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Post by gabeandgavinsmommy on Aug 4, 2008 19:49:10 GMT -5
glassdawn, I'm sorry about your 3 angels :-( Both stories are so incredibly heart breaking :-( I'm glad you found Silent Grief and I hope you find some comfort here.
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Post by gmc4x4guy on Aug 23, 2008 16:11:02 GMT -5
My Daughter Adriana passed away when she was just 16 days old. We just celebrated what would have been her second birthday. She was our first child and the first grandchild on both sides of the family.
She was born about 3 weeks early. There weren't any problems with the pregnancy, and we didn't find out about her heart problems until a few hours after she was born. She had two heart problems; pulmonary atresia and Tetrology of Fallow (which is 4 problems in itself). Just hours after she was born, during her first bath, she started turning blue due to lack of oxygen. The nurse that was giving her the bath said she just needed some oxygen. They gave her oxygen and quickly found that she had other problems. They rushed her away, and after an hour or so, the cardiologist came in and explained the problem to us. The next day, the surgeon came in and explained that he would operate within a few days. They gave her medicine to stabilize her in the mean time.
The surgeon was optimistic but said he had lost one baby due to these problems out of the hundreds of surgeries he'd performed, but it was due to another problem that occurred, not the heart problem. He said that he was going to do one surgery so she could live, and then another at about three years old after she'd gotten bigger and more healthy. He did say that he would try to keep her off of the ECMO (heart lung machine), but if things went a little south and she had to go on it, that he would just perform both surgeries. Apparently, the ECMO machine is so traumatic to the heart, a person can only be on it twice in their life. We were at a very good hospital and other Dr's we'd talked to said this Dr. would be the surgeon they would want if they were in our situation. We felt very good about this.
After days of waiting for "the day", it had finally come. I woke up and felt great that after that day it would be all uphill and the problems would be repaired.
During the surgery, the Dr. came out and said that he had to put her on the ECMO machine and that he was going to perform the second surgery. We were devastated since things did not go as planned. When he finished the first surgery, she developed something called pulmonary hypertension, so her lungs basically wouldn't work right. He said a lot of babies experience this, but it does require the use of the ECMO machine to bypass the lungs.
After the second surgery, she was wheeled into intensive care. We couldn't believe the difference in the way she looked. She was very swollen (as we were told to expect) and almost didn't look like our daughter. Her eyes were open a little bit, but it wasn't because she was awake. They were glazed over and staring into nothing. This absolutely crushed me. She no longer looked like my daughter. She looked as though her soul was already gone and it was just her body laying there left behind. We had a priest come in and baptize her that night.
It was tough, but we held out hope and prayed several times a day that she would recover. The ECMO machine has several pitfalls that go with it. They almost all related to blood. In order to use the machine, the blood has to be thinned out to keep it from clotting. This causes things to bleed that are not supposed to bleed. Day by day, one thing after another would start bleeding. Her brain, lungs, and kidneys all had some bleeding. Each day, one thing would start to bleed, so on that day, we would pray for the bleeding to stop. Within a day or two, the bleeding would stop and it felt like God was actually answering our prayers.
A day or two after the surgeries, we decided to go home for the night because the lack of sleep wasn't doing anyone any good, and the Dr's said that if we got sick, we would not be able to see our daughter. Besides, the ECMO machine was breathing and pumping blood for our daughter, so she couldn't really leave us throughout the night. One morning just before we left home, we got a phone call from the surgeon that said our daughter developed some bleeding around where the tubes went into her heart and he had to do another surgery. Obviously we told him to do it, and in the 15 minutes it took us to get there, he had finished and all was well again.
Every two days, the surgeon would slowly ween my daughter off of the machine and let her heart do the work. Every time he did this, she would be able to do it on her own, and then crash. The surgeon thought that she may have something else going on besides the heart problems. This went on for several attempts. On the last try, her heart was estimated to be 90% recovered...and she still crashed. The surgeon then knew that there was something else wrong with her. He consulted three other surgeons that he knew looking for any ideas of what could be wrong. He also consulted with a top surgeon that we found who was featured on the cover of Time magazine. He was my Mother's, friends, daughters, father in law if you can believe it and he was trying to help us out. With all of this expert advice, there was little actual help. Our surgeon had exhausted nearly every option he had and explored every avenue.
