Monday, September 27, 2010

Three Letters that haunt me... D.N.R

The mind has a funny way of remembering, forgetting and distorting the memories that create a lifetime. There are parts of Nevaeh's life that are crystal clear and things I cannot remember. I have no idea the name of the Dr. that delivered her but I remember the name of the first nurse I talked to. I dont know what happened the first hours of her life. But from day two on there was not a procedure done that I did not know about.


I was an active parent. I pushed to hold her. I fought for her. I demanded the best from the people that worked with her. I ran into people that loved their job and people that did not.  I punched a surgeon, screamed at a nurse, and demanded more from a dr. I was also supportive of the people that did their job and did it well. I listened to results. I took comfort in words. I looked for answers. I took leaps of faith and held onto hope. Nevy was doing the hard work and, I was blessed to be there.


From day one we wanted only what was best for Nevy.  As best we could we understood that what was best for her may hurt us the most. If given the choice, Tommy and I NEVER EVER EVER wanted to do anything to her that would not allow her to experience her life to the fullest. The life was not up to us to define but rather Nevaeh. We would have loved, supported and cared for her no matter what life challenged her with, as long as it was challenges she was meant to face.


There were many times during her life that she could have died. She was born weighing only 1 pound 9 ounces and I believe its is a miracle, of God and man, that we received the time with her did. She had pulled her ventilator several times and fought being reintubated. She got infections. She had surgeries. She would go from stable to unstable in a matter of hours. Any of these things could have killed her, but they didn't.


It was a choice we made seven days before she died. It was a diagnosis. It was hope shattered. It was us playing God....had we been all along? It was a piece of paper. Do Not Resuscitate. Do not save her the way you had so many times. Do not give her the steroids for her lungs. Do not give her the lasiks for fluid retention. Do not weigh her diapers. Do not follow feeding schedule. Do not look at the monitors. Do not worry about labs. Do not worry about veins blowing or her stoma prolapsing.  Do not worry....there is nothing left to do. Sign the paper. Let go. It was such a calculated choice. DX=DEATH. Sign the paper.


I had no idea how much time we would have with her. One minute would not have been long enough...seven days was not enough...it never would have been enough. I like to think she did not suffer in her death because I know she suffered in her life. I know she felt pain. I know she fought hard. I know she was tired. I know she knows she is loved. I know she knew us. I know she was a beautiful five month old little girl, with cheeks as big as apples and the most beautiful eyes. She was a soulful child that loved music and being held. She hated ventilators and could tell a good seed from a bad. She was all that was good in our world. She touched so many and allowed good people to learn things that would later save other babies life.


I am at peace with Nevy's life and her death but the DNR haunts me. For some reason that document sits in my mind as if I had a choice in the outcome. I know she received the best care possible but did I do all I could for her? Her primary care Doctor tearfully told us the tragic news. I begged her to take my heart, my lungs, anything....the form sat in front of me and we cried together.  I felt defeated. As we had said all along we would do what was best for Nevy, even it it hurt us. I signed it. We sat quietly. D. N. R... it was done...


For the next seven days I parented Nevaeh from a different place. I felt sure of what I was doing. I felt like I knew just what she needed. She ate when she wanted to. We cuddled. We called family. We embraced the precious gift of time that had been given to us. But on the last day of her life, as she lay dying in my arms, I wondered if I did the right thing. I began to bargin with God.... please give US a miracle. PLEASE. And then I heard the terrible terrible words from a woman I love dearly "time of death 636am."


The monitors went silent. The lights that had been dim all night were suddenly bright. I opened the door and with my daughter in my arms I did something I longed to do for almost five months.... I walked across a room without anything attached to her. I realized she was free and I was grateful.


I wish I never had to sign that DNR. I wish she was still here. I wish.... I wish so many things. Those three letters will always be a question mark in my mind. Should we have... Could we have... Did we? I have days I tell myself that the diagnosis was not fatal. I tell myself that I gave up on her. I didn't ask enough questions. That is my mind playing tricks on me. It is not the truth. I have read her medical charts over and over. The fact is what saved her life ended up giving her a fatal condition. It was terrible. It was a choice that had to be made. It was a choice no one should ever have to make. It is a choice I made from the deepest love for my daughter. A choice... DNR.

Saturday, September 25, 2010

I am so sorry

Last night was family night at Bodhi's new preschool. I spent most of the day thinking about it and dreading it. I love the school. I love how happy he is. I love that I get to walk him there and walk him home. I love that he loves it. It continues to be a terribly sad reminder that Nevaeh is not with us, and I am not pregnant.

