Friday, November 9, 2012

A year ago today: November 9th, 2011

This post is about the day Marcellus died. 

A year ago today: Wednesday, November 9th, 2011 
I wrote a lot of this a couple of months after Marcellus died. I'm glad I did that then because I don't know if I'd be able to do it now. I added a few things today. As difficult and horrible as that day was, Mike and I have both talked about how we are thankful for it. If our baby had to die, we got to be there for him. We got to pour our love into him and be there as he left this world. He was not alone, he was with his Mommy and Daddy. He died in my arms that day. He died during a loving embrace with his mother. 
Dear Marcellus,

The first call regarding your x-rays that night was around 3am. Michelle said the x-ray showed an increase in dilation of your intestines, but that’s it. At that time she still didn’t know if you would go into surgery. It sounded not good, but not horrible and we tried to get more rest. We should have gone in baby, we should have been there with you through all of this, not in our bed trying to sleep. I’m so sorry we weren’t there. I am really sorry. We got another call about 4:15am that they thought maybe you did have a perforation and would need surgery. They were waiting for some test results that would show if you had lactic acidosis. If you did, that would be really bad. At 4:15 when Michelle said we should start thinking about coming back in, Daddy and I immediately got out of bed to get ready. Daddy let Perkie out and before he could even get back inside Michelle called back again and said you did have lactic acidosis and we should come in right away. We didn't say anything to each other the entire drive. It was dark and foggy. We were so scared.

We got there before 5 am, they were getting you ready for surgery. It was chaotic and there were a lot of people around you. We talked to Michelle, we talked to the doctor (Dr. Young), we talked to the surgeon (Dr. Watti), we talked to the anesthesiologist, but I don’t remember what any of them said. The day is such a blur, a really big blur. I know Daddy signed the papers for surgery and anesthesia. I know the surgeon was getting antsy to get you to the OR. I think they were trying to make sure you were stable enough to move. When they did try to move you they didn’t even get out of the NICU, your stats started to drop. You weren’t stable enough to move. I think that's when I started to realize that you were going to die. 

Things weren’t looking good for you. So instead of doing the surgery they just put a drain in your belly at the bedside. This would hopefully get enough of the bad stuff out and help to get you stable enough to go to the OR. We had to leave while they did that. We had asked for a chaplain to be with us. Her name was Jackie. She wasn’t really that good, but we needed someone with us. Daddy and I were so scared. After they put the drain is when I think I called Grandma. I’m not sure though. I just know I called her and I asked her if you were going to die. I said, "Mom, is my baby going to die?" It was the only time all morning I said it out loud, that you might die. She had to tell me she didn’t know. She knew you were really sick. She asked to talk to the doctor. I don’t remember that part. She asked to talk to the doctor because I wasn’t making sense and I didn’t really know what was going on. I was just so frantic baby, so frantic because I was losing you. Daddy and I both knew it. We knew you didn’t have a very good chance of surviving. How did this happen to our perfect healthy growing little boy? You were doing so well, so well. 

I don’t really remember much of what happened between them putting the drain in and Tawny getting there at about 8am. We just tried to be by your side and talk to you. At one point I remember telling you “Mommy needs you baby, Mommy needs you!” Was that selfish of me? I do need you baby. I do. I still need you. I still need to know you’re here with me. I didn’t want you to die. That’s why I said that to you. I didn’t know I’d be able to survive without you. I felt like if you died I would die too. And I kind of did Marcellus, a part of me died with you. 

I don’t remember how it came up, but shortly after Tawny was there she was by my side at your isolette and I mentioned that Grandma was doing healing touch for you. Tawny said Patty (another chaplain) knew healing touch. We met Patty. She came by your room before and Mommy met her with Grandma and Auntie Katie at a dinner they had for NICU parents. Tawny called Patty and Patty came to do healing touch on you. She did it for a really long time, almost the whole time until your surgery. One thing Patty talked about was a pink cloud of love over you. I can’t remember all the details. I hope that means you felt the love surrounding you that day. We were there trying to support you the best that we could baby boy.  I hope you felt that. It was so hard to keep it together though. I do remember Patty telling me to tell you about what was waiting for you at home to encourage you to stay with us. I told you about Perkie and I think I told you about your great-grandpa. We didn’t have anything ready for you at home because you came so early so I didn’t know what to tell you about. All I could tell you is how much I love you. There was one point in the morning where Patty said something along the lines that she thought you were coming back. And maybe you were coming back, maybe you were coming back to make sure you told us goodbye.