Another pitfall of the ECMO is that you can only be on it for so long. It reaches a point of diminishing returns where infection moves in and there is not much they can do about this. The infection takes over the entire body and it is unable to recover. This happens on day 9, and we were on day 10. The statistics show that most babies succumb to infection after day 9, but some make it further.
There came a point on the last day where the surgeon said "we have to operate again". There was just one last hail-mary attempt at fixing this problem. He noticed that a valve "may" have not been closing correctly and, in theory, "could" be causing the problem. He was going to replace the valve with a valve from a cow. He told us that if this did not work, then the problem was without a doubt her lungs. They can't do lung transplants on babies and there would be nothing else that he could do.
He did the surgery, and 6 hours later at 3:10 in the morning, he came to talk to us. The news was not good. The surgery was complete and the heart was doing everything it was supposed to do, but the lungs were not. The only way to prove for sure that the lungs were the problem, was to do a biopsy, during the autopsy. He said that he would be willing to wait up to 8 more hours to see if anything else changed, but he was no longer optimistic. My wife and I decided that if we kept her alive for another 8 hours, it would be more for us instead of her. It was time to let her go.
My wife and I stayed in the waiting room and cried hysterically with our family while the surgeon we trusted our daughter's life with took her off of ECMO one last time. The time between the Dr. walking out the door after talking to us and the time I held my daughter for the last time there was hope that he would come rushing back in to say that she had surprised us all and was breathing on her own. That dream never came true.
Several weeks after the funeral we got a call from the surgeon. He said that the lungs were indeed the problem and that we had made the right choice. I guess it was nice hearing it, but we knew it all along.
To this day, I think about her every single day. I make it a point, because now she only lives in our memory.
There are two things I haven't really been able to cope with. One is that I didn't spend every waking moment with her while she was here. Whether she could have died or not is beside the point, I should have been at her side the whole time; and I was not. There were all of those nights that I left her alone in the hospital so that I could what...sleep??? What was I thinking? There were also several days where I would only spend a few minutes of the day actually sitting with her and the rest of the time in the waiting room. The reasons; it hurt me too bad to sit there and watch her knowing there was nothing I could do, and I didn't want all of the people operating the ECMO to see me cry like a baby. I know that there was nothing I could do for her that wasn't being done already, but what a crappy thing to do as a father.
The other thing that I'll probably never get over was letting her go without being right beside her. I stayed and cried with my family because I didn't want my wife to have to watch her die. Who cares, I shouldn't worry about my wife, I should have been worrying about my daughter. I should have been there for her. That is something that I will never forgive myself for.
Adriana was a fertility baby. We tried for years to have her and I know we would have been great parents for the rest of her life. We don't drink, smoke, do drugs, we're not abusive physically or verbally, we have decent jobs, and a decent place to live. So why was she taken from us? Why did this have to happen?
Everyone tries to comfort you and say how sorry they are for your loss. I don't think it was a loss. A wallet is something you lose; she was taken from us. We are decent people and she never had a chance, so exactly why was she taken from us? She never had the chance to break any laws, or violate the Ten Commandments, or treat anyone badly. What did she do that was so bad that she lost her life for? Nothing. There is nothing I could have done in my life that would warrant the loss of my daughter. People say "everything happens for a reason", "God has a plan for all of us". B.S. I can't think of any reason in the world that would be good enough for my daughter to lose her life. There's nothing. The only thing, AT ALL that came out of this is that now I donate blood because it will give someone else's baby a chance to live. That's it. My wife and I aren't any closer, countless people have big gaping holes in their hearts, for the rest of our lives, those 16 days a year will be the hardest to live.
