I ain't afraid of no ghost!

 Happy Halloween! 

Warning! Naked Baby.

*** someone flagged Lydia's bathtime video as inappropriate and it's been removed from YouTube. Hope that doesn't come back to bite her in a job interview someday.

Yay!  Someone is finally learning to like bathtime!  

When she's 13, she'll hurt me for posting this.

Think like a proton

Alright, today has to be the day.  The day I quit having these poor me moments.  I'm going to get it all out and then work on getting better.  Call me out on it if I'm being a whiny little you know what.

No, I have not been to any postseason games, though I have a ticket to every one of them.  I just don't care this year like I did last year.  My place it as home with Lydia, but I know I need to get out and have a life.  So, I'll try to go to at least one World Series game.      

No, I have no more night nurses, well one every other Monday and Tuesday.  I live too far away from them or they found a better paying job at a hospital.  I can't blame them.  I have two companies searching for more.  It will get better.

I am grateful for our wonderful daytime nurses.  I am grateful our night time nurses will be able to cover every once in awhile, just not consistently.  I am grateful we found Emma and she's going to be with Lydia tonight so Dan and I can celebrate our anniversary.

I am so thankful Lydia is at home and thriving.  She is alive and healthy.  What do I have to complain about?  Nothing.  I only have things to be thankful for, like this sleeping beauty that I'm going to go snuggle...after I clean up the formula that I fed to the floor because I didn't realize the tube wasn't hooked up at 6am.  Face Palm.

Before I get that cup of coffee...

Look at this kid!  She's so much fun! She's giggling now...we can't hear her, but that's no ordinary smile, that's a laugh!

Awww, sweet baby snuggles!

 Lydia be like, "Dad, don't even try to fake it, you're gonna mess with me now and I don't like it."  Trach Care Time = Family Time

November 1st is looming over our heads

October 2015 status update:

We have night nursing on the weekends.  Marc is super!
We have night nursing every other Monday and Tuesday.  Melinda is fabulous!
We have night nursing every other Tuesday and every Thursday.  Nette is awesome!

We have no night nursing every other Monday night and every Wednesday and Friday.  Not a huge deal.

November 2015 status update:

We have night nursing on the weekends.  Marc is super!
We have night nursing every other Monday and Tuesday.  Melinda is fabulous!

We have no night nursing every other Monday and Tuesday and every Wednesday, Thursday, Friday.  Ugh.  Nette is all awesome saucey and sits for her RN boards and get a new job at the hospital.  Sad day for me.

I just deflated.  I got instantly more tired.  My shoulders slumped.  My head bobbed.  I'd cry if I had it in me.  What a crappy email to get.  All while on hold with Amerigroup for 22 minutes and 17 seconds.  I'm hanging up and going to Caribou for some coffee.  Blah Blah Blah...are you still reading?

Deletion 22

I don't write much about Lydia's 22q11 deletion because I don't know much.  I know what it has meant for her so far.  I do not know what it may mean for her in the future.  

I came across this young lady's blog today and I can't help but wonder if Lydia will be like her.  Amy is 20 years old, starting college, and has mainly been affected in social and emotional ways, along with learning disabilities.  

It's a very hard genetic disorder to read about and come to any conclusions because there are so many ways it could affect the human body.  I think we know most of the physical ways this deletion will affect Lydia.  We have yet to know the psychiatric and intellectual ways.  

Here is something I borrowed from Amy's YouTube channel and below that is her 22q music video.

22Q is the second most common genetic disorder after Down Syndrome, yet most people don't know about it. It is also commonly known as VCFS (Velo Cardio Facial Syndrome) and DiGeorge Syndrome. This syndrome affects 1 in every 4,000 live births. 

Teachers, special educators, doctors, nurses, psychiatrists, psychologist, and families need to be informed about this disorder. It can be hiding underling medical, psychiatric, and learning problems. This includes heart defects, visual and hearing problems, growth/development, social/emotional problems, and Intellectual disabilities. There are over 80 characteristics associated with this syndrome, which makes it difficult to detect without DNA testing.

Million Dollar Baby

Preparing to pay our last Children's Mercy Hospital bill which will get us down to the penny on our deductibles, coinsurance, max out of pocket, everything!Thank goodness, thank goodness for insurance.  From my calculations based off of very vague descriptions on itemized bills, Lydia's hospital stay from June 14 to August 31, cost...

$1,229,120.00

New York, New York

It's Yankee night here at Casa de Riggs.  We are proudly sporting our pinstripe love.  Not to worry, this Yankee Blue turns Royal Blue Thursday!  ...but tonight, these are our people!

