Warning, In Your Face Beyond Sad, A Reality Story. Read With Caution.
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It was this time last year that changed my daughter forever I fear. My daughter Lexie has a three year old daughter named, Alissa. Lex and her husband were elated to find out that they were expecting twins. Lexie was thrilled to share her news with everyone! She suffered from extreme morning sickness and wound up at the hospital receiving IV fluids. Prompting an ultrasound and the discovery of the twins.
When she went to her next prenatal appointment at around 11 weeks, they told her some sad news… They suspected that one of the twins might be experiencing the effects of twin to twin syndrome. A complication that can occur in twin pregnancies. Of course Lexie was at first in shock and denial. They set her up with a neo natalogist to oversee the complication. The process was slow. Lexie was going to this Dr. weekly for ultrasounds.
Around week 14, I got a frantic call from Lex. ” Mom baby A isn’t doing so well. They tell me that the intestines and the bladder are growing on the outside.” ” Baby B was fine. Everything was normal with Baby B.
This was alarming and disturbing news. I did a lot of research about what we thought the problem
could be. I became extremely encouraged that surgery could be the answer for baby A after birth.
This was alarming and disturbing news. I did a lot of research about what we thought the problem
could be. I became extremely encouraged that surgery could be the answer for baby A after birth.
A few more agonizing weeks went by. I felt so bad for my daughter having the stress of knowing something was going so wrong. Baby B continued to do well! Around week 17 things took a turn. Baby B was still doing well. Lex found out that both babies were girls. She had names picked out for them so they were no longer baby A and B. Baby A became Serenity and baby B’s name, Haley. They determined that Serenity had a condition called Limb and Body Wall Complex. It was a devastating diagnosis. It was determined that she would either die in utero or soon after delivery. My poor daughter had to mourn the inevitable loss of one of her twins while continuing with her pregnancy. It took a few weeks for Lexie to come to terms with this.
Lexie saw a different specialist and it was determined that she needed to have a surgery. At one point
they had her on standby to be flown to Texas for a very specialized surgery. This went on for weeks. With all of us wondering and waiting to hear when Lexie would be going to Texas. I was on stand by to watch my granddaughter Alissa. The tension and grief was mounting by the day. I would sit for hours and wonder how my daughter was actually faring through all of this rather gruesome occurence. They wanted to perform a procedure that would cut off the blood supply to the effected baby. She would then carry to term and deliver both babies. They feared that should the afflicted baby die in utero the placenta would shut down and kill the other unaffected baby.
they had her on standby to be flown to Texas for a very specialized surgery. This went on for weeks. With all of us wondering and waiting to hear when Lexie would be going to Texas. I was on stand by to watch my granddaughter Alissa. The tension and grief was mounting by the day. I would sit for hours and wonder how my daughter was actually faring through all of this rather gruesome occurence. They wanted to perform a procedure that would cut off the blood supply to the effected baby. She would then carry to term and deliver both babies. They feared that should the afflicted baby die in utero the placenta would shut down and kill the other unaffected baby.
The insurance company wouldn’t ok this surgery so it was determined they would do a different procedure in a local Phoenix hospital. By this time Lexie was nearly 22 weeks along. She was very devestated to actually authorize and have a surgery that would end the life of her twin Serenity. She was ripped and torn up about it. Tears and misery for weeks at the thought of this. The medical
professionals were insisting that this was the only way to ensure the safe delivery of the other twin, Haley.
I met Lexie at the hospital for the surgery. I sat with her as they prepped her for the procedure. I was there when the Dr. spent over an hour reviewing the ultrasounds. He was very unsure how to proceed. This really put my daughter on edge. He was so unsure of himself and calling around to other Dr.s to ask advice about how to do the procedure. It became clear to us that this was something he had never done nor was he comfortable or familiar with this.
professionals were insisting that this was the only way to ensure the safe delivery of the other twin, Haley.
