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Monday, November 16, 2009


I received an email today from a friend through a list-serve I'm on for tube-fed kiddos. They're having trouble helping their 3.5 year old to cope with separation after so many hospitalizations and proceedures. In responding to her email, I realized just how much we've learned by walking through these past 4 years with Elizabeth. I know some folks who read this blog might be facing similar circumstances, so I thought I'd post my response here too (names have been changed):

Elizabeth continues to be hospitalized (3 times since July, and two of them were for 10 days each!) and we continue to process with her all the things you're facing with Eva. While her experiences don't exactly overlap with Eva's (we haven't had to leave her alone in the hospital since her initial 2 month stay in the NICU.) she is close to Eva's age (Elizabeth just turned 4) and has spent most of her life at the mercy of procedures, drs. and nurses and simply doing what has to be done to make her body better even if it traumatizes her little spirit sometimes. It breaks my heart.

While family oriented hospitals and child-centered care are critical...I've become QUITE demanding when it comes to how we handle blood draws, IV sticks, surgery prep and other necessities...we also spend a lot of time at home and on our way to and from the hospital reorienting her.

*We've found music has been a wonderful tool for us. (We particularly rely on our faith and do a lot of scripture memory and sing songs about how much God loves us, how he will always be with us, how we don't have to be afraid and how he will take care of us. There's a Hermie & Wormie CD about being brave that has been so wonderful and she sings the songs when she's stressed or afraid and I know she's doing her best to muster courage.)

*We use our portable DVD player with abandon when she's going to or at an appointment or has to stay in the hospital. We've found that being able to escape the real world and hide in her safe little space has been really better for her in the long run. She never stays there forever....just when she's coping. That said, we're REALLY careful about letting her watch anything even mildly scary...since she seems so much more vulnerable to feeling afraid....mostly just happy, singsongy things.

*she has a silk blanket that goes everywhere with her, (at home it's just for sleeping, but when we do hospital or dr. stuff she gets it all day long if she wants) I also find that if she's having separation issues, having her Kiki (that's what we call it) with her provides her with a lot of comfort.

*We also do a lot of drawing and talking about procedures...playing Dr. with her dolls, (this toy has been so cool) practicing coping techniques with her dolls..."okay, it's time for your blood draw Dora, which arm do you want us to use? okay, I'll count to two three....stick...owie, owie owie...all done! Wow Dora, you did so well! Did it hurt? do you need a band aid?" we do lots of that. As soon as she could handle it (3ish) I started being honest about where we were going and what we were doing...I felt better about not lying to her, and believe it's built a little trust...She's JUST gotten to a place where she can believe me if I tell her something won't hurt, or there are no sticks or we're NOT going to the hospital, only to Target! :) (However if she's already worked up, she'll freak out even for a weight or height we're still in a window where her understanding of what's going on wavers)

*Finally, we really try to reinforce our presence, our constancy, and her safety...we tell her things like "mommy always comes back", "I'm staying right here the whole time" etc. Elizabeth is VERY concrete, so the more "rules" we can give her, the more we structure and order and routinize hospital stuff, the easier it is for her. When she does get beside herself we also do some calming techniques like taking deep breaths, blowing out, counting to 10 in Spanish, and giving her things to repeat...and having her sing her ABCs..."let's sing our ABCs once and then it will all be over". We let her sleep with her comforting songs on CD when she first gets home if she needs them, we also try to give her lots of room to need to control her environment in the days after a hospitalization. We do jump back into structure pretty quickly, because that's how Elizabeth functions best, but we let her wear certain clothes, carry around her Kiki and have a little more say in how the day goes while we ease back into our old life.

You probably are already doing some or all of these things, but hopefully there's something helpful that you can tweak for your purposes.I know some of it is more for inside the hospital, but the more we can minimize her fear and sense of aloneness there, the easier it has been to come home and get back to normal. We also do a LOT of praying for Elizabeth's little spirit to be protected from fear. I don't know how you'd feel about that, but we believe it's helped protect her mind and heart through some VERY traumatizing experiences and allowed her to "bounce" back and feel safe and at peace much more quickly.


Suzie said...

what great advise...what a wise woman!

svea said...

wow you are so wise. i love you