"Love is the most important thing in the world, but baseball is pretty good." Yogi Berra

Excited to snuggle on the couch, watch the Wild Card, and eat some pizza!  

"You better cut the pizza in four pieces because I'm not hungry enough to eat six." Yogi Berra

4:00am I'll just wake up now and not sleep any longer.

All I ask if for a night nurse that meets the following qualifications:

1. Doesn't sleep on the job.
2. Doesn't eat all my food.
3. That is a clone of 1 of the 3 awesome night nurses we have that can't fill all our open shifts because they are so super duper that everyone wants them to be their night nurse!

Is that so much to ask?  

I realize that Dan and I were excused from the typical overnight lack of sleep due to baby needs thing the entire time Lydia was in the hospital.  I realize that it might not be a lot to ask for us to do it now on our own.  It is a little tough though.  

So, why a night nurse?  Lydia goes to bed around 9pm and sleeps through the night.  

Now you're really asking, why a night nurse?  I'll explain.

Lydia gets fed at 9pm, 12am, 3am, 6am, and so on via a feeding pump and tube.  She needs meds at 4 of her 8 feedings.  She needs to have her feedings stopped and her tube flushed 2 hours after every feeding.  Lydia is a diva and hates a wet diaper, so there is no letting those go any longer than the time it takes for the little yellow diaper line to turn blue.  You and I have secretions in our lungs that go through our trachea to our mouths and we either spit them out or swallow them.  Lydia has the same secretions, but she has to cough them out through her trach.  This can be difficult for her to do, especially overnight when she is sleeping and not alert enough to realize what she needs to do.  This can lead to coughing spells, her trach needing suctioned, for her to be repositioned or moved to more of an incline.  Lydia also sleeps with an apnea monitor and a pulse oximeter.  If she has a pause in her breathing, it alarms.  If she breathes too rapidly, it false alarms.  If her leads or belt is loose and she moves, it false alarms.  If the memory gets full, it beeps a bunch too.  The pulse ox lets us know her pulse and her oxygen saturation.  If she's coughing or kicking or happy and squirming, it can alarm.  If she is coughing, needs to be suctioned and may have a plug, it can alarm.  If she's really mad because her diaper is wet or mom and dad are doing trach and g-tube care, it can alarm.  She also wears a humidifying mask when she is sleeping to provide moist air for her to breathe and that water canister has to be filled about 4 times a night.  Also, it sounds like an air compressor.  

So, all that said, is it really that bad?

Nah, not really.  It's Lydia.  We'd do anything for her at any time of day.  We just really love it when we have some help.  Add all the stuff up above up and you get approximately 20-30 times you are up off the couch checking her.  It may be just watching her to see that she's breathing, it may be a diaper.  Between all those times it's just really tough to fall asleep to the sounds of the air compressor.  After so much middle of the night awakenings, you end up being awake and alert and you start to get anxious.  Anxious while listening to her breathing or coughing.  Anxious while watching her monitor lights beep or watching her pulse ox numbers fluctuate.  I'm whining a little bit, but I also think some people may want to understand.  The hardest part is one of us sleeping on the floor, the other sleeping on the couch, and both of us playing possum with the feeding alarm goes off on our cell phones at 3am. 

"Dan? Are you up?"  Kinsley whispers from the couch soft enough not be heard over the humidifier.  Dan doesn't stir, he's too still actually.  Kinsley catches his eyes flutter.  Kinsley rolls over to fake sleep and bury her head in the pillow.  Dan peeks over the coffee table to see if Kinsley saw his eyes flutter.  Both lay still a little longer until one begrudgingly assumes the role of adult parent to Lydia.  Once either parent is up and tending to her, all they have to do is look at that little face to know they would do this every single night if necessary.  Those cheeks make it all worth it! 

Butterball!!!

You're looking at a 10 lb 3 oz baby!  

We are working on being a butterball by Turkey Day!

She is on track to double her birth weight by about 4.5  months!

5 lbs 15 oz ... 11 lbs 14 oz is the goal!

As always, please excuse the wild bed head in the pictures!

Riggs Family Slumber Party

Since Dan and I are a little particular about who cares for Lydia, we currently have no overnight nursing every other Monday night, and every Wednesday and Friday night.  So, if we seem like zombies today you know why.  It's October 1st, though, and zombie behavior should be allowed this month.

We had our third night alone at home with Lydia and it was our best night.  The last two nights we've had with her we both woke up feeling like we did more work than the other one.  Imagine that.  Last night, we were tag team extraordinaries.  Must be all that WWE we watch.  Cheers to us and cheers to Nette, our fabulous Thursday night nurse for this evening!