Stories From the Heart: A Mother’s Day Tribute (link to view)

Here it is – Our family’s television debut!! Eli’s story is the first one (at 1:28). Additional parts of our interview are shown throughout the program (at 31:19, 37:22, & 54:45). The whole show is heartwarming and each story tells why Seattle Children’s is so special. If you have the time, please watch the whole thing. Donations to the hospital are always accepted and greatly appreciated. You can donate here. Our family thanks you!

❤️❤️Watch Stories From the Heart: A Mother’s Day Tribute HERE❤️❤️

Also, busses have been spotted all over Western Washington with Eli’s sweet picture. We saw our first one a few days ago. It. Was. Surreal.

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I can’t say it enough – Thank you! Thank you for your continued support of our family. Thank you for loving our boys. ❤️

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Coming soon to your television screen – Eli!

Happy Spring!

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It’s been a busy month around here. Seattle Children’s has just fallen in love with our boy. They recently contacted me to ask if we’d share our story on an upcoming television special. Yes, television! I hesitated for a second. It’s scary putting ourselves, my family, out there. But if I can help the hospital that has literally saved my child’s life numerous times, I will. Plus, I love telling Eli’s story. We met the producer and interviewer a few weeks ago. We filmed at the hospital and at our house. The whole experience was surreal. We saw a commercial for the program with our son’s picture. I cried with excitement. Eli takes it all in stride.

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The show, “Stories From the Heart: A Mother’s Day Special”, airs this Saturday, May 3rd, at 8pm on KOMO Channel 4 (the Western Washington ABC affiliate). Please watch and, if you can, please donate in honor of a mother you know, love, or admire. For each donation of $10 or more, a card will be sent to the mom telling them a donation to Children’s has been made in their name. What a wonderful Mother’s Day gift! For those of you who are not local and cannot watch, a link will be provided after the broadcast. I will share that here when it becomes available.

Children’s has chosen our family as the face of their uncompensated care donation campaign. They are trying to change people’s misconceptions about who that fund helps. Most families, like us, have insurance. But, co-pays and out of pocket expenses, quickly add up when your child is sick. Many times, the parents have to take time off of work. Bills do not stop coming. You still have to pay your mortgage, electric bill, etc. The uncompensated care fund helps cover the costs of medical expenses for your child. The very last thing you want to worry about when your child is hospitalized is how you are going to pay for it. Last year, when we first applied for help, I figured we’d be denied. When I was filling Eli’s prescription for pre-surgical soap and ointment prior to his heart surgery, the pharmacy clerk told me I didn’t owe anything because we’re covered through Children’s. I was confused. I called the financial department to clarify. When the lady on the other end told me all previous bills and any future bills would be covered by the uncompensated care fund, I cried. I promised her I would one day give back any way I could.

So, this is our way of giving back. You never know if you will one day be in need of Children’s services. I never thought we would. I listened to the telethons on the radio while driving into my hotel sales job. I watched the television specials, crying along with the families as they talked about heartbreak, loss, hope, and cures. I donated each time, NEVER thinking we would one day be recipients instead of donors. Life changes. Circumstances change. It could happen to you.

In other news, Eli celebrated being one year seizure free. I am filled with such gratitude that his battle with Infantile Spasms is over. I admit, I still wince when I see any unusual movement from him, but the anxiety is dwindling. I continue to pray that he stays seizure free forever. There are so many other children that aren’t as lucky.

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He turned 18 months old (a year and a half!) a few days ago. They say time flies when you’re having fun, and lately, we’ve been having a lot of fun!

