Who are we?





Benjamin just a few minutes old.
Hello,

I am a 31 year old from Southeast Massachusetts. I am happily married to my husband Colin who I met in college and we have two boys, Lucas (18 months) and Benjamin (2 months). I currently work full time as a Director of Human Resources for a public school system. Prior to that I graduated from law school where I learned all my handy research skills. My pregnancy with Benjamin was a breeze and went by so quickly. My oldest son, Lucas, gave me a pregnancy from hell and I was pretty sure I was not going to do that again. HA, 15 months later Benjamin was born. I arrived to the hospital at 4:48 and at 4:58 he was born!

One big happy family - December 25, 2015

Benjamin is my youngest son born on October 24, 2015. He was born at a healthy weight of 6 pounds 15 ounces! Compared to his brother my pregnancy with him was so easy and normal and his labor was a breeze. I labored at home and then ten minutes before he decided to arrive I thought it was a good time to get to the hospital. He came out so fast my midwife had no time to change so when I first saw him and the huge ridge on his forehead I believed the midwife and nurses it was due to a fast birth through the birthing canal (similar to cone shaped heads or other misshapes that happen). Otherwise Benjamin was perfectly healthy and nursed immediately.

Photo taken by Chelsea Blackmore Photography


The next day the pediatrician on call came by for a wellness check on Benjamin. His weight was terrific, as he barely lost any (just down one pound when the average newborn is down 10% of their birth weight). Hearing was great, reflexes looked good, chest sounded good, everything they look for he got a A+. I asked the pediatrician about his forehead again and she too said it was a soft spot from coming through the birth canal and that in a month or less it would round itself out.


Just born.

We checked out two days after birth and on day three saw our family pediatrician. Again everything looked excellent and he was to return at his two week check up. The two week check up is typically just a weight check until the one month check up when they do another physical. At the two week checkup though his weight gain was so great that the pediatrician did the full physical and excused us until the two month checkup. Our pediatrician is very through and on the conservative side so when he assured us at the newborn checkup the forehead would disappear, we never asked. My husband and I did ask about his constant fussiness and needing to be held all the time (my older son was similar but had a low birth weight and slow weight gain, he also wanted to be held all the time but did enjoy the swing). Benjamin also vomited after every single feeding. However, since he was gaining weight and growing wonderfully, the pediatrician chalked it up to Colic and said he'd get past it around three to four months old. We were happy to hear this and went on our way.

Benjamin doing tummy time at one month old.


Fast forward six short weeks later and Benjamin's forehead did not go down. It didn't get larger either but it was certainly firm feeling and bone like. It actually feels like his nasal bone is connected to his skull. In addition to this, since birth he's always been very congested sounding (think starting to get a cold sounds). So at his two month check up on December 29, 2015, I asked the pediatrician again about his forehead and how it had yet to decrease in size. That is when he informed me that it feels as if his soft spots had hardened and could be causing all his issues. He of course explained this all to me in very medical terms and I stared at him blankly. What I got the most out of this was we were being referred to Boston Childrens Hospital for a pediatric neurosurgeon for further testing. He was not confident enough in the area and a specialist would be needed. Our pediatrician also wanted to limited the amount of exposure he would have to radiology by way of x-rays and catscans. So then we were given our diagnosis, Metopic craniosynostosis.


Now, we wait.... and wait... and wait for Boston Children Hospital to call. Because of the holidays our pediatrician office advised us to give it a week and then call them to start hounding the hospital. The office staff did give me their phone number too... so maybe I will call on Thursday.

So that's where we are today, in limbo!

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