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

One month post op and a donation in honor of a special one year old

It’s been a month since Eli’s surgery. He’s doing great! Honestly, besides the scar across his head, you’d never know he had a major surgery so recently. He amazes me. I love this kid!

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He’s rocking that haircut and the scar!

In honor of Eli’s 1st Birthday we asked party guests to bring donations for Cranio Care Bears, an amazing organization that supplies care packages and support to families of children who are undergoing surgery. One of the founders, Shelby Davidson, sat with Chuck and I while we waited for Eli to get out of surgery. Her presence was a Godsend and I am lucky to now call her a friend. Here is Eli with the donation pile (31 pairs of pajamas, tons of baby toys, toiletries for parents, and some cute stuffed animals!).

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Today, Eli and I were honored to deliver the donated items to Shelby when we went out to dinner with her and a few of the other cranio moms and babies. Over the last year and a half, I’ve been fortunate to make so many new friends – all because of Eli! There’s the Down syndrome mommies (we call ourselves Rockin’ Moms cause our kids ROCK their extra chromosome). And the heart mommies. And the moms of children who have/had Infantile Spasms. And now the Cranio mamas. (Not to mention the therapists and doctors and nurses we’ve met and friended along this journey!). Our boy and all his extras have led us to some really great people. Friends for a lifetime who truly get it. 💛

Pumpkin patch pictures

I love fall! The changing colors of the leaves. The cool, crispness in the air. Football. Apple cider. Candy corn. The pumpkin patch.

This year I was certain we’d have to get our pumpkins from the grocery store as I wasn’t sure how Eli’s recovery would go. Well, I should’ve known better than to doubt our Superbaby. He’s doing great! Seriously, besides the gigantic scar across his head, you’d never know he just had major surgery. He is amazing. So, we went to the pumpkin patch. And I must say (although I am very biased) we had the cutest pumpkins in the patch!

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Wouldn’t you agree? ❤️

Update on Eli

I’m sorry I have not written sooner to update on Eli’s surgery. As you can imagine, the days blur into nights and by the time I have a moment to myself I am too tired to think. Tonight, I am forcing myself to stay awake. Thank you for your patience. So, here goes…

October 4 – Surgery Day
What a long, stress filled day. Surgery was scheduled for 11:15am. We checked in at 10am. My mom and sister, who both accompanied us to the hospital, said their goodbyes then we headed to the pre-op area.

While waiting to meet with the surgeons, we took the opportunity to take pictures and snuggle our little Superman.

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My nerves were a mess. I did not want to go through with saying good bye. I was so scared. I was filled with so many doubts and negative thoughts. But, the time eventually came and I had to. He happily went into the arms of one of the anesthesiologists and off they went. We cried and prayed and let go of the fear and the doubt and the worry. It was in God’s hands now. Let go and let God.

We found my mom and sister in the cafeteria. They were sitting with Shelby, one of the founders of an organization called Cranio Care Bears. They provide care packages to children (and their families) who are undergoing cranio surgery. She is local and wanted to drop our care package off personally. Not only did she fill Eli’s bag with wonderfully comforting items, she stayed with us the entire time. She was there from the very beginning to the very end (when we finally got to see him). Her heart is large and her commitment is amazing. It was such a nice distraction having her there. We instantly “clicked”. She was so easy to talk to! We talked about our families and our faith. We discussed life and some things Chuck wishes he wasn’t privy too (lol!). I was able to ask her questions about the surgery and what to expect which reassured me when my mind would start to wander into worry. I can honestly say, I’ve made a lifelong friend.

After 4 1/2 hours, we finally received the page that Eli was out of surgery and all went well. The surgeons came out and spoke with us. The neurosurgeon (Dr. Lee) said the surgery was “uneventful” (which is a good thing to hear when it comes to surgery!). Dr. Birgfeld (plastic surgeon) said his head shape was markedly improved. We couldn’t wait to see him! After about an hour they called us back to the ICU. I practically ran to his room. When I got to the door I stopped short in my tracks. The room he was in was the EXACT SAME room he was in after heart surgery. And he was in the EXACT SAME bed (it was a double room)! What are the chances? He looked good. Better than I expected actually. He was pale (needed a blood transfusion during surgery) and he was still in an anesthesia induced deep sleep. But he looked so peaceful. So angelic. We hung up his Superman cape and prayer chain (from Cranio Care Bears!). One of the chains had the following quote, “Let go and let God”. This time, I took it as a directive from The Lord himself.

