Nicole's St. Louis Update 9/1/10

When I visited Wrenn today, I sat in my chair four feet from her bedside and realized that the medical equipment was literally taking over the room. The pole that holds her medications is overflowing with four different types of sedatives, electrolights, two antibiotics, calorie additives, breast milk, a nebulizer called Flolan and I'm sure something else I've missed, not to mention the medications that are administered through her broviac a couple of times a day.

The larger machines include a ventilator, N20, TPN (blood gases being monitored), and various cords taped to her chest registering vitals. It's madness in the room but when I look into her eyes I only see my beautiful little miracle, Wrenn. Sadly, after last week's infection I haven't seen her pop open her green eyes more than once a day. I haven't held her since last Monday. Due to the urging of my nurse, Angie, I decided to see how Wrenn would tolerate a little bonding since I knew we both needed it.

With everything I listed above, it took two nurses and a respiratory specialist to move her two feet and into my arms. Shortly after getting situated her oxygen quickly dropped from 95 to 40. They called in the doctor and realized she was pressed up against the side of her lung that is clogged, most likely from excess secretions. Once we repositioned her she recovered nicely. Then, thirty minutes later, she was gasping for air and her oxygenation again fell to the 40's. I found myself holding a Smurf and panicked as she struggled with each breath. It was the worst feeling in the world and probably the worst moment of her entire disease. She was blue, and I felt like I was strangling her to great discomfort. I asked to put her back and watched the nurses get her settled to a comfortable position. Within minutes her oxygenation returned to the 90's.

It is horrible, realizing that holding your daughter makes her miserable. I realize that sedation is necessary when warranted and that she is a very, very sick baby. Her lungs are not going to work, even in the very poor way that they do, much longer. So, I have decided that the benefits of holding her don't outweigh her health and this saddens me like you can't believe. There is nothing natural about seeing your child cry and just letting her cry until she is drugged back to calmness. Nothing is normal and it all breaks my heart. I keep praying that she will one day breathe on her own, one day cry over something for which I can provide comfort, one day swim in the ocean and just be a normal little girl. Days like today make me feel as though things are many moons away.

Helpless is how I have felt for many months. Now I am frustrated, angry and feel like I have hit rock bottom. I keep saying it's temporary. I pray for a tomorrow. I hope there's a next year. I really work hard to keep my head held high. The bottom line is, when Wrenn has a good day, so does Mommy. I always prefer the good days because the bad days are becoming unbearable.