A year ago: November 8th, 2011

I struggled with I should write about Marcellus getting sick and about the day he died. Do people want to read that? But it's part of his story and it doesn't matter if people want to read it or not. If you come here, you are doing so because you want to know more about him, more about this journey. If you don't want to read it, you won't. The day he got sick and the day he died are days that he was here, that we had with him. Days we still were able to parent him on this earth. In fact, in those days we had to do things and make some of the decisions that most parents don't ever have to. And so I will write, I will share.

I've been having flashbacks of the 8th and 9th all day today. I'm sure they will continue tomorrow. Flashbacks of what we were doing at this time. Flashbacks to the denial, the disbelief. These two days are very hard days to relive, but I feel like I'm doing just that. Reliving those moments.

A year ago today: Tuesday, November, 8th, 2011
First I will summarize the short of it and then I will share more detail in a letter to Marcellus. The day started out like any other. Antsy and eager to get to the NICU to see my sweet baby. Things changed not too long after that when Marcellus was diagnosed with NEC. Everyone was so hopeful because they thought they caught it early. My biggest fear was him feeling hunger since he had to be taken off of his milk and put back on IV fluids only. Nothing seemed to change for awhile, but then at night it got worse. He got very lethargic and also had to be put back on the ventilator due to some really bad apnea episodes. We went home that night, in denial that our baby was as sick as he was. We should have stayed. We should have sat there with him all night and not left him alone when he was so sick and hurting. I have so much guilt over that. But we didn't know. We didn't know he was going to die. We just needed to get some sleep.
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Dear Marcellus,

The morning started with me having to throw out some milk I had accidentally left out the night before when pumping. I was so bummed about that. But my next pumping I got 210 mL, the most I had ever gotten at once. I was pretty proud of that! 

Mommy got to your bed a little before 11am on Tuesday morning. Daddy was going to take another test. As soon as I got there you were fussy. I could tell instantly that you were being fussy. You had a new nurse that day, Shelley. She told me about how you were being feisty, but I knew it wasn't your normal feisty self. I knew something was off. I told her this wasn't feistiness that you were being fussy and you never fussed like that. Shelley told us that they were still watching the blood in your diaper. That Rod said it had pretty much gone away over night, but that morning it was back for her at 9am. They decided to do an x-ray to see what was going on with your insides. They didn’t have the results yet.  She also had stopped the human milk fortifier in your milk. Daddy came in not too long after Mommy because he ended up not having his test that day. We decided that Daddy would hold you first so I could pump (I was always pumping). While Daddy held you, you were still being fussy. You didn’t really all out cry or anything, but it’s like you were working up to. I took some pictures of you and Daddy. I just realized in my last post I said the picture from Monday night was the last one of you alive. That's a lie. We have some from Tuesday, but we can't look at them. You look in pain in the picture. We can see it in your face. Your curled up on Daddy's chest and he's so unaware of what's about to happen. He's just happy to hold you as usual. But you are pained my sweet baby boy. I can't bear to look at those pictures knowing how unaware we were of what was going on inside you.

