Thank you to everyone for the wonderful notes and posts. It does mean a lot to both Michele and I to know that there are so many people thinking positively about Riley.
Riley's billirubin levels were a little high so they have her under a special lamp today - she is getting her first tan and actually wearing a eye shade that looks like sunglasses. This is very normal and in fact her big sister had to be 'slow-roasted' in the window as well.
One thing that I didn't get into with my last post is that the heart issue that Riley has sometimes manifests itself due to an issue with the 22nd Chromosome - it is called DiGeorge Syndrome. There are many many different things that can be associated with DiGeorge Syndrome - from what I have found/read up on this website has a good clearinghouse of information: http://en.wikipedia.org/wiki/DiGeorge_syndrome (yeah, I know it is wikipedia). They are doing the tests to find out if Riley has this. If so, we will find out as much as we can about it and deal with the issues that arise. From my understanding the main course would be to fix each of the problems as they come. But we have to wait and see if this is an issue yet.
Michele and I are still alternating between positive and upset. Michele is fighting some internal demons that she knows in her head are incorrect - she feels that somehow this is her fault and that if she had been able to keep the baby through 40 weeks it would have been better. Again, she knows in her head it isn't true and I continue to tell her, but I know it is something that she will fight with every day. I feel awful for my little one - she is finding out that her hands can work and she is constantly pulling at all of the little tubes that she has in/on her and now she is in darkness due to her fancy sunglasses. I know in my head that her eyes don't really see much right now anyway and that the pulling on the tubes is a natural reaction - similar to us swating at a nat, but it hurts me to think that she might be scared and that she doesn't understand that we are trying to get her better. The worst feeling as a parent is knowing deep down that this is not a scrape or a bumped head or even a bleeding cut that you can fix - we can't do anything for her (even feeding our little one) and we are reliant on others. It is not something that I would wish on my worst enemy.
Love and thanks to everyone.
I know it's difficult at times to think of the positive, but how lucky are we that doctor's have the technology and knowledge to help her! Keep holding each other up & look to family & friends when you both need that extra support! We love you all! xo
ReplyDeleteThank you for the updates. It is my connection to you and I am existing for the news you post. I am so glad Dad is on his way so he can provide support. I am here if you need me. Hang in there. I love you all. Can you feel the giant hug I am sending through this blog? I hope so. Love always, Nana Rose
ReplyDeleteHey guys
ReplyDeleteI was born with a broken collar bone, had blood poisoning and survived multiple kidney and bladder surgeries as an infant. I had all the tubes and the machines and was even tied down to the bed so I wouldn't pull the tubes out of my side. As tramatic and terrifying as this was for my parents, I do not have any memory or recolection of what I went through. The only thing that Riley will have are the physical scars and that just makes her special....like her Auntie :) I know this totally sucks right now. BUT, you will get through it, it will make you stronger and your beautiful new daughter will live a happy life. Love you.
We will be praying for all of you!! As long as you have each other - you will always be fine!
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