, she tried to calm my nerves and said, “we’ll find out exactly what’s wrong,” that Ed could wheel me upstairs with the baby and we could stay for a moment but that I needed to get back to my room to rest. Oh yes like that was ever going to happen.
The shock was beginning to really set in by this point. A euphoric moment of holding my son post delivery to having him practically ripped from my arms and on his way to the NICU was a reality I could never wish on another. I felt ok for a brief moment. They made it seem like this PDA thing was no big deal. And indeed, if that had truly been the problem it really wouldn’t have, but that was not the case. They wheeled his little bassenet into the elevator and suddenly alarms started sounding everywhere, and nurses from all over the floor came running. If you ever wondered if those little lo-jack things they place around the child’s ankle to prevent strangers from taking your baby in the middle of the night really work, well they do.
So they cut off the bracelet let all the nurses know all was ok and we headed for the NICU. We arrived in a moment and they let us kiss him basically goodbye and made me go back to my room “to rest.” I sobbed for every second on the way back and I don’t think I stopped crying for several days after that. In the elevator and back in the room Ed and I were silent. They gave us hospital issue hard as rock tissues and we both went through them one by one. They said they’d call when they got him more stable and that he was in good hands.
By this time the word was out that I had given birth and my cell was ringing constantly. I didn’t have the strength to answer nor the knowledge to tell them what was actually happening. So I just sat there, awestruck and waiting to hear word of why they had taken my baby from me. Why the magical moment I was having when Ed left for Lucci’s and we were awing over the precious angel God had given us as a gift was suddenly ripped from our arms, unknown what the future would hold.
We waited about 30 minutes and I was bleeding quite a bit by this time from walking too much. I sent Ed back up to the NICU for a check and he came down with the same news, nothing. About an hour later we both went back up and I’ll never quite forget the sight that I saw. My beautiful baby boy was sleeping peacefully in what seemed like a world of chaos. They had put him under a head tent of oxygen and had tubes stuck all over his chest. I was in awe in understanding how someone so little could sleep so sound amongst all the movement. He was not strong enough to do much more than sleep and as the PDA was closing it was making him have less oxygen and his levels were dropping too much for him to survive for very long out of the womb. The neonatologist finally had some news. They had started him on some medicine called prostaglandins; a hormone needed to make sure his PDA did not close. It was a Sunday and they were waiting for an echocardiogram to be done by an outside vendor who was on call during the weekends. They had done an x-ray and most seemed ok on that. His oxygen levels were still low but until they had the echo done they could not be sure what was going on. We weren't allowed to stay long. The NICU was a place of much chaos and we needed to let them do their job. We returned to the room and awaited more information. By this time my mom had managed to sneak away from Luciano to come and see what was really going on. We told her to tell him Marcelo had a cold and that he couldn't be seen yet. Just hoping to buy time and that Luciano being only 6 years old would be enough of an excuse to keep him away from the worry which awaited us. How do you explain to your tiny son that his baby brother could maybe not ever make it home?
We spent what seemed like hours waiting for news and crying. My friend Melissa had come to wait with us and help us to get through this day of horror. Finally Dr. Nguyen came to see us and explain that they thought they knew what was wrong with our precious Marcelo. She said that the echo had been done and it looked like he had a congenital heart defect called Transposition of the Great Arteries. She said that since the local pediatric cardiologist was on Christmas vacation in India that she was sending a copy of the echo to Kaiser Sunset in Los Angeles for confirmation but that they seemed to have answers and as scary as it seemed it was comforting. Dr. Nguyen was very straightforward but calm and she was confident it was fixable and that he was stable and ok. She said he would be transferred to Kaiser Sunset and that he would be surgically corrected. She said they were sending for an ambulance for me and for him to be transferred that very night. By this time it was getting dark so it must have been getting close to 6pm and we had been waiting for hours for word of the ambulance.
One of the amazing nurses who was taking care of me on the floor had given us such hope because her son had been born 2 years earlier and he had severe problem and was also treated at Kaiser Sunset and was running and playing like a normal child. We clung on to any hope we could to find comfort. We had cried our tears dry and felt like we were stuck in limbo and often losing hope as to what was going to hit us next. Having others share stories was all we had to cling to at that point and we'd take any type of normalcy we could get.
Another nurse entered the room and said that we needed to call up to the NICU because they had news about Marcelo's transport. It was going to be by helicopter (Life Flight) and we had to give consent for him to fly. They mentioned that since he was stable but critical it would be faster for him to get to Los Angeles that way instead of by ambulance and avoid the Holiday traffic. I would follow in an ambulance and Ed could bring the car to meet us there. Less than an hour later the hospital started shaking as the loud helicopter blades hovered overhead. At this point it sounded like a helicopter taking off and I looked out the window to try and see it, and said goodbye to my baby. Little did I know it was merely landing and we'd get a chance to go up to give him a kiss before he left. They called and said he was ready to go and for us to come up. I couldn’t get into that wheelchair fast enough. Had I known where the stairs were I would have ran up them to see my precious bundle. When we go through the doors, he was all packed up in a incubator with tubes and lines going everywhere. They left the lid open for us to give him kisses and the flight crew was impressive. I looked at the pilot with tears and my eyes and begged him to take good care of my baby, he nodded and said, "no problem." They shut the lid and we rubbed his tiny hands though the holes and they whisked him away. The helicopter was in the park next door. By the time we made it back to my room the helicopter was lifting off and I cried as I heard the helicopter sounds fade in the distance knowing my baby who was already so far from his mama was now miles high and heading toward LA.
In another 30 minutes they said I was ready to go and that the ambulance drivers were coming with my cot to load me up and take me to LA. Dr. Nguyen came running in and said they had gotten word from Los Angeles and that Marcelo had arrived fine. The cardiologist had looked at the copy of echocardiogram and he concurred that it was in fact Transposition of the Great Arteries and in the never falter attitude and smile on her face said it was a simple surgery (of course to ease our minds) and he could be repaired and would be growing normally and this was the first happiness and joy I had felt since we left for the nursery. I was over the moon. The ambulance drivers were loading me up and I was elated. So happy, my baby could get fixed and these guys were going to take me to my baby. Ed had already left to go take the Prius and head out trying to meet the helicopter in Los Angeles and make sure Marcelo was ok. I kissed my mom goodbye and hugged Melissa with a smile on my face told those boys, "let's go!"
When we got in the ambulance I told the driver to get me there as fast as he could. Since it was Christmas Eve, Eve he said he had a flight to catch in just over 3 hours and had to make it back quick so he had no problem with putting the pedal to the metal and getting me there. That was such a memorable ride. I felt every single bump on the road, had to use all my strength not to fall off the gurney and into the floor, but I could care less I needed to get there and be with my baby come hell or high water!!