The next thing I can remember is your baptism. We asked for a priest to come and baptize you. It turned out to be quite a stressful process. The priest took forever to get there, Tawny called him multiple times. That really frustrated Mommy. In my head I was screaming “Doesn’t he know my baby is dying?!” But I wouldn’t say it out loud. Then when he got there he didn’t have his holy water.  He had the oils, but no holy water. Wow, ridiculous. Then Tawny went on a search for something to put tap water in and have him bless it. Eventually the only thing we came up with was one of our breast milk storage containers. Is it ironic that the container meant to hold the nourishment I was able to provide for you ended up holding the water you were baptized with? We still have it. We have holy tap water in a breast milk storage container stored in a biohazard bag. On top of all that the priest didn’t want to give you a full baptism because we did not have Catholic godparents present. I tried to say they were on the phone. He said he could do a conditional baptism and plus that way we’d be able to get you baptized in a church later. Again, I was shouting in my head “Don’t you realize my baby is dying?! He will never see the inside of a church!” I’m sorry I didn’t stand up for you better baby. I should have said it; I was so scared of saying those words out loud though. Even though a conditional baptism would have been “good enough” for some reason it was important to me that you get the full baptism. I think it had to mostly do with the baptismal certificate. I wanted you to have a certificate. I needed that for you. You deserved that. For a little while the priest was trying to get us to ask the nurses if they were Catholic. He really didn’t understand the severity of what was going on. Eventually he said he’d do the full baptism and around 9:30 am you were baptized while Grandma, Uncle Luke, Great-Grandma, Auntie Katie, and your cousin Nolan were on the phone.   

The whole morning all I wanted to do was hold you. I just wanted to hold you up to my chest and rock you. But I couldn’t because you were either on the ventilator or being bagged. It was so hard not to hold you. Now I can’t remember who told us about our options or why they chose to tell us about them then. I do remember Patty telling me the only way I could hold you was if we took you off of everything. Then we were told we had three options. We could do just that, take you off of everything and hold you as you went. They could continue with trying to stabilize you, but you would keep making a slow decent. Daddy told me the doctor explained it to him as like steps. You would go down a little and they’d try to get you back up, but they could never get you up to where you were then you’d stay there for a bit before going down again and repeating the process. The last option was to go ahead and do the surgery bedside. The surgeon told us if he would have just been called on you he wouldn’t do the surgery because you were so sick, but since he was called early he would do it if we wanted to. He warned us though that 1) you might not survive the surgery and 2) because you were so sick it was likely you had the totalis case and there would be nothing they could do. 

We knew we didn’t want the second option. We were either going to let you go peacefully or try to do everything we could to help you fight. Like I said before I just wanted to hold you so bad, so my initial reaction was to let you go. Just take you off of everything and let you go. We had to leave your bedside to make the decision. Tawny stayed with you so you weren’t alone. We had to make the decision regarding your last moments in the room that is used for parents to “room in” with their baby before going home. Patty came with us to help talk us through it. Daddy kept saying he wanted to do the surgery. He said he needed to know we did absolutely everything we could for you. Then I started to go back and forth on letting you go and the surgery. Marcellus, I don’t know if we made the best decision. I hope we did. It was such a difficult decision that no parent should ever have to make. After hearing how much Daddy needed to know we did everything and part of me needed to know too we were leaning toward the surgery. Then we talked to the doctor and asked if there was any chance you would survive. He said there’s always a chance. Even if that chance was one in a million, we had to give you the chance to fight. You were so brave through the whole thing. You kept fighting so hard. We decided for the surgery. 

While they were getting things ready for the surgery Daddy and I were by your side.  Honestly I can’t remember if anyone else was by your bedside, but for a few moments it felt like just the three of us in that NICU, just our family. We were telling you how much we love you and how brave you are, how proud of you we are. Daddy went and got the book “Guess How Much I Love You” – your story. It will always be your story Marcellus, always. We will always read it to you. He read it while I stood across from him with my hands on you, trying to comfort you. It was hard for Daddy to get through, but he read it for you. When he was done I got as close to you as I could. I don’t know the exactly wording but I said something like, “Marcellus, Mommy and Daddy are so proud of you for fighting so hard. We will be proud of you no matter what. You’re going to have surgery now. The surgery is for Mommy and Daddy to know that we gave you every chance to fight. So you fight, but if you need to go then go before the surgery. If you need to go, that’s ok you go.” I meant it baby. I knew I couldn’t keep you here if you were meant to go. I didn’t want you to go, but I had to acknowledge that it wasn’t up to me. Did you listen Marcellus? I don’t want to be keeping you here. You need to be enjoying Heaven. 