I have found that family focused events open the door to family focused questions. I try to move around and avoid getting stuck in a situation where I will be asked questions. Last night I failed miserably. I started talking to a sweet woman that lives in our neighborhood, plays at the same park and as of two weeks ago, our children share a classroom.  The conversation was light...how do you like the school? How is he adjusting? How are you adjusting? And then out of nowhere she asks "Do you have any other kids?" Without skipping a beat, I said, "No, how about you?" She went on to tell me about her family and how grateful she was to be done having kids. She told me her children where the perfect ages apart...the same age Bodhi and Peanut would have been if I had not miscarried. She asked me if I wanted more, and I said "Yes, we talk about it all the time but it just never seems like the right time, ya know." She responded with a huge grin  "Honey, it never is."

I allowed myself to fall into a conversation with her. It was like no conversation I have ever had with another parent. Just two moms who have never been through hell talking about life as if it is perfect. We even talked about cooking and cleaning.  I was thinking maybe no one here will ever know the hell we have been through.. the hell we are going through...maybe I will never walk into a room to be greeted with sad eyes and silent sorrow. Maybe..maybe..maybe...

As the realization of what I had just done set in, I excused myself. What on earth was I thinking?? What kind of person, what kind of MOTHER, denies their daughter? Bodhi talks about his sister all the time. I have worked hard to provide a space for them to bond. I have answered horrific questions from him and been 100% honest. "Mama, why do we have sissy's ashes?" "Mama, where do sissy's ashes come from." "Mama, are you gonna keep my ashes." "Mama that bird is dead just like sissy." "Mama are you sad today because sissy is dead and never coming home?" Three year olds have A LOT of questions and, in this situation many of the questions are gut wrenching. I have answered them all honestly because her life is worth it and her legacy is ever so important to me.

In a moment of weakness, I let myself slip into a world I have only dreamed of. A world where things are "normal", WTF? Seriously, WTF? I am so, so, so sorry.

Wednesday, September 22, 2010

Some where....Some how

I know that I am in here. Each day passes and I am amazed that Im still standing...or sitting...ya know just breathing. Who am I?? Did I ever really know me??  With age we are to gain such precious understandings of our own personal inner workings. I have had glimpses...moments when the image in the mirror met the expectation in my my head.

I love to love. Im not so good at the day to day stuff. Return a phone call...keep a lunch date... movie... Deep dark scary secret is a large portion of where I am right now is not free. Im sick of hearing myself talk about Nevy, my marriage, my failures, I dont want to put it on anyone else's plate. I need to get the plate organized and meal planned then I think I could share again.... 

We all grieve different... but I really really really want to meet someone that has been through EXACTLY what I am going through. I want them to tell me itll be okay. I want them to tell me the amount of hard days and good days. I have searched this internet high and low I have not found the woman holding the key to my story....I get it.... I hold the key...its time to let go.

I am not giving up on me and I am not giving up on Nevy. I am choosing to move forward living and stop spending so much precious time on her death. I do not want to talk to another lawyer... I do not want to hear that I was wronged...that she got the short end of the stick...maybe she got the best end.  

Thank God for the joy that resides in my three year olds heart. I believe he gets it so much more then I do. I was pruning Nevys tree and Bodhi came running around the corner on the verge of tears "NO MAMA!! DO NOT PULL ON SISSYS BRANCHES IT WILL MAKE HER CRY TEARS FROM THE SKY" Throwing himself around the trunk of the tree. He knows her...they have a relationship unique to themselves. That makes me twice blessed.... her spirit is here and it is strong... It's my turn to lean into her strength even though it never would have been that way if she were here. But she is not here so we are writing the rules as we go. Tonight I take my daughters hand and know that some where....some how she is with me loving me and missing me to.


Wednesday, September 8, 2010

I know....

I know she is safe. I know she is free. I know that her body could not live here. I know that I am blessed to have had five months. I know my arms long for her.  I know that it was not my fault but wonder why I relive the moments that make up her lifetime and question my every action. I know that it has been four years and I am still in a constant state of sadness. I know that I am twice blessed because I have a healthy little boy who believes in some small way that I hung the moon. I know that he does not replace her. I know that he sees my tears and believes thats just what mama's do. I know I lost myself somewhere in all of this. I know I want to let go. I know some people believe it is a choice, ya know to start living again, I am struggling. 

I hope that one day my heart will feel whole again. I pray that the devastation that lives in my soul will quietly leave and allow me to live each moment to the fullest. I want to believe the best is yet to be written and life is patiently waiting for me to live it. 

Friday, September 3, 2010

The story of two blue lines....