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Thank you all for supporting our family. This Saturday, we’d love if you joined us in celebrating our journey. Please watch the special and donate to Children’s if you can. Eli, Cody, and their grateful parents thank you. ❤️

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Celebrating our little superstar

Today, 3-21, is World Down Syndrome Day! Get it? People with Down syndrome have 3 copies of the 21st chromosome (instead of 2). Today was a day to spread awareness and celebrate those with that “something extra”. Two years ago, when we first found out Eli had Down syndrome, we were terrified. Our fears were based on so many unknowns. Turns out, there was NOTHING to be afraid of. Our son is amazing and smart and strong and perfectly how he was intended to be. I hope over the past year(s), he has shown you that people with Down syndrome really are more alike than different. Through Eli, I hope to spread awareness. In honor of Eli, please spread love and acceptance, today and always.

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I also wanted to share a couple of exciting things happening in Eli’s world.

A few months ago, Seattle Children’s Hospital reached out to me because they wanted to do a story on Eli. Once the PR department “met” and got to know Eli, they decided he was so cute, and his story so inspiring, they wanted to feature him (and our family) in their spring fundraising campaign. This campaign will consist of direct mailers, full page ads in various publications, ads on the side of a bus (!!), and a possible billboard. How cool is that?!?

A couple of weeks ago, we went to the hospital for a full blown photo shoot. What an experience! We were treated like real models (who, I’ve now realized, have a very tough job!). Chuck even wore make up (totally not by choice)! Not surprisingly, Eli was a happy and willing participant. They were hoping to get shots of our entire family, but Cody had different ideas. He was too busy discussing important nuisances like yellow cheese versus white cheese with anybody who would listen. He did have fun playing assistant to the photographer, for a few minutes.

Today, Chuck found one of the ads in the Puget Sound Business Journals he was delivering. He sent me this picture of the ad.

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I used to read the PSBJ when I was a sales person. Never, in a million years, did I think my child and I would one day have our picture in one. A very proud and surreal moment for this mama!

Also, in honor of World Down Syndrome Day today, Eli’s story was featured on Seattle Children’s website, Facebook page, and Twitter. You can read it here.

Here’s what they said about the story when sharing it:
While pregnant, Melanie Harrington was shocked to learn that her baby had Down syndrome. But that was not all. At less than 2 weeks old, baby Eli had signs of heart failure – a diagnoses requiring heart surgery. At a year, he needed surgery for craniosynostosis. Through all of this, Melanie went from feelings of grief to gratitude, and in honor of World Down Syndrome Day, she shares how the emotional journey enriched her life. Read and share this mother’s touching story.”

I am not trying to brag or boast. I am just so VERY PROUD of our boy (and I knew you would be too!). I was once so scared of what Down syndrome would mean in our lives. Eli has taught me that there was never anything to fear – but there is oh so much to be gained.

Happy World Down Syndrome Day!!
💙💛💙💛💙💛💙💛💙💛💙💛

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Eli is 4 months old!

Today Eli is 4 months old! Where has the time gone? It’s funny – some days it feels like it was just yesterday he was born. Other days, it feels like a lifetime ago. What this little guy has had to endure in his short life is amazing. The strength in which he has overcome everything is inspiring.
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Eli currently weighs 11 pounds, 6 ounces. He is finally out of newborn sized clothes and diapers! I think he even has a little roll on his, dare I call them, chubby, thighs! And he’s getting a little Buddah belly that makes him even more adorable.
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Last week Eli received a special stuffed animal from his Nana. It’s called a Healing Helper. This wonderful company takes a chosen stuffed animal (they have ones for sale or you can send in one of your own), and performs “surgery” on it. Eli’s stuffed animal, a frog we named Corbin after his roommate at Seattle Children’s, has a “scar” (zipper) down his chest with a mended heart (with his name on it) inside. We chose a frog because the acronym for FROG, Fully Rely On God, has become sort of a family motto of ours throughout this journey. We thought it’d be a fitting choice for a lifelong buddy for our special boy. I have a feeling Eli will cherish Corbin the frog for many years to come! Check out their website: www.HealingHelpers147.com

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And finally – after 3 1/2 months – Cody asked to hold Eli! He’s really starting to warm up to the idea of being a big brother. Moments like these are what make me the happiest mommy in the world.20130225-235352.jpg

Post surgery update – Day 4 (Going Home!!!)

