Sunday, December 22, 2013

First Food!

On December 20, at 10 months old, Connor had his first taste of food other than formula.  We were originally going to do a veggie (and when I say originally I mean back before Connor was even born).  But, he's been through so much, we figure he's earned being able to have a fruit first so we did apples.  We had a speech therapist there to help us.  It's something we're going to continue to try to feed at least once a day and just something that is going to take work.  Our current plan is to dip his pacifier in the food since he's so used to the nipple from formula.  However, we will keep offering the spoon as well so he can get used to it.  Here are some videos!

Not doing a lot of eating in this one!

We've been giving him apples since Friday and I was SO excited in the difference I saw tonight.  He did a lot more smacking on his own and didn't seem to "need" the pacifier like he needed it before.  He does like to suck on it between bites.  His bib wasn't nearly as soaked in applesauce as it was before.  We're making progress!

Sunday, September 29, 2013


We had a very successful trip to Duke.  To say Matt and I were a little concerned about the car ride would be an understatement.  After all, he screams on the way home from day care most of the times I bring him home.  We had an appointment at 1:00 with Duke Audiology (he also needed his hearing tested while he was sedated) and we wanted to have plenty of time to get there since Connor's longest trip to date has been to West Ashley!  We left at about 6:20 a.m. and were cruising along until we got stopped by an accident. We weren't far behind it, so we couldn't get off on the detour they had evidently set up. Of course Connor had been sleeping soundly until we came to a stop.  We ended up having to change and feed him while parked on the interstate.  We ended up calling Highway Patrol because we had to get up to Duke and were curious what the deal was.  They told us a lane had just been opened and we should be moving soon.  Luckily we got moving and we were off.  Connor did great and we didn't have to stop again until the North Carolina Welcome Center.

Connor's first out of state trip

Connor enjoyed walking around a little bit and eating outside in the shade.  We had to stop a little closer to Durham for gas, and luckily Connor was able to hold off on eating until we got to Durham.  It took us a little while to find the Children's Hospital, but we got to our appointment about 5-10 minutes late.  Not bad for a drive from Charleston and getting lost parking and getting to the appointment.  They thought they could test Connor's ears there, but we of course knew better.  We decided we would go ahead with the hearing test while he was sedated.  Then we scooted off to our appointment with ophthalmologist, Dr. Freedman.  She looked at Connor for a while and said she highly doubted we should do a cornea transplant.  It would require multiple surgeries and multiple sedations so we were kind of relieved about it.  She said it was very likely she would proceed with the optical iridectomy after she looks at the eyes while he is sedated.  She confirmed what we already knew which is that he's not tracking with his good eye and there is likely some underlying neurological/cognitive things going on.  She said by 7 months, most babies with a bad eye would have essentially already trained their brains not to use the bad eye.  She said in a way his developmental delay might be helpful because if he's not tracking or seeing yet, his brain hasn't learned to rely only on one eye.  One of our questions was at what point do we stop saying his lack of vision (in his right eye primarily) is due to a developmental delay and start assuming he won't see.  She said vision develops up to a year and for him it could be even longer so we still have some time.  He is very sensitive to light, but primarily in his right eye.  So we will see.  Here is our sweet bug sleeping before he got messed with!

After our appointment with her, we went upstairs to sign the paperwork for the anesthesia.  It's a little scary to sign a paper that says a risk is loss of life.  After we left here, we went to the hotel.  Matt was on Connor duty and I unloaded the car.  There was a restaurant at our hotel, but we weren't sure when it opened so I set off to find dinner.  Luckily I found an Arby's close by and didn't have to stray too far from the hotel.  When I came back, I saw this sweet sight:

We rested up for our big day and were up Friday morning around 2:30am.  We had to make sure Connor got as much Pedialyte in before 4 as possible.  We loaded the car back up since we couldn't stay there again and were the first people at the eye center at about 5:40.  Connor was starving and it sucked because we found out they wouldn't take him to sedate him until about 7:30.  We realized we should've woken him up around 11 the night before and given him some more formula, but live and learn.  He eventually took a nap and then after they gave him the dilating drops he screamed until they took him back.  It ended up being about 10 extra minutes because there was some confusion about audiology.  Luckily it got sorted out.  They didn't let us go back when the put him under so it was hard to hand him over.  I of course cried because I just wanted everything to be done with.  We went out to the waiting room and sat alone in our own little antisocial area where we could see the update board.  Even though we weren't hungry at first, I ended up going to get breakfast for us after about an hour and a half.  We realized we wouldn't be any good to Connor if we didn't eat and take care of ourselves.  

