We got off cheap this time!

I finally have received all the EOBs for Lydia's last hospital stay and surgery.

$300,017.09

Let us not forget that last $0.09.

Oops!  Spoke too soon.  Another $10,000 just rolled in on the latest EOBs.  

Miss Prissy Veins is a messy eater!

A lot has been going on!  For starters, Lydia got a whole bunch of blood drawn last Thursday.  She and I made our way to CMH downtown all by ourselves in morning rush hour because that's how we roll.  Then we waited around in Vascular Access for about an hour so that Miss Prissy Veins could get her blood drawn for labs.  She behaved and only had to be poked twice, which is about 2 times fewer than normal.  We went in our jammies, no judging!  Then we stopped curbside by Mama's work in the Crossroads and said hello to her.

Wednesday our Occupational Therapist came to see how Lydia was doing.  The answer is really good!  We are working on upper body strength so that Lydia can crawl and pull up.  Lydia has never liked tummy time because of the trach, surgery, Mic-Key, who knows what!  You try holding those cheeks up!  She needs to do some adaptive tummy time, side play, kneeling play, etc. to strengthen the chub into muscle.  She'll get it!  About the time Carrie says to work on something and shows us how, in no time Lydia is doing it.

Carrie also checked out her food tasting buffet experiences.  Lydia has twizzlers, pretzel rods, carrot sticks, slim  jims, jumbo marshmallows, chester puffcorn and cheese puffs.  She gnaws on all of it and creates a slobbery disgusting mess that Dad laughs at and Mom cries over.  But it's all worth it because...ready for this...prepare yourself...Lydia ate 3 cheese puffs!  The melted and dissolved in her mouth and she swallowed them and wanted more.  Yay Lydia!  

Last but not least, we're starting to sign.  1. because babies communicate by signing and 2. because Lydia can't talk and babble like a baby without a trach.  So, we (mom and dad) know mom, dad, gma, gpa, elephant, giraffe, play, ball, book, please, thank you, bath, bed, eat, more, all done, bye/hi smart, I love you.  We are talking and signing as much as we can, then using her hands to repeat the signs.  She probably thinks we are a little nuts, but I'm sure she already does!

1 year ago today - Baby Shower Day

I had the best Storybook Baby Shower!  It was bright and colorful with Little Golden Books, Crayons, festive balloons and bookmarks.  Simply perfect for a librarian.  Thank you Mom, Jen, Mary Beth, Emilie, Kristen and Angie for making it such a great day!

 

1 year ago today - the tougher day

We left for the long drive through rush hour traffic to Children's Mercy Hospital in separate cars thinking we might get good news and go back to work after the appointment.  Our appointment was at 8:00am at the Fetal Health Center.  We went first to a room for the fetal heart echo.  I was warm and uncomfortable.  It was here that I learned of my polyhydramnios, a medical condition describing an excess of amniotic fluid that is seen in about 1% of pregnancies.  To give you an idea of the amount of fluid I was carrying, at 36 weeks pregnant I was measuring 45 weeks pregnant.  Because of this the camera had to be pushed extra hard on my belly to see through me, the fluid and into Lydia's heart.  It was very hard to lay flat and breathe and have your stomach pushed on in a hot room when you're stressing about what the doctor will find.  

That all took about an hour.  We then when to a consultation room and waited.  Waited for someone to bring us water.  Waited for someone to put Kleenex on the table.  Waited for the cardiologist to read the echo.  After what seemed like a lot more time than it was, Lori and Dr. Goudar came in, a Nurse Practitioner and Cardiologist.  They explained that Lydia had a hypoplastic arch and a VSD, so a small aortic arch and a hole in her heart.  Yes, this news would change later on, but for now this is what we knew.  Those streaming tears without sniffles and sobs came back through the entire morning.  I was furiously scribbling notes to research later...I was scribbling in the journal Dan bought me on our 3rd Wedding Anniversary to use as a pregnancy journal that turned into more of a medical notebook. 

We also met with Kara from Social Work and Jennifer from Genetics.  No one really told us much after the news about her heart.  They were gathering information on us to make sure we had the support we would need.  We'd find out more from the Geneticist later on, too.  

What we knew for sure that day is that we'd have an appointment every Wednesday morning for the next 10 weeks with Dr. Bennett, my new OB.  We wouldn't see Dr. Newby anymore.  We wouldn't go to Overland Park Regional anymore.  We wouldn't know what to do anymore.  We would fall apart and put ourselves back together several times.  We would tell our family and closest friends one at a time.  We would have times where we would stare into space and wonder why and how.  

