When Normal Feels Like a Setback

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Sigh. Preemies are not that predictable.

Early in Hope’s nursing career, a lactation consultant/RN told me that once Hope got the hang of nursing twice per day, they would increase her to four times, and once she could handle that well they would let her try at all eight feeds, and that I should expect each time they increase her number of feeds for Hope to seem like she’s not nursing as well as she was at the last stage. That was some of the best advice I’ve gotten in this journey. It’s proven so true! And this past week as Hope has been making progress in her endurance for nursing, it has been steady from a bird’s eye view but not if you look as closely as one day at a time. She will suddenly improve by leaps and bounds one day (she took three full-volume bottles in one night a few days ago after previously only ever taking about 1/8-1/4 of her volume by bottle), and then the next day she will sleep through nearly all her feeds and need to be gavage-fed. Because that nurse a few weeks ago told me to expect this kind of “two steps forward, one step back” behavior, I’ve been handling the staggering forward motion pretty well.

Until today.

Today, quite suddenly, she’s been having bradycardia spells (slow heart rate due to not breathing adequately) at every feeding. This is new. She hadn’t had any spells since the 10th before this. This increase in feeding related spells may well be a normal behavior that she’ll grow out of as quickly as tomorrow. We just have to wait and see. Sometimes when babies are really tired out they get disorganized with their suck-swallow-breathe pattern while eating and have these spells. The confusing part for me is that normally when Hope is really tired, she won’t eat by mouth at all. So maybe this increase in spells because she’s eating while tired is actually a good thing? Because it could mean she is interested enough and skilled enough in eating that she’s able to go for it despite being tired, but she just can’t quite manage everything necessary yet. I don’t know that that’s what the spells mean in this context, but it’s a theory that makes me feel better about it. All these feeding spells today were really discouraging for me because all week I’ve been feeling like Hope was making such great progress and we were in the home stretch, and now these mysterious spells feel like a huge setback. Maybe they won’t be, but again, we just have to wait and see.

Another new thing this week that feels like a setback but we don’t know yet if it will be is that Hope has had several episodes of supraventricular tachycardia (SVT), which is a super fast heart rate for no apparent reason. These have only lasted about 10 seconds at most, and she comes right back down to normal. The doctors did an echo of her heart and an EKG, both of which were normal, and then they put her on a halter monitor for 24 hours which recorded her heart’s activity into a computer for the cardiologists to be able to examine closely. She had one SVT episode while on the halter which let them know it was “true SVT” and not some kind of fluke or misreading of her usual monitor. The cardiologist explained (after telling me “The first thing you need to know is that your little girl is totally fine”) that sometimes this happens in babies but the research shows that with maturity they just grow out of it. With treatment until she grows out of it, this issue doesn’t pose a real risk to Hope. The doctors put her on a beta blocker to keep her heart from doing this SVT thing and to make sure any “breakthrough episodes” don’t last long. SVT can be dangerous if an episode lasts for hours, but hers have only been seconds. She’ll be on this medication for 6-8 months, during which we’ll have follow-up appointments with the cardiologists and they’ll do 24 hours of monitoring her heart from time to time to make sure the medicine is still working.

Both the cardiologist who read the halter and this week’s neonatology attending have assured me that the SVT medication and the feeding related bradycardia spells are not related.

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