I met Lexie at the hospital for the surgery. I sat with her as they prepped her for the procedure. I was there when the Dr. spent over an hour reviewing the ultrasounds. He was very unsure how to proceed. This really put my daughter on edge. He was so unsure of himself and calling around to other Dr.s to ask advice about how to do the procedure. It became clear to us that this was something he had never done nor was he comfortable or familiar with this.
The nursing staff would come in periodically to reassure my daughter that she was doing the right thing to safely bring her healthy twin into this world. I held my daughters hand and cried with her over the impending loss of her baby Serenity. I felt so horrible that my daughter had to make a decision like this! We were told that the procedure would take about 45 min. Lexie would be mildly sedated not completely under. I sat with Alissa and Lexie’s husband Isaiah. His mother was also at
the hospital. We all shared some tears but remained hopeful that this would bring a solution and a beautiful healthy baby in the remaining weeks.
the hospital. We all shared some tears but remained hopeful that this would bring a solution and a beautiful healthy baby in the remaining weeks.
We sat there for what seemed like forever. Two hours later we still had no word. I had to leave with my granddaughter Alissa to pick up my youngest daughter from school. No one was available to pick her up. I felt horrible leaving the hospital without knowing how my daughter was doing… Hours later I was updated that she was in recovery. The procedure had not gone as planned and it took several hours for baby Serenity to pass away. They monitored that heartbeat for hours… Which was agony for my Lexie… Just awful! She had to just lie there in wait for that baby to pass away. Heart wrenching!
They kept Lexie in the hospital overnight. In the morning, Lexie became ill and was having pain…
She called me hysterical around 10 am to tell me that her healthy twin Haley was also passing away. I couldn’t fathom all of this morbidity. I heard the devastation and the raw emotion in her voice. They decided it best for Lexie to naturally deliver the stillborn twins..She had to endure hours of labor for a empty result. She got to hold her babies. The hospital staff were sensitive to allowing them hours to be with the babies and grieve. Because she was so far along ,the babies had death certificates with their names. They were cremated.
She called me hysterical around 10 am to tell me that her healthy twin Haley was also passing away. I couldn’t fathom all of this morbidity. I heard the devastation and the raw emotion in her voice. They decided it best for Lexie to naturally deliver the stillborn twins..She had to endure hours of labor for a empty result. She got to hold her babies. The hospital staff were sensitive to allowing them hours to be with the babies and grieve. Because she was so far along ,the babies had death certificates with their names. They were cremated.
I had Lexie’s three year old, Alissa during this three day hospital stay. I had to keep it together for her. Secretly, I just wanted to scream and cry and shake my fist at whoever, whatever God allowed this to happen! I was so angry. So frustrated and so scared for my daughter. All these many weeks I worried about how my daughter was going to be able to withstand all of this. The morbidity, the long
drawn out stress of not knowing how this pregnancy would resolve. It was awful, torturous in fact. Morbid, macabre in ever sense and, a tragic loss for my daughter! I know her, shes my kid and I feared that this would create a downward spiral for her. To leave the hospital empty handed with such a horrific experience to dwell on…it would test any one and, it did.
drawn out stress of not knowing how this pregnancy would resolve. It was awful, torturous in fact. Morbid, macabre in ever sense and, a tragic loss for my daughter! I know her, shes my kid and I feared that this would create a downward spiral for her. To leave the hospital empty handed with such a horrific experience to dwell on…it would test any one and, it did.
The surgery that claimed both twins came in October, this month of last year. Right around Halloween. In this past year, my daughter has seen and felt even more pain and suffering. Her husband was suffering in his own way I suppose. Such a horrific year for her and her family. At times I’ve wondered how she was able to get up and face each day. It’s been a heck of a year for them! I sense that things are really starting to improve and stabilize for them. All of them. I’m grateful! Lexie gave me permission to tell this story. She told me that it helps her recovery to have her story told. I’m sure many others have suffered in the same way! Limb and body wall complex is devestating!
