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.  

Click Links Below

Ideas for nose stents from other Baby Center Mamas

My desperate cry for help on Baby Center and what others had to say

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.

Our big surgery experience through pictures.....

Saying goodbye for now...

In pre-op loving on our little girl, she was so good the morning of her surgery.  We anticipated that it would be difficult considering she had not eaten anything since 3:30am and her surgery didn't start until 10:20am.  But she was perfect.  She woke up happy at the hospital and didn't seem too hungry.  She cooed and smiled, and when she got a little aggitated we held her in her favorite position, "leopard on a log" style, and paced or swayed and she accepted this as calming.  She even fell back asleep for a little while.  Really the only time she cried was at the point when we handed her over to the nurse who took her away to the operating room.  It truly was the hardest moment.  

      

Last Picture of her original smile.......

Waiting...

Family waited in the waiting room and talked, read Kindles, played on iPads, texted with friends and ate goodies to make the 2.5 hours pass.  We even met a great couple who's little one went in to have the same surgery just before Paige.  It is nice to be able to talk to people who understand what we are going through....My sister and I colored mandalas to stay relaxed and get by.

Seeing....

First moment seeing our little girl post op......an incredible feeling of relief, while wanting to see her new mouth and nose and seeing that it looked good but so different. It really was hard to take in at first.  The cords and tubes were a little off putting as well.  We wanted to scoop her up and see her eyes open, but it was difficult because she thrashed and cried when she finally did.  The nurse had to give her Demerol to calm her down and she fell back asleep peacefully.  

Rosebud Lips with a Cupid's Bow......

something so many take for granted.

Dr.  Sundine did an incredible job

Family...

The nurses allowed our whole family to come back and see her.  I'm interested in how each person felt when they first saw her and she looked so different....

Feeding...

This was the moment we tried to feed her but she kept kicking her legs and arching her back and thrashing...never even opened her eyes and didn't really drink.  We were so worried about damaging the doctor's work or hurting her.  The nurse told us to use our hand on her forehead to keep her from rubbing her face on anything.

   

First time her eyes opened a little after Demerol. They were little slits with dazed wide pupils inside.  At least we knew she wasn't hurting.  It was also the first moment when we thought she looked like her cousin, Lily.

Wearing her "No-No's" to keep her from touching her lip and nose stents she will have to wear for 6 months to help keep the shape of her nostrils even and open.

      

First moment eating calmly..... 

Moving...

Her surgery was done at the St.  Joseph's Outpatient Surgery center and then she was transported .2 miles in an ambulance to recover in a room at the regular CHOC.  She wasn't a fan but mama got a kick out of it.......

Getting through the night...

They brought in a cot that fit both of us. Paige slept a lot throughout the day and had eaten with increasing ease each time she tried. She was still on IV fluids so she wouldn't get dehydrated. It was tough to sleep and when she was awake she was very fussy and uncomfortable.  It was difficult to hold her with all the cords but she wanted to be held and cuddled.  We got better and better at holding and feeding her without worrying about hurting her.  

Actual updates in the middle of the night:

 "She is sleeping a lot. Has opened her eyes a little but is grumpy when she does. She mostly eats with eyes closed and half asleep. Got Tylenol with codeine around 6:30. I miss her alert happy times. Gunna take a few days."

"Slept a little...Phil took one extra upsetting shift around 2:30am. She settled again after meds. She is resting sweetly, giving first smiles but only in her sleep."

"We share a room with a rambunctious 3.5 year old with no boundary inhibitions who has been here since Saturday. He wanted to play doctor with Paige. Had a mask and gloves on. So his family is currently taking him for a wagon ride..."  

"Noisy roommate slept 10pm-7:30 so that was ok. He is a happy screamer and squealer. And really is interested in "the baby" and me."

Morning after.....

First smile...

in her sleep but still so sweet.

Hospital view of Angel's stadium.

Going home...

We stopped off at Paige's Great Grandma's so she could be reassured that our little girl was doing well.

Thank you all for the hundreds of thoughts and prayers from all over the U.S. and many parts of the World.  We are blown away by the loving support of so many.  I truly think we have made it as far as we have, because of those who uplift us and are going through this journey together.