Dangling Carrot

But those eyelashes!

Finally March is tomorrow.  Hannah will see Dr. Johnson for a weight check on Friday, and will get the second dose of synagis. Next Monday (!) is her swallow study and follow up with Dr. Smith.  I am so glad that it is finally here! I feel like each day and week is an eternity of waiting.  She was 10 lbs 12 oz on Monday, so I'm confident that by next Monday she will have reached the 11 lb milestone Dr. Smith was waiting for.

The game plan when we last saw Dr. Smith was to look at her throat and see if there was any improvement. If so, we would start oral feeding.

Come inside Jenny's brain for a moment.
Why would Hannah's esophagus get better on its own?  In some cases, the cricopharyngeal (CP) bar went away on its own.  If the sample size is only 5, and 2 out of 5 got better on their own, that isn't very impressive.  If 3 out of 5 got better on their own, that's more than 50%.  But still not impressive with such a small pool of data. And I don't usually ever win stuff, so I'm going to say that the odds are not in our favor.  I hear Hannah try to swallow every day. She does 5 or 6 loud swallow attempts in a row, with huge confused eyes, followed by a big grunt and sigh. Because it doesn't work. So yeah, I don't think it got better on its own.

Dr. Lexie at your service

And if it didn't get better on its own, Dr. Smith said he would do the dilation and botox again.
Ok, last time we did that, the dilation worked for about a day. After a day she couldn't eat again, and we had to go back to the hospital and get a feeding tube. And then we had to wait three whole weeks to see if the botox ever started working.  If Dr. Smith sees that the swallow study is no different than before, he'll say, "Lets do dilation and botox next week." which puts us in the middle of March. Let's say the dilation also works for a day or not at all, and Hannah still has a feeding tube. Let's say Dr. Smith wants to wait three weeks again to see if the botox worked, that brings us to the beginning of April. Let's say we get to the beginning of April and do another swallow study, and Hannah's esophagus STILL doesn't work, THEN will Dr. Smith do the myotomy? 

In my mind the myotomy surgery is a dangling carrot that keeps moving away from us every time we move forward a month or a week or 2 kilograms.  Every step is followed by, "Check back in 3 weeks to see if it worked." I feel like it will never happen.  Maybe I'm wrong and it's not as far off as I think and I'm being unfair.  But I am just so tired and I am so worried and I want my baby to get better right now. Yesterday. A month ago.

Tummy time

On Valentine's day, we were looking for pyloric stenosis. If a baby has pyloric stenosis, they would have corrective surgery within a day or two of being diagnosed.  Pyloric stenosis is an enlarged sphincter muscle at the bottom of the stomach, and prevents food from going through. The procedure to correct it is called a pyloromyotomy. So really, pyloric stenosis is almost the exact same problem as Hannah's except in a different place, and has almost the exact same surgical fix. If babies have surgery immediately to correct pyloric stenosis so that they can take food by mouth and grow, why wouldn't they also correct a cricopharyngeal "stenosis" immediately? Her problem not only prevents her from eating, it also compromises her breathing, which some would argue is kind of important.  And likewise, do they ever wait six months to see if a baby's pyloric stenosis goes away on its own? I think not!  This doesn't seem fair.  Just because ours is more rare, we get half a dozen swallow studies and months on a feeding tube, and so much waiting and wondering and worrying.  He only sees us and thinks about us once a month, but we do this every day and I think about that 3-weeks away appointment Every Day.

Every day and week and month that she is on a feeding tube she loses oral stimulation.  She loses elasticity in her stomach.  She has no hunger cues. She can't eat at the pace and volume she wants to set, that her body tells her to. She is 3 months old and should have tummy time every day and start pushing up and rolling over.  All of our babies have started crawling around 6 months old. How is she going to be mobile with a feeding tube in her nose? She would pull it out constantly.

The long-term alternative to an NG tube is a G-Tube, which is a tube through the abdominal wall directly into the stomach. Babies who still need enteral feeding after becoming mobile generally get a G-Tube that is easier to maintain than an NG tube. But it has to be surgically placed and requires general anesthesia or deep sedation. If we are withholding the myotomy surgery because of the risks of surgery and anesthesia to an itty bitty baby, it would seem counter-intuitive to surgically place a G-tube rather than to just do the dang surgery already and eliminate the need for tube feeding.

Every time she coughs and doesn't quite clear everything in her throat, I worry she is going to aspirate to her lungs or stop breathing. Every time she sputters up white foamy mucus and saliva, she chokes and screams, and I jolt out of bed, hold her upright and make sure she isn't turning blue.  Every time I lay her flat for a diaper change or for tummy time I worry that she will choke on her own spit.  Every time we leave the house or I hear someone sneeze I worry she will get sick again.

Oh yeah, that reminds me that Dr. Smith mentioned that he wouldn't do throat surgery if the baby has had a respiratory infection within six weeks because surgery is riskier if the throat is already irritated or inflamed. So here we are, sitting on our hands during an incredibly dangerous winter hoping that this baby doesn't get sick again, and if she does it will add at least 6 more weeks to the timeline I mentioned above.  Again, see the part about the baby needing to become mobile in the near future...

Its also inconvenient for me in a whole bunch of other ways, but I'm trying to focus on why surgery NOW is best for Hannah and not just me.

Maybe I will tell Dr. Smith everything I've just told you and he'll say "You're right! Lets do surgery tomorrow!" but I highly doubt it.

Still manages to smile even with
a tube in her nose!