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.

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

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.

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.

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.

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.

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!

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.

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!

“MY FIRST HAIRCUT WAS BY A NEUROSURGEON”

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!).

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!

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.

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.

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.

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

Post-Op Day 3

Post-Op Day 4 – Going home!

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.

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.

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.❤️

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.

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!

Surgery has been scheduled

It’s hard to believe our little hero is already 9 months old. Even through the tough times I’ve enjoyed every single minute. He has blessed my life in ways I never saw coming. He truly was Heaven sent.
Eli’s surgery date to correct his craniosynostosis is October 4th. We met with the anesthesiologist yesterday. He went over all the extra risks that Eli may encounter with this surgery. Needless to say, it was scary. Your continued prayers are welcomed and needed.

Please keep Eli’s big brother, Cody, in your prayers as well. He has become such a sweet, protective brother. Chuck and I are truly blessed by our two amazing sons.

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.