I will never forget as we got off the freeway at Vermont Avenue, I heard the driver say, "oh my God that guy just came out of the bushes naked." Some homeless guy was walking around in the cold naked. We laughed and I always remember that to this day each time we get off the freeway on that street to go to appointments for Marcelo. We got in to Kaiser Sunset and they had a room on the delivery ward available for me. They brought me by ambulance because they knew if they transferred me and didn't let me leave I could still stay in the hospital with Marcelo and not have to find a place to stay so late and continue to recover. After all I just gave birth less than 24 hours earlier.
Ed was waiting in the hallway with a man whom I didn't know. He was wearing a shirt and tie and had very nice shoes. I assume he was a doctor and he was. He was Dr. Tim Degner. Who would eventually be Marcelo's pediatric cardiologist. He is a man of very few words, he doesn't mince them and never speaks double talk. Just straightforward. They both came into the room with me as the nurse got me adjusted and into bed. Dr. Degner got out a piece of paper and drew us a picture of Marcelo's heart. We had no idea what to expect and he explained what Transposition of the Great Arteries was and what they would do to fix him. He was very matter of fact and seemed as though this was routine. We both I think felt a little bit calm knowing Marcelo was in good hands and they said he had gotten settled into the new NICU and we could finally see him. Dr. Degner bid us a farewell saying he would see us in the morning and we headed around the corner to the NICU.
Marcelo was all bundled up sleeping and happy, they had all of the monitors on him and the assured us he was in good hands. What started off as a joyful day which abruptly turned into a nightmare was winding down to a cautious but calm night. Ed and I kissed him, headed back to my room and tried to relax. We stared at each other for a long time. Not knowing what words to say. The nurse came in and I think was quite shocked at what my face looked like. She brought warm compresses, I had cried so much that day that my eyes were almost completely swollen shut. I looked absolutely horrible. By the time I took off the compresses she had brought me a breast pump and all the stuff I needed and had me try to pump since I had told them I was going to breastfeed. I think they thought I was nuts but it was the absolute least I could do to help my child get well. He was going to need all the extras he could get and Mama was going to get him through this.
I tried pumping and not much came out. My milk had not let down yet and with all the stress of the day it wasn't going to that night either. Ed and I still in mostly silence just held each other in that tiny twin bed and fell asleep for a few hours. I woke up abruptly at 2am. I felt an urge that I had to go see Marcelo. Ed was out like a light, I hobbled over to the NICU and talked to the nurses for a moment after I scrubbed in. They let me know he was a good baby and that everything was going fine. They said they were sending over a new echo tech to get a new echo of his heart. They said the copy was too blurry to see well enough and they had ordered another. I sang to Marcelo a little bit an rubbed his precious little head then by this time Ed had awoke and came to find me. Of course he knew where I had gone.
We stayed with Marcelo a bit and headed back to the dark room to ponder. It was a quiet night, we hugged a lot, and cried a lot, and felt very much confused at what we had been through. But just knowing he was with me was comfort because we were going through the same thing that out of all the people we knew only us had in common at that very moment, a child struggling to live. It was scary and confusing but we were managing together. The next morning they brought me some food and made me eat. It had been so long since I had eaten anything, if there was any hope of getting milk to come down I had to get nourishment. I quickly finished my stuff, took a tiny shower because I didn’t know when I'd get another. Ed had stopped by home the night before on his way to LA to get me some clothes and I changed from my gown to regular clothes and we headed over to see Marcelo.
It was a bright sunny Christmas Eve morning and I was praying for a Christmas miracle, that the echo would be wrong and Marcelo had something much less severe on his plate, unfortunately Dr. Degner was already there and had some news for us. It was going to be another tough pill to swallow and make things much more complicated. He said they had taken another echo and because the first one was a copy it was so hard to see that they missed some things on the first echo. While Marcelo did have Transposition of the Great Arteries, which basically meant his two major arteries had been switched during development he also had a large ventricular septal defect (VSD). This was a hole between the two chambers of the heart. Because this hole was so large, it came close to his pulmonary valve and made it stenotic, meaning it didn't open and close efficiently. Because of these new developments they would have to re-think the plan to correct his now very complex congenital heart defect. My heart sank, what did this mean? We had been told it was a simple procedure now we were being told his defect was complex and more would be needed. He said he would most likely need to have surgery in a few days but they might also see if he can go home and wait until he gets bigger to make sure he would be strong enough for the surgery. They were going to stop some of the prostaglandins and see how he tolerated it, maybe oxygen would be enough to get him bigger and stronger for now? But just a few hours off the prostaglandins would show us that was not going to be the plan.
So basically our lives had been turned upside down yet again and thus the rollercoaster that is Congenital Heart Defects was riding on high. We knew we had to go home, not only did Luciano still think he couldn’t see his brother because he "had a cold" but it was Christmas Eve and it wasn't fair that we are away from him on this special day so the day was growing longer and we decided it would be best to check out and head home for the night. Marcelo was in good hands, we had all the phone numbers so we loaded up and headed for home.
It was bitter sweet to see Luciano that night. It was the excitement of Christmas Eve but we had a daunting job ahead of us. We had to tell this innocent little boy that his brother was not sick with a cold but very sick with a very severe heart problem. That was no easy feat. I remember the whole 2 hour ride home I had my heart in my throat. My stomach in knots. He was so excited to see us. I think he thought we would have Marcelo with us and was a little disappointed we were without him. We both procrastinated as long as possible, trying to put off his questions as we settled in at my Mom's house. Finally he could take it no more, he saw my swollen eyes, he noticed the look of despair on our faces and he knew deep down brother didn't have a cold. We sat him on the couch and tried to be strong as we explained to him that his little brother that he had been waiting so long for was still in the hospital because he had a heart problem and he was going to need surgery to fix. We tried to limit it to all positive and not cry but when he lost it so did I and Ed did too. We cried a bit but assured him that all was ok. My mom had made dinner and we all tried to have a family night even though our thoughts were other places. We opened a few gifts and watched Luciano too and tried to be in the moment but I just couldn't stop the continuous wiping away of tears, my heart breaking knowing a huge part of me was missing that night. So daunting what we had ahead of us. I called the NICU a few times to check on him and nothing had changed. He was doing fine.
I finally began to get some milk with the pump. I had bought a pump when I was breastfeeding Luciano and went back to work teaching. I really never used it because by that time he was 10 months old and I would feed him at night and during the day while he was at my mom's he's eat normal food. We left for home that night we all three snuggled into our bed and held each other tight. Luciano had LOTS of questions and we tried to honestly answer each one so he felt comfortable with what was happening with his little brother. We tried so hard to keep an air of normalcy in a sea of chaos so that Luciano could enjoy his Christmas. That morning we headed to my mom's just like we do every Christmas morning to open presents so things would seem ok to Luciano. We stayed while he opened his presents but soon after sadly had to say goodbye. It was time to get back to the hospital and see what was happening with Marcelo. Once again struggling to leave one confused child to go be with another who was gravely ill. A position I would never want anyone to have to endure.