When it was time for us to leave your bedside Daddy came over by me and hugged me. I then noticed you were opening your eyes! You weren’t able to open your eyes all the way, but baby I know it was a conscious effort on your part to do that. I can still picture it in my head. I said “He opened his eyes!” I was excited by it. At the time I thought it was maybe a good sign, that maybe you would make it. I know realize it was you telling us goodbye. Thank you Marcellus, thank you for doing that for your Mommy and Daddy. We may have never gotten to hear you say, "I love you," but in that moment you were telling us just that. 

We went back to the same room to wait while you were in surgery. Beth came. She had gotten to the hospital before your surgery, but was just in the waiting room. I think it was after we had already decided on surgery and so Daddy and I were just spending time with you then. Marcellus I really think I knew deep down that you were going to die that day. What a horrible feeling to know your precious baby boy is going to die. They told us that they would come and get us if you started to crash during surgery so we could get to you. Every little noise in the hall made me about jump up. Then there were people coming into the room or to check on us. Finally the doctor and surgeon came in. The surgeon walked in just shaking his head no. That’s when we knew baby, when we knew you were either dead or for sure going to die. He told us you only had 7in of questionable intestine left, the rest was dead. He also said your stomach was questionable. You had made it through surgery though there just was nothing they could do to save you.  My stomach dropped. I asked to see you and we went to your bedside. I don’t remember the walk there. I do remember Daddy telling me to breath. Then I told myself yes I have to breathe because I have to see my baby, I have to hold my baby. When we got to your bedside your stats started dropping, you started crashing. It’s like you were fighting to keep your body going until Daddy and I got to your bedside. Another thing you did just for us. All I could do at first was say “My baby! My baby! My baby!” and collapse into Daddy. I didn’t realize it until I was later told that I was literally collapsing and Daddy had to hold me up. Then things became frantic trying to get you off the table into my arms. You were hooked up to everything and it seemed like they were moving so slow. They probably weren’t, but it felt like it. I know Daddy made sure he got you into my arms. He just knew I needed to hold you. They got a chair for me and I sat down with you. I wish I remembered what I said to you. Did I say loving things? Or did I just sob into you? I wanted to make it peaceful for you and I’m afraid I didn’t. I’m afraid I didn’t tell you how much I love you as you took your last breaths and your heart beat for the last time. I didn’t want you to go with only tears. I know I held you close to me, I clutched on to you as if that could keep you here. I wanted to make sure Daddy held you one more time before you went, so I handed you to him. He wanted you to be in my arms as you went, so you came back to be with your Momma. You were pronounced dead in my arms at 12:43pm. Daddy sang your song to you, your special lullaby that he made up for you while I was pregnant with you. It was so painful to hear him sing your song for that reason, but I’m glad he did that for you. Your Daddy would do anything for you. I really wish I remembered more about the moments of and after your death. I’m sorry that I don’t.  

Patty had asked me about pictures. I know that. She said there’s a photographer and did I want them to take pictures. I wish I had said yes. I really regret that. At the time I just couldn’t imagine another person coming into the room. I also thought to myself “why do I want pictures of my dead baby when I have pictures of him alive?” I didn’t know people took pictures of baby’s after they died or how much it would mean to me. I didn’t think about the fact that it would be our only chance to get pictures of you without all the stuff on your face. I wish someone would have talked me through it more.  I’m sorry we didn’t get pictures with you then. 

I do remember that a nurse tried to talk to me about what to do about my milk. I wasn’t ready for that. It was way too soon. I do remember that I pumped then. I wanted to pump while holding you. I had been so looking forward to breastfeeding you and pumping while holding you was the closest I ever got to that. I feel like we didn’t hold you long enough. Why didn’t we stay longer? Who told us we should leave? I know I didn’t want to leave, so why did I! I guess I just felt like I had to. I think we stayed for over an hour and a half after you died. We could have stayed so much longer. I really didn’t want to leave you. It was so hard to leave you. I made sure I knew that they were going to treat you right. I didn’t like that you had a new nurse that day. I didn’t know her. You didn’t know her. I’m sure she is a great nurse, but we didn’t know her and I didn’t like leaving you with her. Kathy was taking care of the baby behind you so she came over and said she would watch over you for me. That meant a lot, I needed that. Tawny and Patty were also there to make sure you were taken care of. I regret a lot of things from that day. 

Not doing the pictures, not asking to bathe you or dress you, leaving you on that table when I should have placed you in someone's arms. So many things I would have done differently if I would have known how. But baby, this was all so new to us. This world of dead babies and grieving parents, we were just entering it for the first time.

