EarthProtective

*** THE DAY AFTER CIRCUMCISION: THE DEATH OF BABY JOSHUA *** As told by his mom, Jill, in her blog "The Real Life of a Redhead" He was born August 16, 2010. At 22 weeks we made our way down to Indianapolis for our fetal ECHO. It was then that our lives were turned upside down. Joshua was diagnosed with Hypoplastic Left Heart Syndrome. Hypoplastic Left Heart Syndrome or HLHS is a Congenital Heart Defect (CHD). Basically, Joshua only has 1/2 of his heart. The left side is hypoplastic, which means that it has not developed or is underdeveloped. The treatment for HLHS is a set of 3 open heart surgeries to "reroute" his heart. The Norwood surgery is the first surgery and took place at 3 days old on August 19, 2010. The Glenn should take place around 6 months old, and the Fontan is typically be performed between 2 and 3 years of age. He also had a shunt revision due to the shunt being too large which resulted in poor oxygen profusion to his body. That took place September 27, 2010. Tuesday, October 5, 2010 Warning: This post is not meant to be a debate. Please, do not leave me nasty comments about circumcision and how I don't love God because we chose to have it done. After all we have been through, I don't have the energy to listen to a debate that isn't going to do any good at this point. Also, please don't leave nasty comments about the doctors, nurses, hospital, etc. Hear me out, and if you don't have anything nice to say, then don't say anything at all please. I know how much all of you love Joshua and just want what is best for him and I know you guys are just as upset as I am. Please be gentle with me tonight -- I am feeling extremely fragile and guilty. I talked to the doctor yesterday about getting Joshua circumcised. We have talked to them from the time of Joshua's birth and told them that we wanted it done. He was originally going to have it done with the g-tube surgery a few weeks ago, but when the surgery didn't happen, neither did the circ. They have told us over and over that the bigger the baby gets, the more likely they are to bleed. They are trying to get the circ's done right after birth due to the bleeding risk. The doctor came in this morning and asked if we wanted to get it done today. I said yes, I asked her about Joshua's aspirin dose and she assured me that enough time had passed since his last dose to not be a risk factor. I also asked the nurse and the nurse assured me that enough time had passed, but she also asked the doctor in front of me to give me that extra reassurance. They brought in the consent form, I signed, and Joshua was circumcised at around 1:00 pm. At 2 when they checked him, he was still bleeding quite a bit. They cleaned it off, put pressure on it, and then said they would check again at 2:30. This continued on a few more times, and then the doctor became slightly concerned. She finally decided to stand at Joshua's bed for just about 2 1/2 hours holding his penis and putting pressure on it to try to get it to stop bleeding. They tried gauze, some sort of powder that was supposed to help it stop bleeding, pressure, and more powder. Nothing worked. Finally the doctor called the urologist. He came over around 7:30. He said that Joshua needed a stitch or two to stop the bleeding. Apparently they nicked an artery and that is why he wasn't stopping. Thankfully the urologist was able to stop the bleeding with just one stitch. Right at this very moment, Joshua is now back on 85% oxygen through his nasal cannula, his sats are in the upper 60's, he's drugged, pale, and his crit levels are at 41. They are going to give him until midnight and run his crit levels again. If they have not risen, then he will receive another blood transfusion. I should have known better. I should have said no. I had hoped that he would do well and that it wouldn't be such a big deal. But instead, I almost killed my child by consenting. Why can't this poor baby catch a break? Why can't he just have one thing go right for him? Why did I have to say yes? I'm watching him sleep and I'm struggling with extreme guilt over all of this. I put him through it. Shane and I chose to have this done to him. It wasn't necessary. Why did we do that? Why is this so freaking hard? I've already received texts, emails, and messages from quite a few people who are pissed that this even happened. I don't like it either, but please be gentle. I know you guys have good intentions, and nothing but love for Joshua, but please know I would have never said yes if I had known it would have turned out this way. Please be kind. Wed. Oct. 6, 2010 My dad was coming to spend the day with me. I was tired of sitting around the hospital by myself, and had decided that I could really use some company. My dad graciously accepted to come down and spend the day with me. He called me at around 7:40 am to tell me he was on his way. He also woke me up. You see, I had stayed late at the hospital the night before, and I had planned on sleeping in that morning. After my dad woke me up, I decided to quickly get out of bed, shower, and get over to the hospital to spend some quality time with my little man before