Sunday, January 22, 2017

Sunday...

Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek. ~ President Barack Obama







Friday, January 20, 2017

Friday Phone Dump...

Sick days... with a baby who still feels better than she did when she was in heart failure. She doesn't know whether to lay down or go play, poor thing!


Hematology clinic. She's SO good at hospital visits!


Upper body ultrasound to check the clots we were hoping would be gone with the anticoagulants she's been on. Sadly, they were unchanged...


Just her handful of morning meds...


Workers doing work...


We needed valentine's decorations. So my crafty girl made some.


Dentist visit...there was a time when I had to drag him here kicking and screaming. Now he walks in with a smile. Progress!



Watching her kids play in the snow. Crying because she is sick and can't play outside. Saddest...


The baby gets scared at shows very easily. Apparently if you can't see it, it's better? Ha!


He would play outside all day in the snow if he could. Those dimples go away when we make him come in...


Pretty baby...


Sick sisters... we were doing so well, and then everyone got sick. Our biggest ended up with pneumonia, and our littlest ended up with croup. Clearly the littlest isn't too upset.


A year ago our tiny P was on ALL of the meds 42 doses a day! Now? So much less! These are pretty much what our girl will take for the rest of her life, though the anticoagulant shots will come and go...



My girl is not one to let sickness stand in the way of Chinese New Year planning...


This one is not one to let a little fever stand in the way of her happiness.


Back at the hospital...early morning blood draw, vitals and echo, back for more blood work, then EKG and heart clinic. And she smiled, and played like this the whole day.



So good at hospital days.





















Precious baby...all that hospital business can wear a girl out!



His new favorite thing (obsession), is taking out the trash. He loves him an empty recycle bin...








Sunday, January 15, 2017

Sunday...

Faith is taking the first step, even when you can't see the whole staircase. ~ Martin Luther King, Jr










Thursday, January 12, 2017

Sick Baby...

One of my biggest worries as a mama to a heart kid, is having them get sick...

I have seen so many heart babies get sick with a cold and end up in the hospital for weeks and weeks, and every heart mama knows that something insignificant for a healthy child could mean days or even weeks in the hospital for our heart kiddos.


This week tiny P got sick. One day her oxygen sats were lower than they should be, and by that evening she had a low grade fever. The next day her temperature stayed at 103 even though she took tylenol around the clock (transplant kiddos can't have ibuprofen).


She stayed on the couch, and was just miserable. I talked to her cardiologist, and her team several times a day while we debated what to do...


We decided that since she was able to take in a ton of fluids via her g-tube...can we just talk about how much I LOVE having a g-tube?! In normal life we use it just for meds, but when our baby is sick, and not eating or drinking? We pushed so many liquids through that tube, and it was a life-saver... anyways, she was getting fluids, and not losing her meds, so everyone agreed to keep her home.

Then she got the croup. Hello, freaky cough...and we went to the ER. By this point in our week, little M had joined tiny P and had a cough, and had stopped talking because it hurt, so I took her along to the ER with us. Little M had pneumonia (heart kiddo with weak lungs turns a cold into pneumonia!).


So sad. This week has been all about taking care of our sick girls and getting them back to a healthy place. Little M is getting there, but tiny P will probably be sick for a while.

This is the way of things with heart kiddos...add in those immunosuppressants after transplant, and her little immune system cannot fight off infections.

We are still keeping a close eye on her temperature, and her oxygen sats, and her team checks in with us daily. We will get more blood work done this week to make sure that nothing bacterial is happening...we want to make sure we are keeping her heart safe!

Hopefully this won't last too long, and we can keep our girl home!


Sunday, January 8, 2017

Sunday...

What children need most are the essentials that grandparents provide in abundance. They give unconditional love, kindness, patience, humor, comfort, lessons in life, and most importantly, cookies. ~ Rudy Giuliani 




Friday, January 6, 2017

Friday Phone Dump...




Morning hair...don't care.



Reading with daddy.


Because when it's library day, why wouldn't you check out a dictionary? This girl...


Christmas crafting...


Little guy in a big chair...


Practicing her salute.


We love each other...


Our favorite marine...


Soldier face, which looks just like mad face.


First tooth lost...naturally, not at the dentist.


Little soldier boy.


A plate full of bean curd. It's what she loves.


Grandpa love.


Reading at the bookstore.


Visiting Santa...it gives me all the feelings. Last year we visited this same Santa in November, and the very next day we got the call that there was a heart for tiny P.


Hair blown dry after a bath...makes me giggle.




Why is she so big?


She LOVES dr. Bear. She is scared to death of all Halloween costumes, and people in masks give her nightmares. But dr Bear, with his ginormous head is the love of her life.


These girls could not love this woman more. Our social worker at the hospital is fabulous, and adored by our whole family.


Little M was the proudest little girl to be invited to be a special guest by the hospital at the opening of the healing garden.


So big, and so precious. I love this girl.


Working hard on crafting...