From Benjamin's Birth to Heart Surgery

The first couple of days after Benjamin was born are still kind of a blur to me.  I remember feeling so exhausted mentally, physically and emotionally.  There was so much information to take in and so many doctors to meet.  There is no way I could have done this with anyone other than Tim (will save that for another post).  On day 3 in the hospital we had some of Tim's family visiting and Tim went to take in his brother to meet Benjamin.  He entered into a chaotic scene.  Benjamin was blue and had had a seizure.  Doctors and nurses surrounded him and from what he told me, it was the scariest thing he had ever seen in his life.  I am so glad I wasn't there to witness it.  Again the tears and worries increased as we were unsure what was happening to our baby and what he was going through.  The doctors told us they were going to take him to get an MRI to rule out a stroke.

Fast forward to the next day we were sat down by a team of doctors in my hospital room.  I can remember these moments like it was yesterday, Tim and I sat hand in hand as the head NICU doctor explained to us that the MRI showed that Benjamin had been deprived of oxygen for some time and it had resulted in brain damage.  They were unsure to what extent the damage was and wouldn't be able to tell us exactly what it would affect.  That would be something we would just see as time goes on and he grows older.  They were unsure when exactly the initial injury had happened but hypothesize that it occurred while I was in labor.  In fact, the doctor who read the MRI asked our doctor if the patient had been strangled, really?!  Well, the umbilical cord was wrapped around Benjamin's neck when he was born.  Most babies can withstand the cord around the neck in the womb, however they think that in Benjamin's case the cord around the neck coupled with Benjamin's heart condition was too much and may have caused the injury.  We don't know for sure and we will never know when exactly the injury happened.  It's not something we choose to dwell on.

Because of this incident that happened when Ben was 3 days old it delayed his heart surgery for TWO WEEKS.  The longest two weeks of my entire life.  I was discharged from the hospital on day four so Tim and I chose to stay close to the hospital so that we wouldn't have to worry about driving back and forth and dealing with traffic.  This would not have been possible without the support of our family and friends.  From the bottom of our hearts, thank you for making that possible, we are extremely grateful to all of you.

Before the surgery Benjamin was hooked up to many many things, a breathing tube down his throat, a couple IV's, a PIC line, an EEG monitoring, etc.  He had A LOT going on.  It was very hard to not be able to hold my baby.  I held him once since he had been born before the incident had happened.  We had a lot of ups and downs during those two weeks, since Benjamin was on so many medications he was pretty much sedated most of the time.  However, he still wasn't getting the oxygen that he needed so he would continually desaturate to very low numbers and have to be bagged multiple times a day in order to get his SAT levels back up again.  I learned way more than I ever wanted to know about monitors, heart rates, oxygen levels, respiratory rates, blood pressure, and so on.

We spent our days reading books, singing songs, talking to Ben, pumping (me), talking to nurses and doctors, and then taking breaks to eat.  We were there all the time for Ben and we wanted him to know it.  We went to our hotel to sleep and then we were back at it again the next day.  You would think that the days were long and boring with a baby that can't do much of anything yet, but it's incredible how quickly they could pass, except for those moments we were holding our breath waiting for Benjamin's SAT levels to come back up.

This picture was taken the second time I got to hold him. Pure bliss.

On January 14th when Benjamin was 17 days old he went in for his open-heart surgery.  The surgery took about 3 hours from prep time to finish and everything went wonderfully.  I have never felt so much relief in my entire life.  We had both sets of parents there with us and the joy we felt in those moments was overwhelming.  The worst was behind us.  It was time to recover and get Benjamin home.