Friday, August 19, 2011

PLEASE PLEASE PLEASE PLEASE PRAY!!!!!!

The surgeon just came to speak with us. Micah is NOT getting a new pacer battery today. The results of the cath show that his left ventrical is not beating the way it should. Dr. Cecchin said that Micah needs a completely different pace maker. He needs a pacer that will pace both the left and right ventricals. His heart is completely dependent on his pacer. The doctor also said that Micah may need more repairs on his heart. It looks like there may be more blockage in his pulmonary artery that will need surgical intervention. The doctor wants him to go on to heart medication to try and relieve the stress on his heart. We will have about 6 months for this decision to be made and action to be taken. Dr. Cecchin wants to meet with Dr. Brown, Dr, Gauthier and Dr. Fynn Thompson to figure out what the next move is. Micah's heart needs help.

Also his liver is showing signs of being slightly swollen; they don't know why this is happening. They decided that since he needs so much more work, they do not want to risk infection by opening him up to replace the battery when in a matter of 6 months he is going to need a completely new pacer and more work on his heart. He is out of surgery and waking up. Dr. Cecchin is with him now as they take out the breathing tube. They are watching him very carefully for any signs of distress or pain. PLEASE PRAY!!! MICAH NEEDS PRAYER DESPERATELY!!!!! Jason and I are very scared.

Update....

We just got another update on Micah. He is stable and handling the Cath very well. The OR nurse sounded very confident. The doctor is taking the measurements now and after everything is done he will come out and explain to us what is going on. Micah will definitely be going to the CICU to recover. They don't know if they will pull the breathing tube right away, they want the ORL docs to look at his throat first. Please keep praying.

Surgery Day....Please Pray!!!

These are the updates so far!!!

At about 8:30am
We are in Boston, checked into the hospital and Micah has been taken back into the Cath Lab. He was pretty loopy and sleepy but was not happy when we handed him to the nurse. My poor baby!! Now we wait. We should be getting hourly updates, but the minutes will crawl by like hours. Please please pray that Micah will be okay!!!!

At about 9:00 am
We just got our first update!! Micah is asleep, intubated, IVs placed and they are getting ready to start the Cath first then they will begin the process of changing his pacer battery. Micah is still my big fighter boy and it took them a little while to fall asleep since he was fighting the sedation. We'll get another update in about 45mins to an hour. Please keep praying!!!

At about 9:30am
Please pray for Micah!!! He really needs it!!!! One of the anesthesiologists just came to talk to me. Micah's left ventrical is having some trouble pumping and they are having to use some medications to help his heart. They don't know what's causing this yet they are still pushing the Cath through his veins. It looks like he will be going to the CICU after surgery. They also want to get someone from ORL to take a look at his throat. Please please pray!!!!

Tuesday, August 2, 2011

TWO YEARS AND COUNTING!!!

2 years ago, tonight at 10:30pm, my water broke. I didn't realize that is what happened, since, with my 3 older children, my water had never broken on it's own. I thought nothing of it and went to bed. Little did I know, that night would begin a roller coaster of events, emotions and faith testing that I don't think I could have EVER prepared for. In just 48 hours Micah will be 2 years old and once again I will know the joy of celebrating another year of his incredible life. His enterance into this world is something I could have never predicted. He, like his siblings, was not a planned blessing; but a welcomed surprise from God. I saw my doctors throughout my pregnancy and no one told me that I should be concerned for his health. I was only told that his heart beat was strong and he was growing on schedule.

Without a second thought, I packed up my family and followed my husband to Germany. We began settling in to our new home and counting the weeks until we thought Micah would come. But 3 weeks before his due date everything changed. He arrived by emergency c-section and I never heard his cry. Though they brought a bundle of bankets to me, I never saw him. When I asked what was wrong I was put to sleep. When I awoke I was told my baby was no longer with me but 2 hours away in Nurnberg. The fear on my husband's face told me something was very wrong. Later I would find out just how wrong.

With the help of his incredible unit we were transfered back to the States faster than I could have imagined possible. Soon Micah and I were in Boston and we were given "The Plan". Take him home, love him, care for him, KEEP HIM CALM, bring him back at 3 months old and they would repair his heart. We did all of this and Micah thrived!! He gained weight and grew stronger faster than the doctors expected. The day Jason and I handed him to the OR nurse was the hardest day of my life. Kissing his little head and silently begging God to give him back to me was the hardest thing I have ever done.

We paced the OR waiting room watching the minutes and hours tick by. Hope and terror every time I saw the Notifying Nurses walk near and then pass, or come with an update of Micah's surgical pogress was beyond stressful. I think back to that day and wonder how we made it through. After 6 1/2 hours Dr. Fynn Thompson came to see us. He said Micah's TOF was unlike any he had seen before and that he could not save his Pulmonary Valve and that Micah was in total heart block. He was hooked up to an external pace maker and there was hope that as the shock of surgery wore off his heart would again beat on its own. After another hour we were finally able to see him again. He had tubes and wires coming from everywhere. There were machines tracking everything his body did. Though those things were there, I did not acknowledge them. All I saw was my sweet baby boy PINK!!!

Over the first 3 months of his life he had slowly begun to turn grey. His fingers and toes were a light shade of blue. These colors became his "normal". I would bring him to his doctor appointments and they would test his oxygen levels and he remained steady between 85-90%. I looked up at his monitors beside his bed and saw the most beautiful number...100%. Micah was finally getting enough oxigenated blood to his ENTIRE body!! God had guided Dr. Fynn Thompson's hands to fix my son's heart.

Since that day MANY more roller coaster moments have happend. Collapsed lungs, Cardiac arrest (TWICE), pace maker placement, pneumonias, feeding tube placements, massive infections in his stomach, abdomen and lungs, many terrifying nights begging God to keep Micah breathing until I could get him to the nearest hospital where someone could help him. Many times I have had to hand him to someone else so he could get the help he so desparately needed, help I could not give him. Each time I held my breath hoping and praying that he would be given back to me.

Now, in just 2 days, Micah will be 2 years old. He is strong and healthy, active and playful, sweet and loving. I know we still have many more adventures ahead, some in the near future and some many many years down the road. I know giving my son to another person will never get easier, but I know God is watching over my little man and that He is faithful in His love and care of my son, His precious gift to me.

Happy Birthday my darling boy!!!