I have not prayed since that last day. Nothing. I grew up my whole life around church. I was baptized, I was confirmed, I took communion. Now, at this point, I'm not sure anything could happen that would turn me around again. I'm a very forgiving person, but how could I ever forgive God for taking my daughter away from me. That's just my current view, but for all that continue to believe, more power to you, for you are stronger than I am.
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Post by missingisaiah on Aug 23, 2008 16:37:08 GMT -5
I am so, so, so sorry for the death of Adriana. Words do not help, I know. I am so sorry you have to be here, but I hope you find much support. About you not spending every second with her. Remember what the doctor told you: if you continued not to sleep, you would get sick and then you would not be able to spend any time with her. You say you are a forgiving person, normally. Forgive yourself for the things you think you did wrong: not spending every second with her, not being with her when she died. We cannot know the future, we are human and we make choices we later second guess or regret. This is especially true when it comes to our children, and anything surrounding their death. And, about your relationship with God. No help from me! I do pray, sometimes, but it's more me telling God how I feel than anything else. Isaiah died 22 months ago and I am still trying to figure out what my relationship with God should be and the whole point of praying. However, the way I see it, God knows I am sure there is not a single thing I could learn from Isaiah's death to make his death worth it. And, I think He agrees with me. People are fond of misquoting the Bible. They say all happens for our good, to teach us things. I think what the Bible really says is God takes the crap in our lives and uses it to teach us, not that it happens to teach us. But, regardless, there is nothing that I feel is worth Isaiah's death. God is God. He can handle our doubts, anger, etc. So, if you feel like screaming at Him, go for it. If you feel like ignoring Him, He can handle it too. Who knows, in time maybe you will start talking to God again and maybe I'll do more than tell Him how I feel.
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Post by neverthesameagain on Aug 25, 2008 21:22:36 GMT -5
gmc4x4guy - I am so sorry that Adriana was taken from you. Of course you or she didn't deserve this and of course it is wrong and there is nothing in this world that can make it right. I agree. And of course you have every right to be angry at God. HE'S GOD! He's the almighty, all powerful, all knowing. If he's so powerful then why didn't he stop this from happening? I experienced & still struggle with the same questions/thoughts.
But I want to share with you something that happened not too long after my son Marcus passed away and I was feeling all of the things you are feeling. I was so angry at God, I even told him that I hated him and there was no way I would ever forgive him and I wanted to know WHY! One night in the midst of something so big (the loss of my son), my view of God changed. I was at the point that I could not function. I literally paced the floors weeping and screaming at God how much I hated him for taking my son. Then I was so weak and so exhausted from the h*ll that I had been in since the loss of my son, that I just sat down in the middle of my living room floor, but continued screaming out and crying. I was on the floor, sitting on my knees with my head buried down on my legs and I literally could not get up. I was mentally, emotionally & physically exhausted from grieving the loss of my son. And I just mumbled out 'help' and it wasn't even to God in particular, it was just a cry for help. For I knew that I was going to sit right there on that floor and literally die of a broken heart w/o help. And there are no words to describe what I felt next. There was an amazing calmness that came over me, I was actually able to calmly breathe in and breathe out for the first time since my son passed away, the muscles in my body that were so tensed up for so long were relaxed, it was almost as if I was resting in the arms of God at that moment. That is the only thing that I can contribute it to. And from then on I've tried to focus my efforts on no longer asking God why and blaming him, because I don't ever expect to get an answer (except maybe on the day that I meet him face to face). So by questioning and blaming God, I was only causing myself more pain & heartache. And I started calling on God for comfort, because I knew that he could & would offer me that and I needed that to survive in the midst of this.
I'm not a religious fenatic by any stretch of the imagination, but I know that there is a God and that he exists. I don't know why he allows some things in this world to happen, I don't know why he allows his children to suffer. But I do know that he is there to comfort me when I need him the most, when there is nothing else in this world that could possibly calm me, I know that I can call on him.
Again, I'm sorry for what you, your family and Adriana had to endure. I wish it weren't so. I'm hoping & praying for peace and comfort for you...
