Thursday, September 8, 2011

September 8, 2011

The past four and a half months have been the most difficult time of our lives. Not many people experience having a baby the way that we have. Since Alexander was born so early, I never really experienced the kicking while he was growing inside me. I have not been able to experience breastfeeding, and still have not slept in the same building as my beautiful baby boy. I always imagined that I would have my baby, and a few days later we would be home.. snuggling in bed and watching him grow. I listen to others talk about how they don't get enough sleep because they are up with their babies. I wish I could say I have had that experience. I don't get enough sleep because I am always worried about my baby. I can't get up in the night and look over to see him sleeping, or even crying. In the past four months my baby has had to fight death twice. However, my baby is a warrior. He is the strongest human being I have ever met, and he has turned death away. Last week, the doctor came into the NICU and told my husband and I that he didn't expect to see Alexander that morning. This is the same doctor who was there the weekend Alexander was born and told us that he didn't think he was going to make it then either. We called on the prayers, love, and support of everyone we know to help us through this amazing difficult time. My family dropped everything in their lives to travel the many hours and be with us and Alexander. To let him know that he is loved and needed in this world. He heard everyones prayers, and he fought his toughest battle... and has been stablized. After facing the possibility of him dying not once, but twice, we have come to a difficult decision. Tomorrow Alexander will get a tracheostomy. This is not what we wanted for our little boy. It is not what any parent wants, however, everyone says it is the best thing for him. The trach will be in place for as long as needed... but we are looking at about two years. The good thing is that he will be able to come home on a vent. The doctor told us today that we still will not hear him cry for a while though, not until he grows more and becomes less dependent on the trach tube for breathing. He is now five and a half pounds, and it breaks my heart to watch him grow in a hospital. It becomes harder each day to leave him and know that I will not come home to him at night. 133 days in the NICU and still counting... and it is exhausting. So we now start our next journey... one that hopefully will bring our baby home so that he can grow surrounded by love of family, and not the sounds of hospital machines, the frequent blood checks and foot pricks. Please continue to pray for and send positive thoughts to Alexander. His war is far from over and I am sure that all the thoughts is what allowed him to defeat death last week. Thank you... from the bottom of my heart for all of it. A special thank you to my family for reminding me the importance of family... and the Kristin (once a mother) for being there for me when I needed someone to understand.

Alexander Merlin. Sunday September 4, 2011.

Alexander two weeks ago... during a tube change with nothing on his face.

A visit from family and love from his Aunt and Uncle.

6 comments:

  1. All the very best for your battle and with each day becoming stronger and having faced another day

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  2. I just LOOOOOOVE seeing these pics of your beautiful boy. I know that this is not what you wanted (the trach) but baby's are amazing in how they adapt to what life throws at them, and I am sure your little Alexander will do just fine with it for the time that he needs it. How lucky he is to have a mother who is strong enough to make these tough decisions for him. The RIGHT decisions for him. You are doing a great job Amanda. I CAN NOT imagine 133 days in the NICU. You, too, are a warrior. It's no wonder where your little boy gets it from. You all are in my prayers tomorrow. I know Alexander is going to do great, but I also know how draining the wait will be for you and your family while he is in surgery. Know that there is a huge community backing you, and praying for and with you all. Here however/whenever you need. xoxo

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  3. I am praying for you and your family. You have a beautiful little fighter.

    (came over from Kristen's blog)

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  4. offering prayers for your little boy today and the days forward.

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  5. All of you are warriors! You have given Alexander everything in terms of love and support and his ability to fight and continue improving is a testament to that. My prayers are with you today and always as Alexander goes into surgery. I am sure the trach was a difficult decision for you and I am praying that it will allow Alexander to be home soon!

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  6. Life isn't always what it should be and, sometimes we're faced with decisions we shouldn't have to make. I hope with all my heart that your little warrior will be home soon. My thoughts are with you and your little Alexander. Stay strong.

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