The Unknown - ER Trip #2

Yesterday was Will's four week birthday and we celebrated got to make an unexpected trip back to Duke to mark the occasion (loads of sarcasm intended).  Will wasn't quite acting like himself much of the day; he was sleeping more than normal and wasn't an eager eater.  He also had an episode of vomiting that was worrisome.  I spent much of the day exchanging phone calls with his regular pediatrician, and I fully expected them to ask me to bring him in for evaluation.  They never did and at around 4 PM they suggested I take him to the ER if he didn't become more alert soon.  Honestly, I thought that was taking it a bit far and we got pretty frustrated with the pediatrician.  How is it that they didn't want to evaluate him, but it was a serious enough concern to require a trip to the ER?

In doubt, we phoned our friends at the NICU.  We ran through all of Will's symptoms with them and they, too, decided we should bring him in.  So, shortly before 6 last night, I loaded Will into the car and we made the 45 minute drive to the hospital.  This was the second time we've made the drive to the ER in his short life and I pray that we won't be making this a regular journey.

I think the issue is this....  everyone is afraid of Will.  They are afraid of the unknown.  I'm afraid of the unknown, too, but I hate to see our little guy put through so much because of fear.  He really does act every part the normal newborn but because of his potential syndrome everyone treats him differently.  I totally agree that it is better to be safe than sorry, but I can't help but feel bad for Will.  I worry that we're subjecting him to unnecessary medical tests because we don't yet have a diagnosis.  To the medical teams, Will is an interesting case.  They get excited to open his shirt and look at his chest, to review his xrays, to ask questions about Jeune's.  On the other hand, I get excited to be at home with Will.  To be normal.  To love him unconditionally and treat him just like the amazing little miracle boy that he is.

Today, I'll be taking him back to his regular pediatrician and I plan on asking some hard questions.  Are they too afraid to treat Will?  Do they not want to see him because they aren't sure what to do or say when we have questions?  I understand that Jeune's is rare but we aren't even sure that's what he has.  We won't have an answer to that for months.  In the meantime, we need to find some balance.  A balance between being cautious and responsible and just plain loving this boy and trusting in God that he will continue to protect and bless his life.

One good thing came out of my solo trip to the ER last night.  I met an amazing older nurse, Louise.  She shares that name with my grandmother and it's also a middle name for my mom and me.  She also bore a similar resemblance to my grandmother.  After talking through Will's symptoms with another nurse, Louise left the room and then returned a few minutes later alone.  She pulled her chair close to the side of the bed where I was sitting with Will, looked me square in the eye and just started asking questions about how all of this has been on us.  I found myself pouring out our whole story...  How things got complicated 9 days into the pregnancy.  How they never expected Will to live.  She didn't say much while I spoke, but when I had finished, she looked me in the eye and very confidently told me to just love that boy and let the medical stuff play out slowly, however it may.  She told me she also had bowed femurs when she was born, but her momma rubbed those femurs straight.  :)  Louise doesn't realize it, but she helped me make a very important decision last night.  I had been praying for guidance to answer a big question about our journey with Will.  My question was all about what to do with the big DNA test results we're supposed to get back in a few months.  I had been struggling with it lots the past week or so, but sitting there in that ER last night with Louise, I got my answer.  I'll blog more about that later though.

Me, my grandmother, Emme and my mom -- Nov. 2010

For now, I am going to hold this boy extra close today and be thankful for every precious moment.  Thanks Louise for being an answer to prayers!