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Post by gmc4x4guy on Aug 26, 2008 21:57:28 GMT -5
Well, hopefully something like that happens for me...or maybe it already has. I mentioned before that Adriana was a fertility baby. Within a year of her death, we decided that we wanted to try more fertility and have another child. We did try the fertility and we did have our now 8-month old Son, as healthy as can be. Within months of having him, without any fertility at all, we are now awaiting the birth of our second son, due in December.
Even though this does seem like a miracle to me (as any gift of life is, really) it doesn't exactly help me forgive him.
Hopefully some day I can move on and forgive God, but it could be a while yet.
I like your username. That pretty much explains it, doesn't it.
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Post by jaredsmommyforever on Aug 26, 2008 22:56:20 GMT -5
gmc4x4guy,
I am so sorry for what you all went through. It is just heartbreaking. I am so glad to hear that you are blessed with more little lives for you to share in the joy of. Of course it doesn't close the hole in your heart, but I hope it has provided just a little healing. I like to think that in doing for my living children, I am doing for my Jared as well.
I hope you will continue to find support here.
Denise Jared's Mommy Forever
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Post by almasmom on Oct 18, 2008 17:09:11 GMT -5
My husband and I decided we were ready for a child. I found out I was pregnant at the new year 2007. We were so excited and started learning about how to have a healthy baby. I ate healthy and attended prenatal yoga. We decided to have a home birth. We had a wonderful midwife and she helped us have a wonderful home birth. Alma was born at home and was very strong. Everyone was impressed how strong and alert she was. She loved to nurse and gained 4 ounces a day during the first week. At 4 weeks Alma became limp. She was brought to the ICU for 9 days as they tried to figure out what was wrong. They misdiagnosed her and sent her back home. We were home for 6 weeks as we tried to figure out if she was really getting better. We took her to Stanford where she was diagnosed with SMA (spinal muscular atrophy). It is the number one genetic killer of infants and toddlers and it is 100% terminal. We took our Alma home and spent a month and a half trying to keep her comfortable and enjoy life. We had hospice, our pediatrician, and our midwife help us take care of her. Alma Jean Yaeger, whose loved ones called her "Little Bun," passed away Monday, Jan. 21, at 1:30 p.m. at the home of her parents, Hilary and David Yaeger, in Nevada County. Alma was 4 months old and suffered from a genetic disorder called spinal muscle atrophy, or SMA. Her life was short but filled with abundant love, joy and happiness. She was very special to those who knew her, and she touched the hearts of many people she never met. She will be missed dearly and will always remain in our hearts. We would like to give special thanks to Hospice of the Foothills' staff for their awesome help and professionalism. You are the best; thank you. Thank you to all of Alma's friends. Messages and comments to Alma can be made at www.supportcircle.com. Click on "Visit a Friend or Family Member's Support Page" and enter "Alma" as the first name in the search box.
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kelli
New Member
Forever Maggie's Mommy
Posts: 42
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Post by kelli on May 17, 2009 15:50:00 GMT -5
I lost my daughter almost 3 weeks ago, yet it feels like it's been months already. Maggie was just 4 days shy of 9 months old and she died while she was napping. We haven't gotten the autopsy results back yet but I have a feeling they'll come back with SIDS.
We buried her on May Day (one day before my DH's birthday) and I haven't been back to her grave since. DH goes quite often to talk to her and just sit with her, which is fine for him. I, though, don't feel like she's there. I feel her at home, I feel her outside, I feel her in Heaven with my brother and my grandpas.
I seem to go just about every other day with my crying. Yesterday was a great day; the day before, I cried literally all day long. I guess I just needed to. Her crib, changing table and clothes are still in her room, the room she shared with my 5 year old, Piper. Piper won't sleep in there anymore, not that I blame her. I don't want to take any of Maggie's things out of the house, yet I feel like my Piper can't "move on" when her room is still part Maggie's. I know there's no hurry and with Summer upon us, I've got time to get things in order before Piper starts Kindergarten.
My friend told me about this site and that it helped her immensely when she lost her angel 3 years ago. Looking forward to meeting all of you and making some new friends.