We would put on a brave face the next day because it was my baby shower day... 

1 year ago today - the tough day

One year ago today we had our 2nd sonogram with the Midwest Perinatal Associates.  Lydia had measured small at her 20 week sonogram and at the 1st visit with Midwest Perinatal they just thought she was small and wanted to do another follow-up.  Fast forward to one year ago today.

Dan and I met at Overland Park Regional and were in the exam room.  The technician did the sonogram and then Dr. Finley came in.  He didn't comment on any of the images but looked a little more for himself.  He kept focusing on her heart and not saying anything.  I just knew it there was something wrong and I began to worry.  

He finally stopped and had me sit up.  We had already had 3 sonograms at this point and his wasn't reacting the same as any of the others before.  He was hesitating, he was breaking bad news, he was preparing for something.  He said that Lydia's aorta looked small and that we would need to go to Children's Mercy Hospital for a Fetal Heart Echo.  

After that I only remember tears that wouldn't stop, but not real sobbing.  I just cried for what seems like hours.  Dad and I were led out the side door of the office and went straight to our cars.  I put my sunglasses on, the white ones, so I didn't have to look anyone in the eye.  We went to my car and he made sure I could drive home.  He followed me every step of the way.  I drove home in silence with tears streaming, no sobs, no sniffles, just tears for 45 blocks.  

We sat on the couch and stared.  We didn't talk much.  I remember I was sitting with my legs crossed and my head was on Dan's shoulder.  Then my phone rang.  It was Children's Mercy calling to schedule the echo for April 10th.  After we scheduled with them Dan called my parents and then his parents to let them know what was going on.  

I don't remember anything else.  We managed to sleep, mainly from exhaustion I think.  We managed to work the next day but I remember just keeping my head down and staying quiet.  I didn't tell anyone.

Now, fast forward another year to today.  In the big picture, none of that matters.  It was a test of faith and perseverance and toughness.  Dan and I had no clue we could carry this.  It put things in perspective.  Unbelievably,  we were the right two for the job.  Lydia amazes us every day and gives us more reasons to smile than we ever thought possible.  

People ask how we do it.  My answer is always, "I know nothing else.  This is normal parenthood for me because I have no experiences of my own to compare it to.  You just do it."  You just love those sweetcheeks every single day!

BEST DAY EVER! Passy-Muir Valve

It's the most wonderful time of the year!  Yep, I am signing Christmas Carols because that's just how gosh darn happy I am right now.  Lydia had her big 22q11 clinic today where she sees 5 different providers in one long day.  We packed snacks for mom and grandma and scored some diet cokes from the clinic.  Here's our report and then I'll get to why we're singing!

Endocrine:  All is good.  Taking the dosage of Calcium down a bit.  Going to have labs drawn in a week or two to check Calcium, Vitamin D and Thyroid.

Immunology:  All is good.  Going to have labs drawn in a week or two to check T and B cells.  If all is still good, we'll be able to get our 1 year vaccines which are live.  22q11 can cause Lydia to be immunocompromised, so no live vaccines until we're sure she's not.

Gastroenterology:  All is good.  Lydia is eating, digesting, tooting and pooping.  Yes, that's the conversation we had with her GI doctor.  

Cardiology:  All is very very good!  Dr. Shah was extremely happy with the EKG and echo.  All the repairs are looking good and there is nothing concerning right now with her heart.  We will visit again in 3 months and expect to see the bulky muscle that was getting bigger due to her heart working so hard start to relax and go back to a normal size.  Good news for now is that it's not any larger than before surgery, but it would have been had the surgery not worked.  We will still watch her valve and pray that it grows with her.

Ear Nose and Throat:  All is good.  Do you know why they are called ENT?  Because no one, not even they, can pronounce Otolaryngology.  Anyway, Dr. Arganbright, who I think very highly of, checked Lydia out, wasn't planning on scoping her and had no intentions of giving us a Passy Muir Valve.  WHAT?  That's about the only REAL reason we were there!  Lydia's main team that follows her said we are ready for Passy trials and that her ENT will take care of getting us started at this appointment.  Well, no one talks to anyone in that hospital, let alone between a clinic downtown and a clinic at south.  

So, I let them know my plan to get a Passy today so that the Home Vent team could see how she's tolerating it when we go in mid-May.  Huh?  Ever seen a bunch of doctors scratch their heads?  I was told by speech and OT that is something we usually plan for and that there are clear specific instructions to be taught on how to trial a Passy. So, I again tell them the plan and they leave to go call Home Vent.  