We arrived back at the hospital and nothing has really changed, it was Christmas Day and everyone was keeping things low key. We had word that his surgery would be in a couple of days when the surgeon could get an open spot but that most everything was unchanged. At this point they had a diagnosis but not an explanation so in come the geneticist and the other doctors with a million questions about family history of heart issues and the likelihood of this being genetic and whether to be tested or not and what the chances would be. All of it was a bit overwhelming. I remember we had asked Dr. Degner the night we met him what had caused this and he said there was no way of knowing. He said, "at some point a rogue particle of radiation could have hit the egg or the sperm and caused the DNA to be damaged," and that "they just don’t know why it happens, it's totally spontaneous." Of course this was not enough of an answer for me. I played each step of my pregnancy over and over in my head and wondered when exactly this "DNA damage" could have happened? What had I done to cause this? That question still nags me to this day, even though my rational brain knows better.
There were neonatologists putting their fingers in his mouth to check for a palate, the geneticist said he believed 85% that the test would show no genetic abnormalities, but he could not be 100% sure until the tests came back. That was as comforting as it was not. It didn’t really matter, whatever caused it, caused it and now what were we to do about it? It was a Christmas Day like no other and I pray to never have one that eventful again.
We got home late to see Luciano a bit before he went to bed. We had to be back in LA bright and early to meet with the surgeon because his surgery would just be two days away and we had to sign consent forms and hear what he was going to do for him and all that type of stuff. Enter Dr. Kristopher Kallin, Marcelo's pediatric surgeon. He is an interesting man. Very certain and matter-of-fact just like Dr. Degner, but with an air of arrogance that you really do appreciate when he's going to cut open your tiny baby and touch his heart. He explained that Marcelo was too small to be corrected so he was going to need a couple of stages of surgery to have a normal working heart. He would place what was a called a BT Shunt to allow more mixing of blood so that he could hopefully grown normal and get big enough to have his correction surgery, the Rastelli at 14 months old. Although ultimately that wasn't to be, knowing they had a plan was wonderful and comforting.
At 5 days old Marcelo Sebastian Manzi would have his first open heart surgery. Kaiser Sunset is across the street from Children's Hospital Los Angeles (CHLA). Kaiser uses their own surgeon to perform surgery but at CHLA, he would be transferred early in the morning and have his surgery there. We called all the family and explained what was going to happen. 5am came early, we were there and ready for his surgery. It was a long and lonely 5 hours as Ed and I paced the floor waiting for word. There was a tiny freezing cold waiting room near the CTICU at Children's where we waited. When Dr. Kallin came and told us everything went exceptional we both broke down. He told us they were heading back to the CTICU with him and we could see our baby in about an hour. One hurdle jumped and on to recovery to get our baby home. At this point I can honestly say that although I knew he would come home, the five days prior had been so long I thought the day would never come.
Luciano now knew what was happening with his brother. We never kept him in the dark and tried to be as honest as we could about Marcelo without being too technical so as to not frighten him any more than he already was. Luciano is my worrier and all of this was definitely affecting him. At two days post-op when Marcelo was a mere 7 days old Luciano was brought to CHLA to finally meet his baby brother. It wasn't a usual meeting and I'm sure it was a little scary for him to see his brother all stuck with needles and tubes coming off everywhere but the look on his face was priceless, as if he could over look all of that and see the beauty that was his long awaited little brother! We were once again all together as a family and it felt great. He stayed a while and the nurses even wrapped up all those chords and let Luciano hold his tiny brother. It was a very precious day.
His recovery was wonderful and he progressed rapidly. I had been pumping every three hours day and night and had plenty of milk stored for when they finally decided to put him on food. We weren't able to get a room at Ronald McDonald House so we stayed at the hospital in a tiny room with a full size bed, sheets and a communal bathroom. It was definitely not creature comforts of home but it did as we awaited taking him home and avoided us from having to drive to Orange County each night. One night we had traveled home to be with Luciano for a bit. We returned home and until this point I had promised myself to stay off the internet, I didn’t need the added stress from what the internet might have to misinform us. So I had gotten up for a breast pump session at about 2am. When I finished I thought I would call the CTICU to check on Mar. It was late and of course the night nurse said he as doing wonderfully. He then went on to mouth vomit that they had gotten some results back from his tests and that Marcelo tested positive for something called Maple Syrup Urine Disorder. A telltale sign is the urine smells like maple syrup, hence the name. He said he didn’t know much about it but from what he gathers it was no big deal, he would just have to be on special formula but that he'd be ok. So I hung up the phone and once again after days of peace waiting to bring him home was getting all knotted up in the stomach again. It was late, by this time almost 3am and Ed was asleep and I wide awake and there it was, my computer, waiting to give me scary information. I did what I had promised I would not, The idea of MY son having to forgo breast milk for formula could not be, so I did a search for Maple Syrup Urine Disorder (go ahead do it), and man was that stupid. What I read scared the crap out of me. Apparently it occurs quite rare, for example Marcelo has a rare heart defect, it ranges from about 1 in 10,000 live births, Maple Syrup Urine Disorder averaged rarity of about 1 in 125,000 live births. Apparently it has something to do with how effectively (or not rather) these children could break down protein and not only did they have to be on special formula but their entire life they must have a HIGHLY specialized diet and most don't live past their teens. Oh great so the heart stuff I can deal with , but at 3am I cannot deal with the idea that my son will never lead a normal life and die before he hits 20. I worried more about that than I ever did about his heart. It was a LONG night to say the least. I told Ed when he woke up and hurried down to the hospital. The day nurse on duty didn't seem to know much more than the night nurse and all said he was being re-tested to make sure. For days no one seemed to even mention it and all seemed like it was no big deal.
Finally we were transferred back to the NICU at Kaiser to await his final healing enough to go home. There I met the most amazing neonatologist. He was a breastfeeding Nazi just like me and when he found out our commonality he would talk to me all the time. He FINALLY let me in on the truth of that Maple Syrup stuff. He said it was VERY uncommon, and in his 25 years treating children he had only heard about it once. He then said he had heard several times over the last 25 years a false positive result when children are on IV nutrition called TPN and that there was nothing to worry about Marcelo would be just fine. Whew, thank you everyone for making me insane. All along it was merely a false positive. For the most part that pit in my stomach subsided but since we never got a definitive answer I wondered for a while.
By this time Marcelo was completely out of the woods and we were waiting on him to eat with a bottle so he didn't have to come home on a feeding tube and he seemed eager to learn, he loved to eat. Then one day I woke up with a lump in my breast and fever and chills and the telltale signs of a breast infection. Waking up every three hours night and day to pump takes a toll on the body, that compiled with the breast-pump not efficiently emptying the breast makes it ripe for an infection. I was 13 days post partum and really wanted to see him. I had breast milk stored and because of me not being sure it was an infection and not something more ominous like the flu I sent Ed back to LA to drop off the milk and I headed for the doctors.
