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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Good riddance to 2013

As I sit here reflecting on the past year, I am thankful for so much. Most importantly, the health of my children. Many people take for granted that their children will be born without any challenges. We did not. We knew Eli would have a heart defect. We knew he had Down syndrome. We did not know the other obstacles he would eventually face. Last New Year’s I was so hopeful. I was anxiously awaiting Eli’s heart surgery. I was confident that my little boy would be fixed and we could get on with things. I thought that would be it. It’s actually a little unbelievable that I truly have that much more to be thankful for this year. A healthy heart, a seizure free brain, room for that brain to grow.

It’s amazing to think about all Eli, and his little body, went through this year. First, he conquered open heart surgery. What a trooper he was. Home from the hospital after 5 days. That was our first sign of how truly strong he is. Our little fighter.

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The next setback our sweet baby encountered was when he came down with Bronchiolitis. What a long week in the hospital that was. Thankfully, his smile kept us going each day.

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I don’t think I’ve ever felt lower than when Eli had Infantile Spasms. I felt so helpless. I took a video of his seizures so that I would have something to show the neurologist. You can hear me in the background telling him it’ll be ok and that mama is going to fix this. What you can’t hear is the terror I felt. I wasn’t sure I could fix it. I was so scared to lose my baby. I watched that video the other day. It was very hard to watch. For six weeks we saw the beautiful smile of our baby fade. He didn’t laugh. He was lost to a steroid haze.

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But, that’s not who Eli is today. He’s a healthy, happy boy who’s been seizure free for 8 months now. Thank The Lord.

When he was diagnosed with Craniosynostosis it rocked me to my core. I wasn’t sure I could sit by and let my baby take on any more. Why couldn’t he just catch a break? But, once again, he sailed through surgery and proved why he is so deserving of the moniker, Super Eli. He has the strength of a superhero for sure.

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Someone recently asked me what my wish for 2014 was. I answered that easily – I want Eli, and Cody, to stay healthy. No more surprises. We are a strong family but we would like a break. 2013 has been brutal in so many ways for us. I am very ready for it to be over. It’s been hard keeping it all together. We don’t have a lot of local support, outside of a select few people. It sucks, but it is what it is. Our saying in our house is, “We’re all we got, we’re all we need!”. We are only whole when all four of us are together. I pray we have more times together than apart in 2014.

There were some really great things that happened in 2013 too. Most importantly, Eli has a fixed heart, he easily (in the grand scheme of things) overcame Infantile Spasms, and successfully made it to the “other side” of skull surgery. He is currently healthy. He has continued to amaze his therapy team and doctors. He makes us so proud with each new skill he acquires and each milestone he hits. His brother also amazes us. Cody is smart, and funny, and so observant. The other day he actually noticed that my mom had different tires on her car. He asked her “What’s up with your wheels, Nana?”. She had her regular tires switched to snow tires. Our 3 year old noticed. Unbelievable. Cody is undeniably the most energetic in our house. He keeps us all on our toes and we wouldn’t want it any other way. He gives the best hugs and kisses and my favorite thing of all is when he grabs my hand and says, “Mommy, I love you. You’re my best friend.” Granted, he has many best friends but it’s still the sweetest thing on the planet to hear him say that!

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I “met” some of the most amazing people this year. People who will be friends for a lifetime. Some are friends from the Down syndrome community. Others are people I met because they too had a child (or grandchild) with Infantile Spasms. The newest friends are other cranio moms. They have children that have been through, or are going to have, cranio surgery. All these people get it. They get me. They don’t judge or question. They understand and empathize. It’s amazing the amount of support you can receive from virtual strangers online (and a few in person!). I have found solace and gained strength from these women (and their children) on many occasions.

2013 changed me. I once was a glass half empty kind of person. Now, remarkably, I’m a glass half full kind of gal. No matter the challenges in life, I try to see the positive – most times. I remind Chuck, when he’s feeling blah, all that we truly have to be thankful for. And on my bad days, he reminds me. Thankfully, our boys keep us smiling through it all – the good and the bad. They are our lights at the end of any tunnel.

