So we'll be heading to CS Mott Children's Hospital in Michigan Thursday, January 31st. The next day we'll go to the Cardiologist for a pre-op then we'll have the weekend off. Then bright and early we'll go in Monday. I'll hand Blake over to the Lion's I mean Surgeon's and hope for the best. I talked to a social worker in Michigan it was late in the day she said she;d help me work out transportation for Blake and she'd call me tomorrow and let me know what she found out.
I wish I could close my eyes and wake up and this was all just a horrible nightmare. I didn't want to watch my babies heart beat inside his chest last time for five days they left his chest open because of swelling. I think about that mental picture alot lately again. It's not fair when they closed his chest he was 9 days old. At that point in his little life he had been sedated more than awake. Before he's seven months old my baby will have gone through 2 open hearts, a gastro feeding tube plus nissen, and 2 caths. . . AND who do I feel sorry for myself. I feel like the big baby latley I walk around listless and numb living inside my head. I know I should enjoy Blake this next month as much as possible. A part of me wants to leap from my depressed body and kick my own depressed butt and tell myself to stop being such a mope. This is so much easier typed then actually done.
I love my baby I know I do. I look at him and think how the hell did I help create something so heavenly. But sometimes when I'm preparing milk that will go in a bag instead of a bottle or when I have to untangle heart monitor cords and oxygen lines just so he's not so tangled he'll reach the changing table I wish I could pull out a remote that would pause the whole scene. I'd take one last look at Blake and run. I'm not saying I feel like escaping all the time but I have moments. Well I'll try to update everyone as I found out more information.
I just hope I'm doing the right thing by going to Michigan instead of staying and letting Kosair do the open heart. The scary thing is absolutely no one can tell me for sure.
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12 comments:
Whitney, you are an amazing woman and mother. You are doing everything you can for your baby. You are in my thoughts and prayers.
My heart goes out to you. You are in my daily prayers. it's ok to feel selfish. I can't begin to imagine how you must feel. Take care of yourself. Blake needs you.
Whitney, I admire your strength. You are a fantastic mother and doing everything you possibly can for Blake. The feelings you are having are exactly what I would picture myself having if I were in the same situation. Take time for yourself and remember to take care of yourself. Poor Blake has been thru so much (as have you!). You are in my thoughts and prayers.
Whitney, oh dear, I will pray for little Blake! I live in South Bend Indiana, which is about 2-3 hours from Ann Arbor. If you need a place to stay either on your way there, back, or just in general my home is open to you. I have a very cozy guest room. and much tender loving care to give.
Let me know.
XOXO
Amy
Whitney,
I only know to well what you mean about handing you baby over to Lions. That was the hardest part of Noah's surgery. That was when I really lost it and realized my son was having open heart surgery. I cannot imagine having to go through again. My thoughts and prayers are with you guys. Give little Blake a kiss for me and here is a huge hug for you. Take care of yourself.
You all are in my thoughts and prayers. No mom should have to see their child that sick...you are entitled to feel anything you want.
You are going to a place where they just know more about kids with WS. I am so sorry that you have to go through this. I wish that I was closer, I would be there for you. It is so scary to be where you are. I have felt like running away myself so many times. Don't beat yourself up about that. You are a great mom. I still hope to be able to meet up with you in a couple of weeks. We will just play it by ear, but I at least want to stop and see you in person for a second to give you a hug!I think about your family and pray for you all the time.
Noel
They are all right Whitney you are amazing!!! I hope I can get to see you in Feb but it may not work out with all that is going on....I am always a phone call away any time....Hang in there :) XOXO
I have a friend who has taken her son to MI and saw a ,Dr. Bove, whom she LOVED. I have asked around in a support group I am in to see if there are any other drs to seek out or ones to stay away from. I will let you know if I hear more :)
Hang in there!!
Noel
P.S. We lit a candle for Blake today, me and Erik. It's still burning and has been going all day.
im in such awe of your incredible bravery, you are not being selfish at all - in the long run Blake is too young to remember any of this anyway(thank goodness) so it you who will take the longest to heal. Take time for yourself where you can. My prayers are with you all.
xxoo
Whitney,
We are thinking of you and Blake. I can't imagine what you are going through right now. Please know our thoughts and prayers are with you. Give Blake a hug for us,
Camille
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