A December to Remember

We've just been doing our thing and having a great time as a family.  We celebrated Cookie Day, my birthday, Christmas Eve, Christmas Day and now our first snow fall!  Here is a photo dump of all that's been going on. 

Lydia's first taste of ice cream at Mom's birthday dinner!

Grandma's first trach change.  Lydia looks mad but she's fine, this is typical trach change behavior!  This is huge because now we have two people that can watch Lydia besides her nurses.  Meaning I can work evenings and weekends when necessary and Dan and I can go out...together...every now and then.  

Lydia and all her Christmas presents!

Green Beans and Peas = okay.  Squash = not so much.  Sweet Potatoes = Jackpot! 

  

Getting some rest with all her buddies.

More green beans, please!

Kiddos with feeding tubes can develop oral aversions and not want anything in their mouth.  This can make teaching a tubie how to feed very difficult.  I'm on a mission to not let that happen!  

We do oral stimulation with Lydia every day.  This may be a couple of minutes to 10 or 15 over the course of the day.  We use pacifiers, teething rings, NUK brushes, fingers, toys, clothes, lovies, whatever!  The goal is to get Lydia to accept objects into her mouth and for her to explore with her lips and tongue.  I think we've nailed it!  That kid can't keep her fingers out of her mouth and her owl and giraffe lovies always find their way to her mouth.  Hooray!

I kept on asking when we could start tastes with Lydia and I wasn't getting any response from her doctors.  Finally, about a month ago, I told them that our in home Occupational Therapist was going to start tastes and that I wanted them to sign off on it.  The Special Care clinic at CMH had a minor panic attack and scheduled me an appointment with their OT.  I win again!  Nothing like a little threatening competition to get my way.  We went to see Connie at CMH last month and Lydia tasted rice cereal.  The pictures below are of Lydia tasting green beans last week at our appointment.  

Everyone asks with excitement, "how does she like it?"  My response, "eh."  She thinks about it, licks the spoon or NUK brush, eventually lets it in her mouth.  Then we have a brief moment of gagging until she realizes the world isn't ending because peas on a spoon have entered her mouth.  She'll wallow it around a bit, stick her fingers in her mouth, spread it all over her face and then it eventually goes down the hatch.  We have squash and sweet potatoes to try next.  Maybe orange is more her color.  

Please notice the awesome hair day that Lydia is having yet again.  It's always awesome.

Please notice the fat chub on her arms.  The girl is building biceps already.  #bodybuilder  

Cookie Day 2015

There has been a cookie day in our family since my mom was a little girl.  

This year marked my 32nd and Lydia's first!  

Great memories being made each and every day. 

Every day is a good hair day!

 Sitting in a basket because mom was busy doing stuff.  

  Watching mom wrap Christmas presents, but not mine.

  Wearing Dad's hat while we watch the winter meetings.

   Hanging out in my Bumbo while mom gets dinner ready.

Our Thanksgiving in Pictures

Lydia hung out with Mom on Wednesday and played while Mom made pies!

Lydia sporting her Turkey day jammies and onesie with bling!

Krupich Ladies = 7 strong  Poor guys are way outnumbered.

Chillin' on the couch and watching TV with Papa on Friday!

More TV watching with Elena and then Tree Decorating!

Worn out and zonked on Saturday morning!

Looking all chubby for the car ride home and 

getting a Sunday morning nap in before Nana and Papa came over to play!

Weekend Emergencies

When you have a child you will have some emergency situations in your life.  When you have a child with special accessories you are gauranteed to have some emergencies...all in the same weekend...maybe even when you are by yourself.

Saturday:  All is good. I gave Lydia a bath after her 9am feeding finished.  We were hanging out on the blanket in the living room putting lotion on, cleaning her MIC-KEY button, changing her  trach gauze.  I pull the old trach gauze, turn and put it in the trash, turn back and Lydia has both hands wrapped around her trach and pulls it right out.

Shit!

