Regrets

For most of my life I actually have had very few regrets in my life. I have almost always done what I thought was best based off of my internal guidance and intuition. It has guided me well. The only times it has faltered were in times of fear. As with most people, when I am in fear I am unable to tap into my inner knowing, listen to the wisdom and do what I knew was right for me and my life. My TTTS pregnancy, hospitalization, birth and the boys NICU stay was a time of deep, cell shattering fear. Not fear for me, never fear for me but fear for my boys and their lives.

So why do I bring this up now? A couple of friends of mine posted on facebook a wonderful video a loving family created to chronicle their child's 10 day life on this earth. So many pictures with family and friends. Time spent together with clear knowledge that every moment was a moment stolen and a gift of love. While I know that there were tears and pain and sadness, this beautiful family seems to have been able to remain in the beauty and love of the moment. They were present and loving what was now. Here is the video, if you wish to watch it.

And so I regret....
I know that my love and joy for Eli's life was as strong and powerful as the lovely family in the video
And
I was so filled with fear and physically exhausted from the experience of TTTS I did not share the amazingness of my boys during my pregnancy. My sister asked for pictures of my pregnant belly and I straight up refused. I am saddened that I do not have more of those. I am saddened that I did not have more joy during my pregnancy. I did not speak to people while I was in the hospital on bed rest nor did I want anyone to visit me. It was fear, all fear, for what might happen. I was frozen inside and I internalized it all.

Now of course I could have never guessed that Eli would catch an infection and end up dying from that infection before he was 2 weeks old. And I wish I had more pictures of him and his family members who came to see him. I wish I would have made a point of others seeing him. I wish. I wish. I wish.

I could say that TTTS took all this from me and in part it would be true. But if I were to be as true and honest as I possibly can be, from the deepest part of my being, I would have to admit that it was my fear of the future and what might happen that truly took away the moments I now regret never happening during Eli's life. I know that I had every right in the world to be as fearful as I was and I have been complimented on just how strong and brave I was. And now almost 3.5 years later I can understand and say publicly that my fear stole things from me just like TTTS did. I had little control over the TTTS. I had complete control over my fear.

So, what do I do now?
I grieve and forgive all that I believe I lost due to my overriding fears.  Once I have done that I will begin to choose a different way of being. I have understood for a long time that fear of the future steals from the love and the beauty of now. I am finally strong enough to experience the grief of my fear, heal it and choose to be different for myself and Nolan. Always with a undying love and gratitude to one of my most beautiful of teachers, my son Eli.

I let go of my fear and regrets, forgive, and move forward and learn how to choose love over fear
Every
Single
Time

A Month of Small Celebrations - December 16

Small Celebration

There are times when my mind moves so quick that my typing cannot keep up with it. This is one of those times. Guess we will see how this works.

Since I learned about the deaths in Newtown, CT I have been on edge. I felt like I was wandering around lost and nothing I did could change that. And then finally, tonight I cried. I cried in pain and sadness for the parents left with out their children to care for and watch grow up. The tragic end to those 20 lives on Friday touched off my own grief and sorrow that I still carry with the death of my Eli. Tonight I stepped outside in the cool dark night and cried as memories of the morning of Eli's death ran through my head. His heart rate was slowing but when I sat next to him talking to him, touching him, he stabilized  He knew I was there. And it held his death at bay. For a little while. Until it didn't anymore. I remember sitting numbly on the couch in the room when his heart stopped and the medical team worked to revive him. I didn't cry. I didn't move. I just stared. When they were able to get his heart beating again I looked to the doctor and he nodded and I went back to his bedside. I talked to him, told him I loved him and that I would give him everything I had to help him fight. But if he needed to go I would be ok. He started to crash again and the doctor asked me if I wanted them to begin resuscitation again. I looked at his little body and I knew the fight was over. I screamed no, in a voice that still does not seem like it came from me. And that was it. They quickly removed him from all of the tubes attached to him, wrapped him in his star blanket and handed him to me to hold. He died in my arms. I can see all of this like it happened just moments ago and sometimes, like tonight,
 it feels like it was just moments ago.

So, why am I sharing this now? Because I finally cried the tears I needed to so that I could understand and share what I am feeling about what happened in Newtown. My situation is different but I understand the death of a child like only someone who has experienced the death of a child can. I am familiar with the road those 40 parents and hundreds of family members and friends will walk, crawl through and throw themselves down on in rage, hopelessness and bitter ugly grief. I am still on it. I feel their pain, truly feel it in my own body and I wish that somehow I could do something so they would not have to experience it too. But I can't. Not now. Their children are already gone from this earth. And there is nothing that can be done to change that. But I believe that there are things we can do as a society to try to stop it from happening again.