At this point you feel that even though the baby is doing well he's just never going to come home. Or at least you cannot fathom what it will be like having him home. I remember it as if it were yesterday, I pull into the parking lot at the doctor's office and my phone rang, "Hello is this the parent of Marcelo Manzi?" "Yes, this is his mother." I replied. She said, "Are you guys coming in today?" Immediately worried I said, "yes my husband is on the way with my milk I'm afraid I'm sick and didn't want him to get the flu or anything, is everything alright? Is he ok?" "Oh he's fine Mrs. Manzi, in fact he's more than fine, I just got word from the doctor that he's ready to go home tomorrow." I think I almost fainted. I could not believe it, he was finally coming home!!! I thanked her and ran into the doctors office with the biggest smile on my face. I had never been to this office before it was a late afternoon appointment and I was giddy with happiness. I told the nurse and the doctor the news I had just been given. The doctor checked me an said that it was just a breast infection. They weighed me and I had lost all 18lbs of my baby weight and 2 extra pounds in 13 days. Yes folks that would be 20lbs in less than 2 weeks. Chronic ridiculous stress and breastfeeding every three hours will do that to you.
I raced home, calling everyone I knew to give the good news. My baby was well, he was coming home, he may have future surgeries coming but at this moment we could finally be a family. We didn't tell Luciano, we wanted it to be a surprise, where we would come home and surprise him at Nana's house as we walked through the door with the car seat and a little surprise inside. We also didn't want to get his hopes up high and then they tell us something else needed to be done and we would have to wait. Luciano had been through enough without having to deal with more disappointment. On the day he was to come home we rushed to the hospital to get everything ready. I had his clothes ready and they had to give him a shot called Synagis, that is an antibody for an infection called RSV. In children with compromised lungs RSV can be very dangerous and this mitigated that risk. The shots are extremely expensive, ranging somewhere upwards of $1200 per shot. At Kaiser they give these shots monthly through RSV season and Marcelo ended up getting them through 2 seasons. They differ from vaccines because they don't trigger an immune response to make antibodies rather they are antibodies to make sure and block the infection. Vaccines were a whole other story. I had repeatedly told them to not give him the hepatitis B shot. On this day when I called in the morning and they told me of the shots before his release I made sure they understood very clearly to not give any shots of anything until we arrived. The Synagis has to be compounded for weight and while we waited I told her that he would only be given that shot. He was at no risk for hepatitis B unless he had been given it from a blood transfusion during surgery and no shot was going to stop that, so he would not be getting that vaccine and she respected my wishes.
To this day it’s been an uphill battle with me declining vaccines. However I am the parent and his only true advocate. I will be responsible for his health ultimately. I will say that he has had his full set of DTaP shots. But I look at risk/benefit analysis. Had he gotten pertussis (whooping cough) during the California outbreak, having compromised lungs it could have caused severe consequences so I did give him that one. Chicken Pox, however is a different story. I was recently confronted by Dr. Degner about his vaccines and he asked when I would be willing to address them, I responded, "let's fix his heart first, then we'll deal with normal childhood issues." He turned four years old today and has been healthy as an ox.
We readied him to go home, the Synagis was given and the nutritionist had come to tell me how important it was to supplement him with extra formula and breast milk because they could gage the calories in formula and he needed to gain weight. I of course nodded and let it slip in one ear and out the other, I knew that breast milk would be best for him and you might not be able to count calories in it but if he was gaining weight on it he'd be fine. They had given him plenty of extra chemicals, drugs and junk while in the hospital, the game was being turned over to me now and I was going to get him well my way. My friend the breast feeding advocate neonatologist came to see us off, I asked him if he thought I would be able to feed him on the breast after all of this time? The other nurse looked at me and said, "only one way to find out."
When Luciano was born, it was a ridiculously long labor. The nurses erroneously told me that I needed my rest and that Luciano could go 24 hours without eating and would be fine. So I didn't right away put him to my breast and because of this it took about 4 months of some crazy work to get him to feed properly, he actually did breast feed for 2.5 years so I became somewhat of a pro but the initial craziness taught me a lesson and I was not going to let the same thing happen when I had Marcelo. Since we didn't know about his defect when he was born (which was a blessing in so many ways), I immediately told them to give him to me so I could try and breast feed him right away. They did and when they put him on my stomach, my mother and Ed can attest to this he immediately started grasping and pulling himself toward my breast instinctively. Now we know how much that struggle was for him but he did exactly what nature intended and tried to feed. I cannot say how much I am glad that I made sure that happened. Because he had latched on that very moment and a few times before they took him away he knew how to latch.
So after 14 days of no breast and fear he'd never feed and I would be stuck pumping for the next few months I did as the nurse said and tried to get him to latch. Immediately he latched on and was able to breast feed. It was at that moment the happiest mama on the planet. I knew he'd be ok. I know that when they know via ultrasound that the baby has a heart defect they usually take them c-section on a planned schedule and whisk them away immediately to the ICU where they sometimes stay for months. It is my honest belief that if they would just slow down for a mere moment and understand that the PDA I spoke of earlier is still functioning if they would just give them to the mama for a moment and allow that bond of breast feeding they'd more often be able to breastfeed later and this could mean all the difference in growth and less infection. Heart babies are notoriously small and slow to grow, I believe breast milk could make all the difference. Besides any mother who has had to pump for an extended period of time knows that it is less than desirable and really down right terrible and ultimately they quit because it becomes too crazy and the baby loses out. I completely understand this, I would have most likely done the same no matter how determined I initially was, but being able to breastfeed Marcelo and have him latch was an amazing thing an I owe it all to those very first moments of his life. He went on to breastfeed for over 2 years and was very healthy and quite smart. I'll never regret being able to give him the best and will always know that it made a huge difference in how he grew and developed.
So all steps had been completed, it was raining that evening and they walked us down to the parking garage and the sweet smell of cold rainy air was an amazing feeling. We loaded him in the car and headed straight for Luciano at my mom's. It was a long ride home from LA but Ed and I were all smiles. Nothing could get us down that evening not even terrible LA traffic. When we arrived home Luciano was in the kitchen at my mom's and he knew we were coming but not Marcelo. When we walked in we told him there was an early birthday present waiting by the door for him so he ran in and saw Marcelo sitting there and was so happy he started to cry. Of course we all started crying because it was a moment we had been waiting weeks for and never thought it would come. We were all home together and that is a feeling we could never explain the full dynamic of how we felt that night.
