The past couple days have been… well mentally exhausting. There have been many moments where I think “I cannot do this. There’s no end in sight”. The tears fall constantly. The sleep is broken and non existent. The weight of everything that is happening presses on my chest, to the point I cannot breathe. There are many days I want to curl up in the fetal position in a dark hole and just cry.
People have asked me how I do it. Honestly, I don’t know. You just do. It’s literally minute by minute. Hour by hour. One breath at a time. One foot in front of the other. The feelings I feel. The emotions I have. It feels like a roller coaster I can never get off. I want to scream at the top of my lungs. I want to punch something. Pull my hair out. I want GOD to tell me why. Why my baby? Why does my baby have to suffer? But….I don’t do any of that. I just pray. Pray for peace. Pray for strength. Pray for healing for Wally. And most importantly I pray for a heart.
Wally is doing well clinically. He’s very stable. He got his breathing tube out yesterday which he was very happy…. at first. You see, Wally hadn’t slept in almost 48 hours. He was delirious. And all he would do is cry and cry. And because of the breathing tube he had, had for so long he has no voice. So his cries sound like a dying kitten. Every time he would try and cough, he would cry. Every time someone other than AJ, my mom, and I touched him he would cry in fear of what was going to happen. And it is absolutely heart wrenching to sit there and watch my baby cry and there’s nothing I can do. I cant even pick him up and you can tell that’s what he wants. He’s also still very sore so every move is excruciating for him even though he is on pain medicines.
Getting him to sleep was a struggle. We’d finally get him to sleep and he’d startle and cry 😔😔. I eventually at 9:00pm last night couldn’t handle another minute mentally because I was literally losing it. So AJ stayed with him while I went back to Ronald. It made me feel like a terrible mom because I knew he needed me but I couldn’t stop crying and I knew he could feel my sadness which doesn’t help anything.
They thought about giving him medicines to help him sleep, but the problem was they were afraid it would make the delirium worse. Luckily Wally had an amazing nurse who was so good with him and vouched to try melatonin and Benadryl. It helped. He did sleep. Not perfect. But he did get some rest.
He looks much better today and hasn’t cried as much. Physical therapy came in and got him to sit up in a chair which he loved. We even were able to turn on baby bum on YouTube which he LOVES. The nurse and I agreed were going to try and get him on a schedule with two naps a day ect. We shall see how that goes 🤣.
His Berlin is functioning well. He was bleeding a lot more the past couple days but they seemed to have fixed that problem for now. The plan is to wake up his belly and start with 5ml of his formula. Which terrifies me because he’s always had stomach issues. So I’m praying it goes well. 🙏🏻🙏🏻
My parents and brother are visiting with him right now while AJ and I relax at Ronald. AJs parents and sister are coming up in a little bit. Hopefully AJ and I can get away and go do something other than be at the hospital or at Ronald. We shall see.
So now… we wait. And pray that he remains stable, he grows stronger, and that a new heart arrives soon. The days are long and exhausting. But we keep trudging on.
Thank you for all the support and love! We feel so loved and humbled by all of you! The prayers, the comments, the cards, it all helps very much! It really keeps me sane knowing how much support we have. Love you all!
—Wallys Momma 💕💕