|Levi says thanks! 2 weeks post op|
We had so many people praying for us, and for Levi, that I wouldn't have been surprised if Levi had been miraculously healed overnight. That, however, wasn't part of God's design. The blessings that came our way were surely Him though, working through prayers. Please be warned, I use the word "blessing" a lot in this post, which may become redundant to the reader, but that is the best word to use in this story...no pseudonyms for this one. I won't be telling people we were super lucky, or very fortunate, and I won't be giving credit to fate, or the universe. This story is about choosing to recognize blessings from God. So for those wondering how it all went down, here is what your prayers got us:
From the moment of the diagnosis, I felt peace. I drove up to Orlando with Levi by myself, having spent some time on the internet the day before googling "abnormal infant skull". I suspected it was sagittal synostosis based on what his head shape looked like, and the fact that I already noticed weeks before that his soft spot was almost totally closed, which it shouldn't have been at his age. I also saw that the only treatment for it is surgery. I went to Orlando with all of that in the back of my mind.
The drive was smooth. The hospital was gleaming, the way only new buildings can gleam, the metals and marble columns sparkling in the sun as I walked in, blessed with a free valet, it was complete with water features, beautiful landscaping, and an enormous, almost entirely empty lobby. Bouncing, flashing, colorful lights making cool shapes across a 50foot wall just next to the reception desk created entirely for my viewing pleasure would be enough to temporarily distract anyone from their pain or problems, and I quickly learned that seemed to be Nemour's ubiquitous goal. From the quirky light fixtures to the funky yet comfy furniture, from the vivid artwork to the beautiful views from the floor-to-ceiling windows, everything made me feel like I was walking into a Disney hotel, not a hospital. The staff was incredibly friendly too, and Levi's pediatric neurosurgeon was no exception.
We were seen right away, and Levi's doctor, Dr. Maugans, was patient, thoughtful, and most important to me, highly qualified. He examined Levi, and was very sweet with him (sometimes men don't have the most natural motherly disposition with newborns, but this guy was very good with him). Within 15 minutes he speculated Levi did in fact have nonsyndromic sagittal synostosis, but he wanted to confirm with a CT scan. Instead of having to go to a different part of town, or wait for days for another appointment, as we may have had to do in Key West, we just went down the elevator and waited about 4 minutes in yet another beautiful waiting room, complete with a 1500 gallon tropical fish tank. No mother gets excited about having to put their infant through radiation of a CT scan, so I counted it as another blessing that Levi was not unruly and didn't need any restraints to keep him still. I simply got him to fall asleep (ancient magical sleeping potion, breastmilk), laid him down on the belt and they zipped him in and out within minutes, he slept through the whole thing.
Again, we didnt have to wait. The results of the scan were upstairs on the doctor's computer before we even got back upstairs. After confirming the diagnosis, Dr. Maugans spent the next 45 minutes with me, in no rush at all, answering every question I fired at him, even commending me on my great questions and encouraging more. I didn't burst into tears when he said surgery was the only treatment. My heart was braced and I felt totally at peace. We were blessed to schedule the surgery for a month away, while Levi was still young enough to be a candidate for Dr. Maugan's nonendoscopic, minimally invasive calvarial vault remodeling, which must be done before 12 weeks for optimal success. After that, he'd have to do a much more involved procedure which would require a zigzag incision from ear to ear.
I had given the entire situation to God's much more capable hands, but still, I spent hours in the next few weeks researching all about it. I read Dr. Maugan's published work, I reached out to other families across the country who went through this. I came up with another litany of questions I wanted to ask Maugans. What's the chance he'll need a blood transfusion? What, if any, drugs are used to help decrease blood loss? How many 2nd surgeries have been needed due to incorrect reforming of the skull? How soon can I feed him after surgery? Why do other neurosurgeons say their surgical procedure is best? What makes your procedure superior? Do you have a craniofacial surgeon helping during the surgery? Should I find family to donate blood for Levi?...and on, and on. I compiled them in an email and sent them 'to the doctor. Instead of replying to my email, he called to answer all my questions. All the while, I was blessed with a peace that surpassed understanding.
