The Courage of a 3-Week Old

What a few days we have had!  Here is a quick overview:

Over the weekend, two separate doctors referred us to a Dr. Grimmer at Primary Children's Hospital in Salt Lake City.  He is a pediatric otolaryngologist and the director of the Vascular Anomalies Center which treats vascular birthmarks.  I called on Monday morning and we were scheduled for Tuesday morning.  At our appointment on Tuesday, Dr. Grimmer confirmed that Baker has several large hemangiomas on his head and neck and based on the pattern of them, he is confident that there are some in his airway as well.  He wanted to test Baker for PHACES Syndrome (pretty daunting if you look it up) and start him on medication as soon as possible.

So, we were admitted to Primary Children's Hospital a couple of hours later. Yesterday he had an MRI, Echocardiogram, and was examined by pediatric opthamologists, pediatric ENT doctors, pediatric dermatologists, and pediatric cardiologists.  To make a very long story (and longer day) short, all testing for PHACES was negative and we started medication last night!  This medication is Propranolol and babies this young must be admitted to the hospital to start it because it lowers blood pressure and blood sugar and the doctors want to monitor those things to make sure Baker's little body can manage all of it. So far, we are two doses in and he is a champ!  This medicine has a great success rate and will typically stop growth of the tumors and even start the shrinking process sooner.

I've been holding up pretty well through most of this!  However, yesterday when I was holding Baker while the anesthesiologist administered his anesthesia for his testing, I had a moment of weakness.  I wasn't expecting it, but I had a hard time watching my 24-day-old baby fall asleep and have to go back to our little room to wait for him.  Luckily, he has been the strong one this entire time.  It's amazing to me that such a small baby can have such courage.  But, through the IV's, the procedures, the beeping machines, and the gross medicine, Baker has been the strength for us.  Health, especially your children's health, is an interesting thing.  It really trumps everything else that you thought was important for you or your children when it isn't quite there.  But when it is, it's so simple to take it for granted.  There are so many sweet children here who have it much worse than we do and we are absolutely blessed more than we could have hoped for.

P.S. Shoutout to Primary Children's Hospital in Salt Lake City.  I am amazed by the care we receive constantly and we absolutely couldn't be in a better place.

What if...?

Our son, Baker, was born exactly three weeks ago.  He is perfect in so many ways, and absolutely a perfect addition to our family.
But, if you look at him, you'll probably notice one of his imperfections before anything else.  Baker has one (if not more) large hemangioma that is currently on his left eye and nose.  When he was born, his complexion was even and there was no sign of any type of red mark.  At about ten days old, we started to notice this red birthmark (we assumed) forming on the bridge of his nose.  Since then, it has continued to grow and we believe he has one around his left ear and one on his bottom lip as well.  His pediatrician, and several others, believe this is a hemangioma, which is a type of benign tumor seen in about 10% of infants.  The tumor appears as a red mark; it grows, darkens, and swells until about six months old.  At that point, growth stops and the tumor slowly shrinks and eventually disappears over the next few of years. This would be totally fine and acceptable except for the location of Baker's hemangioma(s).  Where his are located, as soon as they start to swell, they could impact the development and function of his vision, airways, and hearing.  We are heading to pediatric specialists this week to get a treatment plan in place.
As you can imagine, this unexpected news has been stressful for our family.  Just in the past week as we have researched and contacted doctors and specialists, we can't help but have questions.  We could constantly ask, "What if he didn't have this condition?"  Right, life would be a lot easier and we would just cruise along without much hardship.  But, he does have it.  So we've decided to ask "What if we didn't have great health insurance?" "What if there weren't people who dedicated years of their lives to studying things like pediatric dermatology or pediatric opthamology?" "What if we lived far from any of the specialists that we need to see?" "What if we didn't have love coming from great people in our lives?" "What if we both worked full time and would need to take time off to care for Baker?" It's tough to feel down about yourself (or your son) when you consider all of that. We may have a difficult circumstance, but we have all of the tools we need to overcome it.
Statistically, hemangiomas are the most common in females, caucasians, and babies that were born prematurely.  It just so happens that Baker doesn't fit into any of those categories. So. we must all really need to learn something from this.