Monday, January 31, 2011

The Way You Do That Thing You Do

My Daring Nolan

The way you smile with your mouth open, sticking your tongue out when you laugh with your friend the ceiling fan

The way you rub your face in my neck when I hold you

The way you wrap your arm around my neck as you fall asleep on my shoulder

The way you shake your head at me sometimes when I ask you a question – seeming to tell me “no” at 5 months old!

The way you wiggle around when you have to burp like you are trying to wiggle it out of yourself

The way you stare at the pictures of your brother Eli and coo

The way you hold my hands when I feed you

The way you grunt, groan and growl at various times though out the day

The way you stretch the way I do when you wake up in the morning

The way you make eye contact with everyone who makes eye contact with you

The way you are so patient while waiting for your bottle until instantly you are done with being patient and you let me know

The way you wrinkle your brows and purse your lips when you seem to be thinking

The way you make small little sighs in between your swallows as you eat

The way you look at and reach out to touch your musical, night light seahorse when you are tucked in to your crib at night

The way you do that thing you do to make me love you, more than I ever thought possible. Lucky me - I am blessed.

Love ~

Your mommy

Monday, January 24, 2011

Going Inside Myself

As I do when I am dealing with anything that brings tremendous fear, I have been going inside myself, hiding. The date for Nolan's surgery has been set for February 9th and I am scared.

The surgery is to correct a growth pattern in his skull, sagittal synostosis. The surgeon has done about 100 of these corrective surgeries. Nolan's surgery is actually going to be a modified version of the more extensive surgery most infants need. Recovery should be 1-3 days in the hospital and he will need to wear a helmet for 2-6 months to help reshape his skull. The reasonable, rational part of me is happy to know that his surgery is going to be so much less than originally thought
knowing that it is coming up is bringing back the trauma of the medical ordeals of my pregnancy and Eli's death. Experiences I am still in the process of healing. My fear is so overwhelming right now that it is hard for me to breathe. It's like the elephant in the room of my life. I find it difficult to talk about. I don't know what to say and talking about it makes it way too real for me right now. It is impossible for me to hold Nolan and not cry. I go back and forth from wanting to curl up on the floor of my closet to wanting to spend EVERY SINGLE moment with Nolan. I do neither. I keep doing what I need to do to take of what needs to be taken care of and try to find my balance. Nolan deserves a mother who is strong and steady as he goes through this - so that is what I will be.

I am praying and meditating - moving myself out of fear and in to a place of love - Asking for and accepting thoughts and prayers of strength, healing, love and light for Nolan.

Tonight, I held Nolan and danced him to sleep, with his head and body resting on my chest. I am grateful and filled with love.

Friday, January 14, 2011

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."

Wednesday, January 12, 2011


This past weekend was a difficult one. I felt empty and restless. I felt invisible in my pain. It was during this time 4 months ago that Eli lived his short life on this earth. I look forward to the time when I can look back on his 11 days here with me with joy but right now it is still extremely painful.

Sunday night I received a gift of a vision. In my mind's eye I saw Eli standing at a door in front of me. Slowly I watched him open the door and invite me to step through the doorway, telling me it was okay to go through and take the next step. I trust the energy and spirit of Eli completely so I saw myself cross the threshold and step through. I felt lighter and clearer. I see that there are still many doors for me to go through in this process but I believe Eli is here with me to guide me through these steps, these doorways. The doorways of grief and healing but more importantly the doorways of love.

"I will be watching over you.
I am going to help you see it through.
I will protect you in the night.
I am smiling next to you......"
-Queensryche "Silent Lucidity

Tuesday, January 11, 2011

Perfect Words - Shared Pain

I saw a client today. This was the first time I had seen her since my boys' birth and Eli's death. She asked me how they were. I gave her the short story of my boys. I said Nolan was at home and growing well and that Eli had died at 11 days. Tears came to her eyes. "I have read books on this and I know that people often say stupid things in these types of situations. I want to make sure I say this right...... I am so happy for you and Nolan and I am so sorry for you and Eli." I was so touched by her desire to be respectful of my experience and to honor both of my sons. With tears in my eyes I responded "Thank you my dear, you said it perfectly." She told me her sister had a baby born still a number of years ago and she had seen how the wounds of thoughtless words had hurt her. We hugged.