The name Marcelo means "little warrior." We picked it while he was still in my belly and knew what the name meant. I always felt it would mean he'd be a warrior to be able to stand up to his big brother when he was trying to be a tough guy, which ultimately is the truth but him being a "warrior" actually means so much more. Marcelo is a strong amazing little warrior. He fights and fights and when it seems like he has no more to fight he fights on. I am always amazed in his strength. He's been though so much in his short life but he has fought every step of the way and always managed through with very little grimace. When we got home he amazingly grew unlike the typical "heart baby" and just like a normal baby. This after a few months ended up being to his detriment. Originally the plan for him was the BT shunt would get him stable and growing to 14 months where he would have his correction surgery the Rastelli. By 8 months he was turning very blue and struggling more than he should. So Dr. Degner decided it was time for a catheterization to see where he was and if he was ready for his correction. He was the size of a normal 8 month old and clearly out growing his shunt. So they did the cath and determined that he was in need of another surgery. The rollercoaster was on another uphill run.
He informed us that his VSD had shrunk a little and the tunnel needed for the Rastelli wasn't as good as they had hoped to be able to put a conduit through the hole to re-route his heart. He said there was a surgery called the Bi-Directional Glenn that he was going to have to get him more stable and able to grow for many more years while they wait for his heart to be ready for the Rastelli. This was our second kick in the gut. We were again shown how quickly the heart plans could change and we had no other choice than to roll with it. At this point Marcelo was doing quite poorly. He was so little and didn't really move a lot yet but he was noticeably blue and tired a lot. They called us the week after the cath with a date for the surgery. I felt really blind sided and scared, all the emotions of the first surgery which we had put behind us came rushing back. I was going to have to give my baby up again and let them take him with incredible uncertainty and I wasn't sure if I was ready and certainly had no choice, to keep him alive this was necessary. His oxygen saturation had gone down into the 60s and this was far to low to keep him alive for too long.
We were initially scheduled to have his surgery in the beginning of September of 2008, but a couple of days before the surgery Lupe, Dr. Kallin's assistant, called to bump us. This was very disappointing to say the least. You are already emotionally ready for the surgery and when you are told it won't be for another week or so it's a devastating blow. Especially to a worrier like myself.
So, Tues Sept 23 (Mar's 9th month birthday) we spent at Kaiser Sunset and CHLA doing all of the fun pre-op testing. He got a chest XRAY and EKG done at Kaiser then off to CHLA for blood work and a mini physical to make sure he wasn't sick. Turns out he still had MINOR residual from a cold and Dr. Kallin his cardiologist decided to go ahead with operation because it was really only residual and his oxygen sats were BARELY in the low 60s at each check and that was way too low. We met with Dr. Kallin in the morning at Kaiser Sunset and he explained what the Bi-directional Glenn was and again why they chose this route. Basically they cut the pulmonary artery and attach it to the Super Vena Cava redirecting the blood flow away from the right chamber of the heart and connect it directly to the lungs basically bypassing the right chamber altogether with the blood coming from the top half of the body. This blood was now flowing passively into the lungs instead of being pumped into the lungs. This is a very simple explanation so you can better understand what was done. In the afternoon when we headed over to CHLA for the blood work and physical I was sitting in the room with Marcelo and across the hall a woman had a little baby in her arms I could see the back of him and he looked like any little baby would look. Kind of a stiff body for a baby but not much out of the norm. Then she turned him around and I saw that he had a mal-formed head and his eyes were bulging and mouth gapped open. He looked really stiff and ridged, not comfortable at all. I’m pretty sure he had some major things going on throughout his body and was there like Marcelo for a pre-op surgical appt. Now why would I bring this up? Because it was at that very moment that I prayed to God, thank you for Marcelo only having his heart defect. I was awestruck and knew that as bad as I might think things are with Mar, things could be so much worse. It changed my perspective so much that day. For months I had asked why him, why us? It no longer mattered, it was to be and we'd roll with it.
We arrived quite early on Wednesday the 24th. We had been warned that there was another emergency surgery that was possible that could bump us but that we would know about it on the 23rd before we left. Since we hadn't heard anything we figured that all as a go. Apparently they decided not to postpone the other baby's surgery but instead of Marcelo being the first case at 6:30-am he was bumped about an hour and my only complaint was I wish I would have known about this earlier because we were instructed to not give anymore breast milk after 1am and only clear liquids until 2:30am so I gave him his last feed at almost 1am but he woke up around 3:30am looking to eat. By that time we just figured we needed to get up and get ready to head over to be there at 5:30am as instructed. Little did we know he had been bumped to the second case and really could have eaten at least one hour longer. A cranky, hungry baby is a force to be reckoned with that early in the morning.
Needless to say he was a happy baby as long as he could be but when those hunger pains set in waiting in a waiting room, I believe he started to know something was up. He had slept most of the way to LA and when we got there was a good boy for at least 45minutes as Ed and I paced the floors waiting and handing him back and forth to keep him occupied. By 6:30ish he was done. Tired, cranky, hungry, and just not willing to settle. I sent Ed back to the car for the Teletubbies video and I paced my 20lb. baby singing loudly "The Wheels on the Bus Go ‘Round and ‘Round..." so as to lull him to sleep one more time before they took us upstairs to pre-op waiting.
The pre-op waiting ward: imagine, if you will, a sterile LARGE hospital room with beds lined up in rows separated only by curtains with the fronts open as parents lined up in each cubicle with tired cranky children most of whom were too little to understand the concept that they would soon be in surgery. Kind of like a M.A.S.H. unit with all the hustle and bustle sans the blood and triage and much more modern than the 70s TV show. Parents with tired, cried out eyes with enough worry on their faces for the both of them sitting in wait for their child's turn to be taken by a team of surgical partners into the abyss that is the OR.
After we arrived upstairs to this waiting room about 10minutes passed in which Marcelo had re-awoke from his slumber with dreams of wheels on busses going 'round and 'round into a freezing room where Mama was visibly upset and Daddy looked like a white sheet of angst as we awaited the inevitable. A nurse came in with a needle-less syringe filled with a red liquid which was the greatly touted wonder drug Ativan that will make your baby loopy and happy as they head off to meet their fate. So Marcelo didn't love the taste and tried to spit a good portion back out at me but apparently it worked because within an instant he was suddenly a happy, silly baby with not a care in the world. It was quite nice to see because our hungry little bear became a friendly little cub and was willing to peacefully go with the nice ladies who carried him into the OR.
Ed and I both said our goodbyes tears streaming down our faces. I stopped the nurse twice to say "one more" goodbye and give kisses to my baby. They asked, "are you going to be alright mom?" To which I answered, "No, I don't think so." and as they took my baby away I burst into tears lost in a world of surreal, a hideous feelings I promise no parent ever wants to or should have to feel. With little solace I held onto the grace that he was in good hands and at the very least left with a smile on his little face, for I knew the next time I would see him the smile would not be there…and it wasn't for a few days to come.
So once composed, Ed and I headed off to the parent waiting room to figure out what to do for the next 2 to 4 hours it would take for the surgery. We stopped by the CTICU to give them our cell phone numbers and decided to go to the famous Children's Hospital McDonald's for a mute breakfast as we waited the news of how our precious Marcelo was doing. We ate in virtual silence just as we had done some 9months previous as he underwent his first open heart surgery. Although this time was quite different. Nine months ago he was our precious little newborn baby, he barely had a name and much less a personality. This time was heart wrenching, that little boy who had become known as "Mar Mar" who smiled and cooed and knew that when Mama, Daddy or Luciano entered a room his whole world was complete, was now fighting for his life and as much as his heart was being fixed mine was breaking.