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Post by Jaleel's Mommy on Jun 17, 2009 20:37:25 GMT -5
I am so sorry for your loss. I hope you share more about your precious Maggie!! (((BIG HUGS)))) I know how much you hurt & hope you can lean on us when you need to and even when you don't. I am thinking about you and your angel!!!! ~Stacey
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Post by angelsmommy on Aug 24, 2009 20:50:20 GMT -5
This past August 9, was like every other Sunday. We got up, had breakfast and went to Mass. After church, the kids (Angel, who was 2.5, Hanna, 4, and Maire-Kate, 10) had leftover pizza for lunch and I got Hanna & Angel ready for a nap. The next time I saw Angel, (about 20 minutes later) he was dead. He had hanged himself on a window blind cord. I knew the blinds were dangerous. I had tied the long cord up into a bow that I didn't think the kids could reach. I'll never forget pulling the cord from his neck and screaming his name. He was lifeless and cold. I did CPR while Maire-Kate called 911. The paramedics were able to get a heartbeat but he had significant brain damage. He stayed on life support until Tuesday morning when his blood pressure dropped for the final time. We had a funeral Mass the following day. His body was sent to a medical examiner for an autopsy and then he was cremated. His birthmother was Buddist and had a separate funeral for him. I still can't believe it happened. I keep waiting for someone to wake me up from this nightmare.
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Post by missingisaiah on Aug 24, 2009 20:56:26 GMT -5
angelsmom: I am so, so, so sorry for the loss of your precious boy. May you find comfort and support here.
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Post by pocooso on Nov 24, 2009 0:28:36 GMT -5
Heidi, I'm sorry for your loss. It's amazing you even survived something like this. I hope you can find someone who really does love you and care about you.
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Post by guardianangel on Dec 16, 2009 2:16:27 GMT -5
Hi I'm new here. Lost my son 2 saturdays ago. He was 5 and a half weeks old and everything I ever wanted. My husband and I are just numb. I'm still at such a loss for how to even describe all that happened. We were diagnosed early on that he had hydrocephalus. It is a genetic disorder in my family. He beat the odds. He had surgery after surgery and got to come home. Everything was going beautifully. Then one afternoon he got a little sick and had a few spit ups. After a few hours of him acting funny we took him into the ER. His lungs were filling up - he had a virus. He fought so hard for a whole week in the hospital but in the end, he just couldn't do it anymore. I'm devastated, and angry. The doctors told us he wouldn't survive the hydrocephalus... he did, he fought it all, was doing SO well and a STUPID virus had to take him away from me. It's just not fair. The doctors said we did everything right, that we were phenomenal parents. We had records of every bottle, every diaper, everything because he was a special needs child. But none of it made a difference. How do you survive after something like this? I have to go back to work Jan 4th and i'm terrified that I won't be able to do it. Jen
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Post by angelemilysmom on Feb 11, 2010 17:08:32 GMT -5
I am mom to five wonderful adopted children. My three youngest are special needs. I lost my youngest daughter, Emily, who is now forever four years old, on January 3, 2010. Emily was a fighter from birth. She was born with Congenital CMV,which left her deaf. She received a Cochlear Implant last August and was doing wonderfully. She was starting to talk and sing and was just the most precious little girl. She was the light of our family and a joy to everyone who knew her. On the morning Emily went home to the loving arms of Jesus, she rode her little bike to the neighbors driveway. In the minutes before we missed her, she got into their backyard (through the gate which was either open or at the very least, had no lock) and into their pool. My husband found her floating by the steps.... Despite the best efforts of myself and the police and paramedics we were never able to get Emily's heartbeat back. I am so devastated. My children are and have always been my life. I do not know how to survive without my baby girl. I am continuing on because my other children need me so badly, but life is so difficult now. I am glad to have found this website and have been reading for a few days. Thank you for listening.... Angela
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Post by logansmommy on Apr 9, 2010 1:40:34 GMT -5
