Wednesday, November 27, 2013

Strings attached

Oy oy oy! Raising Calder is clearly a 24 hour job. The two of us trade duties caring for Calder himself but otherwise, we're on the phone making appointments, scheduling equipment drop offs, ordering medications, answering insurance and other medical-related questions. Calder came home on aldactazide, pulmicort, and polyvisol plus iron, and the pediatrician added ranitidine to help him cope with any reflux he may have. We mix most of these into the breastmilk, along with some formula, although the pulmicort we administer twice daily with a nebulizer. The large oxygen tank that we use most of the time is cumbersome, and while Kraemer can transfer it, the monitor and the baby up and down our stairs in one go, it takes Taryn two trips, which isn’t exactly ideal when you need to grab a syringe from upstairs after you’ve already set up camp in the living room. Bathing requires that you remove his pulsox and take care not to accidentally yank out his Gtube. Keeping him contented (and with his lungs, he shouldn’t cry for too long at a time) requires holding, which again, minimizes mobility given he’s attached to a tank and a monitor. And pumping. Let’s not forget pumping. So when Kraemer goes to Ukraine next week, Taryn's mom is sticking around to help out, thank heavens!

look, mom, a double chin!

Speaking of feeding, we’re getting really comfortable with using his Gtube. It isn’t especially glamorous, but it does the job. Most of the medical staff we’ve encountered think that in some ways, regardless of the swallow study results, the Gtube is a good thing for Calder because it means he can focus on growing and thus improving his lung capacity without the trials and tribulations associated with learning to bottle feed. Unfortunately, however, we are having a little trouble at the insertion site: Calder appears to be developing a granuloma. This isn’t pretty, but I’m going to show you what it looks like anyway. A granuloma is basically just extra skin tissue, and they (we’ve been on the phone with a NICU nurse, a NICU surgeon, a G-tube clinic nurse and a pediatrician) think that it’s forming because the body wants to close the space between the tummy and the mickey (i.e., G-tube button). Our pediatrician today said that she thinks we can wait until our appointment at the G-tube clinic next Friday to really do anything about it other than keep it clean. Supposedly it doesn’t hurt.

Thank goodness breastmilk is a miracle substance 'cause we've got it everywhere. When your son is hooked to oxygen, and a monitor, and then you add in the G-tube extensions with a couple ounces of milk and a squirming baby, accidents happen.  First Calder kicked my hand holding the syringe christening our couch. Next, having learned from my mistake of gingerly holding the syringe, he kicked the tube connecting the syringe to the button, and while I didn't let go, the tube disconnected from the syringe.  That one left me in the comedic position of holing the upright syringe as the milk poured into my lap, and Calder's belly juice blew outof the tube (I were having fun!).

Because of Calder’s fragile immune system, and on top of that, the logistics of traveling with a preemie on oxygen and a monitor and being fed through a Gtube, we decided we needed to stay home for Thanksgiving. Taryn's mom, dad, Corinne and Matt are planning to join us, but a wicked winter storm is keeping them from getting in on time. But as we told them … take your time, we’re not going anywhere!

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