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Tuesday, September 30, 2014

What went wrong.

Eli has an appointment with the cardiologist on Thursday. Please say a prayer for him. This upcoming appointment will determine if he needs to continue the medication that slows down his heart. He could go through withdrawals or more episodes when he is sent home.

Our hope and prayer is that this will be the finish line. That he would be taken off the medication and he will be healed.

A common response we have received when it comes to Eli's condition is, "at least he didn't have the coarctation." While we agree that it's a blessing he did not need surgery, it's hard to get past those first days of his life. It's hard to look at his newborn pictures. He was born with a strong and healthy heart. I think that's what hurts the most.

The ambulance ride, the medicine, the hospital stay. All of it. It was a mistake.

They put in umbilical lines to administer a medication he did not need to keep a valve in his heart open that did not need to be opened. They gave him a pacifier with sucralose so he wouldn't cry as they held him down. They told me that the sucralose filled him up, so he probably wouldn't nurse. and oh, I died to see those hot little tears on his cheeks as he sucked on his pacifier. The tiny tubes in his nose.

I was exhausted the entire night before he was transferred. As he nursed and nursed. he was so perfectly content as long as he was nursing. and that was ok. It was all I could picture in his first few days in the NICU. It haunts me. Looking back, I picture him laying flat on that table under the hot lights. Cords everywhere. Accidentally poisoned. It hurts.

He needed oxygen because he had problems breathing with the medication. He could hardly lift his head. When they found they had made a mistake, they took the lines out and took him off the medication. His heart began to beat so fast, he needed a different medicine administered through his head so it could quickly reach his heart. He was given more oxygen. His little body moving abruptly.

On Thursday, it's so much more than an appointment. This happened. It really did. It will be hard to see his doctor again.

I've been praying for the strength to speak to his doctor and say all the things I've been wanting to say through this entire process. I'd stare out the window as he spoke to us before. Never making eye contact. Such a fragile state. I tried to process everything in shock. Our main goal was getting him out of the hospital and home with us. It was hard to sort our thoughts. It was hard to grasp what was really happening.

On Thursday, I want to be respectful but honest in every way. I hope his doctor is the same. It's so important. We may never hear, "we're sorry." That's just the way it goes. but he's alive and growing and well. We need to keep moving forward. What good will come out of staying in the same place? It's ok to remember. It's ok to not forget. But there is no point at staying angry.

A part of me will forever be changed because of this experience. Just like every experience we have in life continues to mold and change our hearts in all kinds of different ways. I've had bad experiences carve some seriously good love and understanding in me that would've never been there had everything always been easy and good. I feel grateful for that. Perhaps some of those past experiences in my life have helped me find forgiveness at this time when I have almost felt too angry to forgive.

Moving on.

It's Autumn in NY!

This outfit used to belong to daddy.

Fall is probably the best time of the year for park days. No snow, no mud, no blistering hot slides and sweat.

I wish we could just push all the world's problems aside and settle for a big bowl of peanut butter crunch together.

Moo and Matt came by last weekend to help us patch up some holes that have needed attention for a while now. I feel grateful for our little home.

Cornmeal dough and Beethoven.


If only it were always this cute to have a double chin. I love.

Chittenango Falls.

No matter how many times we come here, they never tire of the maps.

Making fall leaves from food coloring and coffee filters.

Our Monarch caterpillar. They are every where this year. He currently has a gold-spotted chrysalis.

See it? Incredible.

Beak and Skiff with the Irvines.

Can you guess my favorite color?

Josie is not very impressed by the big tire.

Blurry but too cute to not share.

These babies are being transformed into apple butter, apple crisp and apple pie.

The final three months of the year are upon us.

See you in October.

xoxo, Jessie

Tuesday, September 16, 2014

God has a face like the sun.

Our latest happenings. Captured by my camera and iphone

Eli met Grandpa

Grandma Diane too.

Eli had his first taste of "solid" food.

We spent some time at the NY state fair.

Liam took the darts and slowly threw each one to the ground. That'll be 5 dollars, please.

The middle aged lady at the end beat the plethora of 10 and under kids playing against her. I only half-judged her as she proudly reached for her stuffed Hello Kitty prize.

Eli had his dedication at church. (cellphone pictures by Amy and Aimee, I believe)

Liam was a bit... "antsy"

Pleading with Liam.. "I promise you can watch the car movie when we are done."

We had family and friends share the occasion with us. It was a wonderful Sunday.

Compliments to the chef!

Every now and then, Josh surprises Josie with gum next to her pillow. I've always thought it was a sweet daddy-daughter thing.

Eli enjoyed watching the bigger kids swim outside this summer.

The kids are finishing up Soccer for the season.

Swinging after Soccer.

The last fire of summer.

A couple weeks ago, a neighbor set out a bunch of free garage sale items that didn't sell. The kids brought all sorts of things back. -From buckets of golf balls to artificial plants. They even managed to drag an old desk home.

I was excited about this. A sled for Eli.

They were so happy about the free sale, I felt bad to stop the flow of musty smelling nicknacks.

I had Josh take this picture of the kids and I. Something I always want to remember. Shopping with our whole crew. Back to school shopping with our homeschoolers.

The days here have grown more chilly. Especially in the morning. Josh has a small countertop heater blowing warm air while we have breakfast. Cooking and baking is such a welcoming hobby this time of year. Stripping off hoodies as the oven warms the kitchen. I love.

Ashton and Josie began school the day after Labor day.

Ashton has his shirt off so frequently these days, we call him Matthew Mcconaughey.

fine motor skills.

All about me collages.

Roy G. Biv

Handprint trees for the seasons

Our rainy homeschool picnic. First of many, I hope.

We made self portraits with our rainbow-colored findings.

Our cloud experiment. Fill a glass with shaving crème or gel and drop food coloring to add "moisture." When your cloud is filled with too much moisture, it rains.

A homemade weather vane to document the direction of the wind and its strength.

My bug collectors.

Seen from the window...

The return of room-sized blanket forts.

Seen inside...

Ashton had another trip to Urgent care on Sunday. This boy is seriously allergic to dogs. He walked out with a nebulizer and an inhaler this time.

A picture from last night that perfectly explains this crazy, busy, fulfilling life of mine right now. -Cheers to the day after midnight. Decaf coffee in hand. Nursing baby. Goodnight.

See you soon.

xoxo, Jessie