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November 17, 2018
National Premature Awareness Day
He slept a lot of the day but when he isn’t sleeping he is screaming. His old turning purple screaming that’s a thousand times worse than nails on a chalkboard for me. Then this evening when I was home alone with him he screamed for an hour straight. Nothing I did would calm him and he could not be consoled. He just screamed so much he was drenched in sweat and purple. It’s so frustrating. It’s frustrating because I don’t want this life. I didn’t ask for it. I asked for a family and that’s not what I got. I got a baby. A very difficult baby. I don’t have the loving spouse who takes him in the morning so I can sleep in every once and a while or can walk away with him when he can tell I’m overwhelmed. I have 2 incredibly amazing moms in my life helping me take care of him and don’t get me wrong they do those things for me but it’s not the same. It’s not the person I chose to raise a kid with. I feel guilty when they help but too overwhelmed when I don’t. I just feel like I will never get to a place where I can do this alone. I’m trying so hard to learn to be independent.
I always considered myself independent. My whole life I would classify myself as that. But being with Scott made me codependent in the worst way. We did absolutely everything together. He loved to run errands and we enjoyed doing that together. He made everything fun. So now, nothing is fun. I hate being on my own and despise all the tasks that come along with that.
I get that having a baby changes your lifestyle. I get that you don’t get to go out or do whatever you want at the drop of a hat but when we decided to have a baby we had each other. Staying in on a Saturday night with our son sounded fun, we were ready for that. Doing nothing for a whole weekend was ok when we had each other. But now, I’m homebound and alone. Not yet but soon I will be alone just him and I, forever.
It’s worse because I can’t bring him anywhere. I am so trapped in my own house. I was feeling antsy today and thought I could go do some returns or run errands but I can’t. I can not bring him anywhere without running the risk of him getting sick. It’s not worth it and since he was born at 33 weeks and spent 99 days in the NICU, he has zero immune system. Any tiny bug could be fatal.
I’m a prisoner in my life and in my home. I’m so unhappy it’s painful.
I go to work which is a great escape but I come straight home. I have groceries delivered so I don’t have to go out and I don’t go hardly anywhere.
Enough of me complaining. It’s all I do now.
. . .
On Friday my mom took him up to Children’s Hospital for his cardiology appointment. He didn’t need another echo and our doctor said he looked great and “so cute.” We did get his surgery scheduled. He has to confirm with our surgeon that the dates are 100% final but we’re pretty sure it’s set. December 18th. We will check in December 17th and have 12 hours of tests and labs, etc to get ready for the next day. Tuesday morning they will take him back early and it will be an 8 hour surgery.
Sounds like he could be in there up to 3 weeks but most likely at least a week which means we will be there for Christmas. Fine with me. I would like to skip the holidays all together for a very long time.
Friday evening our nurse came and administered his RSV shot. It’s a 5 part monthly shot he will get until March. They deliver it in the morning and it stays in the fridge until they give it. It’s extremely painful and I’m sure why he is miserable today. She went over cost with us and this shot alone would cost $3,000 but insurance covers it. He is covered because of his low birth weight and his heart condition. He is at high risk of getting RSV which is deadly in any baby.
If he gets sick before surgery at all, the surgery is cancelled which is not good. We will be extra cautious until then.
. . .
Off to bed. Pray for me.
Trish Chard — 11/18/18
Sending ALL OUR LOVE HUGS AND PRAYERS SWEETHEART. Both you and Maxley have got this!! You have aSPECIAL ANGEL watching down and rooting for you. LOVE YOU BOTH XOXOX 😘
Bette Strever — 11/18/18
You have my prayers. May our merciful God shower you with every strength you need to get through each day. May Maxley's surgery be successful. And may you be blessed with a path back to happiness.....somehow. Hang in there - I bet you're tired of hearing that, but it's all you can do right now so that's what I wish for you. Maxley is lucky to have you for a Mom, don't lose sight of that.
Pam Garwood — 11/18/18
After Roman's 2nd surgery he had rsv and other complications that kept him in the hospital more than he was home. As you know Children's is great! They will take AWESOME care of him and you!
I know you don't feel like it, but you are amazing and strong! 1 day, 1 hour, 1 minute at a time.
I know you don't feel like it, but you are amazing and strong! 1 day, 1 hour, 1 minute at a time.
Colleen Illikainen — 11/18/18
Sending Lots of Love and Prayers. It will get better. Imagine Maxley getting ready for his first day of school or having birthday parties and having best friends to invite. He'll be so much fun to watch grow and to celebrate his milestones. He's adorable and you are amazing.
Linda Latta — 11/18/18
Kelsey I am praying for you and Maxely. I can't image how hard all of this is for you. You are doing a great job he is such a strong baby. I will be thinking of you during the coming months big hugs to you😘😘