My small celebration tonight was to have my son fall asleep in my arms. Now that he is a big boy he does do that very often any more. But tonight, I got to hear him breathing, watch his eye lashes flutter. As he relaxed fully and completely in my arms, safe. For this moment, safe.  Which actually is not a small celebration but one of the biggest ones I could have.

This picture is of my Nolan at about 3 months old, or if he had been born on his due date, maybe a week old. This is how he fell asleep in my arms tonight. How I wish I had both my boys here to rock to sleep tonight.

A Month of Small Celebrations - December 1

December, Christmas, the holidays.

This is my third one without my son Eli to celebrate with Nolan and I. The first Christmas I was numb. Nolan had been home from the NICU for only a month and Eli had only died three months earlier. I was struggling to remember to breathe and still trying to heal from a traumatic pregnancy and birth, an extensive c-section and a stressful grief filled hospital stay. I was caring for a medically fragile child and filled with worry. Sometimes getting out of bed was an accomplishment.

The second Christmas, last year, I was rear ended while sitting at a stop light on December 5th. It was a five car accident and I was hurt. I went to the emergency room that night and then went home. Once again, sometimes getting out of bed was an accomplishment. I lived off of pain killers for months. I couldn't lift Nolan up at all. If it wasn't for the help of my mom I don't know how I would have cared for him. Christmas was tough but once again I was numb to the full experience of not having Eli here with us.

This year I have come to realize that this year is going to be the time for me to fully experience the holiday grief. I have been crying regularly and at unexpected times for the past couple of weeks. I know this grief needs to be expressed and released and I want to do that. I will allow myself to cry as I need to and honor my sadness
And
Within that I need to make sure that I honor the celebrations of the holidays. I love Christmas, always have. I have some amazing memories of Christmas with my family as a child and as an adult. I want to make sure I continue to have those memories for myself and for Nolan
So
I have chosen to make December a month where I make sure I see the small celebration everyday. And today is December 1st.

Small Celebration

This morning I was able to set Nolan's bowl of oatmeal on his tray. I gave him a spoon and with a little help he fed himself. He was so excited to do it he yelled "YAY!" after the first 5-10 times. When I had to step away from his high chair I took his bowl and set it on the table and he threw a fit until I gave it back to him.  This is a big celebration because this is the FIRST time he has ever been able to have a bowl of food on his tray and not play in it.  His sensory issues would interrupt his eating and it would be almost impossible for him to do this. I am so proud of him! And even better than that he was proud of himself.

In closing I wanted to post a picture I created last night. December is TTTS - Twin to Twin Transfusion Syndrome - Awareness month. We need more general OB's to understand the dangers of TTTS for identical multiples pregnancies. We need more mothers pregnant with identical multiples to be knowledgeable about TTTS. We want more twins+ to grow up healthy and together.

Silly Little Bears

About six weeks ago I lost Nolan's teddy bear.  We went down to Tucson and somehow it did not make it back home.  I looked in all the places I could imagine it would have been left but no.  It simply disappeared.  Nolan loved this bear.  He used to crawl with it.  He figured out how to move his legs so that he could crawl and not end up crawling on it.  He used to grab it by the ears and mush it in his face.  When he went to sleep at night it tucked it under his belly and slept on top of it.  He loved this bear.

But, if it is possible, I loved it more.  I got this bear as a gift shortly after I found out I was pregnant.  It was a gift from a very good from of mine.  As soon as I learned I was having identical twins my friend bought another one.  Now my identical twins would have identical teddy bears.  After I learned about the possibility of TTTS, the diagnosis, the procedures and hospitalization these two bears grew to mean even more to me.  They became the symbols of my little boys fighting for their lives.  I slept with them in my arms every night to hold them close and keep them safe.  I would hold them when I spoke to my boys or would go into meditation about the boys. When I flew to Houston for the laser surgery the bears came with me and spent the night with me in the hospital.  After my water broke and I was hospitalized until I had the boys these silly little bears were with me, in my bed the entire time and did not leave my side until I put one of them in each boy's nicu room.  There they stayed.  Placed on a shelf to look down on the isolette, they watched over their little boy. When Eli died his bear moved to Nolan's room and was placed on a different shelf with Eli's other things.  Every night I spent in Nolan's nicu room was spent with Eli's blanket and teddy bear in my arms. Now, Eli's bear and some of his other things are in Nolan's room in a cabinet.  These silly little bears were symbols of my boys and gave me something to hold when I was filled with such fear and then such grief.  Those two little bears were a saving grace for me through it all and now they have been separated.

