A Few Bumps In the Road

Before getting to Madeleine's updates, Kirsten and I wanted to say a quick thank you to all of the support we received from our last posting. We really are blessed-- not only do we have tremendously supportive friends but our network includes many that have been through similar NICU situations, who are currently NICU nurses, and/or doctors with tremendous insight into Madeleine's issues. Coupled with Kirsten and my background as former Special Education teachers, we know it was no coincidence that a child with special needs and a number of health challenges landed in our lap. If it takes a village to raise a child, our village was specifically designed to raise Madeleine. Thanks for everyone's contributions.


Alright, that's enough sappy talk out of me. Here's the update on Madeleine: The last few days have produced a fair share of drama related to Madeleine's health. On Thursday, Madeleine experienced "dumping" for the first time. As the name connotes, dumping is diagnosed when output into the colostomy bag is larger than 35% of the volume of breastmilk that the baby receives. In other words, if Madeleine is fed 10 cc's every three hours, the doctors and nurses expect to get around 3.5 cc's in the colostomy bag. We were warned that Madeleine would likely struggle with dumping as she approached full feeds and we were pleasantly surprised when she reached full feeds without experiencing any problems. Therefore, the doctors and nurses weren't overly surprised and/or concerned when Madeleine starting having much larger outputs early Thursday morning. When dumping occurs, food travels quickly through the intestines and the larger output results from the bodies inability to absorb nutrients and fluids in an efficient manner. The cause of dumping isn't always clear. Sometimes, dumping can be caused by a virus or GI infection-- the normal term is diarrhea. Other times with an ostomy, dumping can just occur when the GI tract becomes overwhelmed and, lacking an "exit door" to slow things down, the food just dumps out. Regardless of the cause, the immediate concern is dehydration. Madeleine hasn't displayed any problems with dehydration but they hooked up some fluids to her IV and will provide fluids on an as needed basis. Additionally, they backed off on feeding to 20 cc's. The modifications worked well on Thursday as they were able to stop dumping within the first 12 hours.

If that was the only drama involved, Madeleine would be back to full feeds and life would have been much simpler. Of course, simplicity in our life seems to have left with Madeleine's arrival. Early Friday morning, Madeleine began running a fever, started struggling with her breathing, and subsequent blood tests indicated presence of a fairly significant infection. The doctors took the following steps:
- they gave oxygen via nasal canula to stimulate breathing.
- they stopped feeding her breastmilk, providing nutrition through her IV.
- they started a round of general antibiotics
- they gave her tylenol to slow down the fever.
- they gave her a blood transfusion to help her fight infection and distribute oxygen more effectively.

Within 12 hours, Madeleine started looking much better and many of her symptoms were reduced. She stopped running a fever, her color returned (she looked gray on Friday morning), and she began resting much more peacefully. Today, most of her infection numbers are down and the doctors believe that the infection is under control. Once again, they aren't entirely sure where the infection originated. There are two likely sources: her ostomy site and IV as these are the two unnatural ports into her body. At this point, it doesn't make that much difference-- the key is that they get the infection under control allowing her to start feeding and making progress.

In any case, things seem to be going well. We're headed up to the hospital in a bit and I'll try to get more pictures. I'll also try to provide any further medical updates. Right now, we're hopeful that the infection gets under control as the surgeons would still like to operate next Wednesday with the caveat that all signs of infection must be eliminated.

That's all. Thanks again for your support.

Kirsten and Brent