***** A note before the post***** 

This was one of the hardest post I have ever written. It is raw and uncensored. Please know that I choose to do this as part of my healing. The events of these last years have been so straining. I needed to write this post. For you those of you that did not know about Peanut # 3, please forgive me for finding out this way. I have not been able to deliver the news appropriately to many people. I am doing the very best I can and ask for your understanding ahead of time. Peanut #3 was a mixed blessing full of hope and shadowed with so many other things. However, I loved those two tiny blues lines the same way I loved the other tiny blues lines that became Nevy and Bodhi. Despite where Tommy and I are in our marriage Peanut #3 was conceived from a place of love and was greatly wanted by both of us. 

There were two blue lines, two of them. I peed on a stick, and there were two blue lines. It has happened three times in my life and from the moment I saw the two blue lines I was in love. I could have never imaged the journey those two tiny blue lines had in store.

Neveah...... I had spent ten years of my life trying not to get pregnant. Over the course of that time, I had a few scares but every time I took a test it was only one blue line staring back at me. That all changed on an August afternoon in 2006. I had been cleaning under the bathroom sink when I found a box of pregnancy tests set to expire. I was not feeling 
pregnant and was not late. I simply decided it made more sense to take the test instead of throwing it out. I did the deed, set the test on the sink and continued cleaning the rest of the bathroom. 30 minutes later I went to wash my hands and was shocked to find a stick with two tiny bright blue lines. I was convinced the test was wrong. I went directly to the drug store and purchased three different brands of pregnancy tests that each contained three sticks. I made my way back home and into the bathroom.

This time I collected my 
pee a mason jar. I opened each test and carefully dipped them into the jar for 10 seconds. I replaced the cap and gently laid them upright on my bathroom floor. By the time I finished test number nine, tests one through five all had two tiny bright blue lines. I thought it best to let the others finish before jumping to any conclusions. Six, seven, and eight all reveled the same positive results. But nine, nine was different, it was negative.

immediately called my OBGYN and told his nurse about my findings. She politely laughed at me and asked if I wanted to come in for a blood test. DAH!!!! On my way to the office I called my husband to tell him the news. "I may or may not be pregnant." "What on earth are you talking about Meghan?" "Well I took ten pregnancy tests and nine came back positive. Before we jump to conclusions I'm gonna have the Dr. take a real pregnancy test. Ill call you as soon as I know more."

I arrived with all my tests in 
hand. The nurse greeted me at the door, and I told her all about my adventure that I day as we walked to the bathroom. She told me they would do a urine and blood test. I collected another "specimen" and then she drew my blood. I met my Doctor in his office, and he confirmed that I WAS pregnantmust of asked him if he was sure about twenty times. He flashed a enormous smile and asked if I wanted to take a look at our baby on the ultrasound machine. YESSSSSSSSSSSS!!!! I called Tommy told him the news. He was as shocked as I was. We both wanted kids but had not talked about when. We cried a few tears of mixed emotion and then I laid down for the exam. What a day it had been. One minute I was cleaning a bathroom, and the next I was laying on an examine table looking at the most beautiful heartbeat I had ever seen. I was a mama, and she was beautiful.

Nevaeh Simone 
was born February 10th 2006. She weighed only 1pound 9 ounces and was 12 inches long. She took her last breath in my arms on July 9th 2006 weighing just over 7pounds and was 21 inches long.

Bodhi...... The months following Nevy's death were such a blur. For every step 
forward we took, it felt like we immediately took five steps back. Tommy and I had no idea which way was up. We were living a nightmare that only got worse. Most days it felt like are marriage was ending and I couldn't take another loss. I needed to get away from all the emotion and decided to take a trip to Puerto Rico with my sister in-law and best friend. While I was packing for the trip, I realized I was experiencing many symptoms of pregnancy. I knew that weekend would be full of drinking and I did not want to chance anything. When we arrived in Puerto Rico, I told the girls about my symptoms. I decided it was better to take a pregnancy test before we started drinking poolside. We walked to the store, I bought a test, and went back to the hotel room. I stared in the bathroom mirror for several minutes contemplating what was in front of me. I was not sure what a positive or negative test would create. I was not scared, only worried that Nevy would not forgive me if was pregnant again so quickly.

I sat down, peed on the 
stick and held it in my hand. The first line slowly appeared on the screen. I closed my eyes and waited for my phone to tell me it had been three minutes. When I opened them it was still only one tiny blue line. Instantly, disappointment set in, and my heart was extremely heavy. I realized I had mistaken my tender breasts, severe fatigue, nausea and gut feeling for yet another stage of grief. I tossed the test, flushed the toilet and hit the pool.

