Not fair

Sometimes life is not fair. This is nothing new and anyone over 3 years old probably knows this already in some way or another
And
I was wandering through some March of Dimes stuff on the internet and I came across a statistic that I knew already, I remember it well but it still made me cry when I saw it.
There is a 90% survival rate for infants born at 27wks......
My sweet boys went from a 95%+ mortality rate due to TTTS to a 90% survival rate in premature birth. Nolan made it. Eli did not.
We fought hard. Beat the cruel odds of TTTS and just when I thought we were out of the woods Eli was gone. Another group of capital letters took his little body, NEC.
I still cry a couple times a week because of my grief over Eli's departure. But that's better than it used to be.

I am tired. I am in physical pain. I am missing my little boy tonight.
And so it is time for some pain meds, a muscle relaxer and some sleep for now.
When I wake up tomorrow I will see my Nolan's amazing smiling face and I will smile too.

From Too Much To Muchness

What do you do when you find out you are going to be a mom for the first time, just when you had given up the belief you might still get to be a mom at 42, and are single, self employed and not in love with the baby’s father? – Jump up and down for joy and trust that this gift was given to you for a reason. - MUCH

What do you do when you find out that the one baby you are expecting is actually identical twins? – Cry your eyes out in terror and joy and then call your mom to tell her so she can scream and laugh and cry in joy and shock. – TWO MUCH

What do you do when you find out that your miracle babies are identical boys and could possibly be facing a challenge called Twin to Twin Transfusion Syndrome (TTTS)? – Go home and Google it only to become terrified at what it could mean to the beautiful boys you carry. Tell friends and family who are already reeling from the death of one baby in the family. Become stiff with fear as the practical survival instinct kicks in and you learn EVERYTHING you can and start changing things in how you live 5 hours after the possible diagnosis. – too much

What do you do when you are told your babies are officially diagnosed with TTTS and it seems like they are progressing rapidly, knowing that without some type of intervention there is barely a 10% chance that either will survive? – Fly to Houston on two days notice for in utero laser surgery, borrowing money from friends and family, not knowing if the insurance will actually over the cost of the surgery. Have the surgery and learn 24 hours later that you still have two tiny little heartbeats inside of you and hear the surgeon call the surgery a success. – TOO TWO MUCH

What do you do 3 weeks after the successful surgery and feeling both babies move and kick and hiccup and grow inside of you, your water breaks much too early and you drive yourself to the hospital, the doctors check the babies, they still look good, and put you on a cocktail of drugs to keep the babies safe, promote their lung development and stave off any infection? – You bring your babies’ teddy bears to the hospital to keep them with you at all times. Visualize healthy babies with a bond of love so strong as to keep everyone safe and growing and spend your 10 days on hospital bed rest hiding from everyone so that you can focus EVERYTHING on the health and wellbeing of your little ones. – too too much

What do you do when you are rushed to the OR for an emergency c-section because one of your babies is in distress with a heart rate dropping to 15 with every contraction and give birth to two tiny, perfect little boys 13 weeks early who are rushed off to the NICU for care? – Give thanks for every single blessing you have been lucky enough to receive. – TWO TWO MUCH

What do you do when after 9 days of life one of your perfect little boys contracts an infection that takes over his body so quickly that he dies less than 36 hours later and then you have to hold a service for him while his brother is fighting in the NICU to grow and thrive? - Go numb, keep breathing, eat sometimes, sleep every so often, cling to the little boy still alive and alone without his brother and cry until there are no more tears only to cry again until you can’t breathe. – so much more than anyone should have to experience and I know too many who have

What do you do nine months later with a thriving nine month old beautiful boy who has made it through painful reflux, apnea events at home and a surgery on his skull? – Love, rejoice and celebrate the beautiful life of your surviving son while you honor, remember and sometimes still cry your eyes out over the son you lost. Know that your one heart has split into three equal hearts, one still in your body, one bursting with joy in your survivor’s body and one torn apart in grief with your angel. Embrace the life you have while you find reason and sense in the whole experience. Talk to your angel son, sing songs to your survivor about his brother, light candles, tell their story and live. – FIND MY MUCHNESS

This is my introduction to my upcoming experience of my 30 Days of Finding My Muchness. I will be starting on Wednesday June 15^th in honor of my ninth month without my angel. Please visit this wonderful website www.findingmymuchness.com to follow my journey to hope and healing.

I have also created my own project of Rediscovering Your Light on Facebook in support of anyone finding themselves in darkness or grief, for any reason, to reconnect with the love and light in themselves and their life. I would love it if you would join me there too.

