Progress report and the protective nature of motherhood

Today marks the first full week for Theo's dialysis.  So far, there have been no major complications, which is a relief.  Theo is not eating as well as we'd like, so he is being fed by a combination of the bottle and a feeding tube.  He has been getting sick after almost every feeding, and it is so painful for me to watch when I can do nothing for him!  Today was a great day for feedings, though.  At his noon feeding he took 55 ml of the 65 ml bottle, leaving us with only 10 ml to put in the feeding tube.  That is the most that he has eaten since he started dialysis, and I am one proud mom!  Coming from someone who takes great pleasure in food, it is very difficult to watch Theo be "forced" to eat.

Milk coma

The nephrologists have slowly been increasing his dialysis fill volume.  They hope to get him up to 50 ml of fluid by the end of the week, which gets him a lot closer to coming home!  (He started at 15 ml.)  We still have a long way to go, but we are encouraged by the progress and by how well Theo is handling everything!

One thing I have figured out about myself this past week is that motherhood does trigger my protective nature.  One of the benefits that Theo is eligible for while he is in the hospital is SSI, which is a secondary insurance policy through Social Security.  I called the Social Security administration to schedule an appointment to apply for the benefit, and the woman on the phone said to me, "So, your son is disabled."  I quickly became defensive.  "No, he is not disabled.  He has kidney failure."  And I tried to convince her that I was not applying for disability but for SSI.  She then informed me that SSI is disability.  In another situation, our social worker printed out some of the doctors' reports for me to take with us when we apply for SSI, and the paperwork includes some nuggets of information such as "left foot deformity" and "low set ear."  I take exception with those bullet points!  Theo's left foot is not deformed!  It may be bent slightly too much in one direction, but that is just going to make him an excellent swimmer!  And then I have to remind myself to calm down.  The labels that the doctors and the government give his condition don't define him.   He has been created absolutely perfectly.

Nick and I are doing really, really well.  We know that our first two weeks of parenthood have been unique and would not be considered ideal.  But, it is also a really special thing that we get to go through together.  While I do not enjoy watching Theo suffer, we know that in the long-run all of this will be worth it.

Nick's sister, Hillary, flew into town to meet Theo over the weekend.  He gave her her fair share of serious looks.  She is great with him, and we can't wait to introduce Theo to his Colorado cousins once he comes home!

Theo exercising his serious face for Aunt Hill

If this is not perfection, then what is?

We still have a long road ahead, but we wouldn't change where we are right now.  Theo brings us so much joy, and we know that he is going to do some big things with his story in the future.  Hopefully that, and the conviction that God is at work, will sustain us through all the surgeries and complications that lie ahead.