And away we heal..post surgery update

We are four weeks post op and I would say she is almost 100% back to herself.  Her palate looks really good.  It looks mostly healed over with a few white threads working their way out.  We don't have to see our Plastic surgeon for 6 months and even then only for a check up to make sure no holes opened up.  He says everything looks awesome.  Upside to palate surgery is we don't have to massage her lip or try to shove plastic tubes up her nose or anything else like that.  Instructions a simple and easy to follow enough.  Pain medication first week or so while uncomfortable, arm restraints 3 weeks, pureed food 6 weeks, post op check ups with ENT and Plastic Sugeon and report to speech therapy 6 weeks after. 

Wearing Arm Restraints

Happy girl on the morning of her first birthday, 3 weeks post op and no arm restraints!

Paige finally got her first tooth on her 1st birthday.  It is on the upper left, the opposite side of her cleft, and the right front tooth feels like it is right under the surface.  The only odd thing about this is that most kids get the bottom two first.  But some kids, even ones without clefts get them on top like Paige, so we are not entirely sure if it is related to having a cleft.  Some teethe as early as 3 months and others at 14....We have been saying she is "teething" for most of her life.  It seems to be that excuse you think of for why a baby is being fussy and drooling a lot.  We kept looking for the ones on the bottom...  Feeling them and asking them, "when are you going to pop out?"  This top tooth was so far out we must have not realized it was there for awhile.  

Here is a great pic we took right when we discovered her tooth and it shows her healing palate.  It doesn't look painful anymore and you can see the lone stitch hanging down. Please excuse dinner on her face...I'm guessing butternut squash.  

So she got to eat some cake at her birthday party today...the first solid thing since before the surgery.  The doctor said it was soft enough, but she should continue to eat puree food for two more weeks.  

Can I say, "I kind of miss the No-nos?"  She was easier to watch because she couldn't put anything in her mouth that she would choke on.  They never kept her from crawling, pulling up and playing...just keeping things out of her mouth.  Well, when you have a one year old, things in mouth are a pretty common occurrence.  We just try to be careful and watch that she doesn't try pokey things like pens. 

I felt so happy I could put a beautiful before picture and after picture up at her one year party, to show people how far we have come.  

Here is Paige as a newborn, 6 months and 1 year.

I write this blog to keep family and friends updated on her progress, especially those not on Facebook.  I also use it as a safe place to talk about everything cleft, so people know what they are getting and I am not posting hard to see photos of surgeries and such other places.  I hope that in sharing our story, it can help other cleft families on their journey, answer questions, demonstrate how to get through all the tough times and show them how a child with a cleft can be loved and adored.  

One thing that really hit me after the palate repair....I don't have a child with a cleft. I had a child with a cleft.  Her lip and palate are whole now.  Hopefully we will have no other surgeries until her bone graft at 8 or 9 years old.  

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.

 

Paige's Palate Surgery in a Nutshell

The week started with our pre-op appt with our Plastic Surgeon and a recheck appointment with the ENT.  The ENT cleared Paige for surgery but said her right ear tube finally came out and he recommended a replacement.  So we geared up to have ear tube surgery that Friday and the palate repair surgery the following Monday.  Wham-bam... Get it done...was the plan.

Paige with Dr. Sundine the Man with the Magic Hands

Ear Tube surgery the Second time around.....

So heading into Paige's 2nd ear tube surgery and the 4th time we handed our baby over to be put under anesthesia.  We were pretty calm compared to the first time, which was Paige's first procedure at 2 months.  I think it helped knowing what to expect and to know this was nothing compared to what we would face the following Monday. Phil and I sat around eating our bagels, cracking jokes, playing with Paige and giving encouragement to the other nervous parents in the waiting room.  They schedule all the young babies early in the morning one right after the other, because the procedures are so quick.  We talked to two sets of parents and told them that it really was so fast and their little ones would be playing by this afternoon as if nothing had happened.  It felt nice to be the "old hands."  Instead of waking up pissed and hungry like the first time she groggily opened her eyes and said "ma-ma."  The nurse said that Paige was the sweetest little patient she had had in awhile.  And proudly I tell you, she told us you can tell when a baby is well loved and secure. Phil and I gave each other a high five.  It warmed my heart to lift her into my arms and cuddle her to my chest.  She felt so snuggly.  Paige really did bounce back quickly.  The procedure was successful and her ears seemed to be in working order again.  

