1 Month Old

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.
• Hates tummy time
• Does not like being put down at all!

Finally Home

We are finally home with our little man.  I'm still working on a post that outlines everything we went through at MUSC.  We did end up getting to leave Monday, but it was not until after 6 p.m.  We knew there were a lot of things that needed to be done to come home so Matt and I woke up early and were at the hospital by 8:30.  The eye doctors paid us a surprise visit, something we definitely weren't expecting.  The echo tech didn't come until 1:00 of course right after Connor ate so he hadn't been under his oxygen hood for about 30 minutes and he also wasn't asleep.  He screamed the entire time and at one point we had to stop the ultrasound so Matt could pick him up to calm him down.  She said she wasn't sure how good the pictures would be and the doctors would look at them "in the next couple of hours" and he may have have 2 more echos done.  We started to think he may not get to leave after all.

We did find out that Connor did not have to do the car seat test so that was an hour and a half we didn't have to worry about.  The cardiologist came by and confirmed we could leave around 3:45 so we were SO happy.  However, Connor would have to come home on oxygen.  At that point we didn't care...we just wanted him home!  We called our family to let them know and began picking out which outfit he would come home in.  While we were doing that, Tammy our nurse practitioner came in and said we wouldn't be able to come home because the oxygen people couldn't come.  We were crushed.  Luckily someone from the hospital called and we were able to get someone to come out and give us some temporary tanks to last through the night.  The eye doctors then came back while the oxygen guy was there and gave Connor a full eye exam which he HATED.  It broke my heart to hear him wailing.  The good news was that he didn't set off his high heart rate alarm on the apnea monitor!  They prescribed some eye drops for Connor.

Here we are leaving MUSC after 23 days at the hospital

It has been very little sleep for mommy and daddy while Connor adjusts to life at home.  The past two nights I've gotten probably 2-4 hours of sleep in random chunks.  But, this little boy is all worth it!

Here are some pictures from our first night at home:

Daddy and Connor on our first night home

 Tummy Time on our first night home!

Here are some pictures from today:

 He loves his Rainforest Bouncer from Auntie Jessie!

I don't know why this picture won't rotate, but look who tore off his tape.  This kid is STRONG!

3 Weeks Old

Connor is officially 3 weeks old today!

He is seriously the sweetest little boy ever! Matt and I can't get enough!

We are still being told that he will be discharged tomorrow, but it's hard to get too excited because we've been down this road twice before.  However, everyone seems positive tomorrow is the day.  We have a lot that has to go on before we leave the hospital:

• Follow up echo without the oxygen hood to determine if we need to go home on oxygen
• Car seat test to make sure he can handle being in the car seat without any apnic events
• Get the apnea monitor set up

Here are some videos we took of Connor yesterday...he's such a stud!

He is NOT a fan of being under his oxygen hood and will try to escape:

Not sure why this video is so dark, but oh well

Updates

Connor is obviously still at MUSC.  We were originally told we would be able to leave Friday the 8th.  We were SO excited...the end was near.  They came Thursday to do a routine follow up echo (ultrasound) of his heart, since his first two didn't show a huge difference.  Connor had been off oxygen and was doing great, so they didn't think there would be anything too concerning.

We were at lunch when we got the call that the echo showed pulmonary hypertension...basically he was having to work too hard to get oxygen out.  It was a surprise to everyone because he had been doing SO well.  They decided to place Connor under an oxygen hood for an hour and do a repeat echo to see if there was a change.