Second 1: panic
Second 2: undo current trach tie and toss out of way
Second 3 and 4: jump up and grab trach off her crib
Second 5 and 6: fumble to open the bag
Second 7: grab the tube of lube
Second 8: lube up the trach
Second 9 and 10 and 11: man handle my kid so I can expose her tiny neck and see her stoma without all the usual trach change props
Second 12 and 13: place the trach and pull the obturator
Second 14 and 15 and 16 and maybe 17: fasten the ties
Second 18 and about 5 to 10 minutes after: hold my baby who is perfectly happy now while my hands stop shaking

Sunday: All is good. Lydia is cat napping on her boppy pillow in her crib while her 6pm feeding runs.  We're watching TV and having dinner.  She wakes up, feeding is over, change a diaper, she's playing and kicking and happy.  I get her out of her crib at about 8:40 to get her monitors on her for bedtime. Her outfit is soaked. Huh.  Put her on the changing table, undo the snaps, and there her MIC-KEY button is, laying on the outside of her, balloon and all.  Wait, that goes on the inside of her tummy.

Shit!

Second 1: panic
Second 2: Dan come here now.
Second 3: watch her
Second 4 and 5: retrieve new mic-key button
Second 5 thru about 12: retrieve syringe with 3 cc of water
Second 13: grab the lube
Second 14: lube up the button
Second 15: take a deep breath
Second 16: exhale
Second 17: insert the button
Second 18 and 19: fill the balloon with water
Second 20: rotate the button to check for tightness
Second 21: watch my baby smile and kick on the changing table
Second 22 thru 25: put my head down on the changing table and exhale
Second 26: check for shaking hands...barely shaking this time

Shit!

A few minutes later Dan asks, do we need to let the doctor or anybody know that came out? Nope, that's just normal kid with accessories stuff, I'll order a new spare tomorrow.

Well, at least I know I can trach change by myself if I have to and I'm sure glad I remembered how to change that MIC-KEY from 2.5 months ago.

Oh, and all that in under one collective minute. I impressed myself. Maybe next time I can shave a few seconds off my time.  Yes, I'm sure there will be a next time.

A scar simply means...

No, Lydia never lost her hair or had radiation and chemo treatments.  No, we cannot imagine what it is to go through and fight cancer.  

Yes, this story is still inspiring to all people.  Yes, this story can help girls with or without scars.  Yes, this story is about beauty within.

I hope that Lydia will someday know how beautiful she is inside and out.  I hope she knows that her scars saved her life and gave her life.  I hope she can see the beauty in the world.

"Every scar tells a story, every bald head, every dark circle, every prosthetic limb, and every reflection in a mirror that you might not recognize anymore. Look deeper than skin, hair, nails, and lips. You are who you are in your bones. That is where you have the potential to shine the brightest from. It is where your true beautiful self lives." ~Clara Bowen

http://www.refinery29.com/2015/11/97504/clare-bowen-hair-cut#.xmr02fk:6pqR

This is food, Lydia, and it goes in your mouth!

 

We started our day like this.  We did OT and PT in our jammies with Carrie, our in home Occupational Therapist.  The we raced downtown to our CMH OT appointment.  I've been asking for this appointment for a month and finally got it!  I want the hospital to evaluate Lydia for tasting and eventually eating orally. 

  

We strapped her in this cool foam chair and got ready to chow down.  Connie, the OT at CMH, played with Lydia's cheeks, tongue and lips.  The little show off had all the right moves.  She then gave Lydia a NUK brush and was rubbing it on her gums.  Rock star just grabbed the brush from her and did it herself.  No joke! 

We decided to try rice cereal for Lydia's first taste.  Yum!  She did not love it and she did not hate it.  She liked it just fine, mushed it around a bit, and swallowed it.  Hooray!  We have been cleared to do 4-5 tastes of rice cereal once a day for a week.  Then, we can move to 4-5 tastes twice a day for about a week.  Then it gets really good, we can add a puree!

It was a Riggs Family Slumber Party last night so I sat Lydia on the couch with all the pillows and she seemed to like reaching out and rubbing the pillowcase.  Just wait until we start making forts, kid!  So. Much. Fun.