After a half eaten breakfast to keep up our strength from sleep deprivation and worry we had to go upstairs to the pharmacy to get Ed some Motrin because he got a headache and was in need of relief. Then we went onto the outside garden area to get some sunshine knowing our next few days would be filled with not much and we would be lacking the suns vitamins trapped inside of the hospital waiting for Marcelo to recover. We also attempted to gain internet access with the laptop we brought but to no avail given Children's was in the midst of giving internet access to parents and unfortunately we were a week shy of gaining access. We were told that it would be up and running in about a week and we prayed at that moment that we would not still be there to use it.
We decided to walk back to the CTICU parent waiting room upstairs and passed by McDonalds and noticed two of the resident anesthesiologists having a coffee break. I looked at Ed and he looked at me and for a moment got excited thinking, "could he be done already, only an hour or so had passed?" So we decided to interrupt their coffee break to see what had happened and they said they had just come down from there, he was already asleep and everything was looking fine and that they were just opening him up at that moment. At least we were relieved to know that thus far things were going smooth.
We headed upstairs and watch the 1980s movie CLUE that we had downloaded to the PSP in an attempt to pass time. However with Ed's headache and my exhaustion for lack of sleep we spent most of the time in anxious waiting trying to get a few winks as we hoped Dr. Kallin would soon come in and give us some news. After what seemed like an eternity the door to the waiting room came open and in walked Dr. Kallin. That was a emotional moment as he came in and uttered the words, "everything went fine, I waited in the OR for them to remove the curtain (that separates view of his head to the surgeon) so I could see if he was puffy or not from the new pressures and everything looked fine so he'll be in the CTICU in about 45 minutes and you guys can go into see him." OH WHAT A RELIEF.!!! Praise God he was OK, everything was a success and we were soon going to be able to see our precious baby.
Time, once again, stood still as we awaited the moment to see him. I took the opportunity to go to the car and pump given I had not fed him for a very long time and let's just say my "girlfriends" were not very happy with me. I took the milk back to the CTICU for them to put in the freezer and asked if it was time for us to see him yet? They said to give his nurse about 5 more minutes so I had time to go grab Ed and head back over to finally see our pretty prince all fixed up.
Walking into that room was bittersweet to say the very least. He looked (to be perfectly blunt) as if he were lying in state. His chest bare with the bandage covering his wound. Tubes coming off of everywhere his eyes closed but a little puffy, arms to his sides a large tube protruding out of his nose hooked to a ventilator and no expression on his face but deep sleep. He looked peaceful and without pain and that was a good feeling, but the flip side to that was knowing what he had been through and not being able (as a mother) to grab him up off that bed and take him in my arms and love him as to say, "everything will be ok baby, Mama is here." None of that really mattered because it wasn't Mama that was going to keep him alive over the next 12 hours; her name was Amy and she was his dedicated CTICU nurse and she did an amazing job taking him through the transition with the entire post-op team. Thank you AMY! Thank you CHLA CTICU!!
The next few days was much of a blur. He basically stayed asleep which was exactly where he needed to be; sleeping, feeling no pain, and getting better, for when he woke up and realized that the equivalent of a 2 ton truck had just smashed him he was not going to be a happy camper and we knew it. So we waited and waited. 24 hours passed smoothly, they had been concerned with what they called a small bit of pulmonary hypertension. His lungs were adjusting to the new pressures, he went from oxygen levels in the low 60s to at the point of immediately post-op to hovering around 92%, that was a HUGE difference and his body needed time to adjust. One of the things that we first noticed about him was his O2 levels being so high. We had NEVER seen our little baby with PINK (not blue) lips and nails. It was such a delight. We could not get over this and kept commenting on it all day. It was amazing to see. After discharge his levels remained around 82-83%. They were super high in the hospital because he was on oxygen but had since leveled off to the low/mid 80s which is still very good for him.
He stayed in the CTICU for about 2 days. The final morning in the CTICU was just for them to get a bed ready on the dreaded Sixth Floor, what they call 6 West or the Surgical Step Down Unit. I completely understand it is a step down unit so children that end up there are almost ready to go home. Now it’s just a matter of getting back to proper feedings, medicine schedules, taken off all oxygen and monitors and peeing and pooping. After his first surgery we were sent back to the NICU at Kaiser Sunset so we didn't know what 6 West was like. When we first got wheeled up there it didn’t seem very odd. It’s quite a different vibe there, more laid back not so much hustle and bustle. The nurse to child ratio is very different on that floor. About 1 nurse to 4 children so for the most part we didn’t see the nurses very much unless it was like 3am, and even then it was sporadic. They basically come in to deliver the medicine in the syringes but it’s basically our job to administer the meds. No big deal, right? I mean we should just be glad we’re getting ready to go home. Well we couldn’t get out of there fast enough. We’d get the medicines but remember I mentioned the little problem of him having a slight case of pulmonary hypertension post-op? Well, because of this he was given a medicine called Sildenafil or for all of you who are falling asleep with this novel of a story perk up your eyes Sildenafil is generic for Viagra. Yes ladies, watch out because my little man was a BIG man if you know what I mean (wink wink, nodd nodd).
Don’t get too excited people, contrary to popular belief Viagra was originally made for relief of pulmonary hypertension in older men with heart problems, it works by making your body produce more nitric oxide thus allowing your arteries to relax and help blood flow better. The “side effect,” if you will, was basically a bonus. Good news was Kaiser paid for it and we got an adjusted rate at the pharmacy. Those old dudes looking for a good time caused an outrageously inflated price and I’ve heard plenty of heart families who’ve had to pay this out of pocket, not fun!
We were on 6 West for a few days and like I said not much attention from the nurses. An assistant would come in every few hours to take his vitals (blood pressure, temp., O2 saturation levels and listen to his heart), he slept through most of those because in the hospital he was still pretty tired. Although we were told it was a post-op floor we roomed with a 15 year old boy who had Lupus and was on his 3rd week in the hospital for observation. Poor guy, on tons of meds and didn’t look like a happy camper when we saw him. He had a really sweet mother but his father was a major pain in the ass (pardon my French). They would trade off, she usually came the night shift and he was there most days. The first afternoon we get wheeled in he has a bunch of visitors in the room (the dad not the kid) and they’re laughing and having a good time. I thought Ed was going to go through the curtain and tell them all to shut up. Marcelo was still really sleepy at that point and slept much of the day. It seems interesting to me that they put a baby in with a 15 year old but hey who am I to know the right way? So they’re yakking and cackling like hens and making Marcelo stir, he really needed to rest and they weren’t helping. Finally things quieted down and the first night the boy's mother was there.
