Jacob's Story, Part 1

Jacob was born in July, 2011 after a difficult pregnancy in which I had Cholestasis of Pregnancy, a condition in which one's liver doesn't work as it should, resulting in a build up of bile acids and salts in your body, which can cross to the baby causing stillbirth.  It made me feel sick and nauseated all the time, my skin itched like crazy, I was extremely tired, and just generally felt awful the whole time.  After two pregnancies in which I felt great and loved being pregnant, this was a stark contrast.  A dear friend captured these pictures, which is how I prefer to remember my pregnancy with Jake...

Because of the threat to the baby, I was going to the doctor and having him monitored twice a week, as well as doing kick counts and listening to his heartbeat with a Doppler at home.  He finally did not look well at my 36 week check, and as a result, delivery was induced.  In true "white male" fashion (as my NICU friends will appreciate), he had difficulty breathing at birth and was taken to the NICU for care.

He did the usual 36 weeker routine, requiring CPAP for 4 days, and a nasal cannula for an additional 3, with a side of gavage feedings and phototherapy. 

Nothing extraordinary.  However, on day 4, his nurse noticed a lump on his back.  He was very swollen, so at first we thought it was just dependent edema, from fluid retention.  However, we soon noticed, that when he would cry, it would get bigger.  His doctor ordered an ultrasound to evaluate the "mass."  Ultrasound evaluation revealed it was a vascular malformation, but that it extended from his back with "fingers" that went through the back of his ribcage into his chest. They couldn't tell much by ultrasound about the extent of the mass in his chest, so an MRI was ordered.  So on day 5, my baby boy was put under anesthesia for his first MRI.  We were shocked by what it revealed.  The vascular lesion on his back was about 1/3 the size of what was in his chest. It was a very large vascular malformation, not exactly an AV malformation, not entirely venous, and not an internal hemangioma; but having characteristics of all three. It was an unusual finding, but didn't appear to be interfering with anything or hurting him in any way. All expected it to act like a venous malformation or hemangioma, which meant it would generally not cause any harm and shrink and go away by the time he turned 5.  So we proceeded to take our sweet baby home by day 8 and all was normal and great.

And it continued to be great.  He was a good baby.  Pleasant, happy, and adoring of his big brother and sister.  He grew...

Played...

Loved...

And how I love him...

And life was good.  In September, 2012 he had a follow up MRI to track the Vascular Malformation to see how it was.  Results were good. No problems, it had simply grown with him but was essentially unchanged. The doctors said see you in a year...hopefully by then it will have started shrinking. So we went on, ignoring it.