Over the weekend I was sitting with a group of new and old friends. I spoke something about how children know of siblings who died and a friend spoke up. She began to speak of her oldest son who had died as a child many years ago and how her youngest child told her that she knew him, had met him and he had played with her when she was younger, even though her son had died years before her youngest child had been born. The story itself was amazing and beautiful, what I saw was the difficulty my friend had as she spoke of her son who had passed many years ago. She spoke with grace. Her pain obvious and still raw. She began to cry and excused herself. Later I saw her and thanked her for sharing a story about her beloved son. She thanked me for allowing her to feel safe to talk.

I am thankful for those who have shown me compassion and love in my grief. It is a gift to me to honor others' grief with compassion and love. It is my hope that I do.

Friday, January 7, 2011

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...."

Tuesday, January 4, 2011

Dreams of Babies

Recently, the nights are the hardest. I find myself not being able to sleep even if Nolan gives me a solid 6 hours of rest. I know that part of my grieving process is not sleeping.
In the past week I have had a couple of nights when I wake up with a start with the thought in my head "Where are my babies?" I take a breath and realize I have one with me and one is gone.
Then there are those times when I wake up with the left over feelings of a beautiful dream and it hurts to be here. I have no memory of what the dream was but it was loving, warm and complete and then it's gone.
Or last night, I was lucky, I woke up to find myself hugging one of my pillows. I saw myself sleeping with both Nolan and Eli in my arms, hugging them both. I watched as that faint vision left over from the dream quietly faded away and all I wanted to do was grab on to it, wrap myself in it and live in it for a little while longer.
When the house is quiet and dark and I am in bed feeding Nolan, I see his beautiful blue eyes looking up at me and I feel the loss of Eli, quite literally feel it in my body. I can't help it, I cry. I hate crying while he is in my arms. I don't want him to pick up or feel my sadness. He has such a big, important job of growing and developing I don't want to hinder it in any way. But I can't help it so I cry and watch as my tears splash on his head. I wipe them away and say that it is ok. But I lie because right now it is not ok, right now it hurts.

Saturday, January 1, 2011

New Years Eve Tears

It was a tough night for me last night. Nolan's dad came to visit him. We fought concerning Nolan's child support. I expected him to pay as scheduled or discuss with me when I could expect it. His expectations were different.

After he left, mom went to bed and Nolan was tucked in to his crib it hit me. This was the first of many New Years, all the rest of my New Years, that Eli would not be here with me. And I finally let myself admit to the fact that I have a regret concerning Eli. Living life so that I have no regrets has always been important to me, but now it is different.... I have a regret. My one regret is that I did not hold Eli that night I got the call from the hospital. Before he got so sick. Before they intubated and sedated him. I am sure I could have but I did not even ask. I am sure it was the shock. Eli was the baby who was ahead of the curve. He was moving ahead faster than his brother. When he died a short 36 hours after diagnosis everyone was shocked - nurses, doctors, me....

I think I slept maybe a couple of hours last night - And I cried. I cried hard, driving tears that came from the depth of my soul. The kind of tears that take your breath away. I brought Nolan to bed with me and cried. I cried for my one regret, the rest of my New Years and simple straightforward grief for my baby Eli.

Christmas Moment 2010

On Christmas night I was holding Nolan on my lap with his back supported by my legs. He was looking behind and above me, as he sometimes does. When he does this I know he sees Eli. He started to coo and smile a big open mouthed smile. It makes me so happy to know he is still connected to his brother. I felt tears well up in my eyes as I asked Nolan what Eli was saying and told him to tell Eli that mommy loves him. Slowly, Nolan stopped smiling, eyes wide open, became very still and continued to look at the same spot above and behind me. As I watched Nolan's face I saw a tear well up in one eye and drop on to his chubby little cheek. It was an undefinable moment as immense feelings of love and sadness enveloped me. It was a moment free of time and space. A moment in which I was aware of the three of us being together again. I began to cry.

Merry Christmas babies. Mommy loves you.