Every day gets harder and harder to think about. It's been such a rough week of roller coaster emotions. I'm scared of the next two days. The next two days where the memories abruptly change from happy ones to ones of fear and devastation
A year ago today: Monday, November 7th, 2011
Marcellus was 10 days old. It was our last good day and night with Marcellus. And honestly, it was the best night we had with him overall. We left that night feeling high on life, complete. We had no idea the next day our sweet baby boy would get sick and that in just two days our family would be ripped apart by death. I previously wrote some of this when Marcellus should have been two months old (December 28th, 2011). I wrote the memories of him getting sick and dying first, before the good ones so I could get it out of the way. Even though that Monday was one of the best days, in hindsight it was probably the start of something. We just couldn't have known.
Lisa was your nurse for Monday morning 11/7/11. We didn’t get there as soon as we would have liked. We never did in the morning, it made Mommy really frustrated. I don’t know what happened that morning that got us a little behind. I’m not sure what time I got there, but I know it wasn’t early enough, maybe around 10am. I’m so sorry I didn’t get there earlier baby. I’m sorry for all the days I didn’t get there earlier. Everything was going so great. Your nurse from the day before, Angela, drew a nice picture for you on your board. It was of a sailboat and said “Blue skies ahead!” You were doing so well baby, so well. Lisa was only working part of a shift that day so when I got there she was going over everything with Emily who would be your nurse for the rest of the day. You had never had her before.
When I first got there, I took a picture on my phone to send to Grandma, Auntie Katie, and Daddy. Daddy wasn’t there right away because he went had a test to take. He was working so hard for us.
As you know your touch times in the NICU were 3, 6, 9, 12. I decided not to hold you until after your noon care. That way I could help with your care and then hold and love on you. Emily checked you over and everything was perfect. Mommy changed your diaper. It was even a little poopy! You usually saved those for Daddy. Emily noticed that there was a little bit of blood in your diaper. It was a very small amount. It was blood on top of normal stool. Your poop was also a little on the runny side, but it had been that way since you started pooping. Emily went to show the nurse practitioner, Michelle, and see what she thought. They were going to keep an eye on it, but didn’t seem alarmed. Since everything else looked so good, they thought that you maybe had a high up fissure, or just some irritation or break down from your runny poo. After we got your medical records, there is something in there that says you did have a fissure. They told me not to worry, so I tried not to. A little part of me did, but I wanted to just enjoy being with you. I regret not saying more Marcellus. We honestly don’t think it would have changed the outcome, but I’m bothered I didn’t say more. What about blood in my baby’s diaper is okay? Why didn’t I say more? We think this is when you started to get sick. If you were getting sick then, why weren’t there other signs? Your vitals were great, your tummy sounded good, you were being yourself, nothing else pointed to anything being wrong. Just that little bit of blood in your diaper. After reading things about how NEC progresses, you did not have any of the normal signs of it that day. This was your only symptom. But I still wonder, what if you had started getting treatment on Monday, would things have been different? Could you still be alive? Some of the questions that haunt me.
After your assessment we got settled in for some k-care. Emily hadn’t started your feeding yet since she could do that while I was holding you. I think it was around 12:30pm by the time we got settled in. You did start to fuss a little bit, but not bad at all. We thought it was because it was time for your feeding and you were getting hungry. You were off your IVs and up to your full feeds that day! I was so proud of you and I thought it was such a good sign you were showing that you were hungry. I couldn’t wait to breastfeed you. Now in hindsight I wonder if you started to fuss because your tummy hurt, because the NEC was really starting. I don’t know baby because other than that one time of fussing you were so content and acting your usual little self. You didn’t have any residual (or maybe it was trace amounts, but nothing to worry about at all) and we cozied up for our k-care. I tried to do a photo shoot of us on my phone to get a good picture to send to Daddy before his test. Mommy looked goofy in all of them so I just sent one of your sweet face snuggled up on Momma’s chest. I even took a video of you squirmy and squeaking. We had such a good afternoon together just Mommy and Marcellus.We even wrote Daddy a letter in his journal.
|Close up of you I took during our photo shoot to send to Daddy. Just look at that precious face and how filled out your cheeks were. You were growing so much!|
Here's the letter you wrote to Daddy:
Mommy told me you have a test today. I hope it goes well. I know you've been really busy trying to balance being here and school. Mommy and I are so thankful for everything you do. We both hope you know how proud we are of you. Mommy always tells me I have the best Daddy ever! Even though I'm only 10 days old I've already figured out that she's right. You are the best Daddy I could ask for. I'm doing my best to get big and strong. I really want to be able to go home as soon as possible. I want to meet my doggy brother! I also want to let you know I'm doing the best I can to grow. I promise to do my best and you promise to do yours. We will both have good and bad days, but all that matters is we do our best. I know you worry about me and some worry is ok. Please don't worry too much though. Daddy, I really love you and Mommy does too! I'm so glad you are my Daddy and that we are all a family. I can't wait to come home, but for now I'm happy when you visit me and talk to me, read to me, touch me, and especially k-care me.
