30 Seconds From Tears

Getting ready for her swallow study.

Today I'm 30 seconds from tears when I remember that Dr. Smith is going to do Hannah's surgery this month!

Since Hannah was diagnosed, I have pretty much been 30 seconds from tears at any moment. Do something nice for me, and in 30 seconds I'll be crying.  Remind me how tired I am, I'll cry.  Ask me how I'm really doing, I'll cry. Remind me how lucky we are that she's alive, I'll cry. Think about how long she might be on a feeding tube, I'll cry.  Watch her choke on her spit, I'll cry. Ask me how scary it was to see my newborn turn blue, and you guessed it, I'll cry.

But today I'm crying happy tears!  I went into our swallow study very skeptical that anything had changed in Hannah's esophagus, and I was prepared with a laundry list of reasons to use to persuade the doctor to do the myotomy sooner rather than later.  He walked in to the exam room and looked at her swallow study and said, "It looks like the stricture in her esophagus isn't getting any better. I think we should go ahead and do the myotomy."  Happy Dance!  Happy Tears!  I am so relieved!  Now I feel bad that I was questioning his concern for Hannah.  He's definitely in our corner!

She's smiling because the doc says
she can have surgery!

Hannah's swallow study looked just like the first two: pooling above the upper sphincter, with barely anything getting through. She also had some silent aspiration, meaning she had some liquid go down her trachea and didn't even cough. This is obviously dangerous; if she had aspirated at home, we would not have known it.  There was no aspiration during her last swallow study on December 18, which leads me to think that perhaps her cricopharyngeus has become more constricting over time, as opposed to potentially relaxing over time as has happened in a few other cases.

Dr. Smith will do the surgery through an incision on her neck, and it should take about 2 hours.  He said he'd want her to stay overnight in the hospital for 2 nights just to make sure she doesn't have any post-op infection and to make sure she can eat.  Recovery is about 2 weeks and then we will have a follow-up swallow study.  I've read studies where babies with CA started breastfeeding in the recovery room following a myotomy (and reading that made me cry, of course). While that would be amazingly wonderful, it is very likely that Hannah has lost the oral skills to breastfeed.  I will let myself be pleasantly surprised if she can breastfeed right away, or even at all.

Lexie loves holding her baby sister.
She walks around saying "Hannah
so cute" several times per day.

The SLP who did her study indicated that she has a very disorganized suck.  With the exception of 2 swallow studies, Hannah has not taken any food by mouth since she was 2 weeks old, so it wouldn't surprise me if she forgot how.  She's also been on an almost continuous feed that whole time. This presents a few challenges.  Hannah gets 644 mL per day (22 oz), over the course of 20-22 hours.  Her tummy is so small that I'm not sure she can take more than an ounce at a time. Bolus feeding by bottle might not deliver enough calories, so the NG tube will be left in place to make up the difference as needed.  Another complication is that she has been on an almost continuous feed for so long that she doesn't know hunger.  Not only will she be relearning how to suck/swallow/breathe, but she'll also have to learn hungry vs full and that we're not trying to starve her.  It might be just like having a newborn again!

When I started writing this post, I didn't have a surgery date.  I was told it would be either March 16 or March 23.  I just got a call that she is scheduled for March 16. And then I started crying happy tears again. 

Have I mentioned I am So Happy!!!!