Tuesday, December 13, 2011

December 13, 2011 (Accessory Pathway)

This month payroll is deducting all of our benefits from our paycheck when Chris had to take unpaid leave for Jackson. With basically no paycheck coming in, literally over $3000 in medical bills due, I felt overwhelmed. Then our car broke last week. Then I received a letter that our insurance is reviewing their contractual responsibility for certain coverage for Jackson. I went from overwhelmed to exhausted to endless tears. "When can I rest God? When can I truly take a deep breath?" Then I was reminded of this:

It was September 15, 2011. It is a day I will never forget. It was nearing 5:00 am when Jackson woke up for his early morning feeding. The world was quiet below our high rise room at Texas Children's Hospital. Jackson was 8 days old. It was a Thursday and we were nearing the Friday "decision day" as to whether or not the doctors thought he would need a pacemaker. My heart was burdened beyond what I thought I could bear. I began to pray and everything in me just couldn't find the words to say. I was exhausted, I was beaten down, I was under attack. I woke Chris and said, "I just feel like Jackson's life is under attack and we need to get up now and pray."

We prayed nonstop for the next two hours. Walking around our small hospital room as Jackson's cords hung from his tiny innocent body, I wept as I cried out for a miracle. "Jesus, please heal him. Touch his body and hold his heart." 7:00 am rolled around and our nurse practitioner came in to look at Jackson. Everything seemed "normal" and she said they would be back for their normal rounds. Normal... it's almost a word that seems like a joke for Jackson. His heart is backwards, his average heart rate was in the 80's and it never had gone above 90. Jackson's EKG came at about 12:30 and that's when everything changed. The computer screen came up and his heart rate was in the 120's. The technician was confused and then excited. Holding Jackson's hand I cried. I thought for sure... "This is it, he's finally healed!" I was giddy and overcome by emotions.

It was late in the afternoon that a knock on our door brought the EKG technician into our room again. He said, "The doctor's didn't believe me that this was the right one for this baby." Sure enough, his heart was up, no sign of complete heart block. It turns out that Jackson's AV block (Complete heart block) was still there and is still currently. What they were able to find was that he has an accessory pathway in which he conducts electrical pulses through to get his heart rate up. The doctors said they were confused because he had to have been born with it, but it was unusual for him to never use it until his eighth day of life.

A mystery to them, an answered prayer to us. There is no medical answer to why these things continue to happen in Jackson's life. For 9 months in my uterus and eight days of life he functioned with no accessory pathway and yet on the very morning that I woke up and felt his very life being fought over in the spiritual realm he begins to use this miraculous fiber to keep his heart beating at a pace normal to the average baby. Since then we have ran 3 different holter (24 hour) periods in which they have not seen any periods of complete heart block. His average heart rate continues to be in the 120's.

Though even after that there ups and downs of our hospital stay including a surgery scheduled and canceled, Jackson came home with nothing but a simple medication given to him every 12 hours. On his 8th day of life, a battle was raging, a war was being fought and then as prayers were being raised, God stood glorified. Where science can not answer to these things, I know that the God that I serve can. We have yet to see just how miraculous Jackson's heart is.

So today with a heavy heart on all of the practical items of our fight for Jackson, I am reminded that God is never far. The battle is still being fought and the storm is brewing. Will I choose to stand and fight or will I keep my head buried in my tear soaked hands? The God who has faithfully carried us this far would never drop us now.

"Never give up, at your lowest moment God may be preparing you for the biggest thing you'll ever do." --Chuck Colson From today's Focus on the Family Daily Broadcast

Thursday, December 1, 2011

December 1, 2011

I had always intended on writing after we returned home with Jackson. After all his journey is far from over. I knew that I would love him, but I don’t think I could have prepared myself for the amount of emotions that his little body brings to my life every day. That is exactly the reason that I haven’t found the time to sit down and blog about our journey after finally bringing him home to Austin. I had no idea just how different my life would be with Jackson in it. I spent much of my time before he was born wondering if he would make it and if he did how his life would be. Would he be in pain? Would his body be tired all the time? Would he be in and out of the hospital?

To answer these questions, here is a little glimpse of what I look at each and every day:

Almost every picture I take of Jackson he is smiling. It’s not just a coincidence. He is the happiest and sweetest baby you could ever hope for. He is growing like a weed and much to the surprise of our pediatrician he is in the 95th percentile for both length and weight. When he smiles at me, my heart literally skips a beat. His face lights up when you talk to him about how handsome he is and he absolutely loves his sister given nickname “Superman Baby”.
There are moments of sheer panic for me as I learn to live with a baby that has medical issues. At times I feel on edge as I watch for any signs that could begin to tell us that his heart is not doing well. But, day after day he continues to not only live his life, but to absolutely thrive doing it. What a privilege it has been to watch him grow stronger and to watch as his heart continues to be stable. Though I would not have chosen this life for him, I have been amazed as I get to see miracles happen on his behalf constantly. Prayers being answered, results being normal, and tests showing stabilazaiton. Since so much has happened since our last blog, here are some of the answered prayers:
      1.       Long QT genetic  test (would require him to have a pacemaker immediately) came back normal!!
2.       Chromosome Panel test (any other genetic issues) came back normal. This means that his heart is an isolated issue rather than caused by another genetic disorder.

3.       His heart rate is consistently in the 130 range for beats per minute. While I was pregnant he was always in the 80 beats per minute as well as for the first 7 days of his life. It wasn’t until Day 8 of his life that he began to use an accessory pathway to conduct through.  Since then we have ran 24 hour holter periods on him and they have hardly seen a glimpse of any heart rate lower that 130.

4.       He meets no other standard for a pacemaker at this point. This is the same baby that had a pacemaker surgery scheduled  for September 13th, 2011, and was canceled 3 hours after it was suppose to start.

I could continue on and on about how God has been faithful in our lives. From our smallest of worries to our greatest fears, God has shown himself incredibly powerful! We know that so many people around of us have stood faithfully in prayer for our little boy and for that we are forever grateful. Never in my life would I have imagined my life to be so richly blessed with the deepest of love possible. For the days that I feel at my lowest I now have a perfect physical reminder of just how far God has taken us. It’s not just the body of a little boy, it’s the giggle on his face that tells me that God is not done yet… this is only the beginning of something incredible!