Thanks for being a great daddy. I love you!
Daddy got there after his test and I didn’t want to tell him about the blood in your diaper. I knew he would really really worry. He was just getting the hang of the NICU monitors and trying not to worry all the time. He talked to the nurse and the nurse practitioner. I think that eased his fears some, but not all the way. I wish I could remember more details of that day, of all the days you were alive. I can’t remember if Daddy held you that afternoon or not. I know we left over shift change; we came home to eat and take care of the dog a little bit. We got back to the NICU that night, probably between 7:30 and 8:30pm. Rod always knew we would be back shortly after shift change so he’d get a weight right away. As soon as we walked in he’d tell us what you weighed. That day you were up to 3lbs 4oz, 2oz over your birth weight! You were doing so awesome. You still had some of the blood in your diaper, but it seemed like it was getting to be less. Daddy k-cared you first while Mommy pumped. I loved staring at the two of you together, my boys! I think Daddy read to you. He liked to do that. Then we switched and Mommy got to hold you again. We got out your paci to see how you did with it. We even have it on video. You didn’t always keep it in your mouth, but if it was anywhere near your mouth you made the sucking motions. I know you were going to be such a good eater! While I was holding you Daddy wrote in his journal.
Marcellus, you left me a real nice note. Thank you. It has been hard to coordinate life recently for me. I need to make up some tests that you have made it impossible to study for. Hopefully I can use you for motivation.
I got here at 16:45 after eating in the caf with your mom. You are back to your birth weight at 3lbs 2oz. Hopefully today you have gained more. You still have some loose stool, but the nurses and doctors are not worried about it. You have Rodney again tonight. It is a beautiful day out, 70 degrees for the next 3 or 4 days. Too bad we will be in here. Joe hung out with you yesterday. You have been doing great today and they took you off IV as well as fortifying your Mommy's milk. Mom has been doing an awesome job with providing you some good milk. New baby came in today. You or your g/f might be moved soon. We like it here in our little corner of the world. I will write down your weight here soon once Rod takes it.
You weighed 3lbs 4oz! You officially gained 2oz over the last day. That is a lot over the expected 1/2-1oz/day. Either way you are doing great.Your biliruben dropped too and you are at 8.6. The optomologist checked and you have immature retinas, which is normal. No ROP (retina of prematurity), which could cause vision problems in the future.
We came back after supper and did some k-care. I got some k-care and we snuggled nicely. Now Mom is k-caring you. We are in the middle of "The Velveteen Rabbit" that Beth gave you. I have never read it beofre, but I like it. I have to go back to school tomorrow after last week. It will be hard to be away, but I can do it. Mom will still take this week off to be with you. We have our baby shower on Sat, which should be fun. We will come back and tell you all the cool stuff you will poop in. Life seems complete with you here. I can't wait to watch you grow up to be a happy healthy boy.
No matter what you want to do in life, I will always try my best to support and be there for you. You have become the reason I am here. I will always look out for you and your mother. I just hope you like guns as much as I.
Eat, sleep, grow, poop! Love you!
That's a hard one to read over baby boy. All the hopes and dreams Daddy had with you. I had them all too. And when he said life felt complete with you here, it did. It so did. Will we ever feel that way again? I just don't know how it's possible with you not here. You will always be missing, so we will never be complete like that again. And we never got to watch you grow up. Our dreams completely shattered just a couple days after Daddy wrote this. We never got to that baby shower, instead we spent that Saturday in the funeral home in MN with you. Oh how drastically everything changed. So very drastically.
After I was done holding you, I wanted to pump before we left. Rod was great and instead of just putting you back in the isolette he asked Daddy if he wanted to hold you again. And of course he did! So Daddy got two rounds of holding you that night. It was just an amazing time for our family. Lots and lots of snuggles that night. When it was time to go (and we stayed pretty dang late again that night), we did our nighttime routine of singing and kisses. I remember the feeling we had that night as we left. We were on top of the world, we thought our lives were perfect, we were so so happy you were doing so well.
|This is literally our last picture of you alive.|
Thank you for that one perfect last night Marcellus. Thank you for giving us the memories and feelings from that night. It was purely amazing and I don't think I can even described to anyone how truly great it was. This will be the last post with good memories sweet boy. And what good memories they are. I love you right up to the moon and back! xoxox