Since then I have bought a couple of different stuffed animal options for Nolan but nothing has stuck so far.  I got two more bears from the same company as the first bears.  Yes, two, in this case it was too hard to think of only buying one of these bears. I still don't know what I will do with two, maybe keep one as a back up. Of course they changed how the bear looks, which made me cry.  Nolan, my sunshine and happiness boy, is no worse for wear with the loss of his teddy bear but it still brings me to tears.

Post Surgery

It has been a week and half since my ovary-ectomy and I have been healing well. I have a tendency to treat these types of things rather casually and then wonder what the heck was I thinking afterwards. It's probably part of my "rose colored glasses" syndrome. While I absolutely can be sarcastic, deep inside there is always a part of me who is looking to find the positive in every situation. While I have been challenged in that talent in the past couple of years I find that it has honed my skills in finding the positive. As a matter of fact it taught me to sit and wait through the pain if need be because there would be something positive coming. Who would have thought?

Anyway, I made it through the surgery and the after effects of the anesthesia, no throwing up, no violent shaking just the usual waking up in pain. Once again I couldn't lift Nolan for a couple of days so my mom, the 65 year old body builder (lol) was my muscle in caring for my son. Thank goodness for her!

My belly is still a little lumpy from a couple of the incisions but I know that will heal and go away. I have been wondering about any emotional feelings about having one of my ovaries removed. I thought I might feel some sadness or feeling of loss, but I don't. Either it has not shown it's face yet or because I still have one working ovary and do not need any type of medication maybe there is no grief to experience? I will learn next week what the doctor hears back on the pathology of it. It is my greatest hope that this be done.

I have been having some challenges with "where I want to be" right now. I am a member of a good sized online community who have come together because TTTS impacted their life somehow. I am a member of two grief groups, co-admin of one, and then a member of one larger general group. I have been questioning my need to be there and who/what I am serving by remaining. I love the parents I have met there, especially the loss parents and the thought of leaving is hard but I just don't know if I am making a difference or helping anyone with staying. Everyone has a limited amount of time they have to give to any one thing, whether that time is 30 minutes a day or 30 hours a week and because I feel so connected to some of these beautiful people I am at a loss in deciding what is my available time. I guess I will know this answer when I know it and so I will wait.

I am also a part of a grief support group that sends care packages out to newly grieving TTTS mothers/parents just to say I know, I have been there, I am sorry for your loss. I sent my 2nd package this week and I got a message from the mom I sent it to saying thank you. That means a lot to me. I went through much of the loss of Eli and Nolan's NICU stay by myself, by my choice. I had support from my mom and a good connection with a couple of the NICU nurses there but I didn't talk to anyone who had gone through it. I wonder if it would have helped? For as passionate as I am in offering support it is interesting that I never even asked about or looked into getting some for myself?

Eli died 19 months ago tomorrow morning. I had a big cry last night. It just hit hard out of nowhere. Sometimes it is still so difficult not to wonder how Nolan and Eli would play (or fight) together at this age. Nolan is so beautiful and full of spirit and joy. I have had the thought that if I had both of them here with me that I would explode in love. I don't know how my human heart could hold the experience of having two sets of Nolan's eyes looking at me with love like he does. Then my human heart hurts because I will never know, at least not in this lifetime.

Nolan and I went for a walk a couple of days ago and this was the Eli sky we were gifted to see together.

Thank you Eli.
We love you.

Gifts, Accidents and Rudolph the Rednosed Reindeer

I am an emotional girl these days.

Because of my car accident, I am back to daily doctor visits or some days two if I or Nolan have another doctor appointment. I have prescriptions for oxycodone, valium and motrin. For the first time since the accident 11 days ago, I tried to not take the oxycodone today. I made it 4 hours before I was crying in pain and needed to take that and valium so I could sleep. PS - the valium is for muscle spasms - works really well. And all of this in time for Christmas. Nolan and I won't be able to see his great grandfather before Christmas this year because I don't think my back can handle a two hour car ride there and back. My mother - bless her heart - is doing all of the heavy lifting with Nolan. And he is heavy, my little 25lb chunker. And that boy moves. Not walking yet but has a supersonic crawl. And I am missing it because I am at the doctors again or napping for the break I need for my back.

