Our Journey Through Craniosynostosis

Saturday, April 7, 2012

Easter...

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…

Wednesday, April 4, 2012

One Week...

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.

One week post op - Looking at the top of Nathan's head.

One week post op - The right side of Nathan's head.

What cha doin Momma?

One week post op - The left side of Nathan's head.

One week post op - There is still some very minor swelling under his eyes, but other than that, he's looking great!

Wednesday, March 28, 2012

Tuesday, March 27...

'I want you to know I serve a BIG God. And He can do whatever He wants to do. He can open what He wants to open and shut what He wants to shut. And a [family] that plays for His honor and glory, will have His blessings follow that [family].’ ~ Facing the Giants

This was my Facebook status on Monday, March 5. I thought it was incredibly applicable to that day, to the moment I was in, to the emotions that over flowed from my heart and soul. That day, I had never felt more at peace and more calmness and serenity about the choices and decisions we had made for Nathan’s care. That was until yesterday…

Monday, March 26 ~ Our first appointment was at 9:45 am and we had appointments until 1:00 pm that afternoon. I filled out a couple of sheets of paper work, feeling fine and having my amazing Momma sit by me in case I threw the clip board her way in utter protest. Things were going smoothly and I was as calm as I could be, until I hit the ‘Advanced Directives’ section. ‘Do you have any advanced directives? Do we have copies of your advanced directives? Would you like to be given any information on advanced directives?’ Thinking about advanced directives, ( i.e. their will, their last wishes, life support choices, etc. ), is something that no parent should ever have to even possibly consider for their child. It was beyond torturous to even have the notion in my head that Nathan wasn’t going to pull through this surgery. Yet protest as I did, Brian and I made choices for Nathan in the great hope that this would be the last time we ever talked about his short life ending.

We met with media, who took pictures of Nathan’s head. Then we met with a paleontologist, who took measurements of Nathan’s head so we could have a baseline of where he was before surgery. ( Excuse me for ever thinking that paleontologist only played with old rocks and dinosaurs. ) If he took one measurement of Nathan’s head he took twenty of them. That appointment did not go so well and Nathan kicked, squirmed and screamed to let everyone in the office know he wasn’t happy with what was going on to him.

Pre admission testing followed and Nathan had some lab work performed. I was thoroughly impressed with the pre admission process. While I spoke with a nurse and went over Nathan’s history and what brought us to their facility, Brian took Nathan to a playroom, where Nathan played with a Lightening McQueen and a Towmater. Then, it was off to running laps around the nurse’s station as I gave as much information as I could on Nathan’s surgery and condition to the nurse. No one ever seemed to mind that Nathan was racing his Daddy around a nursing station, while cackling like a little hen the whole time.

Our last appointment of the day was with Dr. Fearon. He was just as thorough in explaining everything that would be happening during surgery, as he was in our first email correspondence. We felt at peace. We felt comfortable. We truly felt as if we made the best decision for Nathan and we were in the right place.

Tuesday, March 27 ~ We were told to be at the hospital at 6:00 am. Ever the planner and planning family that I come from, we were at the hospital at 5:45 am and greeted the nursing staff as they came in for work. We were called back to an exam room around 6:15 am and answered more questions about Nathan and his condition. We were told, we would be asked the same question at least three times and we were completely accepting of that. Nathan was given Versed or ‘Goofy Juice’ to assist with anesthesia and separation anxiety. At 7:00 am we were wheeled back to holding. Besides the effects of the Versed, Nathan was in heaven with his own little mini DVD player watching Cars. He was wheeled back to surgery around 7:35 am – 7:45 am.

We were given a direct phone line into the OR and told to call at 9:00 am, 9:45 am and every 30 minutes after that. The OR was reserved from 7:00 am until 1:00 pm and we prepared ourselves to not see Nathan until 1:00 pm. Besides conversing by phone, Medical City Dallas has a wonderful way of keeping family informed of surgical progress. TV’s can be found in waiting rooms and the cafeteria that show a little butter knife, ( incision has begun ), stitches, ( sutures are being placed ), or a band aid, ( recovery ). Since Nathan couldn’t eat that morning, we didn’t eat breakfast. We made our way to the hospital cafeteria and plopped ourselves in front of the TV waiting to see updates. We rejoiced when we saw a butter knife.

From the cafeteria we found the Family Resource Room. A wonderful and unbelievably quiet and tranquil family lounge equipped with chairs, couches, computers, coffee machines, wifi access and peaceful waterfall. We made ourselves comfy there, until 10:40ish when we were told to head to the PICU waiting room and wait for Dr. Fearon. Dr. Fearon and Dr. Sacco came out around 11:15 am and let us know that surgery went wonderfully. They were able to recycle all of Nathan’s blood and a blood transfusion wasn’t necessary. At 11:45ish we were called back to the PICU and were able to see Nathan. We prepared ourselves for the worst. We knew there would be tubes, we knew there would be swelling, we knew Nathan wouldn’t be happy.

Brian and I were both overcome with emotion when we saw our sweet miracle. It was very similar to seeing him for the first time after he was born. He was ok. He looked great and because it was so soon after surgery, swelling had not set in or taken place just yet. The PICU nurse described every noodle of the monitor’s to us and made sure we were as comfortable as we could be.

Seeing Nathan, felt like breathing for the first time in two months. We were done. We were on the other side and Nathan was doing great! More than we did on Monday, March 5, we realized that we serve an incredibly BIG God. We, as a family, had never felt more at peace or at ease with our choices or decisions for Nathan. We knew we did what was truly best for him.

In the standing, walking and stress of the day, my ankles had swelled to grape fruit proportions. It was highly recommended and encouraged that I go to the hotel, sleep and allow Brian and Momma to work the night shift with Nathan. I didn’t even bother putting up a fight. To the hotel I went, placed my grape fruits on three pillows and slept as best as I could. In the morning, Daddy and I would trade off with Brian and Momma and they would go sleep.

Wednesday, March 28 ~ Nathan is doing as well as can be expected currently. His right eye is swollen shut and his eyelid is incredibly bruised. His head is very large, round and swollen and can be very adequately described as another cranio mommy put it, ‘Charlie Brown.’ He’s doing wonderfully though and we hope to be moved to the general floor later this afternoon.