Miss Olivia Update!

With all the happenings over the summer, one thing that remained the same was the difficulty Olivia has when she drinks her bottle.  She coughs and coughs.  Back in February we had a swallow study done that was inconclusive.  We used the wrong nipple on the bottle, she fussed and didn't want to use the one they had so the test wasn't able to really show anything.  The technician thought everything looked 'fine'.  Time went on and she stopped wanting to eat anything by spoon so bottle was her only nutrition. A month or so ago, the coughing got so bad that she was too exhausted to finish her bottle and pretty soon, she was sleeping more and more.  The ENT doctor that we went to gave us a prescription for reflux and felt sure that's what the issue was.  My gut said no.  I took her to a feeding specialist who took one look at how she drank/coughed and immediately called the hospital and scheduled another swallow study! 

This time, a different technician had a much different response.....and it was alarming!!!  Olivia needs her tongue clipped.  She is tongue tied.  Due to that issue, it makes it very difficult for her to make a good seal around the nipple on her bottle.  She in turn, swallows large amounts of air.  But more alarming was that she also aspirates a significant amount of formula into her lungs, thus resulting in the cough!!!  The technician wouldn't allow me to leave the hospital (not that I wanted to after seeing the swallow study).  She had me stay while she called our pediatrician.  She told him that Olivia was not to have anything by mouth, period!  He agreed to put an NG tube in for feeding.  After spending 4 hours at his office, the tube was in and we went home....exhausted.  The feedings didn't go well.  She was miserable (and for good reason!!!).  We got two feedings in before her bedtime.  During the night, she pulled out the tube (smart little cookie!!!).  We agreed that there was no way we were going to subject her to another traumatizing experience of putting the tube back down through her nose, so we called the feeding specialist (she's a go-getter, makes things happen when Doctors won't listen to parents).  We told her the situation.  She got us into the Pediatric G.I. doctor that morning.  We went and saw him.  He totally agreed that she was not a good candidate for an NG tube.  She already has some sensory issues due to her not being able to see and having a tube down her nose was not helping!!!

Miraculously, he had an opening the very next morning for surgery to place a G-tube in her tummy for feedings.

That's been a month ago.  The coughing during feedings have stopped completely.  By bypassing the throat, we eliminated her constant aspirating during feedings!  She is also on a new formula that is giving her more calories and more complete nutrition!  Thank goodness for insurance because it costs just over $400 a month for her formula supply!!!  She had started to develop scar tissue on her lungs from all the coughing.  Poor little thing.  It used to scare me to death to feed her with a bottle because I just felt like she was constantly choking.....turns out, she was!!!

We are waiting for the referral to see a new ENT Doctor (my favorite Dr.....she's the best!!)  She will clip her tongue and probably remove her adenoids (she is a very noisy breather/sleeper). 

Overall, she is doing much better since her G-tube was placed.  We can now safely feed her and that is a huge relief!!

The first time feeding at home with her NG tube.  She was not happy.

 

After surgery!

 

Surgery was a little scary.  Her vocal chords slammed together and shut her airway.  They had to give her medication to relax the muscles and then ended up having to intubate her.  I believe that's what happened to Joan Rivers recently. The difference was, she didn't get the medication to relax the muscles in time.  Just something that we will need to remind them of when she goes back in for surgery.

 

She was pretty crabby for a few days after surgery but she is back to her smiling, laughing, talking cute self again!!! 

 

She has also mastered the art of taking our her conformers!!!  Haha, she usually takes out the same one (maybe it's easier) and thankfully, we find it next to her and not in her mouth!!!  Here's a pic of her from the other day when she pulled it out!

 

Sneaky, sneaky girl!!  :)

 

She also loves listening to music while she eats!!  Music from the movie, Frozen is her favorite!!!  I was going to take a video of her the other day but when I turned my phone on to record her, my music shut off (the music is on my phone too), so I had to take a picture instead!  The first picture shows her just laying there....waiting.  The next one shows her when she hears the familiar tune start to play,"Do You Want To Build A Snowman?"  She starts kicking and laughing, smiling and waving her arms!!!!  It really is the cutest thing.  I need to remember to take a video with someone else's phone so that I can post a video!!  So cute!!

 

Waiting.....

 

Yes!!!!  There it is!!!  My favorite song!!!!

 

 

 

Now that I'm finally getting caught up on my blog, I will post more regularly!  It was just a little daunting to sit down and type, knowing I had so much to catch up on!  Haha....