my dad showed up. I got to the hospital around 8:15. When I walked past the window to Joshua's room, I saw that he was kicking his feet, most likely crying. I entered his room and sure enough, he was crying. I quickly put my bags down, and went to his crib. I picked him up and said "Good Morning my sweet baby!!! How are you today? I've missed you." I gently kissed his head, and he immediately calmed down. I rocked him in my arms for a few minutes as I continued to snuggle him. After being there for about 5 minutes or so, his O2 alarms started going off. They were in the low 60's (which for an HLHS baby a O2 sat that low is not completely uncommon.) I watched it and didn't panic, because it usually popped back up to the low 70's fairly quickly. After a few minutes of it being low, i finally started to worry. Joshua was calm, and I didn't want to put him down. After another minute, the nurse came in and decided to turn up his oxygen. He was up at 90%. We watched him for a few minutes, and his sats kept going lower and lower. He was still calm, and was not blue. We messed with the pulse ox some (it was known to not pick up very well, and it was not correlating very well with the heart rate- so we thought maybe it was a bit of a malfunction). By the time we were done adjusting his pulse ox, his sats were in the 40's. That is when his heart rate started dropping. It quickly went from a healthy 148 bpm to 110, 105, 100, 90...... The nurse saw that and immediately yelled out Joshua's door for help. The doctor was in immediately and I layed him on his bed. By that time, his breathing was labored, and he was extremely dusky in color and he was looking up at me with those beautiful eyes that were screaming at me "Mommy help me...help me!!!" I frantically tried to get the mobile off of his crib to allow the doctor full view of Joshua while she was working on him. She immediately started chest compressions and told me to leave the room. I stumbled out of the room and made it only about 2 feet out of the door before I fell to my knees and started begging God for mercy. Somehow I knew that this was it. Joshua's sweet life was coming to an end. The nurses called for the crash cart and a ventilator. People rushed passed me as I kneeled on the floor praying crying out to God. Finally a nurse came and got me and took me to the quiet room. She sat and talked to me for a minute, quickly explained everything that was going on, and promised that she would come back and keep me updated. She told me that they had already given Joshua 1 shot of epinephrin (totally butchered that spelling.) and that his heart was beating with the help of chest compressions. She told me to call Shane and that she would be right back. I called Shane and told him what was going on.I called my mom. I texted facebook and blogger to get people praying. I did the only things that I could do- spread the word so that prayers could be going up. As I talked to Shane, I told him that I felt like we were going to have to choose when enough was enough. He told me I was wrong, but I knew. I knew this was the end. (Thankfully, we never had to make that choice, Joshua made it for us.) The nurse came back in and told me they were still working on him. They were still doing chest compressions, and that things weren't looking good. He was hooked up to the vent. They had given him another 6 shots of epinephrine and they had just a tiny pulse. I will never forget the look on that nurse's face. I will never forget the next words that came out of her mouth. She said "Jill, you need to come in and hold your baby." She led me out of the room and back to Joshua's room. The room was packed with more people than I could count and it looked like a war zone. There were syringes all over the place, machines, wires, boxes, tubes, wrappers everywhere. They pulled up my recliner next to his bed and gently lifted Joshua's limp blue body into my arms as I sat down. I held him, told him I loved him, and prayed for him. I asked Jesus to heal my sweet baby in His arms. They turned off the machines, the vent, the monitors and Joshua was gone at 8:58 am. My precious baby that I had loved and fought for. He was gone. I sat in stunned silence- knowing that I would never see his beautiful eyes look up at me again. I asked the nurses to take the vent out of his mouth and to disconnect the tubes and wires. I asked for them to take all of the equipment out of his room. It was just me and him for a few brief seconds. I knew I had to call Shane. By that time, he was already on his way down. I will never forget our brief conversation. I told him that Joshua was gone. Shane cried out, pleading with God. "NO!!! NO!!! NO!!!!" I told him that I was holding him and that I would hold him until he got there. I told him that I loved him and to please drive safely. The pain was unbearable. If I could carry the pain for him, I would have in a second. Seeing him go through it, and dealing with the pain of Joshua's loss was enough to almost kill me. By the time I hung up with Shane the chaplain had come in. She asked if I wanted to be alone, and I told her I didn't. The nurses asked if they