I do think that things are getting better for Lex. I hear very encouraging things. Even though this was never about me, not my tragedy…it hurt me like hell too. Omg. Even when your kids grow up, they are still your babies… You hurt for and with them! This story I will never understand or be able to really wrap my head around. It was just …. wow, OMG! This song helped me a little I guess, if anything could in some of these moments…I shared it with Lexie, she claimed it was helpful. Said she listened to it many times.
* Some things here on earth don’t make sense and will never I guess. Sure makes you question everything when you encounter such harsh realities.
I wrote the following as I was reflecting on this event right after it occured. This was my state of mind. Writing helps, I guess?
I wrote the following as I was reflecting on this event right after it occured. This was my state of mind. Writing helps, I guess?
So many things are beyond our control. Sometimes you have to just let them go. Not every lesson is for you. The hardest thing to do is to just watch and see what happens next. Remind them they matter to you. Love them all you can. A sympathetic ear, some shared wisdom, advice here and there and comfort in dark times. What else can you do? Some things in life seem so horrific it makes you wonder how they/you, will get through them. Until one day you realize that they did, you did too.
Wishing that I had what so many people do. I genuine affiliation with a structured belief. Most people have a real sense of meaningful spirituality. They have in their head a detailed in depth set of beliefs that can be applied to every aspect of life. It is all encompassing and gives them great comfort and security within themselves.
They don’t fear as much nor do they question their existence or mortality. They have so much trust. They feel as if a path has been laid out for them to follow. They feel as if a higher power is watching over them and governing the circumstances in which they find themselves. They believe with all certainty that things will never get too bad because they have a connection, an “in” so to speak with whomever they call “God”.
They don’t fear as much nor do they question their existence or mortality. They have so much trust. They feel as if a path has been laid out for them to follow. They feel as if a higher power is watching over them and governing the circumstances in which they find themselves. They believe with all certainty that things will never get too bad because they have a connection, an “in” so to speak with whomever they call “God”.
So when did I become this person? I started off with the same thinking. Even without having a structured, organized belief system imposed upon my soul. I had a sense, a hope of whom “God” is to me. Others would tell me to take off my rose colored glasses… So when did I become so full of doubt the older I get? So much of life has happened that I guess I lost my “in” with God? I’ve seen and experienced so much awful that I came to feel like no one heard me or cared. I so wanted to believe in the after world. I wanted to believe that somehow we still have a connection to, and they ability to communicate with the ones we love after this life is over. Sadly, I have seen no evidence of this. I’ve tried to study ways in which to open the door for communication and all that I have found is deafening silence! Loneliness and abandonment come to mind at times. What becomes more evident to me is the finality when this life ends. I’m not sure what is beyond this. The science of our physical bodies suggests complete closure and an end. If more exists for each one of us, it has not been shown to me. I’ve searched, I have held an open heart and mind and I will continue to do so.
What is curious to me is where we came from? We with our intricate minds and ability to fashion so much complexity! So much diversity and individualism! So very intensely intricate in every way. Infinite and infinitesimal thinking and the ability to collectively alter our way of life. Ever changing , each generation evolving into more intelligent scientific beings with endless, vast creativity and abilities. Very interesting and an awesome time to be here on planet earth. With the sharing of information so readily available the possibilities are endless. What an awesome way to expand our minds, capability and progression!
Truly confused but wanting to find hope. I think this is what I read into this…
Yet another PhD in life experience story! I’m hoping that now that I have blogged about this experience, I can put it to rest. Lexie is doing better now. I wish I could fix the world, but I can’t. I can love, be of hope and be a sounding board…thats it!
Yet another PhD in life experience story! I’m hoping that now that I have blogged about this experience, I can put it to rest. Lexie is doing better now. I wish I could fix the world, but I can’t. I can love, be of hope and be a sounding board…thats it!
*This is a pic of Alissa that I took during her 4 day stay with me while Lex was in the hospital.
