All children, no matter if they are special needs or not, struggle with day to day life after a long hospital stay. Often times in babies and toddlers, this becomes a form of anxiety and stress. The longer the hospital stay, the more difficult the adjustment is on the child when they return home.
No one likes being in the hospital. You are hooked up to wires and monitors, nurses come in every few hours day or night, testing, getting blood work or IV’s, being seen by doctors, doctors, and more doctors. You are in a strange bed, with strange noises and bad food. It would disrupt anyone!
But when this is happening to a child who has a very limited understanding of whats going on and is unable to vocalize their fears, it could easily create major problems.
For the past week, we’ve been dealing with Peanut adjusting back to normal life. Her emotions have been out of wack, crying and throwing a tantrum one minute, to laughing and giggling the next. She has definitely not been our easy going girl lately. All she has wanted to do is sit on the couch and watch movies. Getting her to do any walking or therapy has been a huge fight. Often resulting in full meltdown (by her, not me). Her anxiety has definitely been on high alert, and the teeth grinding has come back in full swing. Often times to calm her down, I find myself simply holding her against me while she watches her favorite cartoon. Because of this, she has been much more affectionate with me. I’ve been receiving lots of hugs and kisses from her. I almost feel like it’s her way of saying thank you and that she loves me.
We’ve been using her weighted blanket pretty consistently. When she is tense and struggling with her senses, this greatly helps calm her down and help her refocus. She loves playing with the texture and putting her tiny fingers in the holes of the blanket. A lot of people have asked why it helps, it kind of goes back to when a newborn is swaddled. The tightness actually helps calm their nerves and remove some of the stress they are feeling.
Her anxiety about food has gotten worse also, sometimes refusing everything we offer her. All through her hospital stay, she refused to eat almost anything. With her sore throat and just feeling miserable, eating was the last thing she wanted to do. Some days all she would be willing to eat was Eggo Cinnamon Toast waffles. We’ve noticed though that if we break her food up into tiny pieces and only give her one bite at a time, she’s more willing to eat. A regression to what she used to do.
Though she has been taking naps just fine (as good as she used to at least, still a struggle), her sleep pattern is completely off and she is often scared to be alone in her room at night. Each night when we lay her down she cries, talks, and calls out to us. We try really hard to leave her and hope she’ll talk herself to sleep. But when she gets herself worked up, we have no choice. We bring her in bed with us, and almost instantly she lays down and relaxes. If she would sleep with us, we would probably let her, but there isn’t anyway. She’s a very light sleeper and moves around constantly!! She’s having a very difficult time though, not having us in the room with her. She just wants to see us and knows we are there. Worst case, we’ve talked about putting her in the playpen by my side of the bed. But we are striving to get back to normal and understand that if we allow her to be with us, it will just make it more difficult for her.
Lastly, we’ve recently seen that she notices when we are not in the room with her. She’s cried when I’ve left her and gotten very excited when she sees us again. Though this seems like a normal reaction to a 3-year-old, it’s not something she has ever done in the past. Yes, I am excited to see this new milestone, but I do understand that this might just be due to her trauma and it might not continue.
So what do we do? Getting her back into a normal routine is the best option to help her through this. This past week, she’s still been recovering, so we haven’t pushed her as much as we should have. But now that she is fully healthy again, her normal routine needs to get back into swing. Tomorrow she has PT (first time in 2 weeks) and Wednesday she will return to her schooling (first time in 3 weeks!). We continue to try to get her to eat healthy balanced foods. But understand, sometimes some food is better than none. Thankfully, she has been drinking water throughout the day.
We will be incorporating her daily therapy work once again, limiting tv time and pushing walking at all times. I think that is where I’ve seen the most regression. We went from taking 10 steps on her on, to her being actually scared to even stand unassisted. Some of this is because when she was really sick, her muscles were sore and tired, making standing actually painful and uncomfortable for her. We have to start over and help her see that this is a skill she already has.
This is a slow process. We have to be consistent and not allow her to manipulate us (yes, she can manipulate adults pretty easily. Have you seen how cute she is?!) Its taken a lot of patience and teamwork to get through the day. Each day has been a new struggle, but we’ve also seen glimpses of her back to normal. I can’t imagine how difficult it will be when she comes home from her heart and treachia procedures. My heart goes out to all the families who are hospitalized for months at a time. I have no idea how you do it!!
Post Traumatic Stress Disorder in Babies and Toddlers: What Are the Symptoms?
Sick Children in Hospital: How to Help, What to Do