Night number two however, not so much fun. Marcelo needed meds about every 2 hours. Between the Viagra and the Lasix it seemed like every time we turned around new syringes were coming in. About 3 am a nice nurse came to give meds to us and she was leaving at 3am and wanted to say goodbye so we talked for about a minute. Mind you for some reason Marcelo thought the Viagra is the worst medicine he had ever tasted and gagged and choked each time it got near him. So we had the light above his bed on and he was crying a bit after the medicine and she was helping to calm him and talking to us when dip-wad dad from next door comes over and says, “can we turn out the light and be quiet MY SON is trying to sleep?” Ok, fair enough but was it not him and his cronies laughing and giggling for hours during the day while my baby was just transferred in 2 days out of OPEN HEART SURGERY and really needed rest, now we’re trying to calm his crying and suddenly Silence is Golden? Mind you his son (like most teens) was sawing logs and didn‘t hear a thing it was him who was "trying to sleep."
Which brings me to my next pet peeve of the old 6 West. Since they were by the window they had a bed like thing that doubled as a window seat for them to stretch out on and sleep. Now us near the noisy door had a fold out chair that was hard as a rock and only fit one person. It only folded out half way and wasn’t exactly where I wanted to spend my nights in the hospital. Oh and Ed had an upright chair. At one point I sent him to the parent room because since he didn’t need to be there and breast feed I told him to go where there were couches so he could get some sleep. Lucky him. So the same night the dumb ass dad from next door kept coming over to shut the door because it was too noisy for him, I mean "his son," with the door open. Well in the iceberg that they call the hospital for some reason night time means crank the air up to below freezing. That same night Marcelo decided it would be fun to puke up his meds because they gave him an iron supplement due to low levels and it was either that or another blood transfusion, thank goodness they opted for iron. However, he hated the taste so then thought everything that came near him was iron so he attempted to puke everything up. Nice way to set back going home Mar. Luckily it didn’t. He got his gown all wet and of course in a Children’s hospital they ran out of mini baby size gowns and kept saying one was coming up soon.
Well Mr. Marcelo just like his big brother Mr. Luciano does not like having covers on his legs. We told everyone that but they liked to find out for themselves. While still in the CTICU they couldn’t figure out why he kept getting so angry and flailing while intubated. I told them it was probably him feeling the pressure of the blankets on his legs. Sure enough when they took them off, he calmed down. Imagine that? So I tried to keep his little diaper only body warm while he slept because with the air a cool 32 below in there his temp. was really low at one point when the assistant came to take his vitals she couldn’t get his temperature to read, nice. A heart baby with poorly circulating blood was an ice cube while asleep for like 5 hours. Oh the nightmare that was 6 West. What fun! So the lovely dad next door kept trying to come over and shut the door because he knew Ed was out of the room and I wouldn’t say anything so finally I opened it and he came over to say it was too noisy and by this time I was pissed I said, “Look my baby is freezing and with the door closed he cannot get warm so I think you can live with a little noise while you get your sleep.” Needless to say not happy he went back to bed. Poor guy, yeah right!
On Saturday my mom came with my aunt Terrie and brought Luciano to see his baby brother in the hospital. Luciano likes coming to CHLA because there is a McDonald’s and he just thought that was the coolest place to be in a hospital. Plus a gift shop where he always needs to get brother a present like the Spongebob Balloon that was for Marcelo which was quickly commandeered after discharge as his own. I was glad she brought him up on Saturday and not while he was in the CTICU. Back in December he was still all hooked up with tubes and such and didn’t look so well when my mom brought him to meet his little brother for the first time. This was much nicer because not only did Marcelo really light up when Luciano came into the room but, Luciano didn’t have to see him so sickly and get so worried about him. That was nice. Marcelo loved to see brother. His eyes lit up when he came in. It was really his first real smiles through all of this. For Marcelo even though he cannot talk the sun rises and sets on Luciano. It’s an amazing bond that I love so much. It was also wonderful having my mom and aunt there because I got to have some real conversation not relating to heart stuff that I was so missing by that point. Plus, Luciano and Ed spent some boy time together walking around the hospital which I know they both needed.
That night a nurse came in around 7pm with a bucket and a wash cloth and some soap and said, “here you can give him a sponge bath.” WHAT???? I don’t even know what can get wet like his incision or the holes all over his body from the lines. Yet I’m handed a bucket of water and told to get to it. Great, like I said the step down unit is an interesting one. I know it’s what I have to learn to do at home but going from an all-inclusive like the CTICU to a 2 star Motel that is 6 West is a big system shock and a scary one for a parent not really sure about how to handle him post-op.
Sunday finally rolls around and we’re almost getting our walking papers. Marcelo came off the oxygen completely on Saturday morning before Luciano’s visit and was now only on the pulse-oximeter (measuring his blood oxygen saturation levels) when they’d come for vital checks so he was still sat’ing in the mid 80s which was great for him and they weren’t worried. He was peeing well and heart was pumping. He was off all other meds besides Viagra and Lasix which he was coming home with. All he needed was a chest X-ray and was getting discharged. That morning we had a great nurse, we did a lot of waiting around because since he was just getting ready to leave he was now extremely low priority. They sent up a wagon for him to ride down to Radiology and he was happy to sit up and go for a ride.
The nurse said since we didn’t need to be up there right then and his carry around heart monitor was unplugged that we could skip town for a bit and take him for a walk down stairs so we once again headed to McDonald’s for a quick breakfast break, all of our meals were at McDonald’s- some might think wow, but rather you should think Morgan Spurlock’s movie Super Size Me, YUCK!!
We went back upstairs just in time for Dr. Kallin to come around and make sure he was fine and then we could basically go. He had gone four days without a bowel movement so the nurse brought in a suppository and we decide to give it to him. She said it could take up to an hour. Well not this little man, she left the room afterwards and he looked at me, grunted and there it came. The most vial and nasty smelling poop a mother ever wants to change. NASTY!!! Suddenly Ed was nowhere to be found. Finally he was all cleared out and ready to take off. We loaded up all our bags, put him in the stroller where he immediately fell asleep, wrapped his balloon around the stroller, signed the necessary “yes we will give him his meds and not expose him to sickly people and not pick him up wrong for 8 weeks” paperwork and we were OFF! YAAAHHHHOOOOOOO!!