Shortly after, Dr. Freedman came and talked to us.  She said the right eye was a little more abnormal than they originally thought.  However, he should be able to see to walk around and see and track lights (assuming the neurological aspect was there).  She did proceed with the optical iridectomy.  Basically, she removed part of the iris (where the cornea is clear) from his left eye and expanded his pupil to allow light to get through.  Again though, all of this hinges on the neurological aspect which is a pretty big one considering all of his issues.  Connor is also at risk for glaucoma in both eyes.  We were allowed back one at a time, so I let Matt go back first.  I thought I'd be too emotional coming and sitting back in the waiting room after seeing him.  Eventually I got called back and Connor and Matt came to me within a few minutes.  It was SO great to see him.  He was asleep, but Matt said he was fussing earlier.

Connor spent most of the afternoon sleeping.  We knew from his previous sedation that he would likely be really gassy so when he was very fussy, we figured he needed to burp.  He ate some pedialyte, but was just in the mood to sleep.  It was up to the anesthesiologist if we would be able to leave and stay at a hotel or stay in the hospital for observation.  Because of all of Connor's issues, he wanted Connor to stay at the hospital to have his vitals monitored.  So, we had to wait for a room.  We waited from 10am to 4:40pm!  We had our only little bay area that we stayed, but we were definitely getting antsy for a room.  We finally were wheeled over and literally as we're about to walk out the door the nurse says she forgot to transfer us out, or something of that nature.  I just had to laugh.  We could literally see the exit door and we were still stuck back at the eye center.  Matt gave me a funny look that made me laugh even harder.  We really tried to keep our spirits up this trip and make the best of everything.  

We were a little nervous because Dr. Freedman had told us that if the hospital could discharge us before our 8:00 appointment with her the next morning, we could just come back to the eye center to see her.  Our nurse after surgery said they usually don't discharge until around 11.  We were really hoping to get outta there ASAP, especially since we had a good drive ahead of us.  Luckily, when we got to our room, Connor's plan was to monitor overnight, feel better, and check out before his 8:00 appointment.  We confirmed this with both the day and night nurse and were glad when they said they were getting us outta there first thing.  

Thank goodness we got that breakfast because we never ate anything for lunch.  As soon as we got settled into the room, I grabbed us some dinner from the cafeteria.  After we ate, I went to the car to get our suitcases and some other things we needed.  Matt couldn't go because if you know Matt well, you know that directions are not his forte.  Poor guy would've ended up roaming the streets of Durham!  Once we got Connor to sleep for the night, we passed out too.

This was the first time we put him down...only lasted about 15 minutes.  We ended up having to put him on his belly.  He's a belly sleeper naturally and I was hesitant because of the board on his arm, but as soon as we rolled him over, he was out.

Poor Matt had to sleep on the floor!  What a good dad!

We were exhausted and even though I should've passed right out, I couldn't sleep.  It was so loud out in the hall and our room was right across from the ice machine.  Connor woke up around 12:30 and at that point I moved my chair out so it could recline.  I was able to sleep a little bit until 4:40ish.  When Connor woke up in the middle of the night and Matt was putting him back in his crib, his probe fell off.  Our nurse ended up keeping it off because Connor's stats looked so great!

We got ready and I made a lovely trip to the car in which I dropped Connor's pack and play mattress about 3 times and our snack back about the same.  Thank goodness no one was out and about that early in the morning because it was a little embarrassing!  As it neared 7:00, we were both a little nervous because we knew shift change was coming up and we were worried if we didn't get out soon we likely wouldn't get discharged before our appointment.  Luckily, the resident came in, looked him over, and gave us the green light to get outta there.  We left around 7:15, got breakfast to go, and then got to the eye center nice and early.  We were the first ones there and they took us back almost immediately.  

They checked Connor's eye and it wasn't as red as I was envisioning it.  They did a few tests and I think they were hoping for some more immediate results, but that didn't really happen.  Connor's left eye seemed about the same in regards to reaction to light.  We got about 4 different kinds of eye drops to give Connor and a lengthy eye drop schedule.  In addition to the eye drops, we will go to a follow up appointment with our ophthalmologist here on Friday, then another follow up appointment two weeks after that, and hopefully not, but possibly an exam under anesthesia just to make sure all is well.  He will also wear his protective eye patch for a week and we'll give him sponge baths just to make sure nothing gets in his eye.

After that, we were off!  Connor fell asleep almost immediately in the car and woke up when were over an hour away from the border.  I hoped he could hold off until we got there and he did!  It was a little chilly and even though he was in pants, we didn't have a jacket for him, so we didn't move around as much at this rest area as the other one.

Happy baby on the car ride!

Here we are sitting in the car back in S.C.!

Connor did great in the car (again)!  We were so proud of him.  We stopped for gas near Lake Marion and tried to feed Connor since he hadn't had a big meal since Duke, but he wasn't interested so we kept on moving.  We made great time and spent the rest of the day eating, watching college football and just relaxing.