We were getting ready to switch for k-caring, but it was around your assessment time. Shelley changed your diaper while you were on Daddy. Bad news, it was bloody stool. It looked a lot different than the diapers from the day before. They were very small amounts of blood on top of normal looking stool. This was blood mixed in the stool. We were now worried. Mommy tried to hold you anyway while Shelley went to show Michelle and see if the results were in from the x-ray. Something in the transfer from Daddy to Mommy must have hurt your insides, either that or you were just trying to tell me something. Baby you cried while I held you, you really cried. It made Mommy cry too. I couldn’t comfort you. I tried talking to you and tell you “Mommy’s here” and tried rocking you back and forth a little, but nothing helped. You just kept crying and so did I. I hate that that’s the memory I have of our last k-care. I almost wish we wouldn’t have even k-cared that day. But you needed to know we were there. And maybe that’s why you felt like you could cry like that, because you were with us and knew we were there for you. We put you back in your isolette and got the news that they suspected necrotizing enterocolitis (NEC).  Michelle, the nurse practitioner, was hopefully that we caught it early. I even remember her smiling at us that it would be okay. The only signs you had was the blood stool, some residual (7mL out of 28mL), and a slight change on your x-ray. They said it was good you were fussing and acknowledging something was wrong. They said when babies are really sick they are lethargic. You were definitely letting us know there was a problem. They started measuring your belly to see if it was getting distended. At the time it wasn’t. They took you off your food and put you back on IVs (which was easy since you still had your PICC line in). I was so worried about you feeling hungry. They said if it is NEC you would need bowel rest for 7-10 days. They put a different tube down your throat to get some of the air and stuff out of your belly, to relieve the pressure. They also started you on antibiotics. Michelle told us that they should start working in 24-48 hours. She also told us about how NEC progresses and that you may need surgery if your bowel perforated. 

We were worried, but not frantic. We knew this would be a setback from getting you to leave the NICU when we thought you would, we just never imagined it would be a setback that prevented you from leaving the NICU alive. You had another x-ray done while Daddy and I were there. You were still being your feisty squirmy self. When Shelley picked you up for the x-ray you moved all around. We finally went to go get something to eat later in the afternoon. On our way out we ran into Michelle and talked to her about the results of the most recent x-ray. I think she said there wasn’t too much change, but they were still watching it. She talked about dilation of the loops of your intestines. It was all very confusing for Mommy. You would continue to get x-rays throughout the day and night. We went and ate and talked about how we were worried about you. Daddy was struggling with if he should go to his CNA class that night. He only had one more he could miss. We talked it over and decided he should go. We came to that decision because at the time we thought at most you would need surgery. We decided Daddy should go that night in case you would need surgery the next day. We wanted him to be able to be there for that.  Of course in hindsight Daddy should have stayed with us. But we made the best decision we could at the time and he was doing it for us. That’s what matters is that we did the best we could at the time. I hope you know that love. 

Originally I was going to go home with Daddy for supper and then get a ride back with Tawny. After you got sick I decided I needed to stay with you. Also, Auntie Beth had set up a meal train for us and a friend was going to be dropping dinner by our house that night. I don't think I had her number at the time, so I text Auntie Beth telling her to pass on the message that I wasn't going home. All I could say to Beth is that you were having a bad day. I couldn't even say you were sick. I didn't want to get people worried. I was also in super strong denial that you were as sick as you were. Really what I should have done is told everyone I could, so that they could pray for you. Maybe if a lot people would have prayed for you God would have listened and saved you. I never gave them the chance to because I never told anyone you were sick.

At time Tawny was a chaplain at Wake Med and she came up to the NICU right when she got off work. She stayed with us until Daddy got back. Daddy had asked me to keep updating him at least every hour. You were getting tired baby, very tired. That really worried Mommy. I wish I would have asked Daddy to come back sooner. I don’t know if it was denial or I wasn’t really aware of how sick you were getting, but I thought you were doing okay. I thought you just needed to rest and that’s why you were tired. I feel so guilty about not asking Daddy to come back. I feel really really guilty. Your stats were staying pretty good though, you were just tired. You had more x-rays that night. During one of your x-rays you didn’t fight and squirm like you normally would have. That really bothered Mommy. I knew something wasn’t right. You also had stopped gripping my finger when I held your hand. Oh baby I should have known something was going terribly wrong. Why didn’t I know? Why didn’t I call Daddy? I got really tired and had to rest a little in the reclining chair. Tawny stayed watching over you and comforting you. I am really thankful she was there, but it should have been Daddy. Can you tell I feel really bad about this? That is something I really regret. He left it up to me to let him know if he should come back and I failed him and you by not asking him to. I thought you were okay, I really thought you were going to get through this and be okay! That we should save his day for a time when we needed it more, like if you had surgery. You had your head ultra sound scheduled for that night. You had a couple apneas while she was doing it, but I thought it was just because you were irritated by having that goop on your head. Oh how I realize I was in denial. 

