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.