Making Progress

Tuesday, May 12, 2009
So last night was hands down the worst night I have ever had since Kennedy's birth. Just a quick recap - we had a really rough day yesterday. Kennedy was intubated, her original PICC line went bad, then another PICC line was placed and that went bad, her blood pressure was sky high and then dropped dangerously low due to dehydration, and finally a central femoral line was placed and stitched into her groin at midnight. We were back at square one! Actually it felt worse then square one. I think this is because we now knew what it was like to have Kennedy healthy and breathing on her own and it was all taken away. My biggest fear was the vent. To me the vent represents everything negative about having a sick baby. It seemed like everything that could go wrong did and to top it off we were really butting heads with the all the medical staff. They are so perplexed by Kennedy that they just kept saying, "this just doesn't make sense", "why is she doing this - this is not normal", "I just don't understand". I mean did they read her chart - if so, they would have realized that nothing she does is normal, or makes sense, or is understandable. She is a medical mystery.

Last night after everyone left I was left to my own thoughts - which at times can be dangerous. I began to have a very hard time with this whole situation. I was feeling very insecure with the doctors and nurses and I felt like I was falling apart at the seams - I felt like I just couldn't keep it together any longer. I didn't know how much longer I would be able to hang - I was beside myself. I was scarred. I just wanted Kennedy home, it felt so unfair. I wanted to hold her in my arms. I could not even stand over her bed and look at her without sobbing like a baby. EVERYTHING was just getting to me. The noise of the vent as it blew life into Kennedy's collapsed lungs. Knowing that she had been sleeping for almost 36 hours without the assistance of any sedation medication. Seeing the 15+ marks left on her body from having to be repeatedly poked over in order fishing for a vein to place an IV. Knowing she was put through three medical procedures to place two PICC lines (which both went bad) and one Central Line. My chest was burning and my heart was racing....

But I am happy to say that I have the best support team behind me. Without the love of my friends and family I don't know where I would be today. Without my husband, Mom, and sister there for me last night I don't know how I would have gotten through this mental and emotional road block.

• Mom - you are the rock that holds are family together. I have learned so many valuable characteristics that have been so vital in getting through this rough time in my life. You are as close to Kennedy as I am.
• Ash - you are not only my sister but you are my best friend. You always provide me with such reassurance at times when I feel so lost. I love the fact that I can call you at anytime and you will sit there and talk to me for hours and hours.
• Brian - Without you I don't' know what I would do. You provide me with such balance. You make me remember that we need to see the positive and stay up beat. I think you might have even taught the entire NICU that it is okay to laugh in times like these - actually it is essential for your sanity. We have grown and learned so much about one another in this difficult time. Kennedy has made us such a stronger team. If we can conquer this we can conquer anything. I love you with all my heart.

Furthermore, I woke up this morning after 3 long hours of sleep (HA HA HA) feeling so rejuvenated and ready to fight as hard and as long as I have to for my daughter. Kennedy was doing a lot better this morning. Her color is looking better, she seems very comfortable, she was taken off one of her antibiotics, she is now receiving full feeds (no more IV fluids) and she is breathing above her vent settings - which is AWESOME. I am praying for this upward trend to continue.

Again, thank you to all my family and friends for all your prayers, e-mails, texts, comments, etc...I cherish and save them all. They are a great thing to have when I am needing a little pick-me-up or when I need reassurance that I am doing the right thing.