Paige pre-op just before her ear tube replacement.

Paige on the way home from ear tube surgery

Palate Repair surgery is no piece of cake but something that you eat one bite at a time and get through...

Again we were blown away by the prayers and support we received from friends and family, through Facebook, my blog, the Babycenter Cleft Lip/Palate board, and our church.  Much of our family showed up to the hospital early that Monday morning to wait with us through the surgery.  Paige was in good spirits. Playing and being silly with her Uncle Grant, Grandma, Grammy & Poppy, Mama and Papa.  She was so sweet and funny.  We answered the nurses bazillion questions, spoke with the Anesthesiologist, then the surgeon dropped in and then it was time to pass her off again.  This time was not with the easy confidence we had the Friday before.  We were raw, tired and nervous.  Phil said a quick prayer over Paige, gave her a blessing and many kisses, and delivered her into the nurse's arms.

Playing and waiting...

You can see in this pic the way you can see the round inside of her lip on one side.  The surgeon planned to revise this small area.  I was nervous I  might have been nit-picking to agree to have this done because her lip has always looked so good. 

Daddy puts her hospital gown on

Mommy says good bye for now...

We go to the waiting room with a Paiger pager that beeps us back two hours later.

To distract me my sister prepped and brought a craft project she found pinned on one of my Pinterest Boards 

We folded felt circles and pinned them to the foam wreath

Almost done....and beep beep beep: Paige is ready

The first view of our baby post-surgery.  She had a quick hoarse croup-like inhale for a few hours that was kind of jarring. Nurse said its from the breathing tube, and crying when she came out of anesthesia.  Phil said it made her sound like a zombie. It was the hardest thing to hear and broke my heart a little.  I was happy to have her back in my arms.

She was only calm when being held....My sister and mother helped while I pumped . Here Paige tries glucose water as her first liquid.

In daddy's arms....the nurses loved her snuggle wraps which we brought ourselves.  They fit soooo much better than the hospital no-nos.

The following day she was doing so awesome.  She began playing and giving a few smiles.

This video shows Paige playing the day after surgery.  Wait for the end and she will melt your heart.

Paige captures her Grandpa's heart and snuggles in for a cozy nap.

Really wonder how she got herself in this position...

We call this her ET or Christmas toes....its her pulse O2 sensor that kept falling off and beeping loudly.

CHOC is an awesome hospital. The volunteers brought her a Christmas Build a Bear

Her mouth was very ouchie and her lip was swollen from the revision

The following evening she made the sign for food so we tried some peaches.  She did pretty well.  

Leaving and going home....

She ate the first day while on morphine but when they switched to Tylenol with codiene in the night and she refused to let anything near her mouth.  They kept us another night to be sure she would eat ok before sending us home.  After that decision was made I sent out a prayer request and within the hour she turned a corner. My husband started giving her tiny ice chips and she loved them and kept signing for more, then she signed for milk.  We think it helped numb her mouth enough. I was able to bend the nipple of her bottle and squirt the breastmilk into her mouth from the outside.  She drank 5.5 oz and then ate 1oz of pears.  We were able to leave the hospital the next morning and were home by noon.  She was doing so well that we decided to give her plain tylenol in hopes it would help her poop: the codeine was making her constipated.  Well she wasn't ready for this transition and she was very fussy and miserable.  We gave her the Tylenol with codeine before putting her down for the night.  She slept on my chest and would wake up often in the night.  Almost like clockwork she would become very unhappy about 30 mins before we could give her more medicine.  She's back to refusing food but is taking her bottle on her own now.  She can hold the end of it with her hand bent at the end of her arm restraints and pushes it against her bottom lip like before.  Everyday seems a little better.  

We loved our CHOC nurse Paula

On our way home from the hospital.

Paige eating ice from daddy....

Paige with her therapy dog, Django.  You can barely see him, but she's holding onto and stroking his ear with her left hand. She was crying and screaming when she felt Django's fur and it immediately calmed her down.

Warning...Warning....Warning

Oh and here is a view of Paige's new palate for those not faint at heart......  The yellowish areas are the raw areas that are now healing and filling in.

Before:

After:

And since I didn't want to end on that note, here is one more:

To be continued.....