my name is Rachel and this is most of my story. some parts are still blurry. in January of 2008, i found out i was pregnant. i was 17, and wasn't ready for a baby, but i accepted it and prepared to be a mommy. over the next few weeks, my mind changed completely, and i was so excited for my baby to be born. i went for my first ultrasound and they told me everything looked great and they thought it was a boy. a couple days later, my doctor called and said they wanted to send me to Strong Perinatal Associates (aka SPA) which is a group of specialist obgyns, fetal cardiologists, fetal neurologists, genetic counselors and other such specialists. they told me there was an abnormality with his heart, nothing serious but something that should be checked further. two days later, i was going to spa for a high resolution ultrasound. the doctors there discovered my son had a heart condition called Epstein's anomaly. it's a complex problem involving the tricuspid and one other valve i cant remember the name of. from that point on, i made a trip to SPA once a week for a non stress test and HR ultrasounds. and every week, the same thing. baby is healthy, perfect rate of growth, strong heartbeat, normal movements. My whole pregnancy went smoothly. My scheduled due date was October 11th, 2008, but when it got close to time, the doctors decided to induce labor on the sixth. My heard headed little fighter decided he wasn't taking orders from any doctor. At 4:30 pm on September 31st, my water broke and we were on our way to the hospital. At 3 am October 1, Logan Francis Ryder was born with ten perfect fingers, ten perfect toes, and the most beautiful cry I've ever heard. Because his condition meant that his lungs may not work on their own, he was given his AP GAR tests, they came out and held him in front of my face and said "this is your son. give him a kiss" i kissed his forehead and they whisked him off to the NICU. for the next four hours, i waited for them to come tell me i could see my son. Finally, i was wheeled to the NICU where i was allowed to sit and hold his hand. When you are in utero, there is a valve open in your heart. Once a baby is born, that valve automatically closes because it's not needed. Due to Logan's heart condition they had to keep his open. He was put on a drug called Prostaglandin (amongst many others) to aid in that. On October 14th, i was reading him a story when the heart surgeon's nurse practitioner came in. I knew right away that something was wrong. She told me that the Prostaglandin wasn't doing it's job correctly anymore and he was already on the max dose. We had known that he would need surgery since i was pregnant, but we had always been told they would wait until he was at least a year old. Now she was telling me that we needed to do emergency surgery as soon as possible. And then she asked if Logan was baptized. We had planned on baptizing him in a church, so i told her no. She looked at me and said 'That's something you may want to think about doing. I know this is hard for you but here are the facts. Your son is very young. His immune system is weak. There is a very large chance that he won't live very long after this, if he even makes it off the operating table" at the time, i wondered how someone could end your world and say it so cruelly. I understand now that she was only doing her job. So that night we had him baptized by the hospital's pastor, and at 9 the next morning he went for his surgery. I sat outside the hospital with my husband all day praying. god please let my baby be okay. So at around two we went upstairs to see if there was any news. He had made it through the surgery and was on the road to recovery. They kept him completely paralyzed and sedated at all times to minimize stress on his heart and lungs. Over the next couple days, Logan amazed every doctor. His vitals were great and he was well on his way to being extubated for the first time since he was born. Then on the 18th around 1 am, he crashed. His oxygen saturation dropped to 14 percent and his blood pressure was fatally low. They were giving him fluid boluses every ten minutes to keep his stats up and the excess of fluid had made him too swollen. The attending called the surgeon and he came in immediately. He opened the incision site to try to relieve pressure, and it did nothing. The next morning, the doctors and social worker told us that he was basically gone. She told us that we had two options. Number one was to keep him on life support and let him suffer. and that's basically how she put it.She said that it was only a matter of time before his body shut down on his own and said she couldn't guarantee he wouldn't be in extreme pain. Number two, we could let him go, and he would be at peace. She said if we chose to go with the second option, they would give him "something to make it so he won't be scared" and he wouldn't feel anything. We talked for a long time; and finally decided that we couldn't force him to suffer any longer. Logan's been gone for about a year and a half now and it still hurts like only yesterday. I wonder what if every day of my life. I wonder if I made the right decision, and I can only hope that I did.
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