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

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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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

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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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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Post surgery update (with pictures – warning!)

It’s been a long day. I’m functioning on 45 minutes of sleep right now so if I get through this post without falling asleep and dropping my phone (from which I’m writing this post) to the floor it will be a large accomplishment.

Speaking of large accomplishments, Eli is off the ventilator. While this is wonderful news, he didn’t tolerate it as well as we had hoped. He was coming off his anesthesia (although still quite sedated) and had passed the breathing test. He was a prime candidate for extubation. They removed the breathing tube while he squirmed, kicked, and tried to cry. He worked himself into quite a tizzy. His heart rate increased drastically, his blood pressure sky rocketed, his body temperature went up and his breathing became very fast, deep, and labored. Worse than anything we’d seen prior to heart surgery. The attending physician suggested CPAP. Unlike when he was in the NICU after birth, the CPAP does not pose a great risk to the lungs at this age because his lungs are more developed. He is now resting comfortably with a little breathing assistance. The CPAP is still less invasive than the ventilator, although it looks more obtrusive.

Now I’m debating whether or not to stay at his bedside where I’ll get zero sleep or go home and get a good night’s rest. He has one on one nursing with a nurse stationed at his bedside throughout the night. His nurse has encouraged us to go home since we need to be rested when we go to the “floor” (cardiac surgery recovery wing) as he’ll have less nursing attention and we’ll have more parenting responsibility. Considering I’ve fallen asleep twice while writing this, the idea of sleep is winning the argument.

Thank you to our parents for going through the longest (albeit considerably short!) wait of our lives here at the hospital today. Many thanks to my dear friend Alicia for taking care of Cody while we were here. Also, a HUGE thank you to everybody who has been praying for Eli and our family. Please keep praying for a smooth recovery for our super hero. I am truly inspired and awestruck by this tiny human.

Here are some pictures. WARNING! Some ARE graphic.

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Saying goodbye before surgery

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First time we saw him (he looked a lot less scary than I had anticipated)

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Post breathing tube removal

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Resting comfortably with CPAP

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My HERO

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.

The big day has arrived. Eli’s heart is getting fixed!

I can’t stop staring at his chest. His perfectly unscarred chest. Tomorrow it will look bad. Real bad. But, eventually, as he grows, the scar will look smaller. It will one day be something that he’ll show off to his friends. A mark of courage. Another thing that makes him perfectly unique.

Tomorrow (well actually today now since it’s 1:30am!) at 7:30am, Eli’s heart will be repaired. Please pray for our sweet boy. Please pray for the surgeons. Please pray for his very worried parents.

Good night for now. I will update throughout the day.

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