Our Adventure at Children's Hospital

We had a great yet exhausting day at Children's Hospital!!

Abby's transfer to Children's was a success!!  Her procedure went extremely well also.  She had a Bronchoscopy to check out her airways.  They determined that she has mild-to-moderate tracheomalacia, which is fantastic!!  So what does that mean?  It means that the only part of her trachea that is floppy is the mid section, which they feel is great.  Also, when her windpipe does collapse when she breathes, it doesn't collapse and close completely, it leaves an opening.  The problem however is that her windpipe should be shaped like a generous O  but Abby's is more like a horizontal narrow oval, making it difficult for her oxygen to pass through.  

The plastic surgeon was also present during the procedure.  They confirmed that Abby has "Pierre Robin Syndrome".  This is common for Campomelic Dysplasia babies.  Pierre Robin is where the babies jaws are small, their tongue falls back into their throat, and they have cleft palettes.  Well in Abby's case, again, she has a mild-to-moderate case of Pierre Syndrome.  She does have a cleft palette, but it is small and it is deep in the back of her throat.  They don't see it as an issue right now, but they will close it up when she is older.  Her tongue does not fall back into her throat.  They told us that her tongue is tongue tied which is helping to keep her tongue forward.  Kinda cool!

The orthopedist was in to see her this morning.  They are going to start physical therapy for her.  We will get more information from them in the next few days.

So the plan right now is to keep her on her CPAP.  They reduced the setting from a 7 to a 6 to a 5 this morning and she is doing well with it.  They are going to watch her to see if they can ween her off the CPAP and reduce her dependency of it.  She is feeding well.  Before the procedure she was up to 1 oz but had to stop for the procedure.  She is now working her way up to the 1 oz again.  I'm sure she is quite happy about this.  She was a bit fussy without getting fed and I'm sure she's now feeling much better!

Roberto and I are hanging in there.  It has been stressful, overwhelming, exciting, and emotional.  Roberto and my mom have been fantastic in taking care of me and the kids.  Thank God for them!

It is hard to believe that Abby is one week old.  I can't imagine where we would be had we not transferred our care over to Brigham & Women's.  With God's grace we were given the best care and continue to receive the best care at Childrens.  God also gave us such a beautiful gift.  One that I hope I never take for granted....