I've had a lot of questions this past week. Every day in NICU is a new adventure. I'm happy to report the babies are getting stronger everyday. They've begun bottle feeds and while they are not yet completing their full feed, they seem to be on the right track. Once they are eating 75% or more of each feed by mouth, they get to come home! Each of them even nursed a bit today which made me feel like a proud mama bear. We are trying to celebrate the small things.
After learning of Walter's craniosynostosis, I did some light Googling, careful to steer clear of click bait and opinion articles. Turns out the condition can be either genetic or environmental (aka something I did/injected/ingested/etc.). In fact, one of the sites I visited noted that craniosynostosis is more prevalent in babies whose mothers took fertility drugs.
This got my mind racing down a rabbit hole of hypotheticals.
What if it is genetic? Had we the money to genetically test this final round, would it have shown up and in turn would Walter have been tossed? The idea of this blows my mind. Although we all want our kids to be born healthy, from what I can gather his diagnosis and treatment seems rather direct. The fact that he may have been weeded out makes me beyond grateful that we couldn't afford to genetically test.
But what if it's not a genetic disorder and is indeed from the fertility drugs? I can't be mad at the drugs. Without them I wouldn't have any children. But if it was environmental, then Mabel should also have this issue. I approached the NICU pediatric doctor the next morning and asked if they would also x-ray Mabel's head for peace of mind. The Dr examined Mabel's head and thought everything seemed in order but agreed to run the test just in case.
The nurse that morning also mentioned hearing a heart murmur in Mabel so it was decided an ultrasound on her heart was a good idea. I spent the morning snuggling my kiddos and hoping for healthy results.
I returned the next day and learned the news that Mabel does indeed have craniosynostosis along with two heart murmurs (a PFO and a PDA). I was assured that both usually close on their own and for now will just be monitored. To be honest, I wasn't surprised with the results. No way was Mabel going to let Walter upstage her.
Thankfully, unlike Walter who is fused in three of the four sutures in his skull, they think Mabel is only fused in one. It sounds like surgery is the solution, but we won't know more until we are seen at Children's Hospital. We are waiting on word back from the specialist to see if they are comfortable waiting to see them until they are released from NICU, or if my little superstars are going to get their own personal helicopter ride to Children's Hospital.
While overwhelming, this news still somehow seems manageable. We know, and knowing is half the battle, right?
I just keep coming back to that question... "to be or not to be"? Although I think now knowing both kids have craniosynostosis, it's a safe bet to say the cause was environmental. The chance of them both having the same random genetic fluke seems unlikely. But who knows.
I got a degree in theatre, so I don't like to speculate and make uneducated medical guesses. Instead, I'll quote Shakespeare and ponder all the ways the situation could have been worse and count our lucky stars. Imagining for instance, that the twins weren't here at all.
In my book, these babies were meant to be. They are ours and we are theirs and together we will find a way to stumble through this.
"The course of true love never did run smooth" - A Midsummer Night's Dream