Friday, April 26, 2013


Wow, it has been SO long since I've updated this.  There just never seems to be enough time.  Connor is such a hands on baby that it's pretty much impossible to get anything done during the day and the nights are pretty busy and hectic too.  Here are some updates on our little man with some cute pictures thrown in the mix ;)

Personality:  This kid has quite the personality!  Overall he is not a very happy baby, but if I had oxygen in my nose all the time and had oodles of doctors appointments, I probably wouldn't be too happy either.  We are still waiting to see him smile and I've had two dreams where he's smiled and it just made me so happy!  He does {kinda} smile sometimes in his sleep so we can't wait to see a social smile.  The neurologist we spoke with this week said to expect a social smile between 8-12 weeks and that we shouldn't be concerned yet.  I don't know if I'm just getting used to it or if it is better, but he doesn't seem to be quite as irritable anymore.  Usually if he's super fussy I know it's because he's tired and needs a nap.  He's definitely having more moments of being awake and content, like in the second picture below.  No matter what, we love this little munchkin SO much.  In the video is a classic Connor freak out which are getting to be few and far between now.  Usually he only gets like this when he's tired and fighting sleep!

Now we're getting more of these moments...sweet, awake, and calm!

Eyes:  We've been to the eye doctor twice now since discharge.
The first visit he mentioned Peter's anomaly of his left eye, which had been mentioned by the eye doctor while we were still at MUSC.  We were thinking since he had Peter's anomaly, he might have Peter's syndrome (since he has some other issues going on) which is extremely rare with only about 70 reported cases worldwide, but more on that with genetics.  The eye doctor said his left eye was cloudy, but not too bad.  He tested his pressure which meant clamping his eyes open while I held him.  Talk about heartbreaking.  He screamed the entire time of course.  Because he was so worked up, it was hard to get a good read on the pressure.  It was decided to keep him on his eye drops twice a day and he gave us some tips on how to make sure some of it gets in his eyes.
Our second visit was last week.  The pressure wasn't checked since the doctor knew Connor would freak out.  He looked at his eyes and said that the left eye was cloudy, but still not too bad.  He confirmed that the right eye looked perfect which is always good to hear.  We also talked about doing a sleep eye exam where Connor would be put to sleep in order to examine his eyes.  This is something we should really only do once so we can do it through MUSC when the time comes, or he mentioned going to Duke where there is a doctor who specializes in pediatric opthamology.  This is something we'll have to think about in the future when he's ready.  He also said he wasn't sure if he had Peter's in the left eye, which is good news.  If he does have Peter's in the left eye, best case scenario would be limited vision (mostly peripheral) and worst would be total blindness.  It's still way too early to know what his vision will be and I brought up our concerns (lack of tracking, always looking to the left) and the doctor said he should definitely be looking and tracking closer to 3 months which is probably going to be closer to 4 months since Connor has so many issues.  We'll be going to the eye doctor monthly.

Genetics:  We had our follow up appointment with Dr. Pai on the 4th.  All of the tests came back normal which is good, but bad because we still don't know what's up with Connor.  They're pretty sure there is something going on genetically since toes on both feet have no bones.  So, all 3 of us got blood drawn to send off to GeneDx that will examine all genes (over 21,000) to provide us with more information.  Future kids are not really even on my mind right now, but if we do decide to have more, we need to know how likely it is this will happen again.

Cardiology:  Connor is currently on oxygen and medication for his pulmonary hypertension.  We were really hoping to get off the oxygen at our last two appointments, but that unfortunately didn't happen.  While it did look better, he will stay on both the oxygen and medicine.  If at any point it looks worse, we will do a heart catheter where Connor will be sedated and they will run a catheter through a vein either through his neck or his leg to his heart.  This would let them really test his hypertension and also test to see which medications help it the best.  We're obviously hoping it doesn't get to that.

Hematology:  A specialist we can cross off!  All bloodwork came back normal so whoop whoop!

A rare break from the oxygen

Neurology:  We noticed one day that Connor's right leg was twitching.  We chalked it up to just being normal newborn behavior, but in the back of our mind knew that it was definitely possible it could be a seizure.  Well the next day he did it again and I caught it on video.  We sent it off to a neurologist at MUSC and he thought it could be a seizure, but it was unclear so he ordered a 6 hour EEG for the next day.  Connor did really good during the EEG and we met with Dr. Kinsman afterwards downtown at MUSC.  The EEG didn't really show anything, which didn't surprise us, so he said if we noticed it again we should hold his leg.  If it's normal newborn movement, we should be able to stop it.  If it's a seizure, we likely wouldn't be able to stop it.  Needless to say the next evening I noticed his leg twitching when I held him. I held his leg and it did stop, but I could still feel the muscle pulsing.  We decided to go ahead an up his seizure medication and since we've done that, we haven't noticed any possible seizures.  We are also only on the apnea monitor at night.  Progress!

After fussing for a LONG time, he finally passed out during the EEG.

BabyNet:  We met with BabyNet and Connor qualified for services.  His motor skills are good, but he did not meet criteria for things like smiling and tracking.

2 Month Pediatrician Check Up:  Connor did really well at this visit.  This was the first visit I've gone by myself since he was only on oxygen and no apnea monitor.  He weighs 7 lbs. 7 oz., is 21 inches long, and his head circumference is 12 1/4 inches.  At his last checkup he was 6 lbs. 10 oz. and his head circumference was 12 inches.  He got his shots/vaccinations and did SO well.  He was easy to calm down and fell asleep within minutes of getting in the car.

Sleeping after my shots

Hopefully I'll be better at updating this, but I'm not gonna hold my breath!

Wednesday, April 17, 2013

2 Months Old

Our little bug is 2 months old!  It has been so nice having him home with us and we are sloooowly getting into a routine.  Connor has kept us on our feet with all of his appointments.  We have at least one pretty much weekly.  Here are some pictures of our sweet boy's second month of life.

We thought Connor might be having seizures again because of a leg twitch so we had to go for a 4-5 hour EEG.  Poor baby fussed SO much and he eventually passed out.

Hugging Daddy

Connor LOVES his paci!

Hugging Mommy!  Ignore the overly tired mom...

Put your hands in the air like you just don't care!

Tummy Time

Connor's First Easter!

I just love this picture of him.

Look at those beefy arms

Connor met Mabel and he just loves her.  He can be frequently found kissing her ;)

At 2 months:
  • Connor is still sleeping downstairs in the pack and play. 
  • Connor got off the apnea monitor during the day!  Honestly he should have gotten off it for good because they thought he was on it for his pulmonary hypertension, but he was on it for his seizures.  We weaned him off the phenobarbital and since Connor stopped breathing with his seizures, we wanted to make sure his seizures were under control.  
  • Sleep is better, but he wakes up a lot at night still.  This is totally normal of course, but we are definitely looking forward to more sleep at night.
  • We started Connor on acid reflux medicine.  He arches his back and screams in pain!  We're hoping this helps him.
  • Connor isn't a very good burper...