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. 

Friday, March 23, 2012

2 weeks...


I wish it were 2 weeks from now…

I wish it were Friday, April 6
I wish it were the day before my Daddy’s birthday
I wish I were 35 weeks pregnant
I wish we were ‘on the other side’
I wish that our Sweet Boy would never have to know what a PICU room looked like
I wish for no infections
I wish for no blood transfusions
I wish that swelling is minimal and it goes away quickly
I wish for quick healing and speedy recovery
I wish for no more surgeries
I wish to be back home again
I wish for normalcy to return

I wish it were 2 weeks from now…

Monday, March 12, 2012

The puzzle is complete...


‘You stay the same through the ages
Your love never changes
There may be pain in the night but joy comes in the morning

And when the oceans rage
I don't have to be afraid
Because I know that You love me
Your love never fails’

I metaphorically shake my fist in the air and yell aloud in my head, ‘Darn you subconscious and pregnancy hormones!’

All of Nathan’s referrals have been approved. There is no going back. We’re going to Dallas and surgery is definitely happening. While I sincerely thought that I would be over joyed at this notion, this moment was brought with numbness and raw reality. We fought so hard to get to this point, but I want so desperately to be so far from it. Like everything in this journey, in one hand I am elated and grateful that everything has been approved. In the other hand the bitter reality of what is about to take place in our lives looms on the horizon.

I know the One who has brought us this far, is still and always will be with us. He won’t leave us or give up on us. As Nathan is our child, we are His. And we will make it through this. 


Sunday, March 11, 2012

The last puzzle piece...


“Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine.”
Luke 22:42

We pray so often for things to happen and to happen our way. I am completely guilty of this, as my prayer this past week has been to let the last referral we need, the last T to be crossed and I to be dotted, be approved. Never once this week have I stopped and prayed for God’s will to be done for Nathan. While, I whole heartedly believe we are on the right path for Nathan and we are doing what is God’s will for him, I have only earnestly prayed for the outcome that I deem worth while.

I truly believe that God wants to hear our prayers and He wants them to be specific. He wants to know the desires and yearnings of our heart, but He also wants us to be accepting and trusting when things don’t go exactly our way. I’ve prayed very fervently and specifically for things to happen in my life, that never happened. Yet never once have I ever looked back and thought, ‘Things would have been so much better if they had just gone my way.’ My God is faithful and just and I have to have faith in that, in the little things and in the big things.

We fly to Dallas two weeks from today. Airfare, rental car, hotel reservations have already been paid for, not by just Brian and I, but for my parents as well. I literally tremble at the thought of this last referral not being approved, but I have to trust and have faith that God knows what’s best for Nathan. And that for whatever reason, if this last referral isn’t approved, there is a reason. ‘I want your will to be done, not mine.’ 

Monday, March 5, 2012

He never ceases to amaze me...

A feeling of undeserving love, amazement and grace encompasses my soul. I don't know if I've ever been in such awe of my creator.

We left Dr. Fearon's office Friday, with the understanding that his office would be in touch. He would dictate his notes on Friday, proof read them Monday/Tuesday and we should hear from his office by Wednesday at the latest. Today at 5:30 pm, I was informed that not only had Dr. Fearon's office been in touch, but that we had a date!!! We saw Dr. Fearon Friday at noon, Monday at 5:30 pm, I'm given a surgery date?!?! Really??? 

As of right now, we are looking at Nathan having surgery on, Tuesday, March 27. Three weeks from tomorrow!!! 

Please, please continue to keep us in your prayers. Though we have a surgery date, we do not have a referral for surgery for Dr. Fearon. That is our next mountain to climb. We have been told that getting a referral for Dr. Fearon should be easy peasy, but we can't have surgery and can't progress without it.

Don't quit...

I taught for one year at an all girls, alternative education school. I learned the true meaning of what it meant to be an advocate for children. I had to make decisions I knew would truly affect my student’s day to day life and living situations and sometimes environment. I fought for ‘my girls’ in ways I never thought I would ever have to in being a teacher. And in the end, it made me a better parent.

In my previous blog, I mentioned how God had moved some pretty big mountains for us. Dr. Fearon is covered by Tricare, but Dr. Sacco, ( pediatric neurosurgeon ), is not. Getting Dr. Sacco approved as an out of network approval, was going to be a fight. Especially since Dr. Sacco is considered a ‘second opinion.’ Dr. Willert had even once stated, ‘You know how to write your Congressman, right?’ We knew we were up for a fight and we were ready to do so.

God literally blessed our family with the addition of Nathan. He, ( with his brother ), is my greatest blessing. You hear so many cliché’s before you have children, but one that has proven the most true to me is that ‘having a child, is literally like having your heart walk around on the outside of your body.’ There is literally nothing in this world, I wouldn’t do for that little boy. I will be his strongest fighter and his biggest advocate. Besides, God’s not done with him yet. In fact, He’s only just begun.

Today we were made aware, that Tricare approved Dr. Sacco to not only evaluate, but treat Nathan as well, ( i.e. treatment = surgery approved!!! ) I was standing when I found out this information and I instantly felt faint. I had to sit down. I literally couldn’t believe my eyes or my ears. Sacco. Approved. 4 visits.

Now we are waiting on the dictation from Dr. Fearon’s office for his plan of service, or POS, for Nathan. Once we get that, we will be submitting that to Tricare. Once that get’s approved, ( which we have been told should not be a problem ), we will then be scheduling Nathan’s surgery. I’m still in constant awe and amazement at how quickly everything is progressing. Referrals that should take weeks are taking hours and days.

Through all of this I have learned, that I will not quit. I will not give up. I know my God is on our side!