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Friday, August 26, 2011

Don't even know where to begin.....

I am just on edge right now. Just clarify things. The majority of CHDs can not be "fixed". I just want to scream when people come and ask " how is your baby?" and the when I reply good, they say "well at least it can be fixed." Well the Drs can't magically go in and make her grow an entire ventricle, that can't say abracadabra and give her a tricuspid valve, they don't have mystical tools that go in and "fix" everything. A friend of mine wrote today and said she was praying for us that we (her son is 2 months older than Brin also has a CHD) are so fortunate for our children to be born in an era where there are constantly new and innovative ways to address heart disease. And that is just it! These issues are addressed. Brinley will need constant care for her life time. Her heart will be restructured so that it can function the best way that it can. My friends son had intervention shortly after birth and he is only 5 months old an they are already having to discuss going back in for another. I feel so lucky to have this opportunity to be a mother of a life that has completely changed mine. I want everyone to read and follow my story and let it help you not to take things for granted. I look back on my other girls and I think to myself, I wish I would have to took more time do this or took some moment to think to myself "don't ever forget this moment because you may never get another". I mourned my perfect baby the last four months of my pregnancy but ya know I just got a different baby completely perfect in a different way. You guys see pictures, would you really trade that smile for anything? NEVER! My friend said that the Medical staff told her before a procedure once that her son will never remember any of this and her thought was "no, but I will".  So many times I have wanted to grab Brinley and just run away. I have seen things that are forever burned in my mind. Things that make you want to drop to your knees in sadness and hurt for your baby. I held her after giving birth for five minutes and some where inside of me I had to find the strength to do it because I was afraid they were going to take her away and I would never see her like that again, my perfect baby. She was 10 days old before I was able to hold her and smell her again. Even with all he the lines I held as tight as I could. When you can only go 1 foot in either direction with your baby for days and then finally get to go home with after 21 it really is hard to ever put them down. Today, Brinley started out having a good day. Around 3 o'clock I noticed a change. Her cyanosis was sitting in to a level j had never seen. She was clammy, irritable, lethargic and her saturations were in the 40s. She was already on oxygen and she was bottoming out over and over consistently. The nurses could not find the dr. When she was located she on emergency in the NICU. She responded to Brinley's call order her to have a IV put in by the cardiac anesthesiologist to help with immediate intervention if she needs it. We still have no idea why is dropping so quickly. The Dr looked over echo on Wednesday and has decided to cath her in the morning. She optimistic that this will bring is closer to answers. Brin is now resting comfortably on 2 liters of oxygen and keeping her sats in the 80s. Please say a prayer for her tonight and hug your babies for me. 

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