THE G-WORD

So, the weekend was interesting.  The speech therapist was out, and we had new nurses, one of which changed the nipple for feeding to a regular bottle nipple.  Priya seemed to like the new nipple, but she wasn't necessarily more efficient with it compared to her first one with someone who knew how to get her to latch on it.  I was happy, because Priya seemed happier to work with it, but I didn't know better.  The speech therapist wasn't real pleased that someone switched nipples, because it set Priya back a little.  And, it doesn't matter if she likes it, because it's not teaching her how to latch, suck, and swallow properly.  The nipple we used over the weekend just kind of allows milk to dripple out without baby learning proper developmental skills. Without these skills, her speech and eating skills will suffer in the future as well.  So, the speech therapist is really working with her today to work on her skills again.  She had better success on the original nipple than the rest of us had all weekend with either nipple.  Priya still has to work too hard for her food though.

The neonatologist, speech therapist, nurse Crystal (she is her primary nurse who has followed her from her original room in NICU), and surgery had a consult today. The plan after today's feedings is to get her feeds (oral/ng tube) up to full feeds (which will be after midnight).  They had seen reflux on her Upper GI after surgery, but she really hasn't had problems with it since then.  They will watch her for reflux  probably for a day, and then do surgery to insert a G-tube.  If she has reflux, they will do a nissen procedure at the same time they do the G-tube.  We don't anticipate they will need to do both, as she has had no problem tolerating her increases in food up to this point.  Once the G-tube is inserted, they will need to monitor her post-operatively for 4-5 days.  She will continue with speech therapy and oral feeding in conjunction with G-tube feeding.

The G-tube will allow us to give Priya oral food at her own pace without causing an oral aversion due to making feeding an unpleasurable experience due to extended, stressful feedings that frustrate her because she works hard for little reward.  Also, it takes so long for her to get such a little bit of milk from a bottle that we would have to spend all our time on feeding and have less time to work on cuddling and playing and working on other developmental things.  Not to mention, mommy and daddy need SOME sleep!  Right now she is taking 15 minutes to get anywhere from 2 to 17 cc out of 50+ cc per feeding. The speech therapist does not feel that she will be able to keep up with nutritional needs on what she gets orally alone, but we are all hoping she does catch on and only need G-tube minimally.  Another benefit to the G-tube is that recovery after cleft palate repair (when she is one) will be five weeks, so already having the G-tube in place will be a bonus for that.  Let's just hope Priya doesn't treat her G-tube like she did her NG-tube last night.  She pulled it out TWICE!

Besides the G-tube, it is possible Priya might come home with a pulse ox(imeter) to monitor her oxygen saturation.  She has always had these short episodes where she is trying to breath but not doing it.  No one really got concerned about it, because her oxygen saturation was maintained in the 90-100% range.  However, with increased food intake, she has been getting more and thicker mucousy secretions.  She gets really raspy and has more frequent episodes.  She had one episode today that lasted a few minutes, and she started to desat with some slight lip discoloration, so the nurse had to wave some oxygen by her face until her oxygen levels went back up.  FREAKED US OUT!  She had had a lot of shorter episodes today after that.  Sometimes it is nervewracking holding her wondering if she is going to have a longer episode of it again.  It is possible that a lot of the problem is just her big tongue causing airway blockage.  If it becomes too big of a problem, it is not terribly uncommon for BWS kiddos to need a trach.  We REALLY hope that is never something we have to deal with.