Having a red headed baby

This.  All of these things.  So true.

Check out this quick post on the Disney Baby blog.  

http://www.disneybaby.com/blog/6-things-to-know-about-having-a-red-haired-baby/

Here is a quick update on what's going on with Lydia!

Lydia is chunking up and weighs 12 pounds now.  She is 23 inches long.  We're working on rolling over and practicing sitting up with assistance.  She is blowing raspberries, sticking out her tongue, sucking on her bottom lip, and she loves to nibble her fingers.  She's starting to reach for her toys and hold on to more things.  This week we visit Occupational Therapy to see if it's safe to try tasting things.  The answer is YES!!! because Mom and Dad have already been trying out flavored infant gum/toothpastes with her.  I'll wait for official word before trying anything else!  Enjoy the photos!  PS: I've given up on taming the hair.

                               

Tis the season ... for RSV

Lydia gets her first RSV Vaccine today and will continue to get it once a month for 5 months.  It's a common thing for babies to get, but for Lydia it can be severe and life-threatening. 

 So, I think needless to say, we're getting more strict on the visits and the hand washing.  Just please be honest if you have sick people in your home or if you are sick.  And if you do come visit Lydia, don't even think about touching her before washing your hands and using antibacterial hand gel...which is supplied en masse all over my living room. 

All the information below is borrowed from webmd and the link is provided below.  

Respiratory syncytial virus (RSV) is a common and highly contagious virus that infects the respiratory tract of most children before their second birthday. For most babies and young children, the infection causes nothing more than a cold. But for a small percentage, infection with the RSV virus can lead to serious problems such as bronchiolitis, which is inflammation of the small airways of the lungs, orpneumonia, which can become life-threatening.

The risk of severe infection is greatest for:

• Premature infants
• Children younger than 2 who were born with heart or lung disease
• Babies and young children whose immune systems are weakened due to illness or medical treatment
• Children under 8 to 10 weeks of life

The following tips can help prevent the spread of the virus to your baby:

• Wash your hands frequently, particularly after contact with anyone with cold symptoms.
• Clean and disinfectant hard surfaces.
• Do not allow peopleto touch your baby without first washing their hands.
• Avoid kissing your baby if you have cold symptoms.
• Keep your baby away from crowds.
• Do not allow anyone to smoke around your baby.
• Limit the time high-risk babies and young children stay in day care, particularly from late fall to early spring when RSV is most prevalent.
• If possible, keep your baby away from anyone, including older siblings, with cold symptoms.

www.webmd.com/parenting/baby/rsv-in-babies

Night Nursing deserves a quiet night

See what I did there?  Night Nursing...Nightswimming by REM?

Sat 10/31 = nursing
Sun 11/1 = nursing
Mon 11/2 = nursing
Tue 11/3 = nursing
Wed 11/4 = Riggs Family Slumber Party!
Thu 11/5 = nursing
Fri 11/6 = nursing
Sat 11/7 = nursing
Sun 11/8 = nursing
Mon 11/9 = nursing
Tue 11/10 = nursing
Wed 11/11 = Riggs Family Slumber Party!

It's ... Almost Paradise

Whoa-oh

Almost paradiseWe're knocking on Heaven's doorAlmost paradiseHow could we ask for more?I swear that I can see forever in your eyesParadiseYeah, it's paradise

I almost feel like ... Dancing in the Street

Oh, it doesn't matter what you wear
Just as long as you are there
So come on, every guy grab a girl
Everywhere, around the world
There'll be dancin'
They're dancin' in the street

I'm so ... Happy

Because I'm happy
Clap along if you feel like a room without a roof
Because I'm happy
Clap along if you feel like happiness is the truth
Because I'm happy
Clap along if you know what happiness is to you
Because I'm happy
Clap along if you feel like that's what you wanna do

Oh my stars!

What 4 things equal the best night ever?

1. The Royals win game four.
2. We have a night nurse.
3. Lydia has been home for two months.
4. We gain one hour of sleep.

Feeling so good and refreshed this morning!

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.