Our wonder boy is heading HOME! Just 4 days post open heart surgery. The nurses are sad to see him go but we are so excited to leave. We have had the best care at Seattle Children’s Hospital and are so thankful to the surgeons, doctors, nurses, and staff who cared for our little boy but there truly is no place like home. Thank you for your continued prayers, love and support. Reading your messages helped this mama get through the scariest time of our lives. xoxo

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Post surgery update – Days 2 & 3

Eli’s doing great! He’s no longer on oxygen or air of any kind. His chest tube was removed (that looked painful!) yesterday. His IV line was removed today. The only wires he has on still are a pulse/oxygen sensor and heart rate/respiratory rate monitor! His feedings continue to go smoothly (and quickly!). In general, he’s a stud. Every nurse has fallen in love with him and each one wishes every patient was like him (except the nurse who had the pleasure of him pooping in her hand – she probably wishes that moment never happened!). We are getting ready to go on our first walk around the hospital. We may even stop by the playroom so big brother can play. The cardiologist told us we will probably be discharged tomorrow. To that, Eli gave him a big smile!

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Thank you all for your prayers. I’ve heard of classrooms praying for Eli. Churches I’ve never attended. Prayer groups, strangers, doctors, and nurses. We have been so truly blessed that our perfect little boy has been lifted up in prayer so profoundly. God bless all of you!
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Post surgery update – DAY 1

Overnight, Eli was taken off the CPAP and put on high flow oxygen. The goal for the day is to try and get him off all oxygen, remove his pacemaker wires, take out his catheter, (still needs the chest tube one more day) and…leave the CICU!!! Woo hoo!!! We are going to try and feed him soon too. Pre-surgery, that was our biggest challenge. Hoping post-surgery he eats like a champ. Chuck and I did go home last night to get some rest. When we arrived at the hospital this morning Eli was a bit restless. I asked to hold him. BEST. MOMENT. EVER. This mommy was in heaven. So thankful for the amazing nurses that work here. They include us in every step of their plan. They call Eli their star patient (and most say he’s the cutest!). Today should be a busy day, plus big brother is coming for a visit. Hoping Eli is more alert and stays comfortable. Continued prayers and good thoughts are appreciated!!!

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Eli’s out of surgery

After less than 2 hours, Eli is out of surgery! His surgeon said all went well. He’s still on the ventilator but the general consensus is that he’ll be off that sometime this afternoon/evening. Chuck and I were able to see him. He’s sleeping soundly and looks like an angel. He has the room with the best view in the hospital – of course he does, he’s a ROCKSTAR!

Praise The Lord!!! Please keep praying for a smooth recovery.

I’ll update more later. For now, I’m going to go stare at my amazing son.

Just another pretty great Sunday

So we’re still challenged to get out littlest guy to eat. He just tuckers out so quickly. It’s sad. We have an appointment with the cardiologist on Wednesday. She was supposed to present his case to the cardiac surgery team to see if we could move forward with surgery. She was thinking the answer would be yes as he isn’t gaining weight anymore. The other option is the feeding tube.

Thankfully, Eli’s spirits are still up and he’s quite playful – when he’s awake! It’s hard to be disappointed that he won’t eat when he gives me this smile!

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He did hit his minimum fluid intake yesterday – thanks to the persistence of my awesome hubby! We’re back to needing to get up once or twice in the middle of the night (he started sleeping through the night at one month old!) but whatever it takes we’ll do.

In other good, albeit unrelated news, Eli witnessed his first Seahawks playoff win! He really was very interested in the tv. It could’ve been more that he was interested in what his mommy and daddy were yelling at for the first quarter of the game. Luckily, we have perfected our kid friendly cursing and Cody didn’t learn any new words! Although, he did say “son of a biscuit” (I say that) which cracked me up!
Looks like we may have another diehard football fan in the Harrington fam!

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GO SEAHAWKS!!!