Parenting Lesson #1 – don't make promises
Oh man, I never should have promised an update. You’d think after 37 weeks of this I’d learn that any pumping done after 8pm is done while half (fully) asleep and thus not a great time for blog updates. Oh well – here we go. (there is no way this is going to be short and concise or terribly well composed...)
So on Saturday I neglected to gush over Nathan breastfeeding really well and taking 40cc in just 10 minutes before tiring out. It was amazing! (How do we know it was 40cc? Magic of the NICU. And actually, it was probably a bit more.) So that was a great success. He’s also been working on bottle feeding two times a day for the past week and has been taking at least 20cc pretty consistently. (He gets 50cc / feed 8 times a day.) But there have been feeding setbacks too. He’s still dropping his heart rate pretty often while eating. And on Friday night we learned that Nathan’s left vocal cord is paralyzed.
I think we have to back up a bit more. Nathan’s voice has been hoarse since he came off the breathing tube back at Children’s Hospital. 3 weeks and change with a tube hanging out between your vocal cords will do that. When he transferred back to BI all the nurses remembered his hair and loud cry. Except that the cry wasn’t so loud any more, so they paid attention to it. We were told the cause of the hoarseness might not be the breathing tube, but his PDA ligation. Apparently the PDA is right next to nerves that control the vocal cords and these nerves can get disrupted during the surgery and the cord can become temporarily paralyzed. The plan was to keep an ear on his voice and if he was still hoarse when it got close to discharge time, have the Ear Nose & Throat guys take a look and see if paralysis was the issue. When he began having an increase in dropped heart rate spells while eating, Nathan’s docs decided to get his throat looked at sooner, since the vocal cords are the last line of defense in keep food out of the airway and anything going down the wrong pipe could cause the heart rate drops.
And that’s how we learned about the vocal cord paralysis. This knowledge and the continued spells are what lead to today’s swallow study. Which was actually really interesting and very informative and only took about an hour including travel time. (Which is pretty amazing since the ambulance ride around the corner to Children’s takes 15 minutes when you don’t get stuck at the Longwood Ave light.) For the study, they had Nathan drink different thicknesses of barium and watched how he sucked and swallowed and where the liquid went.
We confirmed that the wide base Playtex nipple is the best choice for Nathan so that he can get a good latch. We learned that while milk (or in this case, barium) is not going into Nathan’s lungs, a very small amount does sometimes enter his windpipe which he than has to bring back out. Not so much fun for a little guy still learning to eat. And we discovered that the thicker barium really worked in keeping fluid flowing down the right pipe.
So why’s this all going on? Could be immaturity, could be the vocal cord paralysis, could be a combination of both. So what’s the plan? (Do you remember there was a time when we stopped making plans for Nathan and just had goals and hopes with his care? Plans are so great.) Turns out that just like you can add calories to breast milk, you can thicken it too, so the plan is for Nathan to get calorie fortified (we’ve talked about that, right? this doesn’t mean mama gets to eat extra dessert…) thickened milk. Just like I can’t add in the extra calories, I can’t all of a sudden produce thicker milk, so Nathan’s team back at BI will have to talk and decide where breastfeeding fits in to this new plan. We’ll find out tomorrow. I really hope we don’t have to give it up!