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!

20131110-230705.jpg“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!).

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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. πŸ’›

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.