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Thank you for loving our family. Best wishes for a healthy, and happy, 2014. Bring. It. On!

xoxo Melanie

Craniosynostosis, irrational fears, and a confession

Eli’s surgery is scheduled for 11:15am this Friday. I do not want to do this. I do not want to say good bye and hand my precious son to strangers. Again. And no, it is not easier because we’ve done this before. In fact, this time is harder. A lot harder. When Eli had heart surgery he was a sick baby. He didn’t eat. He struggled to breathe. We knew surgery was our only hope of fixing him. We were ready to have a healthy baby. This time, although the surgery is necessary, we do not see the detrimental effects of his craniosynostosis – yet. Besides his misshapen head (which most people don’t even notice until I point it out because it’s in the back), he shows no outward signs of being “sick”. That’s the thing about craniosynostosis. The surgery is a preventative surgery. If left untreated, the brain will stop growing because it will have nowhere to go. Obviously, if that were to happen, it would be devastating for the child developmentally. But handing our outwardly “well” baby over for a majorly invasive surgery is causing extreme anxiety for this mama. Not to mention the fact that his type of craniosynostosis, lambdoid, is extremely rare. The surgeons have done hundreds of CVR (Cranial Vault Reconstruction) operations this year alone. But when I asked how many lambdoid surgeries they’ve done this year, the reply was alarming. Eli will be their fourth. Yep. They’ve done this surgery three other times this year. That puts me at ease. Not really. Ugh. Eli is doing great. He’s hitting milestones and making strides daily. He laughs and plays and has the sweetest little personality. What if something goes catastrophically wrong and that all goes away??? I know I shouldn’t think like that but it’s hard not to. I want to stay positive but I just can’t. I. Am. Terrified.

I have a confession to make. I am afraid God is going to punish me because I once wasn’t sure I wanted Eli. When I was pregnant and we first found out our baby had Down syndrome I thought horrible thoughts. I actually wished I would have a miscarriage. Before you lambaste me and tell me how horrible I am, please understand I was scared. I had no idea what having a baby with Down syndrome would mean for my family. After I found Acceptance I regretted every negative thought I once had. I prayed for forgiveness. I lived fearfully throughout my pregnancy that I would actually miscarry. I begged God not to take my baby. Once Eli successfully made it through open heart surgery I felt relieved. I felt unburdened. And then he was diagnosed with craniosynostosis and we were told he would once again have to undergo surgery. And then the fear came back. All of those negative feelings of regret washed over me like a tidal wave. I was convinced this was all my fault. Since then, I have prayed constantly. The rational side of me does have faith that God loves me and He loves Eli and knows how much I need him. The irrational side of me is still just that, irrational.

I love my children more than anything in this world. I thank God every second of every day for choosing me as their mommy. I am forever grateful that I gained clarity and compassion on that beach back in June 2012. I felt The Lord’s presence that day and I felt it again while Eli underwent heart surgery. I pray for the same peace on Friday.

Our Eli might look different after surgery. His head shape will change. The alignment of his eyes and/or ears may change. He will have a jagged scar from ear to ear over his head. But Eli will still be Eli. He will still have a thousand watt smile and he will continue to steal the hearts of many. He is fearfully and wonderfully made. He is a child of God and he is loved more than any words could begin to describe.

Thank you all so much for your thoughts and prayers. It means so much to Chuck and I that so many people truly care about Eli and our family.

I will update this blog once we are on the “other side”. Surgery is estimated to take 5-6 hours. Eli will be away from us for about 8 hours. I will be counting down the minutes. I will miss this face. 20131003-022536.jpg

A healed heart

One day, back in May 2012, we found out Eli would be born with a heart defect. That news was heartbreaking (no pun intended). We have fretted over his heart for almost a year and a half. While I was still pregnant, we went to countless ultrasounds where we would stare at his heart and multiple echocardiograms where they would tell us what was wrong with it. He went into heart failure at 2 weeks old and had open heart surgery at just shy of 3 months old. Recently, it was noted that he had some elevated pulmonary pressure. Because of this, we met with the anesthesiologist to make sure he was even a candidate to undergo another surgery (for craniosynostosis). He suggested Eli have another echocardiogram closer to the surgery date (3 weeks away now – ugh) to see what happens to those pressures. Today, Eli had that echo. And the results were phenomenal! His cardiologist said his heart looks PERFECT. He is officially cleared for surgery and cardiology will not need to see him again for ONE YEAR! No more worrying about Eli’s heart.
It. Is. Healed.
Amen!