Connor ended up passing out during tummy time...he was wiped!

Overall, it was a tough trip, but we tried to make the best of it.  Connor did really can't keep him down!  Multiple people commented on how fiesty and strong he is.  His recovery nurse was telling another nurse that he did better than she expected.  We are just so proud of him!

Monday, September 23, 2013

Happy Baby!

If you had asked Matt and I before if we would describe Connor as a happy baby, we would've said no.  A quick no.  No hesitation.

We've noticed a huge change in him lately and he's really starting to get a great personality!  Here are some great videos of our sweet boy!

We really love seeing him like this.  We spent almost a month in the hospital with him.  Then we spent months without a reaction other than screaming or crying.  Seeing his first smile and hearing his first laughs were confirmation that he's not miserable all of the time.  He's now talking, smiling, and laughing so much more and to say it fills our heart with such love would be an understatement.  We just love him so much and will cherish these times and videos forever!

Saturday, September 21, 2013

7 Months Old

It's hard to believe Connor is 7 months old!

We normally put him in an all white onesie, but he was in such a good mood, we hated to change his outfit and risk pissing him off!

When I think back, especially to our time at MUSC, it just seems SO long ago.  The fact that Connor isn't doing things "normal" 7 month olds do also kind of makes it hard to believe he's 7 months old.  He's working hard at holding his head up and is QUITE the mover.  We're not crawling, but he's been scooting for a while now.

This month has been a pretty big month in that Connor was really sick in the beginning.  If you look back at his 6 Month Post, I wrote about him having a pretty nasty cold.  Well that cold turned into a fever.  The fever ended up lasting a little over 5 days.  Finally, 2 different antibiotics later, the fever was gone.  It was rough!  Matt had to stay home from work for a whole week.  Since I took a lot of time off for my maternity leave and I'm at a new school (add in the beginning of the year craziness as well), it made more sense for Matt to stay home.  I'm so lucky and thankful to have such a great husband!

We always joked that Connor was so fussy we'd never know if he was sick.  Oh trust us, we knew.  He made sure we knew.  Poor little guy was just miserable.  We are so glad to not only have a well baby, but a happy baby.  He seems much more happier lately and is giving us lots of smiles and laughs.  Our favorite thing to do now is the Connor Monster.

Here are some sweet pictures of our baby this past month!

This is never a good sign.  It's actually what I'm looking at in real life as I type this...

Connor got a good note home :)

Sick sleepy baby :/

Finally got rid of the bassinet in our room.

Caught him mid-yawn (don't mind the boog in his nose!)

Such a sweetie!

Family picture before the Georgia game!

Connor pregames hard...he's clearly had too many bottles

A little blurry, but look at that happy baby!

He loves sugar from his Pa!

The Giz came over!  Pretty sure he was ecstatic when my parents took him back home!

Officially 7 months old!

He's technically 7 months 1 day old in these pictures, but oh well!  We would've rather gotten happy pictures a day later than sad pictures on 9/17!

Here's a video of my sweet bug feeling all better!

Someone got the hiccups during our photo shoot!

Here's our 7 month recap:
  • Got really sick!  It took Connor over 2 weeks to get over his sickness.  Poor baby ended up with a high fever, was spitting up left and right, and was just overall miserable.
  • At daycare full time.  Connor has been doing really good at daycare, although he's been pretty fussy lately.  We're wondering if maybe it's just hunger.  Hopefully that's it!
  • Overall happy baby.  Lots of smiles and laughs (except when he was sick).
  • Sleep is still about the same.  He's waking up usually once a night to eat.  There are definitely times he thinks it's time to get up for the day and that's rough.  Matt and I are alternating who gets up with him.  On work nights it always stinks if he wakes up at like 3:30, because I know I'll pretty much be up for the day!  He's still sleeping on his belly and will even wake up and cry if he rolls on his back (which is crazy because he knows how to roll over!)
  • Connor is still on all {high calorie} formula.  Since he's gotten over this sickness he's really increased the ounces he takes at a feed, but still enjoys grazing :).  We just switched to a new formula this week that his nutritionist suggested.  TMI Warning: He was having way too many poopy diapers with the other formula, so this new one has definitely seemed to slow that down.  He can't gain any weight if he's not retaining his food!
  • Connor hosted his first party here at our house.  We had a lot of friends over to watch the Georgia/Carolina game.  We were disappointed in the outcome, but loved having so many great friends here!
  • He's really getting better at his independent time.  He's still loving his swing and his belly.
  • We received word earlier this week we'll be heading to Duke for a sedated eye exam.  They also can't get a good hearing test on him so he'll be having a hearing test while he's sedated as well.  Matt and I vowed not to talk about Duke this weekend so that's all I'm going to say about it!
I think that's about it.  Like I said in my previous post, we are so thankful to have our sweet boy in our life and just love him so much.  Happy 7 Months, Connor!

