We made it!

I wanted Paige's 1st Birthday party to be special to celebrate making it through a year full of so many wonderful and difficult things in Paige's short little life. We made it through finding out about her cleft, a long labor and birth, countless doctors appts, feeding issues; Ear Tube Surgery, Lip Surgery, more doctor's appts.; normal baby issues, new job, new home, new church, Palate Surgery and it was ALL worth it to have such a happy, smart, funny and beautiful child with such a unique personality, joy and love for this World. Thank you everyone who has supported us and prayed and truly lifted us up through it all. We are blessed. We hope year two is slightly less eventful.

We took these pictures when she was 11 months, a week before her palate surgery and 3 weeks before her first birthday. We weren't sure how good-natured she would be after the surgery and she would be wearing her No-no arm restraints. My good friend, Sara from  Banana Bugz Photography  took the one year photos.  Then I had Amanda from Paper Cut Couture Etsy Shop to design the invite using Sara's picture. 

The Party...

With lots of help from family and friends, we created a fun cowgirl party just for Paige! I cut and sewed the fabric bunting.  My mother helped me create the "Happy Birthday" banner and cupcake toppers and signs on her Cricut. The font I liked the most was from the Storybook Cricut cartridge and the western shapes were from a variety of cartridges. The polka dot ballons and extra large balloon, paper straws and high chair ribbon banner were from Polka Dot Market.  I've ordered tissue poms from Pomtastic Etsy Shop a couple of times and she has alway done a great job.    The wood tags were made with a wood stain pen and a wood burner which is cheap and easy to do. You can look up other projects, pictures and pin ideas I used for the party on My Pinterest Board.

 

Cruising with Paige's Peeps at the CHOC Walk

Paige's palate surgery has been scheduled at CHOC November 18th...but in the mean time... 

So far my mother, a friend and I will be doing the CHOC Walk through the Park this Sunday.  It is a 5K walk that raises money for the Children's Hospital where Paige has her surgeries and works with their Craniofacial Team.  Our team is called Paige's Peeps to represent all those who have supported us through this time.  We are walking for Paige's biggest fans who have prayed, offered emotional and even financial support for Paige's surgeries.  I am very excited to participate in such a special event to bring awareness to the awesome work CHOC provides to so many little ones.  It's just a bonus that we get to troll through Disneyland with characters encouraging us along the route. 


In our time visiting and staying in the hospital I have seen other children who are sick or have severe medical issues and have been grateful often that what Paige needs medical care for is something that can be fixed and she will be able to live a very normal life.  I once sat in the hospital lobby when they called a code and requested med staff to the helicopter pad and all I could do is sit and pray for whatever child was coming their way.  This is the hospital in our region where children are rushed to for anything major.  We were told that if Paige was born with any other serious issues she would have been air lifted here. 
 
Here are the links for anyone who wants to join our team or give a donation:


Team Paige's Peeps support page


My personal CHOC Walk page

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.