A week in the life

Even though we haven't had any major crises with Eliza lately, things have been tough and its been a struggle to find the positives. It's been exhausting and overwhelming so we haven't done a good job of keeping the blog updated. A summary of the issues we have been dealing with..

+ Failure to thrive - you can get a good look at this in the chart Glenn previously posted. Eliza had one good week of growth and then has stagnated the last couple weeks. There are lots of hypotheses and reasons being discussed for this problem including: high metabolism (is she really my daughter??), too much energy being expended (having to work hard to breathe and keep warm due to her size), decreased absorption due to her ileostomy (though hers is very low in her small intestines so in theory this shouldn't be a significant factor), other complicated chemistry factors (ex. her sodium and potassium levels), and just the repeated needed pauses in feeds due to other treatments. (One possibility that was eliminated was low calorie milk -- they ran a test and found my breast milk to be 27 calories/ounce. This is quite high considering "normal" milk to be 20 calories.) Her weight gain issues seem to be a combination of all of the above and there are lots of things being tried and discussed to attempt to help but its such a complicated situation that no one really knows exactly what's needed to help her..........This problem is her single most significant issue since it is the linchpin for everything else getting better.

+ Osteopenia of prematurity - girl's got weak bones. This condition is another lesson in chemistry that I don't think I will go into great details at the moment. Basically it's related to her growth and mineral absorption...and so she's at a high risk for bone fractures.

+ Blood transfusions - at the beginning of her life she had several transfusions (which were expected) but now that she is older she should be starting to make her own blood cells. For the last 3 weeks she has needed a transfusion every week. Each time she receives one her body misses another chance to make its own cells and it puts excess iron into her system. Her feeds are also stopped for 12 hours and decreased for another 12. Without the transfusions though her heart has to work very hard and her kidneys don't function as well. One way to make this better? Growing!

+ Hydrocortisone - Baby's got a serious dependence. This is a steroid that her body should be making on its own but in preemies it has to be supplemented and, like the blood, the more you supplement the less the body makes. Her renal functions are dependent on the hydcortisone levels and as they try to wean, her kidneys stop functioning as well. High levels of the steroid inhibit growth.

So 100 points for you if you can spot the vicious cycle in all of this.

All of the issues make it difficult to grow and yet she needs to grow to get better. Awesome.