Saturday, August 27, 2011

This week was a different feeling for me. I got really angry. The kind of anger that makes you scream alone in your car and you look like a crazy person. People that know me would probably say I'm very mellow but something got into me after I dropped my husband off at the airport. I think anger is good because I have felt very defeated over the last couple of weeks. Anger makes me feel strong.

This experience has felt like I am in the ocean, the waves keep pummeling me and it is getting harder and harder to stand up. First wave, spina bifida diagnosis okay this is scary but we can handle it and I stand back up. Second wave, I have complications from the prenatal surgery and I'm told it would be dangerous for me to have another child okay we can always adopt if we want more children and I stand back up. Third wave, my water breaks at 25 weeks and Andrew is born at 27 weeks okay thank God he is alive and I stand back up. Fourth wave Andrew is having a hard time and it is destroying me watching him struggle okay this time I'm barely standing up. Fifth wave Andrew is diagnosed with Tracheobronchial malacia, we are told he may need a trach and we will be in Philly for another 4 or 5 months okay this time I have had it with the ocean and I'm getting out. I'm sick of feeling pummeled. Andrew needs me to be strong and to stop feeling so defeated. I have never asked why me because Andrew is such a gift and I'm grateful God chose me to be his mom. However, I have asked why can't things be easier for him? Why does my little guy have to struggle so much? This experience in the NICU will never be one of those things I look back on and think "oh it wasn't that bad". It is that bad but I won't let it defeat me. I hope the anger stays with me while we are here. I feel like I'm more in control. I will stop feeling like a victim of our circumstances and I will be the best advocate for Andrew I can be. I need to be as strong as he is.

As far as an update on Andrew they have him sedated and on the vent until the end of Sept. This will allow him time to grow and get even stronger. They are going to do a bronchial scope the last week of September to see where we are with things. If he is stable enough I have asked the hospital to life flight us to the NICU in Denver, CO. I think being with my husband in our own home will make this a little easier. Of course only if Andrew is stable enough for the trip. Like I said I'm going to start making decisions instead of feeling pummeled all the time.

Thank you for the comments last week! They were all so sweet! I really appreciate people reading this and I also appreciate the comments people leave.

I'm still trying to figure out how to post pictures. If anyone reading this has an IPAD and knows how please let me know.


6 comments:

  1. My heart goes out to you! The NICU was traumatic enough for me, and you've been through quadruple the ringer that I went through! I like the idea to get back home when you can. 2 suggestions: 1. Start now researching Denver's children's hospital (which I have heard good things about in general) and the NICU and doctors. I'm sure it will not be as good as CHOP, since CHOP is the best in the country, but the benefits for everyone of you being closer to home may far outweigh any of that. 2. Ask the social worker if there is anyone you can talk to while there. Whether it's another parent or a chaplain or a counselor. This is a traumatic experience for you, and if you don't fully deal with it now, you're going to be carrying it around for years. It can change you. So please take care of yourself, both physically and emotionally. Lots of love,
    Colleen

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  2. Bless your heart. Thanks for the update and sharing your thoughts. Now I know how to pray for Andrew and YOU. Praying are being lifted up for you and your family and Andrew's docot's in KY. Take care of yourself. Reach out to others . You are not alone in dealing with a sick child.

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  3. Hi Kelly, I waited a few days before posting a comment. I hope lttle Andrew is continuing to get stronger every day. I don't blame you one bit for getting angry. In fact, it is probably better instead of letting it continue to build inside of you. I think it is a good idea to perhaps lifeflight Andrew to a good hospital in Colorado. There has to be an excellent hospital there and you could be with your husband. I will continue to pray for Andrew, you, and your husband. I hope this week goes a little better for yourself and Andrew. Jane Morgan

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  4. Jenny from the blockAugust 31, 2011 at 8:47 AM

    My dearest Kelly... You have every right to become angry... It's a real & raw emotion that can help you feel more alive in this fight! Hold onto Mike when in that ocean of continual waves! Praying for you everyday & night! Love you friend...

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  5. Hi Kelly,
    I hope you are figuring out things to get to Denver. I am headed to Philly Tuesday to meet with doctors. I could possibly be in your shoes soon. Anyway, I am actually typing to you on my iPad and have emailed pictures to my blog. You need to set up an account in settings on your blog under email. You put in your user name and a secret word to @blogger.com. Once that account is established it's so easy to post pictures. Hope that helps. I am going to follow your blog. None of what you are going through sounds easy. Hang on to hope and we will pray for Andrew in VT.
    Annie
    Annie

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