Life at Dell

It’s been one full week since we transferred to Dell. So much and so little have happened since we’ve been here.

We’ve met with craniofacial, surgery, infectious diseases, neurology, genetics, cardiology, and soon we’ll meet with ENT and GI. We’ve had lactation, PT, OT, case managers, child life specialists, social workers, and volunteers stop by. It’s been busy.

What we learned is that Nathan developed a nasty UTI infection which likely exasperated his apnea episodes. It probably made the one last Tuesday worse, leading to where he needed help recovering. The infection is under control now.

We also did a sleep study which revealed he has severe obstructive apnea. That said, his is not as bad as compared to other neonates. Next step, airway evaluation.

Things that haven’t happened as quickly as I want mainly revolve around feeding. It wasn’t until last night that he latched when I was nuzzling him. He still isn’t swallowing any milk and its looking like we will insert a G tube next week.

I can’t fully express how desperately I want this baby to eat orally. It’s so basic to being human and such an instinctive way for a mother to nurture her child. Nathan is four weeks old and I feel time is slipping through my fingers. I can’t be down here at the hospital for every feed. I want him home, but part of me feels like putting in a G tube is like giving up. It feels so permanent because I don’t know if this child is going to be able to eat in the long term. He’s my mystery baby for sure! Always has been, probably always will be.

Here’s my noisy little guy. Doesn’t he look a lot like Mac?

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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