I had been pumping my breast milk the WHOLE time he was asleep and because he started right back to breastfeeding after he woke up I never used any of the milk to feed him. So after I would pump they would put his tag on the milk and throw it in their freezer in the CTICU, we took that milk up to 6 West with us when we went and it was all frozen. I had about 100 to 150 ml (or about 3 or 4 ounces) from each pumping session almost every 3 or 4 hours round the clock for 2 days. This was quite a bit of milk. I had planned on using it for my mom to use and watch him the next weekend when we went to our friend’s wedding. However, the tipping point of the madness that is 6 West was when I ask the nurse for my milk and she comes out with all the bag’s wrapped up in another bag with ice all around. It was just like I had done 9 months earlier, ready to go home with EXTRA milk in hand when she said, “we are suppose to rotate the milk in the freezer every 12 hours (it was 12 noon) and sometime between last night at midnight and right now the freezer stopped working and all of your milk thawed, I’m so sorry. You can use this for 24 hours then it will be no good.” I held my tongue knowing there was nothing she could do about it but I was fuming inside. How can they not know that the freezer was broken for 12 hours?? Not to mention all those people lost milk because the freezer was on the fritz what about other babies? Do they just tell them sorry, feed them formula? I was fuming inside but so elated at the fact that we could leave that nightmare for home, I grabbed my milk and left.
Here’s the kicker, SHE LIED!!! When I got home I looked at my thawed milk, all ton of it, and noticed that the fat was separated from the watery part, which ONLY happens (for those of you pumpers out there) when the milk has been sitting in the refrigerator for a while completely thawed. It was all completely thawed, if it sat inside a freezer even for 12 hours, the freezer would be colder than the fridge so it would have still been a bit frozen…MEANING…THEY NEVER PUT IT IN THE FREEZER when the CTICU nurse gave it to the 6 West nurse when we got there. Talk about dangerous behavior. She told me it was ok to give him for 24 hours. It had been thawed for more than 24 hours meaning it was NOT ok to give him at all.
Think about it this way, I was pumping in my car. Not exactly the most hygienic place, let alone in a hospital, I tried to be as antiseptic as I could given the circumstances, but I also had one shower in four days, yes I know gross. I was like the nurse to child ratio at 6 West, not exactly the freshest smelling flower. The milk, once frozen should be used within 24 hours of defrosting. If it had been sitting in a fridge for the 48 plus hours we were on 6 WEST then it was not safe for him to drink then let alone for the next 24 hours. So she tried to make it seem like it was just thawed to cover up their faux paux and my son who was just post-op from major surgery could have gotten bad milk. Imagine how pissed I was. Luckily I’m not a fool and I check stuff like that. I guess the worst part is as some of you may know pumping is not a fun thing. It takes lots of time and is not the best feeling thing and for them to so blatantly disregard the importance of it really made me sad.
On a happier note, we were on our way home!! Four days went by very slowly and very fast all at the same time. Ed mentioned at one point that “this place is full of super highs and super lows all at once.” I thought it took forever but from the consensus of our cardiologist and pediatrician they were amazed at how fast they received his discharge papers and were very happy with his progress.
Our first day home was tough but things went up fast from there. We came home had a welcome shower since we only had one out of the 4 days we were there when we rushed home after 12 hours post-op when he was out of the woods late at night to have a quick shower and get some more pumping equipment. After a nice long shower to scrub the nastiness off we took a little needed nap on a real bed and you could even see a change in Marcelo, like he knew he was home and felt much better. He let me lay him down on the bed without a fight, which in the hospital he hated being put down for fear that someone was going to poke him with something. He played around a bit and cooed and giggled a refreshing sound after much silence from him the days before. And then we went to pick up Luciano from Nana and Papa’s and ate some dinner with them.
It was amazing to be home again and be done with all of the heart stuff for a while.
When we got home it was tough because he was still acting a bit strange and while taking his meds gave us a heap of trouble in the beginning. After that bout with iron he really hated it all so it was struggle to get him to take it the first few days. In fact thank goodness one of my Colombian sisters Gilma (ÑaÑa) was there, because she is a doctor and specialized for a time with cardiac babies and she helped us to see that he was fine when our tired minds were heavy with worry. One night she came over late to bring us some food and he was ready for bed and we gave him his first dose of vitamins with iron and he was fine, then suddenly he had his mouth gapping open and slobber rolling out of his mouth. He was breathing fine and acting fine just wouldn’t shut his mouth and was drooling terribly. We thought maybe something was wrong but it was late and with Kaiser there is not that many people to call except the vague nurse line which will almost always tell you to go into the ER. Exactly where his pediatrician never wants him to be with all the sick people unless absolutely necessary. So she listened to his heart and said he sounded perfect. Finally we realized what his problem was. I had Ed put a drop of the vitamins on his tongue and they made his mouth water. The iron makes you taste like a penny is in your mouth. So he was disgusted by the taste and had learned if he left his mouth open that it would pool and run out of his mouth if he didn’t swallow. Silly boy. So then we realized we had to curb this behavior because over the next few days he tried it with other things he didn’t like.
His energy levels were amazing post-op. He was happy pre-op but now was just a different baby, he was happy on top of energetic and it was wonderful to see. He was flipping over well now, not crawling yet but attempting something of the sort. He suddenly loved to eat solid food and was not gagging any longer, and has a huge appetite, not very common in heart babies. He just seemed so much more content. Pre-op his oxygen levels were so low that he was really struggling and even though it wasn’t really apparent to the eyes we did not know how truly close he was to dying. Thank God they didn’t postpone the surgery again.
In fact it was an amazing 3 years until his next surgery would roll around this past November. They told us his Glenn would most likely get him to about 8 years old. The heart world is a very subjective thing, what you hear first is never what actually happens. Marcelo once again grew like a normal baby, not a heart baby. It was obvious not too far along that he'd be having his surgery well before 8 years. The next thing we heard was they'll most likely look into it when he's 5 years old. Then last year Dr. Degner told us at a regular check up that they'd most likely do a cath again this last summer to see if he was ready for his surgery or if they could wait a few years.
So this last Sept. 15th we went in for another routine catheterization to see how his heart was doing. And sure enough he was ready for his final surgery. We had been waiting and hoping for the Rastelli for so long because this surgery would mean his heart was the closest to being a full repair and that he'd be oxygenating at 100% like each of us. It was still up in the air of whether he was ready or not for the Rastelli and there was another option that was always on the table, but one we didn't want to think about, the Fontan. This is a surgery like the Bi-Directional Glenn Mar had at 9 months old, where they essentially do the same thing only on the bottom part of the heart where the de-oxygenated blood would entirely flow passively to the lungs and both his right and left chambers would only be used to pump blood to the body. Then he would oxygenate between 92 and 98 all of the time. Ultimately this would be the surgery he would have after much contemplation and judgment. That whole story can be found in the post above on this blog entitled: "The Warrior Has Risen…" in November.
All in all this has been an amazing four years. I know more about the human heart than I honestly ever cared to know and I also have learned how amazingly strong my little warrior and really each of us in this family is.
I want to thank all of you who have been here for the journey. It is because of support like yours that makes those gray days just a little bit more tolerable. I know how much Marcelo has touched each and every one of you and thank you all for being part of this family. We will continue to fight the fight. It looks as though the chapter of heart issues is for the most part behind us. I am grateful for that. Marcelo may the next 80 years of your life be a million times more amazing, and much less stressful than the last four, Happy Birthday Princey!!! Mama loves you soooo much!!!