I didn’t want to leave at all. Setting you down was so hard. I kept saying, "I don't want to leave him." Then we had to walk out of the NICU knowing we would never be back in there. They had to get a wheelchair for me. I almost collapsed again. Beth drove us home. I don’t remember it. I think Daddy and I sat in the back and didn’t really say anything. Beth later told us that the sun that day was the brightest she’s ever seen it. Were you shining down on us? I hope so. I hope you shine down on us often. I don’t know what we did when we got home. I think we just crawled into bed and cried. I know people called. Grandpa called, uncle Garrett called. They didn’t know what to say. They were sad. Everybody was very sad, they still are especially Mommy and Daddy. 

Marcellus I miss you so much, so very much! I don’t know what I’m doing without you.  I don’t know how this happened. Why did this happen to us? I often feel like I’m losing my mind. I can’t wrap my head completely around the fact that you are forever gone from this earth, that it's been a whole year so I held you as your heart stopped beating. I do believe you are in Heaven and that you are experiencing complete joy, love and happiness. It’s still so hard for Mommy and Daddy though. We are still suffering. We need help figuring this out. Please be there for us. Please ask God to help us. We love you so much buddy. We love you with everything we have. I cannot wait to see you again. I cannot wait to spend eternity with my squirmy wormy! You are the best son we could ever have. Daddy and I will always be here for you. We would have done everything for you and we will try our best to still do everything for you. 

Daddy wrote a message to you on your board after you died. It's right next to the upbeat positive drawing your nurse had drawn you just a few days before. 
On the left is the drawing Angela did that says, "Blue Skies Ahead". On the bottom of the left is where your touch times were listed, it used to say 3, 6, 9, and 12. After you died Daddy wrote, "in our hearts always." On the right hand side Daddy wrote you a note, "Marcellus, If you ever get scared know that Mommy and Daddy love you more than their hearts could imagine. Be strong, be not afraid, love will always connect us." You seriously have the best Daddy in the world. I was so amazed by him that day. Reading you your story, singing you your song, and writing you that note. He loves you so much baby boy. We both do. Like he said, more than we could ever imagine.

He also write in your journal that day.
You passed away at 12:45pm in your mother's arms. All the pain you felt from the last day was gone from your face. You were in peace. Our hearts will forever belong to you Marcellus Robert. You got sic very quickly and fought on with great tenacity. Mommy and I were with you every step of the way. We never wanted to leave you scared. Even though you are gone from our grasp you are in our hearts. We are going to miss you so very much and we wish we could have given you the world! Instead you gave us 12 great days with you. 12 days which will forever change and shape our lives. 

Marcellus Robert, Born 10/28/11 at 3lb 2oz. You had such a strong personality and a stubborness that came surely from your mother. Mommy and Daddy will miss you so terribly much. We just widh you were back with us. Our lives will never be the same. 

Mommy and Daddy tucked you in forever. We love you!

Goodnight little baby, goodnight. 
The stars in the sky are shining bright.
Sleep tight little baby, sleep tight.
Mommy and Daddy love you with all their might! 

You did look very peaceful after you died. We got to see your full face, your beautiful face without all the tubes, tape, and wires. And you were at peace. 
Here you are baby boy. Just as beautiful as always.
They gave you a matching hat and blanket to put on you after you died. You are buried wearing the hat and we still have the blanket (Grandma made you a knew one to have with you). This picture is honestly one of my favorites of you. You look so peaceful and you are so beautiful. You can really tell how much you look like your Daddy here. I just wish I could kiss those cheeks one more time. Feel your soft hair, whisper in your ears. I wish I could hold you one more time, hold your body close to mine.

I don't know what else to say about that day right now Marcellus. It was hard, it was scary, it was horrible, it was painful, it hurts to think about, I still can't believe it happened, but I am thankful. I am thankful we were there for you. I am thankful we got to hold you as you left this earth.

I love you more than I can ever express. I miss you just as much. There will always be a whole in my heart. You took that piece with you. And I want you to have it. I want you to have that piece of my heart. I will never feel whole again on this earth. We will be together one day though. I live for that day. That day when mother and son will be reunited. For now, while I am here without you, I will do my best. Each day I will do my best to live for you, to share my love for you, to share how amazingly awesome you are with the world. Everyone needs to know of the little 3 lb 2oz baby boy named Marcellus Robert. Your 12 days on this earth my have been short, but they were the best days of my life. Although you are no longer physically here, we will make sure you live on. And you do live on baby boy, you have touched and continue to touch the lives of so many. I am so proud to be your mommy. Thank you for blessing our lives. xoxox.

No comments:

Post a Comment