Sunday, April 10, 2011

Taping is One of the Biggest Learning Curves for Cleft Parents and Kiddos


Okay, so our doctor has prescribed that our baby should wear nose stents for 6 months post-surgery.  I have read that some people don't use them at all, while others try for at least 2 months. They are meant to keep the nostril open and even as scar tissue develops and tries to shrink, making the nose uneven again.  Its like a nose retainer. Many doctors believe the benefits are totally worth all the trouble of putting them up your child's nose while they are screaming their head off and then slapping irritating tape across their face only to have to rip it off later. The other option to aggressive adhesive tapes seem to be first aid paper tape, which is more gentle but doesn't stick worth beans.





Here is what we have learned during Week 1

The first night Paige was home, her nose stents began slipping out from beneath the steri-strip tape that the doctor had placed on her after surgery. We didn't expect this so soon. We panicked not knowing whether to really shove it back in....we didn't want to damage her freshly altered nose. We also didn't want to hurt her. After a 11:00pm emergency call to Dr. Sundine's office, we were intructed to shove it back up and retape it.

Well pushing it in slowly...only to have it slide right out...resulting in pushing harder over and over again was not making anything better. Paige was screaming bloody murder and it was making both Phil and I sick to try and get it to stay in. We managed to get it in and slap on some tape. The paper tape the doctor told us to use was not sticking.

"Oh no, what do we do?"

      

"More tape!"
(Krista: You actually taped over her ears and hair.
Phil: Whatever - it's on.)


"Let's try that again...Go Angels!"

      

When it fell out in the night completely, we finally got a peek at her nose without the stents


Ultimately the stents just fell out in her bed in the night and we could not get them back in. We made an appointment with the surgeon to have him tape them back in. And then in the night they came out again. So that is when we had to get creative. I researched online and consulted my Babycenter Cleft Board buddies and they gave some taping suggestions. I tried a few but the paper tape was just not cutting it. I decided to try something a little stronger. I tried satin tape, cloth tape, butterfly strips and ultimately band-aids.

Here are a few of our other attempts







A video of a very happy Paige with a very special taping job.  She is still cute no matter what....




We have invested in some surgi-strips which seem pretty strong but pricey. We are also looking into tapes that NICU's use for infant feeding and air tubes. We need the kind of tape that is strong but will be best for long term use on her delicate skin. Some nurse friends have made some suggestions and we will order and try out some more kinds this week. It seems like it is a learning process and I know that in a month or so we will be pros and hopefully Paige will be more used to it too.  

We are considering putting on masks while putting her tubes in so she won't assume every time we hover over her face she is going to get things forcefully shoved up her nose. Phil has suggested we dress up like clowns so as to instill her with a deep fear of clowns as early as possible. At any rate, so far she seems to forgive easily.  

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Some Play Therapy with our niece...she was interested in Paige's "bandage" on her "owie." I had the bag of tapes and band aids with me, so we cut some tape, punched a hole so her dolly could "breathe" and put it across her nose.  She even had the tape there 3 days later when we saw her again.  She really felt like she could relate to Paige and seemed to understand that the tape was going to help Paige get better.








3 comments:

  1. I loved your husband's comment - "Whatever - it's on." It totally made me burst out laughing! We felt the same way with taping on our little Mia's "DAM NAM" as we use to call it. Here's a link to our blog with a photo of OUR taping fiasco with the NAM that I'm sure you can relate to. :)

    http://moreno-madness.blogspot.com/2010/10/argh.html

    Unfortunately our surgeon DIDN'T use nasal stents, and Mia's little nose is super flat. Paige's repair and little nose look perfect. Can a mom have nose envy of another little one's repair? :) Keep up the hard work. It will soon all be over and will be SO worth it!

    Paige is SUCH a doll! Loved the happy video. :)

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  2. Omy gosh...tears steaming... we have a 10 year old and 5 year old with stents and I swear I almost used gorilla glue... steri strips..

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  3. And ours are stitched in...

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