Who says waiting is a game?

So many tubes and still wide-eyed.

Every day is long and the weeks are an exhausted, chaotic blur. My body aches and my neck is tired of holding up my head. Sunshine and fresh air is rare in 20° inversion weather. Winter seems like it will be eternal, flu is a constant threat, we rarely leave the house, two year olds are tiny, manipulative terrorists, and we have serious cabin fever. So it surprised me when I realized it's already been a month since we saw Dr. Smith in Salt Lake!  We had another visit with him this week and have a little bit of a game plan. We're a little disappointed that Hannah's growth slowed down: only 2 ounces in 10 days. At the last few checkups she was gaining an ounce a day with the same number of calories.  Definitely something to bring up to the pediatrician.

Dr. Smith was pleased to hear that we are consolidating Hannah's feeding schedule and that she is tolerating the tube feeding well at a higher volume per hour (now up to 23 ml/hour! Baby steps, people...) She hasn't been spitting up or throwing up, and there is no evidence that she is aspirating to her lungs.  We do keep her elevated except during diaper changes, and she takes zantac to reduce any pain from reflux.

This is what survival mode looks like. Netflix is my babysitter
and she keeps changing her mind about what she watches.
Please don't judge me...

Incidentally, I recently learned that acid reflux medication doesn't actually reduce the reflux, it just makes it less painful. I can tell that Hannah is more fussy when I've missed a dose, and she does cough and sputter more if she is flat on her back for too long.  Also, the narrowing in her esophagus works slightly to her advantage in blocking reflux from coming up. All babies have reflux to some extent because the lower esophageal sphincter (LES) is immature. He said there is no way to know at this point if she has abnormal LES reflux or decreased motility in her esophagus below the CP (cricopharyngeal) bar. We can cross our fingers and hope not! He does not think we need to meet with a GI specialist.

A rare moment of sleeping without
being held. Gorgeous quilt by Aunt Barbara.

Dr. Smith ordered a pulse-oximeter test overnight to see how she does without oxygen. That would certainly simplify things at home to not have a 25 foot lead all the time, or a 20 lb tank whenever we want to leave the house. We'll know within the next few days if she passed. I peeked at the oximeter a few times overnight and I didn't see it get below 89% so I think she'll be fine.

Both her reflux and oxygen have been normal since we've been home from Primary Children's after getting over influenza. When she was sick she definitely needed the oxygen, and she also had more mucus and saliva secretions that made her cough and sputter and regurgitate more. Some days I have to suction white foamy secretions more than others and I get a little worried that she is getting sick again. Fortunately she hasn't had any more red alerts on the Owlet or a temperature for several weeks. That certainly gives us some peace of mind.

Every hospitalist I've talked to gets a grumpy face when I mention the Owlet monitor. The majority consensus of the doctors I've talked to think the Owlet is inaccurate, gives too many false alarms, and creates more parental worry than it alleviates. They are of the opinion that parents should be watching the baby rather than the monitor, and have told me that they very rarely send even NICU babies home with an oxygen monitor. But in the hospital and at home when we are testing her breathing without oxygen, what do they use? An oxygen monitor. I've pointed out that sleeping parents aren't watching their babies all night, so how else would they know the baby had a problem? And they can tell that I am a hands-on parent who doesn't just watch a monitor. The Owlet has legitimately alerted us that our baby needed emergency medical attention that we otherwise would not have sought on more than one occasion. Does everyone need to go out and buy one? No. But I truly think I was divinely inspired to. If you can afford it, or if your infant is medically fragile in any way, I would recommend it.

Snuggles always.

Back to our appointment with Dr. Smith. The game plan right now is to continue consolidating feeds, meet with a feeding therapist (he used Speech Therapist interchangeably) and come back on March 5 for a swallow study. If her esophagus shows improvement, we will try some oral feeds, and if not we will try botox and dilation again. I still had an ugly cry at the thought of the myotomy being off the radar for now, maybe even 2 or 3 months away or longer, but give me a couple of days and I will regroup and muster some more courage from the place where courage comes from but never seems to be in surplus. Courage is like the meal and oil Elijah promised the widow woman that never gets empty and never gets full. There is just enough for right now.