We had to figure out who would be able to watch our other 4 children while we were with Levi during the week of surgery. We are blessed to have some sisters who are teachers, who are off during the summer. We created a shift schedule with a minimal overlap, and it was in this way the responsibility of caring for our chickens was shared equitably. My sisterinlaw Kara and mother in law Karen came during the first 2 days. My sister Kimmie came for days 2-4. My sister Samantha came to relieve Kimmie for days 4-6, since we were not sure when Levi would be ready to come home, she was the closer and truthfully we couldn't give her an exact day we'd be back. As a side note, how blessed am I to have such amazing siblings!? They are little mini-mes. They know how we expect our children to act, they know how to cook, they know how to clean. They know how to work hard, they are no strangers to large groups of children. They know how to pray, they know how to kiss booboos, change diapers, follow routines, and sing lullabies. I highly recommend siblings to anyone thinking about having children of their own. It's an investment in your family's future joy.
I typed up a 3 page best practices guide for all of the ladies in charge. They could refer to it for successful meal ideas, bed time routines, favorite tv shows, a routine for when things became chaotic, translations for words twins are saying, etc. If nothing else it gave me a security that I was not throwing these women to the wolves without some preparation and equipping them for success. We left our van full of carseats for them in case they felt crazy enough to take them out of the house, and my parents blessed us with a rental car for a week. In the days leading up to departure, my entire church choir of about 50 people circled around me holding Levi and prayed fervently for God to receive glory in all of Levi's circumstances. Our Sunday school class of adults later did the same thing, and blessed us with a gift basket for us on the road, filled with chocolates, fruit, candy, homemade granola, and gift cards for gas and groceries.
The pre-op appointment was Monday at 3:15. We got to meet Dr Maugans again to ask any final questions. As God designed it, one of his baby patients who had the same surgery 3 months prior was just about to leave the building from their follow-up appointment. Dr. Maugans asked if we would like him to ask the family to come in before they left, to let us see their son and ask them some questions. What a unique added blessing, to be able to actually meet another baby and his parents who just went through this! The parents were awesome, the mom also breastfed, so I was able to ask some questions about how it was to feed him after surgery. They showed us pictures on their phone from the day of and after surgery, so we could see exactly how much swelling to expect, but mostly to see how quickly their son was back to himself. I didn't think about how nice it would be if we could meet that family. I didn't think to ask that in my prayers. But I was very grateful for this unexpected blessing, just reminded me of Ephesians 3:20, which could easily summarize my thoughts on this entire ordeal: Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us...
We went downstairs for Levi to do his bloodwork, and that was not so fun. They had a really hard time finding his vein, they kept saying he was a beautifully chunky baby and his veins were hiding. After 45 minutes, they got enough blood to suffice. Levi was not happy, mostly with the tourniquet being tied so tightly on his different limbs for so long, but we got through it. Levi slept for the next 6 hours from that ordeal, so Ryan and I got to have a nice dinner out while Levi slept all the trauma off. Poor guy, I kept thinking, little does he know how much worse it's going to get tomorrow.
Around 7:30am, before they even wheeled Levi away, we were informed that we had visitors. They were permitted back, and it was two dear women from a group I'm part of called The Buggy Bunch. It's a group of mothers, 300 strong, in Indian River County, that's sole purpose is to love on, encourage, and support other mothers. They provide opportunities for faith, fitness, and fun for the whole family. These two women in particular are leaders in the organization, and have families of their own, and I've only had the chance to hang with them on a handful of occasions, but they totally surprised me by driving up to Orlando to, in their words, "be a blessing, however we might need them to be". It was so unexpected, such a random act of kindness, I let the tears of gratitude fall. Within minutes, one of my best girlfriends from college showed up. She had taken the day off of work to drive down from Jacksonville to sit with us, and help us pass the time. We spent the morning in the colorful and posh cafeteria, eating our custom omelets and sipping coffee in the sunlight filtering in through the large windows. We prayed for the doctor, for Levi, and for ourselves. We said a prayer of gratitude, and then talked a mile a minute, as only women know how to do. Poor Ryan probably got 5 sentences in edgewise, but that's his preference anyway. Before I realized what was happening, I got a buzz on my outback steakhouse beeper that read "Levi doing great!". That slapped me back to the actual event, and while we gave that a minute of reflection, the conversation quickly slipped back into timelessness. And just like that, two hours had passed-- it was over. I got another buzz saying to meet the surgeon at Door B, it was finished! When he came out to see us, he told us it all went very well, and while Levi was given 1cc of blood, it was just to err on the side of caution, and Levi did wonderfully.
