She may look like her daddy...

...but she reads like her mommy.

Join us for Run For Little Hearts - May 21st

http://runforlittlehearts.com/

We had so much fun last year!  Our team, Love 4 Lydia, had over 60 people out to walk, run, or join in virtually.  We laughed, we ate, we painted faces!  Slugrrrrrr was there!

Join us Sunday, May 21st at Arrowhead Stadium for this year's Run for Little Hearts.  You can walk, run or just come for the fun and join Team Love 4 Lydia.  There are kid friendly activities, fun runs for the littles, food trucks and music.  It's a great way to kick off an early summer morning and support CHD awareness, research and family support.  

https://www.facebook.com/events/101464976995971/?rf=nEJ3aYrYJ

If you don't think joining the team is your thing, please consider donating to the CHD Babies Run for Little Hearts Charity.  I set a fundraising goal of $1,000 and we already met that, so I've set a higher fundraising goal of $1,500.  We are 85% of the way there!  

https://www.crowdrise.com/love4lydia/fundraiser/kinsleyriggs

Cleft Palate Appointment

Lydia has a sub mucous cleft and a cleft of the soft palate.  Easiest way to understand is that her uvula, the hang down thing in the back of your mouth, is split.  The split stops before her hard palate starts.  The more complicated way to look at this is that her uvula, soft palate and all the muscle above that we cannot see has to be reconstructed to come together and grow the correct way.  Here is a simple explanation for why the palate needs to be repaired and some good information.

http://www.kidsplastsurg.com/cleft-lip-palate/cleft-palate.cfm

https://uichildrens.org/health-library/cleft-palate-frequently-asked-questions

The procedure is fairly delicate and is done by a plastic surgeon.  They will repair it one of two ways, intravelar veloplasty or double opposing z plasty.  Essentially the first on is a straight repair and the second is a z shaped repair.  Lydia will stay in the hospital a couple of days and then head home for recovery.  She won't be able to put anything in her mouth, no tastes, no toys, no fingers.  Since she is 21 months old, it will require arm boards to keep her arms straight.  Oral fed kids would be on a liquid diet, Lydia's blends will resume as normal which should help with retaining her weight.  

Intravelar Veloplasty

Double Opposing Z Plasty

This is the repair that was originally scheduled for December and was postponed because of weight loss.  Lydia is hovering around the 22 pound mark and needs to keep gaining, but Dr. Goldstein is happy with her progress and gave us the green light for surgery in late spring.  We're hoping for late April but think it might be early May instead.  

This surgery messes with my head and I can't really express why.  It seems weird but I'm almost more "comfortable" with heart surgery.  I know what to expect.  I know what recovery looks like.  The fact that this surgery is inside of her darling little happy mouth, terrifies me.  Not that something will go wrong, but that recovery is going to suck for her.  And, there is nothing I can do about it.  No, I couldn't do anything about the heart surgery either.  I don't know.  I just hate this.  Just one more step in the right direction though.  

What's next?

Soft Palate Repair: Late Spring

Decannulation / no trach: Hopefully Summer

G Tube: No guesses, it's going to be awhile

Dinos, Date Night and the Irish!

Well, we didn't get to go to the Dino party for our little friend next door.  

Lydia had a temperature all day Friday and was on oxygen.  

She developed a cough and had lots of mucus.  Ugh.  She rebounded quickly after sleeping 13 hours Thursday night, taking a 5 hour nap on Friday, and sleeping another 11 hours Friday night.  She definitely wasn't 100% Saturday so we stayed home.  

Sunday we went to MaMa and PaPa Krupich's house.  

We had originally planned on going to the Shawnee Parade but it was just too cold and Lydia still wasn't 100%.  We had lunch together and played for awhile.  

Oh, and of course she wore all her green, as originally planned.

 

Nothing but fun for Lydia!

We started out with trumpet lessons and working on bedtime.  

 

Selfie Saturday!  Lydia takes selfies with her pretend cell phone.

We had some driveway time with our neighbors while the sun was shining.

The age old question.  Why buy toys when there are boxes?

And to top it all off, we went to Willow's 3rd birthday party in Oskaloosa!

 

  

One Year Ago

One year ago today, we were sitting in a pre-op appointment at Children's Mercy Hospital.  

The preparation for surgery number 4, heart surgery number 2, was very different.  We had been home with Lydia for 6 months, all the pre-op routines were on us to do, and we just showed up the morning of.  

This was all very different from the PICU nurses handling everything and Dan and I just squeezing her and kissing her before surgery.  Remember how big her cheeks were?  My goodness, I thought they might explode!  And that hair.

Lydia went through surgery with no complications and was having a great initial recovery.  There was talk of going to the 4th floor in a matter of days and going home.  Then pneumonia hit.  Nasty stuff.  Even nastier when recovering from open heart surgery and breathing through a trach.  Our baby girl took some time and bounced back like we knew she could.  We spent 10 days in the hospital.

 While Lydia was in the hospital, I was preparing for round 2 of 3 job interviews.  I remember pacing her hospital room thinking up things for my presentation.  I finally went to PT's on the Blvd. one rainy afternoon to work on my presentation and enjoy a cookie and a latte.  I got it done! ... only to be greeted with a parking ticket when I left.  Oh well, I presented interview round 2 that Friday, just days after Lydia's surgery and just days before we brought her home.  I'm not sure how I did it, but that doesn't matter now.  I did it!  

 We headed home with our baby girl on March 12, just in time to celebrate her 9 month mark and St. Patrick's Day.  This year we are in a similar place but with a different surgery.  We visit Lydia's plastic surgeon on March 13th to determine when she will have her sub mucous soft cleft palate repair.  It was scheduled for December, with the ear tubes, and was postponed due to lack of weight gain.  She's gaining now and is 22 pounds!  I'll never be ready for this surgery, so let's just get it over with and move on.  Here we go...