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6 months

Today it’s been 6 months since we handed our precious baby over to surgeons to fix his failing heart. What a difference 6 months makes! The days leading up to open heart surgery were filled with frustration and fear. These days are filled with laughter and learning. It’s amazing to look at Eli and revel at how far he has come. Today his heart is working perfectly, his scar is barely noticeable, and his smile is surely contagious. He truly is mommy’s little hero. ❤

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An Eli update

I haven’t fallen off the face of the earth. I’m still here! I took a little break from blogging to just enjoy life and my little family. After Eli’s most recent diagnosis, some pretty raw emotions took over. Disappointment, sadness, disbelief. I didn’t want to burden this blog and my “readers”. I needed some time to decompress. I took a wonderful vacation to California with my mom and the boys. Just the four of us road tripping. It was a good time! Eli met lots of family that he hadn’t met before. I think it’s safe to say they all fell in love with him (who doesn’t?). I’ll post some adorably cute pics of that trip, 4th of July, and other summer stuff soon!

Today we had a meeting with the craniofacial team at Children’s. We are very confident Eli will be in the best hands for his craniosynostosis surgery. The official name of the surgery is Cranial Vault Reconstruction (CVR). Warning: A somewhat graphic description to follow
They will cut his skull in a zig zag pattern from ear to ear (so when the hair grows back the scar becomes less noticeable). The skull bone is then cut to release the fused suture. The back of his skull (where the lambdoid suture is) will be removed and the plastic surgeon will re-shape that piece making his head round (it is currently a rhombus shape). The skull will then be stabilized with dissolvable plates and screws.The neurosurgeon will assist and make sure the cuts near the brain are done safely and that the dura (protectant layer of the brain) stays intact.

Jokingly I think of Eli to be a little like Humpty Dumpty – except he will be put back together again. Seriously though, we’re having a tough time knowing this surgery is imminent. People say to us all the time, This should be nothing compared to heart surgery – actually, to us it feels worse. He was a very sick child when he went in for his heart repair. We were looking forward to having a healthy infant who was ready to thrive. Now, Eli is a happy baby who plays and engages with us. He shows no outward signs of discomfort. He is developmentally on track (mostly). But, if he doesn’t have the surgery all of that will change.

The surgery scheduler should call with the surgery date by the end of the week. It most likely won’t be until September or October. Please God, I do not want to celebrate his 1st birthday in the hospital. He deserves better than that.

So now we wait. In the meantime, he keeps on loving and laughing and living life to the fullest. I wish the same for all of you.

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Finally living life

A week ago I was handing my precious son over to strangers. Strangers that I had entrusted with his life. It was the most terrifying thing I have ever had to do. What is interesting though is what happened afterwards. A calmness came over me. Yes, physically I had handed Eli over to the nurses who would care for him during surgery. But spiritually, I had handed him over to God. This blog has been a spiritual journey for me. I have felt many emotions towards God. I have questioned my faith often. Yet, when I kissed my son as he lay in the arms of a stranger last Tuesday, I was filled with nothing but faith. Pure, genuine faith. I’ve come a long way.

Eli is doing wonderfully at home. He has so much more energy now that he’s not expelling it all on just breathing. He smiles constantly and has become quite the chatterbox. He loves to play and wiggle. Tomorrow he has a follow up appointment at the cardiologist. I am expecting nothing but great news.

It is kind of surreal to be home with Eli’s heart surgery behind us. We had fully prepared to be in the hospital for 3 weeks (we were told he’d most likely be there for 2-3 weeks). Back in August, we found out Eli did have a heart defect. At first, we thought the defect was much worse (Disillusioned – August 1, 2012). Thankfully, a few days later, the defect was confirmed to just be a VSD (Great News! – August 4, 2012). Although a hole in the heart was welcome news compared to what we thought the defect was, it is still very scary to know your baby will be born with a heart that is not 100% functional. We tried to educate ourselves as much as possible about what could happen and what was likely to happen. Eli presented with heart failure within a week of birth. That was scary. Our main goal became to help him gain weight so he could be at a healthy weight to have heart surgery. When gaining weight became too challenging for him (and for us!) we knew it was time to go forward with the surgery. At that point, everyone was exhausted. We never had the opportunity to just enjoy our baby. It was all about feeding him and checking his color and noting how many breaths per minute he was breathing. When we came home from the hospital on Saturday I half expected to see the ‘It’s a Boy!’ banners. I felt like we were just bringing our son home for the first time.

Every year, we will celebrate Eli’s birthday then three months later we’ll celebrate his ‘Heart Day’. We’ll celebrate the day he entered this world and then we’ll celebrate the day he got to live in this world. Our son is truly living now. You can hear it in his joyous cooing. You see it in the vigor in which he kicks his feet. Today, I may have even heard a little giggle. All along this journey I’ve said that Eli is teaching us about living life. Finally, we get to watch him do just that.

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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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