Our Journey Through Craniosynostosis: April 2012

It goes without saying that Saturday, July 11, 2009 is a day in which my life completely changed. Only 2 hours had passed in the wee morning that Saturday, but I heard something that forever changed my heart, my world. I heard the whimper and faint stretch for air from a little boy that forever compromised who I was and who I am today. I expected this change and welcomed it with every fiber of my soul. What I didn’t expect was how this solitary moment would change how I felt and viewed my creator.

I was incredibly blessed and fortunate to be raised in an overly loving, supportive, Christian home. My parents knew of each other through high school, but it wasn’t until a church function that two high school students went from acquaintances to more than just friends. Sunday mornings and church were synonymous with Saturday afternoon’s and Florida State football for my family. A question was never raised of if you were going. Why ask a question, that you already know the answer too? Yet, Nathan’s arrival and the events of this past year have eternally molded my heart into a love and adoration for my heavenly father, which I never imagined could exist, one that I didn’t truly understand the depths of.

The week of our first Easter with Nathan, I would watch him play and wonder to myself, ‘How could I ever send him to die?’ While the thought lingered on grossly morbid and disturbing, it was something that shook me to my core and challenged me in ways I had never been challenged. I watched Nathan the rest of the days leading up to Good Friday and Easter Sunday and this thought lingered still. I imagined the fate of a world, literally sitting on my precious 9 month olds shoulders. It was something I couldn’t bare to contemplate or dream of. Yet, it made me instantly aware of how great and immeasurable my Father’s love is for us. Sending our son to die is something that I couldn’t do. Thankfully the fate of the world wouldn’t depend on me.

I marveled at Nathan yet again with that same adoration recently. Except this time, it was on a Wednesday morning, not a full 24 hours after his surgery. A surge of overflowing love and pride filled my heart for our little boy, for our little fighter. I wondered again, ‘How much He must love us.’

And I realize just how beautiful you are,

And how great your affections are for me,

Oh how He loves us…

Thursday, April 29, right on schedule, Nathan was discharged from Medical City Children’s Hospital. It was very similar to bringing Nathan home for the first time after he was born. I remember every moment of walking out of the elevator and into the lobby of Medical City. I remember very vividly loading everything we had accumulated over the past 72 hours and putting it into our rental car. And I will never forget staring at him in his car seat as cars flew past us on the interstate in Dallas. We were part of those cars the day before as we commuted to and from the hospital, but that day was different. We had some extra precious cargo riding with us that day.

Somebody was definitely ready to go!

Nathan’s first night at the hotel was definitely difficult. It literally was like bringing a newborn home. Nathan tossed and turned and woke himself like clock work every 30 minutes. 4 am came and we gave Nathan Tylenol for the fever he was running and pain. We then handed him off to his amazing Mimi & Papa, so Brian and I could rest. Friday we stayed at the hotel for the most part, fearing the risk of infection. Saturday we visited a local aquarium and visited Dallas’s Fair Park. Sunday we flew back to Mobile and made our trek back to Pensacola.

As soon as Nathan walked in the door of our house, he was Nathan again. It was almost as if everything that he had been through in Dallas had been forgotten and he was our two and a half precocious little boy again. We had been told that it was incredibly common for sleep patterns to be completely altered after surgery and developing that routine would prove to be difficult. This was something that had proven itself accurate while we were in Dallas and we expected to face some of the same challenges as we came home. To our great surprise, Nathan slept completely through the night Sunday. Our little boy was definitely back.

Monday was our first bath time at home. Nathan did wonderfully with bath time, but was definitely not a fan of getting his hair washed. He learned the phrase ‘don’t touch’ while at the hospital and was very willing to let me know, he was not at all happy with me touching his head while washing his hair. We made it through though and the next thing I knew, it was Tuesday!!!

We made it! We were 1 week post op and blown away by how much progress our little guy had made! We were on the other side and couldn’t have been more elated about Nathan’s progress.

After naptime, I was flipping through the channels on the TV and saw that Dallas had been hit with over 12 tornados. My heart literally broke. I thought of every aide, nurse and doctor that we had saw while at Medical City and prayed that each of their homes had been spared in the devastation. We had known all along that we were where we needed to be and we were there when we needed to be there, but the thought of being in Dallas when the tornados hit was something that terrified me. I couldn’t imagine Nathan being in surgery or switching off duty between my parents, Brian and I all while tornados were hitting Dallas. It was horrifying. Once again, God proved that He was in control and we were so incredibly grateful for His provision over us during that time.

Today, Nathan met with his pediatrician for a follow up visit. He was paraded around the ped office and shown off to other doctors and nurses who we had to constantly remind, he was only 1 week and 1 day post op. We chuckled over having ‘normal’ doctor visits from now on and nothing major for the next couple of years.

I sit here and stare at Nathan as he plays with his cars and ‘choo choo’s’ He’s come so far in the past week and has proven to be so strong and such a fighter. I am beyond proud to be this little guy’s Mommy.