Great Suck, Terrible Swallow

So, you might be asking yourself, “why was Lily still in the NICU if her breathing was taken care of and she was healthy”?  Well, Lily had two issues that needed time to be resolved. The first issue was the central apnea that I mentioned previously-basically, her body would just forget to take a breath.  Even full term babies do this, and then they take a few catch up breaths.  It’s actually pretty normal, but for preemies, you need to stimulate them to take the catch up breaths.  The apnea gets worse when the baby is too taxed.  And for Lily, drinking from a bottle was the most taxing part of being in the NICU.  You wouldn’t know it now, considering she just drank an entire bottle and ate an entire package of string beans in 30 minutes, but eating was Lily’s biggest hurdle.  She really couldn’t coordinate the breathe, suck, swallow motion-again, this is something that full term babies can also have a problem with, but Lily was never going to graduate from the NICU if she couldn’t drink a bottle without it throwing her into an apnea fit.  My daughter would hold her breath, suck in too much fluid, and then be too overwhelmed by how much formula was in her mouth, so she’d choke.  She had "a great suck, but a terrible swallow” (and no, the hilarity of that diagnosis was not lost on us, even in our misery-it reminded me of this one time that my dentist, who is older than my parents and who I’ve been seeing since middle school, tried to help me with my sensitive gums, and said “you know, just put something in there and move it around, suck on it a little”-he realized how awful it sounded, but I was too busy laughing hysterically to hear his multitude of apologies).

Lily had to stay on her feeding tube far longer than expected because of her bottle problems, and she had to stay on oxygen longer than expected because of the feeding problems-they couldn’t wean her off of anything until she stopped choking.

Coupled with the choking was another serious problem that also triggered the central apnea: acid reflux.  You might be thinking, “silly baby, I have acid reflux and I just take xantac.”  Acid reflux is different with babies.  And yes, yet another thing that happens with full term babies, but with preemies, they feel the acid come up, it burns, and they stop breathing! Woo hoo for more apnea.  The solution is medication, first xantac and then prevacid (which did work, eventually).  The solution is sleep position, notably, sleeping on your front because then the acid doesn’t creep up.  The sleeping on your front issue became an even bigger dilemma once we were released because the current trend in pediatrics is “back to sleep”-all babies MUST sleep on their backs because it seriously reduces the risk of SIDS. Well, I had a kid with terrible reflux who was sleep trained on her belly, so she stayed on her belly!  So once the reflux was under control, Lily could come home.

But, the eating wasn’t under control. The choking is what kept Lily from coming home.  Even with thickened feeds, being over 6 pounds (they let you out of the NICU at 4 and a half pounds for good behavior), the lowest possible setting for oxygen, and being super duper cute, Lily had to get the choking under control-great suck, terrible swallow.  I can't wait to joke with her future husband about this one!