Peace~

Piperlyne

The 13th, 14th, 15th -NEC - and the end of Eli's life

I hope that there is a day down the road where the 13th, 14th and 15th don't bring such pain. Right now is not one of those days.

Sept 13, 2010 - I left the NICU at 5p. Nolan was all tucked in and Eli had been a little fussy, which was unusual for him but I had held him and he finally quieted and fell asleep. I was exhausted. Still healing from my c-section and going from one boy's room to the other to help with their cares every 3 hrs, holding them once a day, making sure they both knew I was here... So I decided to sleep at home on the night of the 13th. I went to bed at 8p. At 11p my cell phone rang. It was the call. It was one of the drs in the NICU. It was Eli. He had necrotizing enterocolitis - NEC. I believe I went into shock right then and there - automatic pilot. I knew something was wrong when I left the hospital. I just knew it. The dr said I didn't need to come back immediately. Yeah, like I could go back to sleep at home. I got out of bed, googled NEC and took a shower. I knew that it would be sometime before I would take another one. I drove myself to the hospital leaving a message for the boys' father on voice mail.

I spent the night in Eli's room, refusing to leave. I was there when they saw blood in his diaper. I was there was they x-rayed his abdomen. I was there when they had to intubate him because he was working too hard to breathe. They told me I should leave the room then because it can be difficult to watch. I refused. If he had to go through it, the least I could do as his mother was to bear witness to it. I just wanted to scream at them to stop hurting my baby, but I didn't.

Sept 14, 2010 - At 6am the boys' father called me back and I explained what was going on with Eli. I remember telling him that Eli could die, though I don't think I really believed those words at that time. He came to the hospital. After that I don't know what time anything happened. I called my mom to let her know. I texted some close friends asking them for prayers and to send light, love and healing. I helped with Nolan's cares and held him. I had to make sure he knew he was not being abandoned even though I was spending so much time with Eli. I sat next to Eli's isolette and talked to him. Telling him how thankful and grateful I was that he chose me as his mother. I told him not that he was in my heart but that he was my heart. And I told him that I wanted him to stay if he could but if he couldn't it would be okay, I would understand. I touched him like even the smallest of touches would give him strength. I focused on sending him everything I had to help him make it through. My mom drove up from Tucson. I imagine I ate. Later at night the dr wanted to put him on a oscillating ventilator to help him breathe. He was having problems keeping his oxygen levels up. I watched as his heart rate went up and his blood pressure continued to drop. I don't know how many medications he was on now but the I remember how the little gray boxes were lined up in a row next to his isolette. The oscillating ventilator seemed to help. The symptoms of his decline slowed though the last xray showed that the NEC had spread to most of his intestines.

Sep 15, 2010 - I believe Eli knew I needed sleep which is why the ventilator worked for awhile, seeming to balance things. So I slept a couple of hours in that early morning. I woke up to a lot of talk in his room. They were ordering blood transfusions. Platelets first then whole blood. His blood pressure had dropped to 15. (they combine the two numbers somehow when taking an infants blood pressure. I don't know how but I knew 15 was low) But it just kept dropping all the way down to 11. I asked to be near him and the drs response was "You are the most important piece to all of this. He needs you." They cleared the space for me, brought me a chair, adjusted his bed and worked around me. When I sat with Eli things quieted. Nothing improved but nothing got worse. I know he felt me. I don't know how long I was there but when I left his side his stats began to drop. I sat on the couch and stared as he went into cardiac failure. I saw them doing compressions on his tiny little body. I heard them call for an "epi" and another one and another one. Until it was quiet. They had resuscitated him. I went back to Eli's isolette and sat with him, telling him how much I loved him. Within 10 minutes he started to crash again. The doctor asked me if they should resuscitate again. I knew the answer immediately. Why would I force him to go through that again? I said no. After I answered I felt a hand go deep into my body and pull out the most gut wrenching cry I have ever cried. It was a scream, the sound of pure, absolute, undiluted grief. I looked around numbly at the doctors and nurses in the room. There was not a single dry eye. Everyone in the room was mourning my son. Quickly they disconnected him from everything. Turning off the monitor, they placed him in the star blanket I had bought for him, handed him to me and quietly left the room. That was it. I held his tiny little body in my arms - kissing him, rocking him, talking to him, he died. He died in my arms.

Out of the many things I will remember from these 36 hours one of the most beautiful is the tears in the eyes of Eli's medical team that morning. Everyone was shocked at his quick decline. He had been so healthy and doing so well before NEC hit him. They felt the pain of his death. It touched me.

"Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress." - RUSKIN, IN HORCHLER AND MORRIS 1994,16

"Where a beautiful soul has passed, a luminous light remains."