Tuesday, March 31, 2015

What I Learned From a Three Year Old

Miles' diagnosis of Down Syndrome at birth caught us by surprise. Surprise perhaps, was an understatement.  Among all the fear, sadness, and grieving of the dreams and expectations we originally had for our second child, one person immediately saw hope.  Nolan's eyes never shed a tear, rather gleamed with pride and glory of seeing his little brother for the very first time.  He didn't see a diagnosis.  Nolan saw his baby brother. His future partner in crime.  His lifetime best friend.

In those first moments, I feared all the things they may be wouldn't get to experience together as brothers.  I focused on the "won'ts, can'ts, shouldn'ts, could'ves."  In retrospect, it took a three year old to teach me the "wills, cans, coulds, and shoulds" of a brotherhood.  With or without a diagnosis, brothers teach one other, learn together, and live a life full of happiness, challenges, triumphs, fights, boogers, messes, and everything in between.

One year later, Nolan is a typical four year old who has heard the term Down Syndrome, knows his brother goes to therapy, and knows he wears blue glasses to help him see better.  He's more concerned with the toys Miles is trying to steal or chew on, is overly cautious of his little brother's super gross reflux capabilities, and other typical baby "aromas" he produces.

When Miles was born, his eyes begged us to love him and cherish him, even though he wasn't what we expected.  His older brother expected him all along, and knew just what to do and say upon being promoted in his new brotherly role.  Sometimes superheros don't wear capes, don't fly, and don't always save the world.  But they can help save a Mommy's heart, and soar in just when they're needed the most.

Monday, March 30, 2015

Miles Surgery...Round 2.

Miles is currently in surgery. Two minor procedures, and also very common, but risky considering his cardiac history. He's having surgery to explore and find a missing testis and bring it down. (Common among all boys, not just kids with DS.) Also, he's had some residual, random fluid in his ears the last few months.  Although his hearing tests have been decent, and he hasn't had any ear infections, his ENT thought it was best to get a good look in his ears, clean them out, and decide in the OR if he should get a set of tubes.  Since he was going to be put out anyway, it was best to coordinate both surgeons and get two birds with one stone.

Although it's common for kids with DS to get tubes (smaller ear canals, more ear infections, excess fluid, etc.), I didn't want him to get them just because of his Trisomy diagnosis.  BUT, since his fluid has been lingering for a few months, I wasn't going to mess around with a simple, non-invasive procedure like tube insertion.  (Nolan has had two sets due to multiple infections!) We didn't want any fluid to impact his hearing, ever.  His ENT said that his canals are VERY SMALL, because of his age and his diagnosis. So, with that, he's getting a set of titanium tubes, the smallest they have. These don't stay in as long, 6-9 months, but that's fine. If/when he needs them again, he'll just get the simple gas to sleep for 10 minutes and have them put back in.

Even though it feels like yesterday we were here and having open heart surgery, it was harder to say goodbye to him today at the "kissing corner."  Our love for him has grown exponentially, and he's less of a baby now and more of a our little guy.  He's aware of what's around him, playful, mobile, and has a personality.  When we see him next, he'll be groggy, maybe sad and uncomfortable, and "more work." More work as in, consoling, entertaining, etc.  Last time he was put under, he was sedated for a day or two and we had to sit back and wait and watch.  More work as in...more work for us emotionally I think.

Today we knew exactly where to park, where to get a badge, what floor to go to (ha..although I went to the third floor, cardiac ICU out of habit, instead of third floor surgical!).  The waiting room is the same..doctors in and out, talking to parents, parents and families waiting, some crying, most anxious.  Ryan's taking  a nap (ha, I know...people wonder how he can do that when his kid is in surgery, but I guess he's so confident and faithful, that a nap will do! And he's exhausted.)

Right now we wait, and pray, and drink coffee. :)  We pray that he doesn't require any intervention for pulmonary hypertension, and he is able to come out of sedation and the breathing machine okay.  This is the prayer for all parents here, but with his history, it's extremely risky. Risky enough that his Superhero cardiologist wanted a cardiac anesthesiologist to serve him.  We're sure things will go fine, because that's exactly what's supposed to happen.  He wore his Superman shirt and socks today, of course.
Regardless of not eating any solids this morning, and having his last bottle at 7:30 AM, this kid is a trooper. They didn't even give him any "pre surgery relaxing drugs" to get him chilled out.  

Waiting with Mommy before pre-op.  Ryan came about 11:30 from work.

Saturday, February 28, 2015

Miles' First Birthday Party!

Our sweet boy is ALMOST ONE! Can you believe it?  He officially turns one next Tuesday on March 3rd.  Today we celebrated Miles' first birthday with family and friends in Eau Claire. Of course it was "Superhero" themed as that theme has stuck with him from day one.  We've all discovered our extra super powers and strength through this journey of raising a child with an extra 21st super chromosome.

Ryan put together a beautiful picture slide show of Miles' first year, which we'll share in a few days. By the time it came to cake, Miles was super tired and didn't really want anything to do with it. We figured we'd have a few more times to let him enjoy a treat over the next few days anyway, so he had a bottle and gladly took a nap.  

 More blog posts next week as we reflect on his first year of life and all the trials and triumphs that have come with it.  Miles was fearfully and wonderfully made with specific purpose for this life.  Ryan and I are the lucky ones who get to be his parents and show him the world, and share him with the world. Enjoy a peek into his first birthday party!

 Captain America fruit tray!

 Someone was already a little wore out.

 We had POW Pineapple, Green Lantern Salad, and SUPER Veggies
 Thor's Hammers,Superman Salami, and Catwoman Crunch
 Cowabunga Cheeseballs
 Batman BBQ and Iron Man Meatballs
Also not pictured, "Lightning Lemonade," "Invisible Water, and "POP!"
 Playing with Mike's cup

 A SUPER Big Brother, whom Miles idolizes.
 Nolan has taken to caring for Miles' new Superman Bear until Miles' ready to take care of him.  Notice the bear even has glasses, just like Miles!

 And...not very interested in this (giant!) smash cake.  We saved it, and will try again another time! It was delicious though!

Tuesday, January 27, 2015

6 months Post Surgery

Today ( 28th)marks 6 months from when Miles had his open heart surgery.  Our little barely 11 pound boy,  with a heart as big as a walnut,  survived and conquered his biggest medical obstacle. After 8 days he was discharged and started to gain weight like crazy.  It's amazing what an efficient heart can do! He's probably around 19 pounds now,  and almost 11 months old!

Right now he:
-Eats all kinds of baby food
-Drinks from a straw cup and practices on real cups!
-uses his pincer grasp to pick up puffs, melts, and other snacks
-gums almost anything we put in his mouth
-has no teeth (kids with DS get teeth later)
-pivots,reaches, turns, and does a sort- of army crawl

-loves bath time (swimming lessons this summer! )

-loves when we sing and dance with him

-babbles like crazy
-working on waving and clapping. .he's done them both a few times for others,  but I've yet to see it myself!
-gladly pulls hair,  earrings
-gives kisses...aka, tries to suck on chins
-loves giving hugs and snuggles
-sits beautifully, and can catch himself if falls

Here are a few pictures from surgery and then recently!

Tuesday, December 23, 2014

Miles Makes ABC News Article Online!

More to come. .but here's the link!