VB Family Updates

posted by Katie

A week with Nathan

Slowly but surely Nathan is making his way back to the normal challenges of being a preemie. A lot of good things happened this week to keep Nathan moving forward.

First, Nathan’s blood cultures started coming back negative. The blood culture from March 4th took over 48 hours to grow out, indicating that the bacteria load in his blood was greatly greatly reduced, and since then each day’s culture has been negative. Yay! Because of his central line and the remaining pieces of clot, the doctors have to assume that there is still bacteria in Nathan’s body, but it’s not throwing a party in his blood stream like it had been.

Nathan also started effectively losing the extra fluid that had build up in his body over the past week due to his infection and all the medications and blood products he was receiving. Each day he was beginning to look more and more like President Taft (the one who got stuck in the White House bathtub) but now with each day he looks more and more like himself. Nathan has been losing a few ounces of excess fluid every day. Right now he weighs about 5 ½ lbs – his doctors estimate that when he’s done losing fluid his “dry weight” will be around 4 ½ lbs.

On Sunday, for the first time since he got sick, Nathan’s platelets increased all on their own. We must have sounded like parents whose child has received a free ride to their top college we were so excited that “he made his own platelets! he made his own platelets!!” And being the brilliant kid that he is, Nathan’s platelet levels have continued to increase each day.

And last but not least, he has been “weaning on his vent” – doctor speak for needing less and less support from the ventilator. Before he got sick Nathan was breathing just fine without being on a ventilator so we can’t wait for him to be off it again.

This week’s big challenge has been Nathan’s PDA (Patent Ductus Arteriosus). If you remember back to high school biology all babies are born with an open duct in their heart which closing within a few days after birth. This duct often does not close in preemies. If it remains open too much blood can travel to the lungs, causing lung problems, or not enough blood can travel to the stomach, causing digestion issues. In Nathan’s case the duct remained open, but with everything else that was going on, getting it closed was not a top priority. Now that he’s on the road to recovery, being able to breathe on his own and eat are important steps, and neither of these can happen with the PDA. First step was medication, but the doctor’s didn’t have high hopes since it is often ineffective after 2 or 3 weeks old and Nathan is nearly 4 weeks old (can you believe it?!). Yesterday Nathan had a heart echo after one course of the medication and it showed that the PDA was unchanged, so they will have to close it surgically. We had hoped the surgery would be tomorrow, but it looks like the surgeons are too busy, so we’ll have to wait until Monday. It’s frustrating to see a key step in his recovery pushed back three days, but we’re trying not to be impatient. Among other things, this whole experience has taught us that life in the NICU happens in its own time - quickly for emergencies, not so quickly for other things.

And then today had a brand new challenge – namely that Nathan is getting to be himself again. And that self is a little boy who does not like to be bothered. Nathan’s been on pain medication for two weeks now, so his body is becoming accustomed to it and it is becoming less effective. Nathan is also starting to feel better and so is more active and attentive. Put those two things together and you have a little guy who has finally noticed he’s got a breathing tube in and is not at all pleased about it. It’s uncomfortable and we’re certainly Nathan thinks it’s unnecessary, so he had a pretty grumpy day and really struggled to settle down. And of course, he tried to pull the breathing tube out a few times.

So that’s been our week. Very different than last week and for that we are very thankful.

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