It's been awhile....I guess I've been busy raising a beautiful baby

It was one year ago August 30th since we found out Paige would be a girl, healthy and bjavascript:void(0)orn with a right unilateral cleft lip.  This logo was one of the first images I associated with joining the Cleft Family.  September truly was my personal Craniofacial Acceptance month as I processed what this would mean for my baby.  I also needed the support of my faith, family, friends and the Cleft Lip/Cleft Palate board on Babycenter.com. This group has meant soooo much to me and really helped me through the different things we had to go through. Thank you all! I hope that our experience here can be helpful for others who have the first year to get through.  You can do it...it will all get better...and each part comes one thing at a time. You too will look back a year after finding out and wonder.

Here is this last year in review:

The minute we saw her she was perfect! So many worries melted away.  The fact that she had only an incomplete cleft was a surprise but so was her complete cleft palate.

Breastfeeding didn't work for us as hard as I tried and hoped.  I have been exclusively pumping for almost 8 months and hope to go to at least a year.  We tried the haberman, pigeon and finally just a regular nipple with a cross cut. After her lip surgery she didn't even need to have the nipple cut because she figured out her own way of bending the nipple against her bottom lip to get the nipple to squirt out into her mouth.

At two month she had tubes put in because she hadn't passed her hearing tests due to fluid behind her eardrums they could not drain due to her palate.

These were the first and last days of enjoying her wide smile.  I miss it...

Surgery
At three months she had her lip/nose repaired.  The pics below was our first time seeing her new face and trying to feed her after she woke up from anesthesia.

A cupid's bow...something so many take for granted.
First smile post surgery...

Learning to tape nose stents and no-no's was a learning process...
At 4 months with out nose stents for a day for Easter.


We got better at taping them using the tabs cut in half from clear rite aid bandaids.

Wore nose stents until six and half months when she decided to swallow them and poop them out
.  

Now she is 7 months, almost 8 and enjoying NO nose stents, solid foods, crawling, pulling up and saying "ma ma ma"! Basically just being a happy baby who has food come out her right nostril from time to time. Her palate surgery will be in late Oct. or early Nov.  Not looking forward to it but looking forward to getting through it and returning to just regular baby things and maybe a little speach therapy. 

Some tears from time to time....

She is very proud of pulling up!

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.