I am getting an MRI done tomorrow - which I guess is a good thing. If there is something worse than obvious injury from the accident going on it would be good to know. But it scares me in that it continues to stop me from being active and caring for my son.... Guess I will know more next week with the official results. I know the body heals itself, even miraculously. We have done it already and we can do it again.

Then it is the second Christmas without Eli. I am obsessing about what I will do with his stocking on Christmas morning. It has to hang with his brothers and it breaks my heart to think of it empty..... I believe inspiration will hit or Santa will work his magic but right now it makes me cry.

When I was in the NICU last year, I was a new mom and wanted to sing to my babies as I held them but I couldn't think of any lullabies so I sang Christmas songs. What can I say, I knew them by heart.... Rudolph the Rednosed Reindeer was the song of choice. Well, tonight I was feeding Nolan his dinner by Christmas tree light and Rudolph came on. I started singing, he started dancing and smiling in his chair and I started crying. I am sure my son will always wonder why he feels so connected to the song Rudolph the Rednosed Reindeer and why his mother always cries when it comes on.....

I am excited about something though. I went to Kohl's - with the help of my mom - and bought 20 books of "Wherever You Are My Love Will Find You". They are selling them for $5 for some charity and I bought them to give to the NICU in Phoenix Childrens Hospital. I am asking that they include them in the grief package a parent gets when their child dies in the NICU. I am going to write a short note and mention how this gift is in honor of Nolan and memory of Eli. I think I have saved money to buy another 20 before Christmas so we can donate 40 of them. Cried about that too.

Got good news on the cancer front. All the blood tests came back clear. I am VERY low on vitamin D though. I was having a problem before my thyroid was removed and now not having a thyroid can make it worse. More blood tests in 10 weeks. We will see how those go.

So it seems the drugs are kicking in. I will leave you with a final picture. My little man laughing at the cat Tobey that grandma Judy has flying through the air in front of him.

A Song and A Prayer

I cannot believe it has been over a month since I have posted! I guess moving will do that. I sat down and started to write 3 different posts and all the boxes and all that I needed to do stopped me from being able to focus. Still have boxes but most of them are in the garage so I can't see them right now. ;)

I just want to share a prayer I say with Nolan every night as I rock him before he goes to sleep. I have been doing it since he was in the NICU, after his brother died, so that he would always remember just how amazing and powerful he is, my earthbound star child. And then I added some extra to it when I was first diagnosed with thyroid cancer. Asking, praying, setting the intention that he would always have a legion of angels to support him and love him.

You are a child of the Universe
You are a child of God
The light of God shines down
Upon you
Through you
Radiates from you
You are a Being of Light
Your Eli, angels, guides and guardians
Surround you, support you, love you, guide you
Help you, hold you, heal you and keep you safe
And so it is.

There is also a song, that I made up, that I used to sing to him nightly. I started shortly after he came home from the hospital. Then over the past couple of months I stopped singing it since he didn't seem interested anymore. A couple of weeks ago I started singing it again and now when I do he smiles and laughs. He remembers. :0)

I love you
You love me
We're a loving family.
With our angel Eli watching over us
We'll be together for always.

November 8, 2011 we celebrated the one year anniversary of Nolan coming home to live. After 66 days in the hospital my baby boy was home.



Making it on a song and a prayer.

First Birthdays and Angelversaries

So last Sunday was my boys' first birthday. How strange to only celebrate with one of them. I held the party at a beautiful park. So many family and friends joined us in the 110 degree heat - Oh My Goodness.....

I was really excited to celebrate Nolan's birthday. I feel like he got shorted. He and his brother came very early - before the shower. Then of course Eli died and Nolan was in the hospital for over 2 months after that. When we did have a baby shower, it was very small. The situation of my boys' birth just did not leave much room for the celebration my little miracle deserved. So, I was so very excited to give Nolan the party he deserved where he would be celebrated as he should have been.

It was an emotional day for me, very up and down, tears and smiles, and sometimes both. One of Nolan's and Eli's NICU nurses, Amy, joined us at the party. The moment I saw her walk up to the party I started sobbing. I surprised myself. There was such emotion that sprung up when I saw her, the gratitude for her care of my sons, her connection to Eli and the fact that the last time I had seen her was the last night Nolan was in the NICU. For a couple of months after Nolan's release I would call/text her with questions or concerns, she was always there for me. She truly was a guardian angel to Nolan and I during the first months of his life.