Tuesday, September 17, 2013


Today Connor is 7 months old!  He was a little fussy tonight, so we didn't do an official photo shoot, but here are some pictures of him before getting his jammies on :)

I'm writing this post more for myself probably than for Connor or anyone else.  I've seen a lot of really touching stories on the news lately and find myself just about in tears (or in tears) over them.  First, there was the story of the kind stranger who paid for a family's dinner with a "special" child.  Then tonight it was this story about a football player with muscular dystrophy who scored a touchdown for his school's football team.  

These feel good stories have an even more special meaning now that we have Connor.  His future is still pretty uncertain.  We don't know what kind of developmental issues he'll face and he's already delayed compared to babies his age.  I'd be lying if I said it's easy to see other babies his age, or younger, who are doing things he should be, but isn't.  Of course it is.  I (and Matt too) still have pitty parties every now and then.  But then I see that sweet smile of his and know that it really doesn't matter.  Yes, he's not doing what typical 7 month olds do.  BUT, I get even more snuggles with my sweet baby boy.  

Taking Connor out to appointments always gets the same old thing:  "Aww, look at the little baby!"  "He's so tiny!"  "How early was he?"  It's easy to get down and get annoyed.  Yes, we know he's small.  No, he wasn't early.  It's something Matt and I are trying to get used to, but doesn't make it any less frustrating.  Connor is a great eater, just a slow grower.  We really like the people that just comment on how cute he is :)

Matt and I are both really open to talking about what's going on with Connor, but when we have to tell new people everything that's going on...that's hard.  Especially when you look at the sweet boy you're talking about and realize how much he's gone through in his mere 7 months of life.  We are so thankful for each day we get to spend with our little man.  He's the love of our lives ♥

On a more positive note, this past weekend we "dogsat" Gizmo while my parents went out of town.  It was fun, but cemented the fact that Giz is much better off at my parent's house.  He would literally start shaking each time Connor cried.  Poor guy!

We also found out yesterday that we'll be heading to Duke next Thursday and Friday.  Connor will have a sedated eye exam on Friday.  From there, they may determine he can get a corneal transplant.  They may also do an optical iridectomy, but we won't know for sure until the eye exam.  We will definitely stay up there Thursday and Friday too if he has the optical iridectomy. Thinking about it makes me a little anxious, so I'm trying not to think about it right now.

We'll have an official 7 month post up soon :)

Saturday, August 17, 2013

Half a Year Old!

Wow, where did the time go?!  It's hard to believe our sweet little boy is already half a year old!

This was another really big month for us.  I went back to work this week, which meant Connor started daycare.  We are sending him to the Charles Webb Center in West Ashley. It's definitely a drive for us considering we live out in Ladson, but they specialize in children with special needs and disabilities so it's a great place for Connor to be.  This also meant Connor's first sickness :(  He's got a nasty cold right now.  Coughing all over the place, which is causing him to spit up A LOT.  Totally congested and sneezing lots.  Poor baby.  He actually missed his very first day of daycare because he was under the weather.  

Here's some pictures of our sweet boy!

He has turned into a belly sleeper!

Officially a big boy and sleeping in his big boy bed!

Ahh, how sweet is this face?!  Patiently waiting for his echo cardiogram!

He did SO good!  He was actually awake, but calm and quiet...a first!

This was waiting for the cardiologist.  Such a sweetie!

Look who has 2 dimples!!!

I could just eat him up!

Even after having an MRI done and not eating for almost the whole day, he still managed to smile on the way home.

Connor spent one {last} night in his bassinet in our room after his MRI.  We wanted to make sure he was okay since he had been sedated and wasn't quite himself.

Passed out at Los Reyes.

I put my hands in the air like I just don't care!  Doesn't this look like a cute little 20's era bathing suit?!

Passed out and not feeling well :(

I'm on my way to my first day of day care!

Zonked out!

Here's a little recap of our month:
  • First :(
  • He's a big boy and has started daycare!  It's hard to leave him, but everyone there is SO nice!
  • Connor is talking a lot more which is great!  
  • He's still fussy or content most of the time...the happy moments are rare, but we love them so much!
  • Sleep has been kind of all over the place.  The sickness doesn't help.  There were a few nights where he would wake up several times or every few hours.  It was no fun.  Hopefully that's behind us.  Naps are still pretty sporadic.  We're hoping being at daycare will eventually get him on a schedule.
  • His eating has continued fine...we're still on all formula.  They don't want him eating solids until he has good head control.  He's been spitting up a lot more lately because of this wicked cold he's got.  His eating has also been pretty sporadic as well.
  • We are now down to seeing cardiology every 2 months....whoop whoop!

We still can't believe he's already 6 months old...such a sweet boy!