Daddy did let me know when he was on his way. Between that time and when you got there, you quickly went downhill. You had some really bad apnea. You needed to really be stimulated to get out of it, to start breathing again. I cried a lot. I was so scared Marcellus. Knowing that you weren’t breathing was scary. Poor Daddy walked in on that, on you not breathing and Rod trying to stimulate you to breath. They decided you need to go back on the respirator. I now know that was a tell tale sign that things were not good at all. But at the time I was naive and like I said in denial. I thought to myself “at least now I know my baby is breathing, he can focus on resting and getting better without having to worry about breathing.” That’s what I thought baby, I still thought you were going to make it through but I was oh so scared. While they put the respirator in I called Grandma. She didn’t answer right away; I think it was about 11pm, so it would have been 10pm for her. She called back a few minutes later and all I could say is “Mom, he’s sick.” Grandma tried to be comforting, but we were all scared. We all just wanted you to be okay. Daddy and I went back in to the NICU when we could and stayed with you for a little while longer. We then decided to go home.

I wish we would have stayed the whole night with you. Rod even said to us, “You can stay if you like.” I think he was trying to hint to us that we should, that you were really sick. Again denial crept in. We thought we should go home and rest in case you needed to have surgery the next day. We wanted to be able to have energy to be there if you needed surgery. We still didn’t know that we would need that energy to say goodbye. I don’t remember what time we went home, but we knew you were having another x-ray at 2am. I asked Michelle to call us after every x-ray and keep us very updated.

Before we left Daddy wrote in his journal. It's hard to read and type up. The desperation, worry, and fear are so apparent. 

I didn't want to write about it yesterday because I had hoped it would be nothing. It turned out to be a big something and your mother and I are absolutely worried about you. You had blood in your stool yseterday. Not a lot but it was noted and they took you off the human milk fortifier. Today we arrived at 11am and you were being fussy. Shelly, your nurse, checked your diaper during k-care with me and there was blood mixed in this time. Shelly got concerned and pushed for an x-ray of your intestines. They are inflamed. You got put on IV fluids and antibiotics and taken off feedings. I went to lcicals and Mom stayed behind. On my way up you had some bad cases of apnea. You took a couple of chrashes when I arrived and they put you on a ventilator again. We won't know till tomorrow how you are doing. You got really tired. So far signs are god. We really need you to pull out of this. I never wish anything bad upon you. You never deserved this. Please come out of it buddy. When I saw your O2 crash and your heart rate drop I feared the absolute worse. Never scare me like that again. We love you so very much it hurts to see you in any pain. We need you. More than you need us. The Lennon men are strong willed and stubborn. Your mother gave you some strong genes. You will do going. I love you little man.

Baby boy, this all hurts so much. So many things I feel guilty about that day. I'm sorry I couldn't comfort you when I held you. That broke my heart. I'm the mom, I'm supposed to be able to fix it and I couldn't. All I could do was cry with you as I held you. I'm so sorry you were in pain. I hate to think of that. My sweet little boy hurting. I can't imagine how you felt. My poor baby. I'm sorry that Daddy didn't stay. I feel like that's my fault. And I'm sorry we left you that night. You had to be scared and we just left you. I hope you could feel our love and concern for you. We were so scared, so worried, but yet still hopeful. When we left that night it honestly never crossed my mind that you could die. I mean you were in the hospital after all. If you were going to get sick it was a good place to be. A high level NICU where they have amazing doctors and nurses. You were in good hands. Yes, I was worried about complications and what you would have to go through. But I never thought what you would have to go through was death. Oh Marcellus I miss you, I ache for you, I long for you. I just don't know why they couldn't fix it. Nobody could fix it. Today has been hard. Really hard. Tomorrow will be really hard too. It hurts just as bad as it did right after you died. It honestly does. I miss and love you so very much my sweet boy. So so so very much. xoxox