Wednesday, January 1, 2014

Pain and Happiness in 2013

2013 was obviously a pretty big year for us.  To wrap this year up and look forward to the new year, I've been thinking about all the good and bad of this past year.  Some moments have been painful (literally) and others have brought us great joy.

Pain (in roughly chronological order)
  • Labor...duh.  At least until the epidural.
  • Finding out I would need a c-section after having already received oxygen twice during labor.  I was really worried about Connor.
  • Not hearing Connor cry at first
  • Slowly finding out while in recovery that Connor was having some problems.  Hearing his weight (4 lbs. 14 oz.) was clue #1.  
  • Not being able to have Connor with me.  Instead, he had to stay in the Level 2 nursery.  Not seeing him after he was born was ROUGH.
  • Hearing that his left eye was cloudy and didn't appear to be developed properly.
  • Finding out that it was recommended we go to MUSC.
  • Holding our baby before sending him down to MUSC while I stayed behind.

  • Saying goodbye to Matt and Connor
  • Moving around.  I was up moving around super quick after my c-section.  A lot of people couldn't believe how I was doing it, but I kind of had to if I wanted to see Connor.  It was painful!
  • Finding out when Connor was less than 48 hours old he had a fever.  Not what you want to hear.
  • Waiting while Connor had an MRI done late at night.
  • Constantly watching the monitors and seeing his oxygen saturation dropping.
  • Watching Connor get poked and prodded
  • Coming back from a walk to find out Connor had a 5 minute long tonic-clonic seizure and was being moved immediately to the NICU.
  • Wondering what your son's future held
  • Hearing from the neurologist that the MRI showed a stroke sometime within the previous 2 weeks (likely in utero).  This is also where the seizures were originating from.  His brain stem was also abnormal. Holding Connor while they delivered this news helped relieve some of this pain.
  • Talk of going home being crushed by the return of dips in oxygen levels.  An EEG confirms seizure activity.
  • Seeing Connor hooked up to the EEG, CPAP, and feeding tube.
  • Hearing from a neonatologist that your son may not live.  I managed to keep it together in the meeting, but lost it as soon as we walked out.  His point was his brain may not have been communicating that he needed to breathe.  Luckily, that wasn't the case.
  • Having your hopes dashed again that you won't be leaving, this time because of a heart problem.
  • Sometimes being home all day with Connor.  Now don't get me wrong, I love him to pieces.  But, if you spent time around us this summer, you would know that Connor loved Matt and Matt was the only one that could get him calm and quiet.  Staying home with him all day would usually result in a scream fest for most of the day :/
  • Leaving my current school to teach at a new school (my choice, but still a sad time!)
  • Handing your son over to a team of doctors who will put him to sleep for an eye exam and MRI.
  • Leaving my sweet boy so I can go to work.  I know, I said it's sometimes tough to be at home with him, but leaving him everyday so I can work is tough!
  • Any sickness he's had.  Since starting day care, he seems to be sick at least once a month and for at least a week, if not 2 or 3 at a time.  
  • Eye surgery at Duke.  Luckily he didn't have the cornea transplant, but instead got an optical irridectomy.  The surgery went great, but again, handing him over and waiting while he's in surgery is heartbreaking. 
  • EMS trip and subsequent hospital stay.  We still never really got any big answers as to why his fever was so high.
Phew.  That was a lot of pain.  We had some really great times too though:

Happiness (again in roughly chronological order)
  •  Being on 12 weeks of maternity leave.  Glorious!
  • Water breaking at home during dinner!  Thank goodness it didn't happen while I was teaching or something.
  • Hearing my sweet boy cry for the first time.  I cried tears of joy.  For the record, even though it took him a few seconds, his Apgar scores were 8 & 9...pretty dang good!
  • Seeing Connor for the first time.
  • Holding him for the first time.  I had to be able to lift my legs off the bed in order for me to get in a wheelchair to see him.  I could've sat and held him for hours.
  • Finding out that I could be released the same day Connor was sent down to MUSC.   Pretty much unheard of to be released the day after a c-section.  I was thrilled!
  • Reuniting with Matt and getting to see Connor again!
  • Getting to see Gizmo again.  Matt spent the first 5 nights down at MUSC and I stayed at my parents house who had Gizmo. 
  • Hearing from Dr. Pai that based on his initial lookover he didn't see anything too glaring in regards to genetics.  
  • Being in the great hands of everyone at MUSC. 
  • Seeing what a little fighter Connor was.  Everyone remarked on how tough he was (and he still is)!
  • Getting his infection precautions lifted after his fever.
  • Having no more blood glucose issues.
  • Connor being a good eater.  Aside from the day he got moved to the NICU and wasn't eating that much, Connor has always been a pretty good eater.
  • The day Matt decided to stay with me instead of at the hospital.  Connor was being hooked up to the EEG again that Saturday (he arrived on Monday) and Matt made the tough decision to not stay downtown.  It was nice to be together again.
  • Hearing from a neurologist that he thought the apnic events (when Connor would stop breathing) were in fact related to seizures and were not a brain stem issue.  This was later in the day after the neonatologist told us there was a chance he could die.  We loved this doctor and he really walked us away from this bad place we were in.
  • Getting a phone call on the way to MUSC from Nurse Katherine (who was our favorite nurse) that Connor was being moved out of the NICU!
  • After being crushed several times (including the day of), finding out that we were going home!
  • Bringing our sweet boy home (on apnea monitor and oxygen).

  • Being with him all the time and not having to leave at night or use a phone to call to let us in to see him
  • Getting off the apnea montior!  Then, a few days later, we got off the oxygen!
  • Connor rolling over for the first time.  Granted, he was pretty mad and that's why but it was still great.
  • Finally seeing his first smile!
  • Hearing him laugh
  • Seeing improvements in his mood, his ability to calm down, etc.
  • Finding out he doesn't have a diagnosed genetic syndrome.  While this still provides us with 0 answers, I really didn't want to hear "He has _______ syndrome and his life expectancy will be ____ years."  He still has something going on genetically, just not sure what.
  •  Enjoying many firsts with Connor, including holidays.
  • Sweet naps with him
It has been a whirlwind of a year and I can't wait to find out what 2014 will bring. We sure love our little man and will enjoy celebrating many more first this year, including someone's first birthday!

1 comment:

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