Following the Puerto Rico 
trip Tommy and I temporarily relocated back to Los Angeles. He was offered a job on Die Hard 3, and my company wanted me back down to help set up their new officeWe were both excited, as it was a welcome distraction from the sorrow our Portland home held. A few weeks after the relocation I took a business trip to Chicago. On the return flight, I could not shake the feeling that I was pregnant. My body continued to ache, my breast continued to grow, and I was exhausted beyond measure. I knew I needed to take another test. Tommy was filming long hours so my baby sister offered to pick me up at the airport. I mentioned I was hungry and asked her to stop at a store. I told her I would run in quickly by myself, so she could smoke. I hated that she smoked but, for the first time in my life, I was grateful. I did not want her to see what I was buying. She was still reeling from Nevaeh's death and I did not want to get her hopes up. I purchased a box of Velveeta shells, because the sound of creamy noodles sounded to good to pass up, and three different brands of pregnancy tests that each contained three sticks.
My sis dropped me off at the apartment and I dragged my butt through the door. I started water for the noodles, grabbed a glass and headed to the bathroom to preform the ritual. I peeped into the glass and then opened each test and carefully dipped them into the jar for 10 seconds. I replaced the cap and gently laid them upright on my bathroom floor. The only difference this time was that by the time I was to test three, one and two already had two beautiful tiny lines. I watched each blue line appear on every test. I was pregnant.

It was just after midnight when I called my sister and asked her to return to the apartment. My emotions were ragging. 
I was happy, sad, scared, unsure, grateful...they just kept changing. Then suddenly it fully sank in and I thought to myself what if....what if...what if...what if. Despite the time I decided to call my best friend. She answered the phone right away, and I told her what was going on. I cried as the words came out my mouth, and she listened. I hung up the phone when my sister arrived. I showed her the tests and asked her to take me to Tommy. I packed up all the tests into a plastic baggy, and we were off.

My sister and I 
laugh/cried most of the way to Tommy. It was a crazy night on set. They were dropping a Ford Explorer down an elevator shaft. The lights were so bright it looked like the middle of the afternoon. I found Tommy and threw my arms around him. I held on for a moment and then stepped back and handed him the baggy. It took a second for it to register. He looked at me, than the baggy, then me, than the baggy. He told me how happy he was, and I cried. He said it was a second chance for us and I agreed.

Bodhi Edward 
was born healthy on June 16, 2007 without out any complications. He is three years old and the light of my life. He is healthy and extremely happy.

Peanut number three....

This 
loss is still so fresh and cuts deep. I have struggled with it for weeks and questioned the pain of my miscarriage daily.  You see I have a secret. The dark part of my heart tells me that I suffered this miscarriage because I use to question women who have been through this. I had no reference point on loss accept my own. I could not draw the line in my head, between a baby that had been born and lived five months, with one that had never gotten the opportunity to be held. People say all sorts of things to me when Nevaeh died. It was hardest for me when someone would tell me they knew how I felt...that they knew just what I was going through. For some reason, women that had miscarriages were much more verbal with me. I can not count how many times I heard, "I know exactly what you are going through I lost my baby at 8 weeks, or 12 weeks or 20 weeks hand in there it will get better." I found myself staring blankly at them while anger raged through every once of my being. My ignorance created a silent reply, "How on earth could you possibly know what I am feeling? She was a five month old little girl. She loved Bach and bath time. She was a fierce fighter with a gentle soul. I held her, I nursed her, I dressed her, and cuddled her. How on earth could your loss possibly be the same as mine??" Now, I get it.

In the span of just a few days, I preformed the 
ritual, got my beautiful blue lines, and as the shock wore off and excitement set in, the lines were gone and so was my hope. I had told my family and a few close friends about the blue lines. Then I told them about the loss and assured them I was okay. catch myself saying things like, "Everything happens for a reason....suppose it is a blessing I was not that far along.... Im young I can try again....Tommy and I were not in place to have another baby....Thank goodness there was no suffering.... I did not realize I would suffer. I am still suffering.

My last set of beautiful blue lines carried a valuable lesson. Heartbreak is not defined by length of time we have our
 babies. It comes from the love we feel the moment we know they exist and the terrible moment we know they are gone. . A mamas love is a passionate love and, for so many, it is an immediate love full hopeI am still struggling daily with Nevaeh's death (please don't remind me that I always will), Bodhi has had a few serious health scares this year, and Tommy and I continue to question our relationship and where it is headed. I wish I could say we have been to hell and back. Unfortunately, besides Bodhi, I feel like we are still in the hell part and these past weeks have pushed me into deeper sadness.