Fast forward maybe 30 or 45 minutes...in walks Dr. Arganbright with a Passy and a post-it note with instructions from our Home Vent team.  Muwhahahahahaha!  I don't always get what I want, but when I do it means great things for my kid.  We got a Passy, we got a passy!  Yes!  

A Passy Muir Valve is a tracheostomy swallowing and speaking valve that redirects air flow through the vocal cords and out the mouth and nose, mimicking a more normal respiratory process.  What it means for us?  We can hear Lydia!  She can make noises, real vocal sounds, not just sucking on her tongue and squeaks.  It was so awesome to hear her.  She really enjoys hearing herself and gets excited to make more noises.  She's just so gosh darn amazing.  :-)  Grinning from ear to ear.  

We will trial the Passy for a minute or two a few times a day.  We'll then move up to about 5 minutes a few times a day.  As tolerated, we'll keep increasing her time and frequency until she wears it whenever she is awake.  This is so huge!  She can start to communicate with us via sign language and voice.  The fear of her being speech delayed is still realistic, but we are on our way now!  

Other really good things the Passy will help Lydia with:

• Reduces Decannulation Time: The Passy-Muir Valves can be utilized as an interim step in the decannulation process by allowing the patient to begin to adjust to a more normal breathing pattern through the upper airway on exhalation. This allows the patient to gain confidence and the physician to assess for airway patency and can significantly shorten the decannulation process.
• Improves Oxygenation: The closed position "No Leak" design of the Passy-Muir Valves restores a more normal closed respiratory system. As a result, Positive End Expiratory Pressure (PEEP) is reestablished which facilitates improved oxygenation.
• Improves Olfaction: The Passy-Muir Valves improve the sense of smell by reestablishing airflow through the oral/nasal cavities during exhalation. This improved sense of smell may lead to an increase in sense of taste, appetite, and caloric intake which is important in the recovery process.
• Facilitates Secretion Management: The Passy-Muir Valve design improves swallowing and facilitates a stronger, more effective cough with oral expectoration of secretions. Evaporation of secretions occurs due to redirection of air through the upper airway during exhalation. May reduce suctioning needs and associated costs by restoring function of the bronchial hygiene system.

Passy Muir Valve info was found on this website if you would like to know more: http://www.passy-muir.com/

Blended Diet coming soon to a Lydia near you!

You guys!!!  We're going to start a blended diet for Lydia soon.  I'm so excited to give her real food, healthy food, wholesome food.  Can we say mega meal prep is in our future?  Yes!!!  A blended diet is nothing more than regular food blended to a consistency that can be passed through a feeding tube.  

Lydia eats Enfamil Gentle Ease through her Mic-Key button.  That's all well and good when you are a baby, but what happens when you grow up and you're still getting all your nutrients from processed liquid stuff?  Well, maybe nothing bad, but can't you imagine how much better it would be if you were eating sweet potatoes, kale and cauliflower?  Healthiest baby on the block!

Most babies have begun the transition to real food by one year of age and it's just a normal thing.  Lydia has only had tastes, not that we wouldn't give her more, it's just she doesn't know she is supposed to eat it.  When she tastes baby food she maybe plays with a couple tablespoons of food and doesn't consume that much.  We'll continue to work on oral stimulation and feeding, she'll get there.

For now, we learn things.  In a couple of weeks the nutritionist from Infant and Toddler Services of Johnson County will come meet with us.  We'll probably start with adding one food to her formula feeds.  Then we'll see what she tolerates and increase and add variety from there.  

Oh and a pretty cool kitchen guru perk...a vitamix or blendtec is a necessity.  Crazy!  I will thoroughly wash the jar/pitcher after making margaritas, I promise, I promise.

1 month later

Do I look like I had Open Heart Surgery 1 month ago?  Nope.

 

Guess what we did?

Lydia and I ventured out to run errands on our own yesterday. No one in the back seat with the big girl. We've always been of the mindset that someone needs to be back there with her in case. In case she decanulates, in case she turns blue, in case she gets a plug. Well at work I say you can't plan and decide based on the what ifs and the maybes. I took my own advice, loaded her up and off we went. If an in case happened I would pull over and deal with it. We were out for 1 hour and made 3 stops and had zero in cases. It was awesome! Look out world, spring has sprung and so have we!

Up!

Oxygen levels are on the rise!  Lydia was on 1 liter of oxygen when all this fun started last week.  Monday night we weaned her down to 3/4 liter of oxygen.  Last night we went down to 1/4.  Yay!  We'll do 1/8th and then 1/16th and hope she is ready to do all the hard work on her own.  She's great during the day when she's up and feisty, it's just those deep sleeps that are a drain on her.  DIVA!