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