could call anyone for me and I gave them a few people to call. I sat with my baby, lifeless in my arms, and told him how good God is no matter what. I said it over and over and over. "God is still good sweet Joshua, God is still good." I prayed, I cried, I worshiped, I rocked my sweet baby. I know this is probably hard for you to read. It's something that I relive every night before I fall asleep. I can't get the images of him dying out of my head. The images and thoughts and feelings are enough to make physically sick. Writing is so deeply personal and therapeutic for me, and the fact that I am able to write about it speaks volumes about my healing. Thank you for sharing this burden with me and for praying us through this. ______________ The Day Joshua Died I've blogged about the morning that Joshua died, but I don't think I've ever written about the hours after he died. That morning, I carried Joshua in my lap the entire trip home. We could have had him transferred by a hearse, but I could not bring myself to even think about him leaving us. We were given a transport paper- permission to transport him ourselves. They tried to put him in a basket with blankets. I couldn't bear to put him in a carseat. What was the point? But I couldn't bear to put him in the basket in the back of the van either. What if it fell over or rolled around? I asked if I could carry him in my lap, and they said yes. We got onto the highway where the traffic was at a dead stop. He was in my arms, covered in a blue blanket given to us by our friend Kristine. It had his name written on it. His skin started feeling cooler by the minute. It was a sunny day. I held him in the blanket, but wanted him to be in the sun. He had never been in the sun before. I just wanted it to warm his skin a little. Maybe the sun would bring him back. But I knew I didn't want him in the sun. He was dead. The warmer he got, the faster he would start to rot. Oh, God. My baby will rot. He's dead. I held him. Covered in that blue blanket. Sitting in the sun. Praying that the sun would warm him. But hoping it wouldn't warm him too much. I looked at his fingers- his nails turning black. All I could think was that I wanted to run. He was with me and I wanted to run. If only I ran with him, he would never leave me. But then I remembered the rotting. Running with him would not bring him with me. It would not keep him. It would not bring him back. We drove 2 hours in the car with him. We didn't stop. Shane and I both held our breath every time we passed a truck. We weren't doing anything wrong, but we didn't want a trucker calling the police on us for carrying a baby in my lap. I couldn't bring myself to explain to a police officer that I was carrying my dead baby in my lap on his first trip home from the hospital. His only trip. We finally arrived at home. Hannah was 2. She was standing in the doorway of the back door. I hadn't been home in almost 2 months. All she cared about was that mommy was home! And then she saw a baby in my arms. I will never forget the look on her face. She was so happy that her baby brother was home too! She didn't know. And then there was Caleb. He was 4. He was standing in the back room. My mom and dad behind him. The look of pure joy on his face. His mom and baby brother were home. Life would soon be normal! He didn't know either. We asked my mom and dad to step outside for a few minutes. We walked through the kitchen into the living room. Hannah on the floor, beaming. Caleb on the couch next to Shane. They were holding Joshua. And then we told them. Joshua was dead. Hannah smiled and crawled into my lap. Shane and Caleb wept on the couch. Hannah was the lucky one out of all of us. She didn't understand what was going on. She was spared the devastation. After a few minutes of crying as a family, we asked my mom and dad to come back in. They held Joshua and cried with us. My dad was at the hospital within an hour of Joshua dying. He planned a visit for that day- unknowing what would happen. We spent an hour or so with him in our home. The funeral home knew we were coming. We couldn't wait too much longer. We had to take him. We drove down the street to the funeral home. Once again, Joshua in my lap. When we came to the parking lot of the home, I remember wanting to tell Shane to keep driving. Not to turn- if we just kept going, then we could keep Joshua forever. But he turned and I was reminded that our reality didn't involve living with Joshua. When we got there, the building was locked. We knew the director was coming, so we waited in the parking lot. There was a corn field next to the building. We walked along the edge of the field. The kids picked an ear of corn- excited to see what was inside. I remember looking at that field and being bothered by the life that was in it. It took me a few months to figure out why that field bothered me so much. Finally, the director came. We followed him inside and sat with him for a few minutes. I don't know what I was expecting at that moment, but I wasn't expecting it to all happen so fast. He asked us a few questions, we told the kids that we would not be bringing Joshua