|Yoda, Day 1|
I hugged my women companions and they were on their way, while Ryan and I took the hallway to be reunited with our little man. The truth is we found him pretty upset. He was hoarse from the tubing they had just taken out, and he was sobbing in between shallow breaths of air. They were trying to rearrange his pillow when we came in. For the first 3 hours it was touchy. He couldn't stay asleep for more than 15 minutes before waking to cry. But after that, he seemed alert and calm enough, so I nursed him, and everything continued to improve, and he got his smile back just a short time after. As a nursing mom, the hospital blessed me with complimentary meals. We were blessed to stay in the comfy PICU, some of the best nurses in the biz by our side, for the rest of our stay, because the hospital was vacant enough that there was no real need for our room to be changed. We had a few special visitors in the next few days, including another special girlfriend from college, my sister Julie and boyfriend Brian, and our pastor, who made the drive up from Vero just to pray with us and check in. Blessed texts of encouragement too many to count came flooding in over the next two days. Levi's head swelled to twice its size, so much so that his ears started to bend and fold outward. He resembled Yoda. I could recognize his eyes, nose, and mouth, but that head I did not know. I nursed him in faith that this was actually my kid, this big-headed alien, and for the next 24 hours I came to accept that this was my new baby, and I was ok with that. Dr Maugans came to check on us and laughed at my remark about Yoda. "That's funny you say that! My last family said the same thing of their baby after surgery!" But the swelling subsided. Levi's smile was consistent and recurrent. We were discharged Thursday morning, just 48 hours after Levi had large areas of his skull cut and permanently removed. We had not expected to be heading home so soon! A special aunt had pre-arranged to bless us by picking up Luke and Juliette from Vero and bring them to Legoland on this day, and the original plan was for her to bring them back to Vero after, but now we were able to wait around for them to finish up at Legoland, and bring them home ourselves.
|Discharged and free!|
We picked up the older two and swung into a restaurant for a quick dinner before heading back. It was odd to be together without the twins, but we were blessed to spend time with our older two without the major distraction of watching the two-year-old twins at dinner. We bowed our heads to quietly give thanks, and as we got ready to leave an older gentleman came to sit with us and tell us how much he loved seeing a family pray for their meal together, and how well-behaved our children were, and to keep up the good work! (the twins would not have earned such a compliment, but they are a work in progress.) What a blessing that man was to me at that moment! To tell a parent they're doing a good job is akin to giving a preschooler a shiny blue ribbon. It will bring a sense of pride and encouragement for years to come. Words are powerful things.
So we drove home, a quiet drive filled for me with thanksgiving. We were home in time to get Juliette off to a wedding she was supposed to be in as a flowergirl, and in time enough to be in church Sunday morning, to show so many what their prayers were worth.
|1 week post op|
I know our views of the world are all colored by the glasses we choose to wear. Some would credit fate or destiny for all things, some say karma drives consequences, others throw up their hands and say it's all a matter of luck or chance. But my glasses show the divinity in all things. My glasses show a hand purposefully working this messed up world to ultimately bring peace, comfort, and joy, to anyone who longs for it. I choose to believe there is a reason behind it all, good or bad, and even in the hard times, it's all temporary--just a blip in eternity, and it will pass.
Just to drive the point home, I believe all things work together for good to those who love God and are called according to His purpose, and I don't see anything as circumstantial. Here's how my brain works:
IF we still lived in key west, travel would be an issue. 3 hours up and down for the next 5 years?! ugh.
IF we didn't have Levi's pediatrician, maybe another less-seasoned dr would not have been so quick to recognize or recommend seeing a pediatric neurologist. It's only one in 2000 births, after all.
IF we didn't live in America, in 2014, these amazing technologies would not be available to us.
I have Medishare, which is a Christian medical billing and sharing program-- not insurance, but they act similarly. At their suggestion, we applied for Medicaid, and Levi qualified 100%. Because we are on one income, and have a gorgeous and large family, the state, our taxes and yours, already paid for every dime the surgery would have cost us. If not? I can't even imagine what it would have meant to our family's future without this blessing.
IF the surgery wasn't in the summer and I didn't have sisters...
IF the hospital was subpar, the nursing staff was less than highly qualified, the rooms were uncomfortable...
IF Ryan's new job wouldn't allow him time off...
IF this was happening to my firstborn, how much of a basket case I may have been...
IF Levi's plates had fused in a different area, a different form of craniosynostosis, surgery would have been more complicated, his recovery longer, and his skull deformation greater.
IF Maugans had decided to go into architecture instead of medicine..
"Prayer is like a boat being moored to a dock. Newsflash: You're the boat, not the dock. Prayer isn't you pulling God closer to your plan, to your desires; it's you pulling on the line and drawing your heart's inclinations and intentions closer to His."