Amy feeding Nolan with me watching - she taught me how to feed Nolan!

There were a couple of more times throughout the party where I shed some tears, whenever I spoke of Eli. About midway through the party I invited everyone to take a sharpie and write a note to Eli on a balloon so it could be released to him at the end of the party. I could barely get the words out before I started crying. We released them at the end of the party. They had notes of love written all over them.



I am coming up on Eli's one year angelversary. That is a term many mothers who have lost their babies use to explain that devastating day when their child left their arms forever - angelversary. I CANNOT believe a year ago today I still had two little boys living, developing and growing as they should have been. A year ago today was the first day that I had held both of my days in one day and I held both of them at least once everyday until Eli's death. I want to do something special with Nolan in memory of his brother but I don't know what yet... I guess I still have time - "A" day is September 15th. Eli died September 15th. September 15th.....

To end I want to include a picture of the beautiful birthday boy with birthday cake all over his face. I love you silly monkey!

Another TTTS Angel

I got word yesterday morning that two TTTS survivor and angels were born as another TTTS survivor died. I did not really know the mother of the survivor who lost her fight with TTTS, she was a member of my support group. She had lost one of girls in utero and gave birth to her survivor 6 weeks ago, at 28 weeks gestation (one week more than my boys). Her little fighter survived heart surgery, breathing problems, collapsed lung and finally pneumonia ended her life. She never left the NICU. My heart breaks for her family in dealing with the death of both of their babies. Blessings out to all of them.

Nolan had another follow up appt with the surgeon who did his skull surgery. As always, Dr S was thrilled with how Nolan's skull has shaped up but more importantly, he is a doctor of neurology and so when he mentions how impressed and amazed with how Nolan is developing it makes me happy. Of course I know that he has his brother to support him, help him and love him from the other side. Nolan is just over the 50% mark in growth for babies who really are 9 months old. He is off the charts for a baby born at 6 months (his adjusted age). Dr S just laughed and smiled with Nolan and said how wonderful it was to see such a healthy happy baby. Since Nolan is on state insurance he has to go to CRS to see Dr S. CRS stands for Children's Rehabilitative Services. It is a clinic set up to see children who are facing very serious health challenges. Doctors from around the city come in to see their state insurance patients. It definitely is not like a pediatrician's office where the majority of the babies are healthy. CRS is a clinic for very sick children. Whenever I see a child with health challenges I try to catch their eye to connect with them. I see the light that they truly are and somehow I want them to know that I see them, the real them, not just the body they are in.

I just wanted to mention that I did not join the mama and me yoga class. As it worked out Nolan had a doctor's appt at the exact time of the yoga class for the past three weeks. There is another option out there, I know it.

For those of you who do not know. I am 11 days into my 30 Day Muchness Challenge. A lot of my daily experiences are being posted there. Please check it out. :)

http://www.findingmymuchness.com/2011/06/piperlynes-30-days-of-muchness-day-11/

March of Dimes 2011

This morning was my first March of Dimes walk. And wouldn't you know it - Cold (in the 50's) and raining, in Arizona, in April! My wonderful sister in law, Natalie, came to town to join me in the walk. We got matching tee shirts last night and got ready to walk in honor of Nolan and in memory of Eli and Owen.

Woke up this morning to pouring down rain so I had to nix the plan to have Nolan join us in his stroller. Felt sadness about that. I really wanted this to be something we would do together but keeping him healthy was more important, so........ he stayed home with grandma and Natalie and I braved the elements; walking shoes on our feet, matching tees, rain jackets, scarfs, 1 pr of gloves to share and 1 umbrella.

I was feeling pretty good despite the late night and early morning. We even had enough time for a drive through starbucks.

We got there and wandered around the booths for a bit then I saw it. There it was. The same isolette that Nolan and Eli were in while in the NICU. At first I smiled and suddenly, out of nowhere I felt tears stinging my eyes and there was no way in the world I could stop crying. It surprised me, this sadness, it took my breath away. I wasn't surprised I was sad but that it hit me in 1.5 seconds. One of my babies graduated from that isolette to an open air crib in the NICU and then, the big graduation, out of the NICU to home. One of them did not. Neither did my nephew.