Connor under his oxygen hood

Matt and I were with Connor when the ultrasound tech arrived.  She got everything set up and Dr. Atz, the cardiologist, came in to observe the ultrasound.  He watched and begin muttering to the resident who joined him and Matt and I had no idea what to think.  He came over and said that the echo looked great and was the best that we could hope for.  Basically the oxygen allowed the muscles to relax and we were able to kind of "trick them" into relaxing.  The goal is obviously for him to not go home on oxygen, especially considering he's already going home on an apnea monitor.  So, they gave him some medicine and he continues to be on medicine to help the hypertension.  The plan is for him to be under the oxygen hood as much as possible this weekend.  Monday, we will remove the oxygen hood for about an hour and do a repeat echo to see if it has improved even more.  If so, we likely won't have to go home on oxygen, but if not, we will.  Everyone seems to think we will definitely be going home Monday, but Matt and I have heard that before and it is absolutely crushing to find out you won't be going home that day.  So Matt and I are trying not to get too excited about a possible homecoming on Monday.  Especially considering we were less than 24 hours from taking him home when we found out about this.  

Connor is continuing to do really well and man can this boy eat!  The past two days he has gained 3 oz. each day!  He is now 5 pounds 13 ounces, just 1 ounce away from being a whole pound heavier!  Matt and I are so excited to begin our journey with him at home and appreciate everyone's thoughts and prayers during this time.  Here are some recent pictures of our little snuggle bug:

This kid can move his head!

Someone may have been a little fussy during this picture...

2 Weeks Old

I never would have thought we'd be celebrating Connor being 2 weeks old at MUSC, but alas, we are still there.

SO much has happened in our time at MUSC.  I may write another post outlining just how crazy our days have been with news, tests, and results.  Connor has certainly been put through the wringer.

Here are some pictures of him at 2 weeks old!

This is his "thinking face"

I love seeing all of the different positions he sleeps in

Oh my goodness, I can't get enough of this face!  

My little chunky monkey is putting on some weight!

We got a little nervous driving down Sunday morning because Matt got a phone call from our favorite NICU nurse Katherine.  She was actually calling to say Connor was getting moved from the NICU back down to Level 2!  This was GREAT news, but we were SO sad to not have Katherine as our nurse anymore.  She was fantastic and took such great care of our little guy.  

He was weighed Sunday night and he weighed 5 pounds 6 1/2 ounces!  Not too shabby considering they said it could take up to 2 weeks just to get back to your birth weight!  Our little boy LOVES to eat, which is not surprising considering his Mommy and Daddy like to eat too!  He still has his feeding tub in in these pictures, but it was taken out today.  For some reason a couple of nurses couldn't get him to eat out of a bottle, but Matt and I had no problems.  He was also changed from a set amount of food to being "ad lib" which means he can eat as much as he wants, when he wants.  The nurses said he's been a much happier baby now.  Believe it or not, last week they were giving him Adavan (sp?) for anxiety because they couldn't calm him down.  I bet he was just hungry!

Today he is 2 weeks, 1 day and he has been doing SOOOO good.  I am one proud mommy!  The neurologist came by today and said aside from having a little weak muscle tone, everything else looked great...he was moving all limbs equally and he had good head control.  He also got an x-ray done on his lungs, just to make sure everything looks good.  He's been on oxygen ever since day 1, thus the nasal cannula in all the pictures.  Yesterday we were having to bump him up to 40% oxygen during feeds and it was kind of an up down all day with his oxygen levels.  We rarely went below 25% oxygen.  Well today, his oxygen was FANTASTIC!  He did great on room air (21% oxygen...the lowest it gets) and a flow of 2 (yesterday it was at 4).  Matt asked what is keeping us from going home and they said they would really like to get him off the oxygen totally and us not have to go home on it.  So we were thinking we should be home by mid-week or the weekend at the latest.  Then, we had a curve ball thrown at us.  They want to wean him off one of his seizure medicines and see if we can go home on only one.  Unfortunately this means we'll likely be at MUSC at least another week.  The plus side is we can maybe go home on less medicine and if it's something Connor doesn't need, he won't be on it.

We really appreciate every one's thoughts and prayers during this time.  To say it has been an emotional roller coaster would be an understatement.  Matt and I are so thankful for everyone and especially for our little man Connor...we already love him so much!