Stenosis of the Ferennnnumumum Magnarmerum....

I have made it a habit to mispronounce/make up several medical terms over the past few days. I am looking forward of putting this one to rest: “Stenosis of the Foramen Magnum.”

(Side Note: Alveoli are the tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide takes place. Aoli, on the other hand, is a mayonnaise-like dipping sauce. For the record, Ben only has one of the two in his lungs, despite what I have been saying.)

One of the working theories about Ben’s restricted airway was that he had a Stenosis of the Foramen Magnum. The Foramen Magnum translates to “Big Hole” and is this guy, in red:

A condition some children with certain genetic disorders can have is a Stenosis of the Foramen Magnum, which is essentially the narrowing of this hole, and that can present as a restricted airway.  Today Ben had a solid few hours of MRI's and X-Rays and the result of the MRI showed that he does not have the suspected Stenosis that I have been mispronouncing.  While this is mostly considered to be good news it certainly leaves more questions about what is restricting his airway.  The next theory is that his muscle tone is too low to enable him to breathe on his own.  This can be be related to a thousand different issues, so the focus is on determining what the underlying issue is and then addressing how to get him breathing on his own, as well as evaluating the implications of whatever we determine the underlying issue is.

Ben had a busy day of tests and we expect to get a little more information tomorrow than we did today.  We hope to get to start holding him tomorrow or Friday, in the meantime we are administering love by hovering:

Dusting off the ol' Blog

As pictured in the header above, the Richards family blog has seen better days (circa 2010), but we wanted to provide some information and updates about the newest addition to our family.

Baby Ben

Benjamin Jeffrey Richards was born on Sunday July 28, 2013 at 8:25 AM.  He came a couple of weeks sooner than expected, and took us by surprise in a few ways.  He has a full head of black hair, just like both of his big brothers, but makes significantly less noise. 

The Past Couple of Days

He had troubles breathing out of the gate and they decided to take him to the NICU within the first hour. In addition to the respiratory issues, they noticed some key physical markers that indicate he likely has some form of a genetic disorder. Given the potential extenuating conditions related to genetic disorders and his difficulty breathing they determined he would likely spend a while in the NICU as they work through things.  After a couple of days of tests and attempts to correct the respiratory issues, the determination was made to transfer Baby Ben to the NC Children's Hospital at the University of North Carolina. We are grateful to the team at Rex Hospital that did a phenomenal job while we were there and that they knew when it was time to get us to UNC where we will have all the specialists we need to help Ben in the best way possible.   A transport unit, armed with some pretty legit jumpsuits, drove Ben to UNC on Tuesday, July 30 where he was admitted to the Newborn Critical Care Center (NCCC). UNC can provide a team of excellent specialists that will help determine what is causing Ben's breathing difficulties as well as evaluate the potential genetic condition and related difficulties he may encounter.  

After Ben was transported, Emily was quickly discharged from Rex…we are still trying to figure out why.  It is either the stealing of surgical gloves or picking of the nose...

The Problem

Ben's respiratory issues were two-fold and we have one down and one to go.  He initially was unable to get enough oxygen into his blood without a supplemental source, but with the treatments provided at Rex he was able to begin providing his body with sufficient levels of Oxygen...enter problem #2, despite being able to obtain enough oxygen from the air he was receiving, he is unable to actually get enough air into his lungs.  This is either due to some form of blockage in his airway or lack of sufficient muscle tone to pull in enough air.  The usual suspects have been treated by the doctors at Rex and have not repaired the problem.  The hope is that the specialists at UNC will more quickly be able to identify the source of the airflow issues.

Meanwhile, we await the results of several genetic tests to determine what condition his physical features are indicative of, if anything.  Some of the tests results will take another week and a half, but the specialists at UNC will be working to find other ways to get more confident on the diagnosis until the blood tests provide some definitive answers.

What Can I do?

We know everyone is eager to help, but there really is not much we can do or that we need at this point.  However, Ben's favorite food is currently glucose administered through an I.V...if you have trouble finding that, his dad really likes brown rice chips from Costco.

Taking a Step Back and the Big Picture

Ben is a sweetheart. We are eager for when we will be able to hold him for the first time, but he appears to be a great snuggler. We are yet to see him without some form of breathing mask on, but given his gene pool we are pretty sure he is handsome. Despite the potential struggles he is facing, he has quickly taken his place in our hearts and in the Richards family dude-squad.  He doesn't say much, but Emmett makes enough noise for the both of them.  He doesn't move much, but Parker spazzes out at least once a day in his honor. He is not quite ready to wrestle with his brothers or play pajama race, but we are confident he will get there and his brothers can't wait.  It is pretty easy to count the blessings in our lives and Ben has only made it easier, while adding to the overall count at the same time.

Ben is settled in at his new diggs in the NC Childrens hosptial at UNC.  They are starting fresh with his treatment and the diagnosis after being transferred from Rex. They will spend the next day or so gathering all the information they can to figure out how to help him best.  We will keep you posted.