And then, of course, next to the booth with the isolette was the booth with the Angel Garden. They had foam flowers and pens available so that we could write on a flower in memory of our angels. I picked a flower and pen for Eli. Natalie picked one for Owen and we planted their flowers in that Angel Garden. I was crying so openly that a kind woman I don't know came behind me and sweetly, kindly squeezed my shoulder in sympathy. As I looked up I saw she had tears in her eyes too. She was there to plant a flower for an angel she knew. Natalie was right there crying with me. It meant so much to me that she was there and that I wasn't doing this alone.

We walked, we talked, we danced and sang. We cried. We took pictures for strangers and they took pictures for us. And when we finished the walk it was warmer and drier. There were some lone walkers, some couples, some families and some large groups. Many had matching shirts, some had balloons, signs or matching hats. Some walked in honor, some in memory and I even saw some who walked for both reasons, like Natalie and I.

I am so glad I did this and am so thankful to those who donated to both Natalie and I. I will be there next year too.
But tonight, right now, I am going to go to sleep listening to Nolan's breathing and holding Eli's teddy bear.

"Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams"

ICU Again

As I write this I am sitting on the sleeping sofa in Nolan's room in the PICU (Pediatric Intensive Care Unit). The tv is on HGTV, something mindless and gentle. The room is dim and quiet for right now. And it is just Nolan and I. His nurse has a watchful eye looking directly in the window to the room. She checks the computer monitor every so often to watch Nolan's stats. I haven't asked but I think that Nolan is the only patient under her care tonight because she is in the door within 2 seconds of one of his monitor's warning bells going off.

It's 2am and I should be sleeping, but I can't. Nolan is on a ventilator that breathes for him when he "forgets" to. One of the challenges he still has from his premature birth and his NICU days - When his body gets under great stress he forgets to breathe, apnea. Nolan had surgery today to correct a growth problem in his skull, sagittal synostosis. Basically, a small portion of his skull was unable to grow correctly to accommodate the growth of his brain and it had to be corrected. The surgery went well. He was in for just under 3 hours. The anesthesiologist had to heavily sedate him because he started coming to during the surgery. Because he was anemic Nolan also needed a small transfusion of blood to keep him stable.

And so we sit now. Nolan resting decently, sometimes. And I pray as I type this that he will remember to breathe consistently enough while sleeping so they can extubate him - remove his breathing tube. Because as it is now, when he becomes aware of the tube down his throat, he gags and bares down, trying to force it out. He cannot make a sound so he cries silently. His heart rate shoots up past 200 beats per minute, his blood pressure rises, he thrashes around in his crib, even though his arms are gently tied down so he does not harm his IV's - But worst of all - he opens his eyes and looks at me in terror. He does not understand what is happening. I barely understand..... I place my hands on him so he can feel me, call upon Eli and his angels, keep eye contact so he can focus on me and talk to him to calm him. He quiets within a few minutes - during those minutes I am in hell. Having one of my babies die is hell. Watching one of my babies go through hell is...... is..... somewhere no one ever wants to be.

I am disgustingly tired, emotions stretched tightly, in a normal world I would be hungry or be sleeping but the only thing I can focus on is willing Nolan to breathe on his own so we can take out his tube and I can hold him close to me.

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."

You've got me. I am right here.

Shortly after my boys were born they were assigned a developmental specialist who observed both of them in their daily care and made recommendations on their care. Eli was observed first. His observation time was the first time that I held him, 9-7-10. This is a part of what the specialist observed and wrote up for me. I had no idea at the time how much this would mean to me.

"After Eli's temperature was taken and diaper changed, his caregiver prepared him to be held for the very first time by his mom, skin-to-skin (kangaroo holding). Eli responded to his cares by extending his legs are arms out pushing into his nest, his mom talked to Eli softly as she approached his bed. Piperlyne gently picked Eli up and cradled him unto her chest, as Eli squirmed extending his arms out as his fingers on his hands fanned wide apart, as if saying stop. Once Piperlyne sat in the nearby chair with Eli, and with the assistance of his caregiver, they got Eli comfortable in his mother's arms, he melted in her arms from the familiar and comfort of being close to his mother again. After a couple of minutes in his mother's arms, he transitions nicely into a quiet awake state and works hard to move his head so he can look up towards his mother's face. Once Piperlyne was comfortable with Eli in her arms and all of the pictures were taken of this memorable occasion, I left mother and son alone to have some bonding and loving time together...."

Both Eli and Nolan worked very hard to look at my face during our holding times. I would say to them. "You've got me. I am right here...."