Movin' On Up!

Hello everyone!!

It has been a while since we have updated the blog, and for that I apologize. We have been up to a lot lately. Owen has been playing catch-up with his immunizations and has gone through two rounds so far.  He also has been given the flu shot twice and he will continue to get an RSV shot once a month until May(through cold and flu season). We also had our last cardiology appointment in November until March(unless he gets sick or an emergency arises)!! This is the longest we will have gone without seeing Owen's cardiologist! This is a huge accomplishment. :)

Owen's cardiologist was very thrilled with how Owen's heart is doing, that now we are shifting focus to some minor issues Owen has.  He has had a rash for quite a while now, so we were referred to an allergist in the Appleton area. The allergist didn't find anything that Owen is allergic to, so we are back to square one. I have a feeling the next stop might be to see a dermatologist for his rash.  We are also going to see the urologist after the holidays for Owen's Hypospadias and to get him circumcised!

As for milestones, Owen can roll from back to tummy and from tummy to back. He is almost able to crawl, he just has to figure out how to pick his head up and build up a little more upper body strength. He walks and stands if he holds your fingers and he seems to have the "ba" sound mastered already. Owen can click his tongue now and we have even heard a few raspberries from him too! He loves to scream, so I apologize to our upstairs neighbor, Shawna! He has his first tooth coming in, I would say it should be here just in time for Christmas. He is such a chatterbox at times, it is so adorable. He can kind of wave, but only when he feels like it.  He has even graduated from the baby bathtub to a bath seat in the big tub! He can also sit up on his own. We have been doing solid foods for a few months now and we have even started giving Owen Cheerios, which he seems to love more than the baby food, and I swear I find Cheerios all over the house now. And Owen can use a sippy cup now!! Last weekend he took a whole bottle out of a sippy cup.

Owen is now baptized too. We had a nice little baptism with our immediate family and close friends.  We then had a pizza party at Port Sandy Bay.  We have taken Owen on two trips to Illinois to visit Kevin's brother, Andrew and his family.  We went in October and actually stayed the night and went to the zoo for Owen's first time with Kevin's parents, siblings, and their familes.  It was a fun family outing! The next time we went down for Thanksgiving and Owen and his cousins had their holiday pictures taken in matching outfits. We also spent an entire weekend in Madison in October for Halloween with Kevin's brother, David and his wife Rebekah, and we were able to bring Bear too.

Except for our Christmas festivities, we are limiting Owen's public exposure to keep his risk of getting sick low.  Other than that, our life is pretty calm at the moment. At least for two weeks and then we will be dog-sitting Bear's girlfriend Cali...They always seem to keep us on our toes! I will try to post a bunch of pictures this week, so stay tuned!

Photo bomb!

Sorry we haven't posted in a while. So here is what we have been up to. Owen came home after only 5 days after surgery and the first week at home was complete hell, but we made it through and we have started to notice his mood improving every day! He can now roll from gis back to stomach and stomach to back like a pro. Owen is also a very giggly baby. So here are the pictures I promised!

Homebound.

We are going home today!! Woooo! Owen is quite the record breaker around here!

Morning rounds 10:22am September 1st

So overnight Owen did pretty well.  When we left last night Owen had a little bit of oxygen through the nasal canula because his pulse ox was kind of low.  They took off the oxygen around 5am and since then he has been sating in the upper 70's low 80's for oxygen saturation.  He ate well over night too, and he is still eating while he is awake, so hopefully that will hold for when we go home, it will be so much easier if he will eat when he is awake.

Except for when we first got here this morning and Owen was a little fussy, he has been pretty happy.  Nothing really changed during rounds this morning.  We won't be going home today like Cassie thought we might yesterday.  They want to observe Owen for at least another day because they took out his chest tubes so early.  They also want to keep him on a diuretic to make sure that he doesn't start accumulating fluid on his lungs.  So now today, I think they will be weening him off of the diuretic which they are giving twice a day (down from three times a day) and if his lungs are looking clear tomorrow we might just be able to go home.

Big Strides August 31, 2012 10am

This morning Owen had his chest tubes and his CVL pulled out. They also pulled his iv line out of his hand so he only has his pox, renal patch, and 5 point chest leads in.  They should be rounding eventually today so we will find out more.  

Owen will also have an Echo today and the ENT will come see him to scope his vocal chords to see if he is still paralyzed.  

So far this morning he has been very happy and smiley. :)

 

Updates!! August 30 2012 10:29am

Well Kevin went home last night so he could work today and tomorrow, so it's just me and O-man. This morning his nurse said that he was very uncomfortable all night and his night nurse, Kate, gave him morphine a few times. So far this morning he hasn't had any morphine since 6am-ish which I am very excited about! :) He took some pedialyte around 6ish and then when I arrived this morning his nurse, Jamie, and I gave him his first bottle of formula he has had since Monday night at 9pm! He sucked 90ml down like nothing! Then we carefully sat him up so we could burp him so he wouldn't exorcism style vomit all over the room(he has been known to do such a thing).  He seemed pretty comfy being sat up, despite having his chest tubes still in place.  In fact he even fell asleep in that position!!

They also went up on his Clonodine overnight, but brought it back down this morning and increased his Enlapril instead.  When we were at home Owen was taking Captopril for his blood pressure regulation, but they switched him to Enlapril now and I think it's been working better than Captopril did.  During rounds today it was decided that he will get his ART line out and his Foley will come out as well.  I think I'm going to ask to hold him later today. Kevin and I were both very nervous about holding him with his chest tubes still in, but since he is getting a lot of his other lines out, I think I will be more comfortable with it as long as the nurse assists me. Today we are also weening Owen off of Dex, so he should be way more awake, as well as weening his nasal canula to 1L instead of 3.  We also recieved the good news that Owen will be going home on unfortified formula!! Yay! I hate having to fortify formula. Such a pain.

Last night I ran into my friend Amanda, who is a heart mom as well.  Her son was having his first surgery last night and they are just down the hall from us now.  So it will be nice to be able to talk to her while Kevin is at home for work.

Picture Bomb! August 29 12:42pm

Well, shortly before noon Owen decided to throw a HUGE fit. And buy huge, I mean sink the Titanic huge. He ended up kicking so hard that one of his chest tubes came off the suction tube and they are zip tied to the suction tube. Oh boy.  It took quite a while to calm him down, but now he is sleeping comfortably.  I thought I would post some pictures that we have from the past month or so.

Pre-op EKG

He covered his face in his sleep himself!

Getting a bath at the Ronald McDonald House!

 

 

Beads of Courage!

Sitting in the stroller big boy style!

 

I want to use this spoon myself!

 

The stuffed animal we got for Owen during his surgery!

Right after surgery

Day after surgery.

Our art therapy project at RMH on Monday night!