Sunday, March 23, 2014

Approximately 260

260 powerful, life changing and loving days spent with you by our side. Looking back the days feel short and time feels like its swirling around us threatening to sweep up our days faster than we have time to realize they’re gone. I used to think of time as the enemy in the days following our understanding of your diagnosis. They felt long. Hours felt like days and days felt like months. I was racing to the day when I could meet you wishing time would just fast forward. But in the days leading up to your surgeries I wanted nothing more than for time to slow down. Please God just slow down. I would beg, Just one more hour... just one more day.
I’ve learned to not mourn the days of the past, I’ve learned to not race backwards grabbing at time I wish I had back because that only takes away from the time I’ve been given with you now. And I am so thankful that I’ve been entrusted with 260 days with you. You see, I’ll only ever be given today. I can’t change yesterday and tomorrow is never promised. When I begin to think too far into the future overwhelming myself with the thought of more surgeries and what those days look like I’m robbing myself of the joy I could be experiencing with you now. I begin to create imaginary horrific scenario’s in my mind when I try and take on more than today, but when I realize all I’m being asked to handle is today I begin to settle back down. Time has been nothing more than a miracle for us. Time has allowed me to grow, time has allowed for YOU to grow and heal, time has allowed me to store away precious memories with you in my mind and while some may be reaching for those moments back I’m happy to say I’ve ever had that time at all. In 260 days you’ve changed me, you’ve made me become better; become stronger, more compassionate and patient. Thank you, sweet boy.

Thursday, March 20, 2014

Worth My Weight in NO

 Height: 30.5"

Weight: 24.1 lbs

Age: 18 mos

Days in CICU: 90

Drugs ingested (non-controlled substances): 25

Drugs ingested (controlled substances): 3

Open Heart Surgeries: 2

Minutes of CPR: 45

Days on ECMO: 6

Days in hospital: 195

Cardioversions: 5

Echocardiograms: 50+

Beads of Courage (length by feet): 35

Days being at home: 365

Days of pure joy: 250

Steps taken: 1000+

Kisses given: 100

Kisses received: 2,000,000

Books read: 100+

Pets: 2

Delighted by: All


*Note

Survivors may be more than the sum of their parts.

Thursday, March 13, 2014

"Is it here yet?"

Just like everyone in the midwest and northeast of the US, we are desperate for spring! We anxiously await warmer temperatures, walks to the park and, most of all, the end of flu season.



While the terrible over-snowing, extreme-freezing winter has affected most of the entire country, we feel for the fellow high-risk folks the most! Like most high-risk and trached families, flu season means becoming a hermit - from October to April, we barely leave our home, trying to keep nasty infections at bay. Because Judah is trached, a simple cold finds its way directly into his lungs, and his cardiac issues mean several weeks at best to completely overcome any sickness. At the beginning of the winter season, I had a list of creative plans to keep our "hibernation" fun. I turned an unused corner of the room into a reading nook. I transformed a boring hallway into an enchanted forest. Gramma and Grampa even provided a trike that has been hours of indoor fun for Judah.

But now it's time to GO OUTSIDE!!!! Judah spends a lot of time begging to be outdoors, and I am so proud that he seems to love to be out in nature so much. But now is that tenuous time - flu season has not yet completely passed, and the temperatures are not yet temperate.


We will be patient like everyone else in almost the entire country, and grab every semi-nice day that comes our way. Spring WILL COME and we will be ready!!!

Sunday, March 9, 2014

Weather resistant.


These last few weeks have not been without their challenges in the Jordan home. Elliott caught a bug two weeks ago and ended up in the hospital overnight. Since then the weight of having a heart baby at home has really, really weighed on me.

Our winter in Southern California is pretty non-existent. A bit of sunshine every day, a lot of drought. For months and months we've lived life at home feeling somewhat, dare I say it, normal. Somehow we've adjusted to having a heart baby and another baby at home and have managed to dive into our routine as (what felt like) a normal, healthy, family of four. Elliott had a terrible cold the day after his sister was born in October and had to stay in the hospital overnight, but once the cold was gone we resumed with life. Same with the cold in January. A few hours in the ER, a breathing treatment and a steroid prescription were all we needed to get sent home that very day. But this last cold, the February cold as I call it, was different. A week or so before I felt on edge all the time. A heaviness weighed in my heart. I couldn't shake the fact that something felt not right, and before I knew it we were calling an ambulance because Elliott couldn't breathe.

Our life is not all sunshine. I try to remain upbeat, but sometimes, staying upbeat drives me crazy. Too many times I try to smile through it and the more I do the more I feel like my mind is going.

Last weekend it rained and you know what? It felt good. It felt good to see the rain soak the dry ground, bringing life to the parched pavement and dying Spring flowers. The gray skies were drenched in honesty, and I could relate to it. We are not always sunshine. We are the wet, cold truth of it. The grittiness of having a heart baby at home is not something we hide; sometimes pouring our heart out on the cold, dry ground is just what the doctor ordered. I took this photo last Monday, the day after the rain came down. Amazed, looking at my little guy and knowing what he's been through, I was surely thankful for rain.

Sunday, March 2, 2014

Tangible memories

I’ve always been the sentimental type and I can remember dates and birthdays like nobody’s business. I keep cards, notes, and little trinkets from various different events in my life. I still have birthday cards from my 13th birthday, wedding cards, and movie ticket stubs from my first date with my husband. So naturally I had a box going from the moment I found out I was pregnant with Elliott. It started small, beginning with the first pregnancy test I took, the one where my heart skipped a beat and tears flooded my eyes. Those positive lines appeared so quickly, filling my heart with a newfound love of the life growing inside. Over time it grew holding ultrasounds, the drawing of his diagnosis, videos, baby shower cards, bracelets from the birth, a small muslin blanket that he was wrapped in constantly during his newborn days and a little blue knotted hat worn after his second open heart in Boston.
After about a week of being home the shadow box for his nursery was next. The box itself was given to me by my husband for my first Mother’s Day. I wanted to keep the box simple so I only enclosed 4 things. The first, being a clay molding of his tiny newborn foot. One of my best memories in the first few days at home with him was making this. His toes would scrunch up once pressed into the clay making for an odd looking print. We laughed as we tried countless times to get it just right. Next, my baby shower invitation. That day was huge in overcoming a lot of fear-based emotions I was going through. In the weeks prior I contemplated not even having a shower because I didn’t know if he would be able to wear or use any of the items that would be gifted to us. People would tell me that it was silly and to not let that fear overwhelm me and steal my joy.

I know, I know.

The truth though? I was afraid. Right down to my very core despite what I knew, despite what I was told. The competitive side of me took over and it became a mental battle that I was determined to win. I WOULD seek joy and I would choose to live and direct my thoughts in a way that was life giving and not fear based. We decided that regardless of his diagnosis, his life was to be celebrated just like any other. He was alive and growing and perfect and I needed to allow myself to think positive thoughts about his future. The third item, tiny knitted shoes his Grandma made for him. To ease her mind during his first open heart she said she wanted to knit him something while the doctors “knit” his heart… I loved that. He wore them often in the hospital and looking at them now I can’t believe his feet were so tiny! And last was the bracelet he wore shortly after birth with the date and time he was born.
I love having these memories tucked away to reminisce on in the future.