Guess what 1 year ago today was?

The day Lydia Rose came home from the hospital!  

Our precious sweet girl has been home for 365 days!

THEN

NOW 

Be brave sweet girl.

Have courage precious child.

Love life, Lydia.

Love you always and forever!

Mom and Dad

We're Crawling and Climbing!

August Fun in Photos!

Making noise with her drumsticks!

Bathtime in the sink!

We went out for icecream!

Don't drink and drive Lydia!

Cool new car from MaMa and PaPa!

 

Lydia has no fear!

Chillin' in her new chair!

Learning to cruise!

Proving she can still stand up with the mattress lowered.

Racing Daddy down the hall!

Still her fight song!

Our neighbor and good friend, Victoria, mentioned once that "Fight Song" was Lydia's song.  Every since then I've held that to be true.  I hear it on the radio and belt it out.  I hear it on a walk and am overwhelmed with everything that has happened.  I hear it while running a 5k in 100 degree weather and it pushes me to keep running.  Lydia is a fighter!

Tracheostomy: 1 Year Later

One year ago today Lydia received her tracheostomy.  The ENT surgeon created an airway in Lydia's throat.  We insert a new tube into that airway every Sunday.  We clean around it twice a day, everyday.  We suction it when she has too much mucus and phlegm.  We put caps on it to teach her to breath like you and I do.  

Never in my wildest dreams did I think I'd write that paragraph.  

Now I write it like it's just something every mom and dad does with their child.

Roll back a year to the week before Lydia's tracheostomy.  We were mortified.  We wanted to do everything in our power to keep this from happening.  We wanted every test redone, every lab drawn again, every doctor to convince us otherwise.  I remember it like it was yesterday when I was finally convinced.  It took 3 doctors to convince me, none of which were ENT specialists.  Dr. Vaughan, our favorite PICU intensivist.  Dr. Pastuszko, our heart surgeon.  Dr. Sandeep...I don't even know his last name, PICU resident that checked on Lydia daily, even on his days off.  

We were in the PICU room right between Breckyn and Jonah.  I knew we were there to stay awhile because we were with other kiddos that had long stays and didn't get moved a lot.  I should have seen that trach coming when we moved back there.  It meant time.  It didn't mean going home.  Whitney and Markey were our nurses because because they were Breckyn's primary nurses.  If you are in the PICU long enough you get to pick your favorites, sort of.  They were wonderful and just loved on Lydia so much.

Let's review.  Why the trach?

With a trach, Lydia is able to breath easier, lower her heart rate, pack on the pounds and try to feed orally sooner rather than later.  

Did it work?

Yes!  Lydia breaths deeply, her heart rate is lower (especially after the last surgery), and she has chub on her cheeks, arms, tummy and thighs.  She does oral tastes every single day.  Remember when no one told us Lydia wouldn't be able to make many sounds and we wouldn't hear her cry with the trach?  That didn't last!  She cooing and squealing and crying for all to hear now.

Whether or not to give your 2 month old baby a trach is a very difficult decision.  I thank God that we listened to the experts and did this for Lydia.  Though it was the toughest thing to do, I still remember seeing her face completely free of wires, tubes and stickers for the very first time since her birth.  It's like her cheeks grew overnight!  When I saw her sleeping peacefully, not needing to be positioned appropriately in order to breathe, I knew it was right.  When I saw her chest rise and fall in steady, even, slow breaths, instead of her entire torso retracting at a rapid pace, I knew it was right.  

I thank her doctors for truly making this a last resort and giving her a chance to do it on her own, but in the end, I thank them more for guiding us down the right path for Lydia.  

Just look at her now!

So this happened...

Therefore, this happened.

And now this happens.

Passing Pastuszko

We've met with Dr. Pastuszko, Lydia's heart surgeon, in an exam room, in a waiting room, in a Ronald McDonald room, in a PICU room, in a 4th floor room.  Never have we had a casual encounter in the 2nd floor hallway just at random.  We did Thursday morning after our Home Vent Team appointment in the Special Care Clinic at CMH.