home again, and we said our good byes. My arms literally ached the moment I handed his body over to the funeral director. They were empty. That was it. And then we went home. When we got home, there was a pot of beef and noodles sitting on the stove. Some friends from church came over while we were gone and left dinner for us. I was so thankful for that. I had not eaten all day. I was exhausted and hungry, but when it came to eating, I couldn't do it. I took one bite and that was all I could eat. While everyone else ate, I went out to unload the van. Everything looked so different, yet the same. I hadn't been home in almost 2 months. Most of my things were in that van. Joshua's things were as well. I started unloading his things first. I wept. What was I supposed to do with his things? He didn't have a bedroom of his own. I didn't want it in our bedroom. I couldn't put it in his crib. I pulled the mobile out of the van and I fell to the ground and wept. What was I supposed to do with this stuff? Shane came out and took over. He told me to go upstairs to our room and rest. He would take care of unloading the van. I had never been more thankful for his strength. I'm still not sure how he survived that day. The strength he demonstrated that day is something I will never forget and something I will respect for the rest of my life. I went up to our room and I fell apart. My eyes were puffy and burning. My contacts were stuck to my eyes. I sat down on the edge of my bed and I wondered how I would ever pick up the pieces and live again. I felt my breasts. They were full of milk. I had been pumping milk for Joshua every 2 hours for the past 2 months. I hadn't pumped since 4 am that morning. I went into the bathroom and put together my pump. I held the shields up to my breasts, but could not bring myself to turn the pump on- not even enough to relieve the pressure. Again, I wept. My breasts were a painful reminder of what was gone. I needed to endure the pain of engorgement because the emotional pain of pumping was much greater. I went back to my room, sat on floor, and wept again. In that moment, Shane came into the room. He pulled the door open and the click of the door startled me. I jumped. My heart raced. I began to sweat. My reaction scared me. I knew at that moment that in the upcoming days, I was going to face more than just grief. I was going to face fear, anxiety, and restlessness. I knew that things were never going to be the same. I don't remember much else from that day. It was all a big blur after we dropped Joshua off at the funeral home. I remember that night, after the Caleb and Hannah were in bed and my parents had gone home, getting online and seeing the horrible things people were saying about and to us- that I killed my child, that we deserved for him to die, that we cared more about his penis than we did his life. I remember feeling shocked at how horribly people were acting and wishing that it would just go away. I remember Shane's family coming in at some point. But other than that, I don't remember much of anything else. I do remember that night, when we went to bed, Shane fell asleep quickly. I laid in bed, trying to close my eyes, but I was haunted by that morning. All I could see was Joshua dying. All I could see were his eyes looking up at me, begging me for help, or telling me that he loved me, or saying goodbye. I relived that moment in full detail, all while jumping at any sound. Sometimes, I need to remember these moments. Sometimes, memories come to me that I had forgotten. Sometimes, I feel like I'm crazy and over exaggerating my grief and anxiety, and I just need to write out what happened as a way of reminding myself that I'm not crazy. And sometimes, I need others to know what we have been through. I need them to remember. But mostly, I want my children to eventually know what it was like. I want them to be able to read my words and understand why I've struggled as much as I have- never because of anything they did or were responsible for. I want them to understand fully what happened, when they are ready. So I have to write. I have to write to remember, and to share, and to remind. Thanks for listening. Joshua's Broken Heart archive.fo/MQJ9Z The Day Joshua Died archive.fo/W3VBR The Morning That Joshua Died archive.fo/t98mN The Tragic Story of Joshua's Circumcision According to His Mother archive.fo/aITxy The Real Life of a Redhead fierceandfiesty.blogspot.com… "By reading Jill's now-deleted blog post, you can see her take on the full burden of blame for her son's death. Not once does she speak out against the unethical doctors. Not once does she show any anger towards the surgeon who nicked her son's artery and caused a hemorrhage. Not once does she ask if the medical staff truly intervened soon enough or with the right tools. She takes on all the blame." ~The Guggie Daily web.archive.org/web/20110906…

Circumcision is excruciatingly painful. It involves multiple tissue-damaging steps, including tearing, crushing, and slicing of a highly sensitive part of the body – anesthesia usually works poorly or not at all, it slows down surgery so many doctors skip it.