Our sweet little bug is 3 months old! SO hard to believe! This has been a BIG month for us, but more on that at the end with our recap. Here are some pictures of our sweet little boy :)
Tummy time on daddy
I love morning naps with Pa!
I can't get this picture to rotate, but this is his superman pose
3 Generations!
Ahh, look at that sweet hair growing in! ♥ it!
Seriously lady, are all of these pictures necessary?! Ha, look at those chubby cheeks!
Daddy admiring his boy.
3 generations
Three generations!
Mother's Day!
First Mother's Day
Off the oxygen means going upstairs!
Like I said, 3 months was a big month for us. Here's a recap:
We got off the apnea monitor AND oxygen! Whoop whoop! Such a huge relief :)
Connor went on his first big trip somewhere other than the doctor. We went to both of our parent's houses for Mother's Day. It was great to get out of the house and go somewhere other than a doctor's visit.
Nightime sleeping is still improving. He's waking up much less and is usually back to sleep after he eats.
He's overall still pretty fussy. We're still waiting on his first smile!
We're finally out of newborn clothes! Yay for an expanded wardrobe!
Daddy saw his first smile on May 3! I still haven't seen a smile though :(
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!
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.
Wow, to say it has been a whirlwind month would be an understatement!
Here's how we spent our month...
Matt and I getting ready to leave for the hospital. Little did we know just how much our lives were going to change.
Ready to meet our little guy!
Our first indicator that something was up...definitely not the 7 to 7 1/2 pound baby we were told to expect.
Hooked up to SO many things. Poor baby :(
First of many pictures at MUSC. This was in the Level 2 nursery.
♥ this picture of him. He was having some trouble keeping his oxygen levels up on this day. Little did we know we'd be making a trip up to the NICU due to seizures.
Hooked up to the EEG and hanging with daddy!
After being hooked up to the EEG, it was so nice to see him in a sweet little hat! We were thinking we might be going home soon at this point.
Of course, we didn't go home then. Connor's oxygen levels began dropping again on Saturday, so he was hooked up to an EEG again, this time for 4 days! He's one week old in this picture.
First bath, at least the first one that we'd seen!
Loving on our sweet little boy!
Pondering why he's still at the hospital
How can you not love that face?
Those cheeks! It was GREAT to see him off the oxygen.
Big boy touching the bottle :)
Future Air Traffic Controller? Perhaps! Connor passed his hearing test which just confirmed Pa's hearing test...snapping fingers next to his ears!
Well, we thought we were leaving the hospital. A follow up echochardiogram showed pulmonary hypertension. Talk about heart breaking. We were literally one day away from being discharged! This is Connor under his oxygen hood.
After 23 days in the hospital, we are finally going home! Due to his pulmonary hypertension, he came home on oxygen. He also came home on an apnea monitor to make sure he wouldn't stop breathing with one of his seizure medicines being weaned.
Oh ya know, just hanging out in my bouncy seat.
It has been such a crazy month. It's a good thing we have a strong marriage because I think a weak marriage may not have survived. Matt and I really had to lean on each other during our hospital stay and take turns being strong. For example, when we were told about his stroke, I was holding Connor. While we talked about it, I just had a calming positive outlook all because I was holding him during the news. Connor served kind of like a shield for me. We were lucky in that there were very few moments where we both broke down together. It was also hard the first week because we were separated at night. Matt spent the night at MUSC and I couldn't because I was recovering from a c-section so I couldn't sleep in the family room down at MUSC.
We were also really fortunate to have our families with us. Every single day our parents came down to the hospital. They spent all day the first week with us and then we insisted they couldn't miss work. So after working all day, they would come down with us until we left for the evening. We had grandparents, siblings, other relatives, and friends come down frequently as well.
Here's a rundown of 1 Month:
We were released from the hospital...finally!
We had our days and nights totally mixed up.
Connor and I (Matt sometimes too) slept downstairs.
