NICU Journal - October 11, 2003

Note: This is the continuation of a chronicle of the girls' NICU journey which began at their birth at 26 weeks gestation on August 31, 2003. They are alive and well today.

On October 11, 2003, I sent out the following email to family and friends:

Hello, Prayer Warriors!

Your prayers and sacrifices have made a world of difference in our ability to navigate through this journey called neonatology. Thank you. Please keep praying. It truly helps. I have learned this last week that God delights in details and so I will continue to ask for my hearts' desire for my girls, but be at peace that His will is supreme. The God who made my heart KNOWS its desires. I give Him my entire heart, even if it is sometimes in broken little pieces.

Mary Jo is doing fine still back in the same room with Annie. They are watching to see if she has an infection and treating her with antibiotics, but if she does, it's not too severe. She was de-intibated back to the nasal cannula, but is back up to the CPAP because she was still working a little hard to breathe. She sounds a little raspy when she breathes in [inspiratory strider], but that is somewhat "normal" for a little one who's been on breathing machines of some ilk her entire life. She has cleverly realized that if she gets "too good" they'll boot her back to Intermediate. She is starting back on her breast milk, slowly again, and I'm hopeful. I got to hold her
on Friday and she is just precious. She weighs enough now that she can wear clothes [body temperature control is connected to the baby's body weight] and I think I might just play dress up with my Mary Jo. If she were fighting a war, it would be "Operation Just Cause".

Annie's battles are more akin to WWII--multiple battles on multiple fronts. Her breathing is pretty good. She's doing well on the jet ventilator and they are adjusting her settings as her breathing and blood gases warrant. That PDA is still open, but does not seem to be giving her major grief. She does indeed have a blood infection for which they are treating her with antibiotics. The docs started Annie back on the diuretic treatments and she's peeing like Seabiscuit. On the blood clot issue, we waited and watched one day, and it got worse. We began heparin treatments this week. Again, heparin will not eliminate the clots that are there but will prevent future clots from forming while Annie's body processes the ones that are there. Sadly, all the "experts" are telling us that Annie will most likely lose her left big toe and probably her left little toe. They are ghastly black looking little digits. The vascular guy believes that Annie had the blood clot in her leg for awhile before she started the major bruising that we noticed the morning of surgery. He thinks this because the ultrasound revealed avenues of blood flow around it. Now about the only way I can make sense of this is that if Annie had a clotting issue, the very LAST thing she needed was an invasive PDA surgery. We didn't know the clot was in her leg until the bruising appeared in just enough time to avoid being operated on. After surgery, you HAVE to clot. If you have clots being thrown around your leg, you HAVE to have blood thinners. These are mutually exclusive, and losing a toe or two is better than losing a life. I'll admit it. I cried at the thought of my perfect little girl appearing anything less than perfect. I decided that I will never again ask a parent of a newborn if they have "10 fingers and 10 toes"--what a peculiar hallmark of perfection! She has a spotless, baptized soul. That's her mark of perfection.

But the optimist in me came in and I have come up with some good things from the loss of a toe or two... 5. Mama can tell the girls apart without turning on a light 4. Nothing to stub 3. Ability to climb Mt. Everest without a worry 2. Discounted pedicures And the number one reason why losing a toe or two ain't so bad... 1. Prince Charming? Glass slipper? No problem! Go ahead. Laugh and cry. God's in them both. He's able to save her, head to toes, and in between. Please keep praying. Love-- Ruth Anne :)

What was happening: I was trying to make sense of Annie's leg injury and probable loss of toes as best I could. I was trying to maintain an even keel and not get too happy about one girl's progress or too sad about the other's seeming lack of progress. I was trying to be the Maternal Optimist. I was finding God in the journey.