The Perfect Storm

If I had written this a week ago I might have titled it "Smooth Sailing...", but this week a number of circumstances came together to create "the perfect storm" that rocked our little boat quite a bit.

We were sailing along - doing well enough that Nathanael's doctor thinks we may be able to go "home home" (to Texas) in early March instead of late March - until our little guy began to eat less and less. His labs showed that his kidney function was somewhat diminished, not enough to normally be of concern, but an issue for him because of the number of medications he still takes every day. The bottom line is that he needs adequate food (fluids) in order for his body to properly flush his kidneys. So when he went from 70+ minutes of nursing each day down to less than 40 minutes, we were obviously concerned.

So what's going on? We suspect that he's been teething for the past month, but that it has gotten much more intense in the last week. Teething often causes babies to nurse or eat less often, and for a normal infant, that's not a big deal...they'll self-regulate and eat as much as they need. However, as I mentioned above, Nathanael doesn't have the luxury of choosing not to eat and being okay. He needs to stay fully hydrated!

We also know that as the doctors wean him off the steroids he's been taking for the past 7 weeks or so his appetite will change. Steroids tend to cause an increase in appetite, so it makes sense that as he has lower levels of steroids in his system he will want to eat less often. My first thought in regards to that was that we should wean the steroids more slowly...but really, why would I want to subject my son to the effects of medications for a moment longer than the doctors deem necessary? Just because nursing is easier for me than tube-feeding? Certainly not.

Oh, and then we spent two days last week in the (outpatient) day hospital that were each 8 hours long...back to back! We normally have a day in between appointments, but the schedule this week was different. That interrupted his sleep, so he did not nap well at all on those days. While I might eat regardless of how tired I am, some people tend not to eat as much when they're tired...so that could have had an impact on his consumption this week.

So, in order to keep him hydrated we have increased the amount of milk he gets each night through his feeding tube, which in turn could cause him to be less interested in nursing. Like everything in the treatment regimen here, the goal is to find a balance between the two types of feeding. For me, this means nursing him as often as he will nurse, and also making/finding time to pump so I have 15 oz. of milk available for him each night. I'm so glad I have my mom here to help with cooking, cleaning, and baby-holding so I can get everything done! (Of course, I'm also thankful for my dad's help each weekend, and for my mother-in-law's help in Texas, as well as the many friends who continue to support us through this time.)

So, for those of you who read my recent Facebook post, I AM thankful for pumps: the feeding pump, the breast pump, and the medication pump, as despite their inconveniences (loud beeping, etc.) they all play a role in my son's recovery, and enable me to care for him at home.

Despite the situation I've described, Nathanael continues to do really well. His blood counts continue to improve, he shows no signs of Graft vs. Host disease, he is doing fantastic with regards to normal developmental milestones, and he is a happy little boy. The doctors expect him to have a fully functional immune system in another year or so, which is really exciting. Praise God as He continues to answer our prayers in ways we could not have imagined!

I've included a few pictures to show how much both of our little boys are growing up! I hope you enjoy them - even the ones that turn sideways, despite my best efforts to fix them.

(Oh, and you also might notice that Nathanael's cheeks are growing, and his eyebrows are getting darker. Both are temporary side effects of his medications.)