Wednesday, October 24, 2012

October 26, 2012- One Year Later

One year ago they wheeled you away on a bed that was way to big for you. I kissed your forehead and promised you, promised myself that I would see you later.  I watched you look back at us, I watched you look back as if to say, where are you going? Why aren't you coming with me?  I didn't want to let you go, I didn't want to let them take you.  I wanted to grab you and run out of that hospital, but I knew I couldn't, you needed to be there, they needed to save you.  A week earlier your health started to fail, you were "failing to thrive" as the doctors put it, the surgery needed to be done as soon as possible.  We were going to the cardiologist sometimes twice a week and to the pediatrician at least once a week, we pretty much lived in doctor's offices.   The holes in your heart wouldn't repair on their own, so they needed to cut your tiny little chest, they needed to put you on a heart and lung machine, they needed to patch the holes in your heart. 
That day was the longest day of  our lives, I can vividly remember every moment of that day as if it was just yesterday.  I remember handing you over to the doctors, I remember screaming inside, but I didn't want you to see me upset so I smiled at you, kissed your forehead and broke down as I saw the doors shut with you on the other side.  There was nothing I could do now, what if you were scared, what if you were crying, what if you needed me, there was nothing that I could do.  You were laying in that cold operating room with all of those machines, you were probably cold, you were probably frightened and I couldn't be there to hold you, I couldn't be there to tell you that it was going to be okay, I couldn't be there to wipe away your tears.  Minutes felt like hours and hours felt like days, not knowing was agony, 8 hours of surgery, 8 hours you were gone from me, 8 hours I couldn't help you, I couldn't save you. 
The doctor's came out dressed in their scrubs, all I heard in the next few minutes was "She is doing good, the surgery went well, and you can see her in a few minutes."  I didn't hear anything else, the explaination of the surgery is a blurr.  I remember thanking God that they saved you, thanking the heavens and anyone else who was listening that you were going to be okay. 
When we walked into your room, I was going to turn around and walk out because I thought we were in the wrong room, it was only when the nurse called you by your name that I realized it was you.  You were so swollen and orange from the iodine, you had so many tubes and wires coming out of you, I couldn't see my baby anymore.  Oh how I just wanted to scoop you up into my arms and love you and snuggle you but I couldn't, it would be too long before I was able to do that. 
The next 8 days would be long and exhausting both emotionally and physically. Daddy and I never left your side. You were doing so well, until they gave you your first dose of morphine.  Your little pink body and face started to turn blue right before my eyes, and you were gasping to take a breath, I heard you inhale then exhale then I didn't hear anything else, you had stopped breathing.  I have never been so scared in my life, Grandma and Grandpa had arrived just as this was happening, I think they aged 25 years before my eyes.  They had to insert the breathing tube again.  They saved you again, they got you breathing again.  The beeps and sirens of all the machines in your room, I will never forget those sounds for as long as I live. They would beep when your heart rate would drop and doctors would come in to check and make sure you were okay. 
I am grateful to all of your doctors and nurses for the wonderful treatment they gave you, they saved your life, they saved our lives, I can never repay them for such a wonderful gift. As the days went on the tubes and wires were removed one by one.  Each and every day you got stronger and stronger. I will never forget the day they nurse told me I could hold you again, they had to tuck all your wires in and hand you to me.  It was so wonderful to hold your warm body against mine again. I was scared you wouldn't know me, I was scared you would hate me for leaving you that morning with strange men and women dressed in scrubs.  But you knew me, and you didn't hate me, you fell asleep in my arms that night, and I have never felt so content and happy in all of my life.
By the 8th day the doctors said you were ready to go home, your little body had endured so much, I was afraid to take you home.  It was such a wonderful feeling walking through those hospital doors knowing we were on the other side, we were going home.

I cried the a lot that week, I cried more tears than I thought was possible.  When we got home it was hard, I was afraid, afraid I would hurt you, afraid you were too fragile.  But each and every day got easier and easier and we got through it all.  You were a new baby, you had become the baby I believe you were born to be, you had strength, energy, you yelled, you cried.  Before the sugery you couldn't cry your body was too weak, so we had never heard you cry, not once.
You began physical therapy and speech therapy in November.  Each and every day you have been proving to everyone just how truly wonderful and strong you are.  You are eating better, you are sitting all by yourself, you are doing the things that some doctors said you may not do.  It is going to take you longer than most babies and you may have to work a lot harder than other babies but that is okay with me.  You take your time, you do things when you are good and ready.  I am so glad that the surgery is behind us, and your cardiologist appointments have become yearly visits instead of monthly visits.  We are thankful that we were able to get through it all even though at the time we had no idea how we would.  We are thankful for our true miracle, our gift from God.

Tuesday, October 23, 2012

Fortune Cookie Soap

Just joined fourtune cookie soap soapbox subscription.  You get a box every 3 months filled with some of their products.   I have heard such good things about this company and can't wait to get my first box.  I will do a review of the products when I get them and try them.

Thursday, October 18, 2012

Worries, Halloween, Holidays Oh My

The future looks bright, the future looks exciting, the future scares the crap out of me.  I started to worry again yesterday, which I guess one does when they are a mom.  I am already worrying about my daughter, already worrying about how people will treat her, already worried people will not accept her, worried they will make fun of her, worried they will mistreat her because she is "different" according to their standards.  We are looking to move to a place that has a fabulous special ed program before she is of school age, we thought we were in a great place, but according to her therapists the school district is going to start making things extremely difficult and they are leaning back toward self contained classrooms.  I do not want her in self contained, I want her to be in regular ed, I am a teacher prior to being a mommy and I can see the perfect setting for her in my head and somehow I know in my heart that it is probably not a reality.  So we are looking at different states now deciding what we will eventually do, if you know of any information about your state please let me know.
On a lighter note, Halloween is coming and I couldn't be more excited, my daughter is going to be Minnie Mouse and my son is going to be Boba Fett (some Star Wars guy)  I didn't get to do a lot of things I wanted to do this fall, so I decided I am instead going to get a headstart on Christmas, crafts, gifts, stockings, it is going to be fabulous.  What things have you been up to this fall? What are you looking forward to this holiday season.  Leave me a comment. 

Thursday, October 11, 2012

Our First Buddy Walk

I was so happy to attend our first Buddy Walk this past weekend. We had a very nice time, it's like you get an invitation to be a part of this group that you never wanted but are so happy that you did. All the people are wonderful and we had such a blast walking for such beautiful special people.