Lilybelle

You might remember e-meeting some of Ira's NICU friends in this post. It's been an honor to keep up with these children and their parents. On Friday I got an e-mail from Lily's mom. The subject of the e-mail was, Here we go again... My heart sank. I didn't want to open the e-mail. Before I go on to say what the e-mail entailed, it might be helpful to remind you of Ira's (and Lily's and Ava's and Alix's) initial diagnosis and how the docs went about fixing the issue.

All these kids had congenital diaphragmatic hernias. In very simplistic terms, they developed a hole in their diaphragm while in utero. Therefore, organs that are normally found in the abdomen are found in the chest. Because the lungs are the last major organs to develop their growth is compromised due to the intrusion of the intestines, stomach and much more.

The way to correct this problem is to have a surgery in which all the abdomen organs are pulled down and put into their perspective places and then (GET THIS!) the surgeons patch up the hole with Goretex. Yep, Goretex.

Some kids have small holes. Eventually, the Goretex patch is enveloped by the diaphragm as the kid grows. Some kids, like Ira, hardly have a diaphragm; therefore, most of Ira's diaphragm is Goretex. When we asked our surgeon about Ira's future it was made clear that Ira very well might need a surgery in the future as Ira grows. Goretex is great and all but it doesn't grow.

So back to Lily. Lily has outgrown her Goretex patch. Technically, she has re-herniated...again. (Both Lily and Ira re-herniated while in the NICU.) But because Lily is doing so well (eats on her own now and breathes on her own now) and as Lily's mom put it, "acting completely normal," there is no rush to get it corrected. But it isn't surprising to hear that our favorite surgeon wants to get it done sooner rather than later.

Lily's mom wrote: Please keep my Lilybelle in your prayers as we are about to face once again another challenge.

We can do that, right?

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