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Eli never fully “woke up” until the following morning. The nurse said I could hold him. I couldn’t wait! Once he was safely in my arms, I started to cry tears of relief. The hardest part was over. Now it was time to heal. While he was in my arms (I wasn’t letting him go!) they told us he was ready to be transferred out of the ICU. 12 hours post invasive skull surgery and we were already on our way! When they put him in bed to transfer him, he sat up and smiled! That smile told me everything was going to be ok.

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October 5 – October 8: Post Op, Days 1-4 We settled into our room and our routine. We met the nurses, sat by as they took vitals, helped administer medicine, watched him sleep, held him, played with him, met with the doctors, drank coffee, watched football (on a very tiny hospital tv!), visited with people who came to see us, cried when Cody would leave, ate dinner, went to sleep (in Eli’s room on a semi-comfortable pull out vinyl sofa), woke up every 4 hours when the nurses would come in. Repeat. Being in the hospital can be a little like Groundhog’s Day (the movie) – same thing, different day.

The only challenge we had this time was getting Eli to eat. He did not want to participate. We had to keep him hooked up to the IV longer than anticipated. But, eventually he ate and on Tuesday (day 5!) we were on our way home. What a relief!

Post-Op Day 2

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Post-Op Day 3

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Post-Op Day 4 – Going home!

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We’ve been home for 3 days now. It’s overwhelming at times. Eli requires more supervision now and Cody demands more attention. We have struggled to find the balance but each day gets better. Eli has not had any pain medication (besides Tylenol) since leaving the hospital. His last dose of Tylenol was 24 hours ago. His strength and resilience amazes me daily. I have never been more proud of him than I am now. I was once afraid of what people would think or do when they saw his scar. I am still a bit timid, but on our first outing out of the house today I announced to two complete strangers that one week ago our little cutie was undergoing skull surgery. Proud mama moment.

**Thank you to Nana and the Lemmon and Peabody families for taking great care of Cody in our absence. He had so much fun he may not have realized we were gone! Thank you to the amazingly skilled surgeons, Dr. Lee and Dr. Birgfeld for “fixing” our son’s skull. These two make a great team! I appreciated their kind bedside manner and thoughtfulness in which they spoke to us. They treated Eli as if he were their own and that’s what makes a great doctor. Thank you to the countless other doctors and nurses we encountered at Children’s during our stay. Most were personable and knowledgeable and willing to include us in the decision making (I love the parent driven team approach at Seattle Children’s!). Thank you to Shelby Davidson for her companionship and newfound friendship. And last, but most certainly not least, thank you all so much for your prayers, your love, and the well wishes you’ve sent our way. I’ve felt it all and I am forever grateful that you have embraced our family. I once thought that Eli would change lives. Now I know.

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Skull surgery. Nailed it.

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

Love creates awareness

October is Down syndrome Awareness Month. I remember writing about that last year, before Eli was born. I was certain I would be Eli’s biggest advocate. Now that we’ve had the pleasure of getting to know Eli for almost a year, I’ve realized he does a lot of the advocating himself. People genuinely love him without ever even meeting him. I have thought about what I would like everyone to be most “aware” of when it comes to Down syndrome. My wish is that through pictures of Eli, interacting with Eli, and loving Eli that you see past antiquated stereotypes. He is a son, a brother, a nephew, a grandson, a cousin, a friend. He has feelings and emotions. He is smart and funny (and obviously adorably cute!). He happens to have an extra chromosome but that will not stop him from having hopes and dreams, just like the ones we already have for him. His smile can light up any room and I know he will one day change the world. Please teach your children to be tolerant and accepting of all people. Please teach love. I truly believe that love can, and will, conquer all. Eli has taught me that. See, he already is changing the world.❤️

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Last year I talked about the Buddy Walk and how we weren’t ready to go yet. This year we were excited to go and hang out with so many of our new friends! Unfortunately, Seattle’s Buddy Walk is scheduled for this Sunday, October 6th. Eli’s surgery is on Friday. If we’re walking anywhere on Sunday, it’ll be the hospital halls. This year, we’ll be at the Buddy Walk in spirit.

Tomorrow we find out what time Eli’s surgery will be. I’ll be honest, I’m a wreck. More on that in the next post….
Until then, I’ll leave you with Eli’s 11 month old (already?!?) picture collage.

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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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