It was so nice:

• to see our hero with smiles on our faces instead of worry
• to ask how the other is doing without talk of another surgery
• to see Lydia smile up at the man who saved her life, twice
• to see his eyes light up when we mentioned being decannulated soon-ish

Dr. Peter Pastuszko is forever a Rockstar Angel Hero in our eyes.

Doctors Galore!

We've visited a lot of doctors in the past two weeks and we have nothing but good news to report from all of them.

Tuesday the 26th: Carrie and Dana came from Infant and Toddler Services.  They are Lydia's Occupational Therapist and Dietitian.  Lydia is doing well with all her exercises and tastes, and it is still a daily necessity to work on all her exercises. These will help her crawl, sit/stand, cruise, climb and walk.  She's growing and gaining weight!  We have no transferred her to a blended baby food diet.  This means she has a base a Compleat Pediatric, the whole foods based tubie formula she was on, mixed with salt, avocado oil, vitamin d, baby fruits, baby veggies, baby meat and gravy, and infant oatmeal.  Yuck and Yeah!

Thursday the 28th:  Mom and I took Lydia to the Cleft Palate Clinic where she saw the plastics doc, speech therapist and audiologist.  She babbled for them and did very well in the hearing booth.  There was a slight lose of hearing detected and it could be due to wax build up or fluid.  The cleaned all the gunk out of her ears, which was a lot because her ears are so tiny the wax isn't making it's way to the outer ear.  Lydia was NOT a fan!  It took 2 of us to hold her down while 1 person did the work.  Dr. Goldstein will start talking to ENT and Cardiology about the timing of her palate repair surgery.

  

  

Thursday the 28th:  Dan met us at the Broadway clinic and relieved mom from her grandmother duties!  Lydia saw the Optometrist, had her eyes dilated, followed the flashy lights around the room, and was a whiny little munchkin the entire time.  She was HANGRY!  Back home we went and all was good.

Monday, August 1st:  Cardiology day!  Dan and Lydia met me at the College Boulevard clinic and we saw Dr. Shah.  She was a super good girl during the echo and EKG, thanks to dad's whistling, the nurses signing, and mom's willingness to press the button on the spinning toys repeatedly.  Dr. Shah is still impressed with the repairs of both surgeries, the muscle tone and the blood flow.

  

Thursday, August 4th: Riggs, family of 3, headed downtown to see the Home Vent team in the Special Care clinic.  Everyone was impressed with her growth, weight gain, new diet, meds, etc.  They were especially impressed with her cheeriness, playfulness and, of course, cheeks and hair.  Lydia received 4 shots.  EEK!  She's a trooper though.  Then we realized the air pressure issue that my dashboard alerted me to on Monday was presenting itself as a nearly flat tire on Thursday.  Oops!  Dan filled it up at QT and immediately headed to the dealership where it was plugged.  YAY!

No more doctors until the middle of September!  Whew!

   

Lydia doesn't...

People are thrilled when their child crawls, cruises, walks, learns the stairs, runs and jumps.  I will be too, I just have longer to wait.  

Lydia has low muscle tone in her legs due to laying in a bed the first 3 months of her life.  She was missing out on tummy time and rolling.  So when we finally got to tummy time and rolling, she was missing out on crawling.  We went through this with her arm strength already and we got there.  

Lydia thinks she is playing, I hope, but she works all day long, every day, on exercises that help her learn these skills and build the muscles to do them on her own.  If she's not sleeping, she's learning how to crawl, kneel, pull up, sit, stand, etc.  It's kind of like drills or calisthenics.  It's all a lesson and I just hope she thinks it is fun.  

Lydia doesn't crawl.   
Lydia doesn't cruise.  
Lydia doesn't walk. 

Lydia does try her hardest.
Lydia does practice everyday.
Lydia does have determination.

Lydia will crawl.  We have silly shorts that are building muscle tone in her legs.
Lydia will cruise.  We found her pulled up at the coffee table last night.  All on her own!
Lydia will walk.  We are taking one step at a time and will reach that milestone soon.