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! 

Morning rounds 11:14am August 29th

Sorry we didn't update the blog again last night, we had everything packed up to move from the waiting room into Owen's room and we didn't bother getting the laptop back out to post another update.  So last night we were able to go back into Owen's room shortly after 6pm.  Owen had three chest tubes in and he just had a nasal canula to assist his breathing.  Owen was pretty fussy, and man did his voice sound raw from the ventilator that they had him on during surgery.  They increased his medications to calm him down more and then he relaxed a bit.  By 9pm, we were ready to get some sleep so we went back to the Ronald McDonald house.

This morning Cassie called the hospital around 6am for an update on Owen.  Overnight Owen was waking up about every two hours crying so they were giving him morphine for pain.

By the time we got to the hospital this morning, they had already taken out one of Owen's chest tubes because it wasn't draining anymore, and they had changed all of his dressings.

Nothing new really at rounds today.  We were giving Owen some oral cares when the doctors were in here and Dr Ghanayem looked over and said that it looked like he wanted to eat.  So we gave him a bottle of enfalyte and he made short work of it.  He actually took nearly 120ml of enfalyte.  Now Owen seems to be getting upset, he is crying, but it is nice to be able to hear him.  It really sucked after his Norwood when you could see that he was crying but you couldn't hear anything because of the breating tube down his throat.

Off to the CICU 5:16pm August 28th

Well, Owen is out of surgery now.  We got to see him as they were wheeling him off to the CICU.  Now we just have to wait for them to get him all settled in before we can join him in his room.  He looks really great though, totally drugged out, but that is to be expected.

Off by-pass 3:32pm August 28th

Owen is now off of the heart and lung machine and the repair looks really good.  Now they just have to deal with whatever bleeding there might be before they close up his chest.

Repair complete 3:08pm August 28th

Latest update.  They are nearly done with the repair.  Now they just have to warm Owen back up, take him off the heart and lung machine, get an echo cardiogram, and close up his chest.  They already have his chest tubes and pacer wires in.  After they get him off the heart and lung machine, they will address any bleeding that there might be, and once that is done they will be all ready to close up his chest.

Update 2:07pm August 28th

The latest update on Owen's surgery.  Everything is going really well so far.  They have completed the dissection and are ready to start the Glenn procedure itself.  By the next update they might actually be done stitching the superior vena cava to the pulmonary artery.

Update 12:55pm August 28th

The scrub nurse just came out to give us an update on Owen's surgery.  They are just getting started and are now opening his sternum.  Once they are in, they will begin dissection to remove any scar tissue from the Norwood so they can get to the heart.  So far everything has been going smoothly.

Sleeping 11:30am August 28th

So the scrub nurse from Owen's surgery just gave us an update.  Owen is now sleeping and they have his art line and his IV's in.  They didn't start the procedure yet, they still have to drape him for the surgery.  Once they have him all prepped, Dr. Tweddel is going to come talk to us to discuss the procedure.

Surgery prep 10:45am August 28th

So we got to the hospital just before 9am this morning.  After waiting in the pre-op waiting room for a few minutes, we went back into the surgery prep area.  Now Cassie and I are waiting in the family waiting room.  The anesthesiologist took Owen around 10:30 to get him prepped for surgery.  Now it is just a waiting game.  They should give us updates every hour once Owen is in surgery, so we should be updating the blog with every update we get.  They said the surgery should take 5-6 hours, so Owen probably won't be out of surgery until like 5pm at the earliest, they have to sedate him and get a couple IV lines started before he even goes into surgery.  We are in for a very long day.

Pre-op appointments!! August 27th 2012 3:15pm

Well today was the big day that we made our journey down to Children's Hospital for Owen's pre-op appointment this morning.  We woke up at 5 am to start getting ready for what has been a long day thus far. We had to be at Children's Hospital at 9 am where we met up with one of the pre-op nurses who took a urine sample and went through all the consent forms that we are required to sign before any procedures that Owen has. Taking a urine sample from a baby is pretty interesting.  They have these little bags that have an adhesive edge and you basically line up the penis with the hole (in Owen's case) and press down the adhesive and hope that the urine doesn't leak out!  After we met with the pre-op nurse we did A LOT of waiting, and by  a lot, I really mean A LOT. We met with an anesthesiologist, who happens to be the husband of one of the nurse practitioner's that Owen saw on a regular basis between these two surgeries.  We also met with a PA in the pre-op clinic and he did an assessment of Owen.

Once we were done with that part, we had to go back to the 1st floor to get a chest xray for Owen, which was actually a little humorous.  They have this little wooden chair that they strap babies and small children into with velcro straps.  For younger babies they have to use masking tape to hold up their chin and our little Owen, being the silly little guy he is, didn't cry or fuss at all, in fact he was smiling at me through the masking tape and it just looked so funny! We couldn't help but giggle.  Don't worry, we snapped a picture.  Then we had to go up to the 2nd floor to the Herma Heart Center for Owen to get an EKG and he is such a squirmy baby that we had to hold him down for that too because he kept pulling the EKG clips off!! We had quite a few laughs with the tech that was preforming it. Oh yes, and we have a picture of that too. Lastly we had to walk all the way down the Skywalk to the lab draw office so they could draw a bunch of blood to run tests before tomorrow(one being an HIV test, which is standard procedure prior to surgery).  Wouldn't you know Owen fell asleep right before we were called to go back.  I ended up holding Owen while they drew his blood and he only cried for about a minute and then fell back to sleep! I thought for sure he was going to scream bloody murder throughout the whole thing.

Then finally when we were all finished running around the hospital, we stopped at the skywalk deli for lunch.  Then we had to figure out where we were staying tonight.  We weren't able to get in at the Ronald McDonald House for tonight(we've been on the wait list for 5 days already too!), so we checked into a room at the Super 8 on Mayfair Road.  A lot of the area hotels have special rates for parents and family that have loved ones in the hospital or that are staying down here while their family member receives outpatient treatment.  So we are hanging out here for tonight and hopefully will be able to get in at the RMH tomorrow!

Owen's surgery is scheduled for 11 am tomorrow morning and we have to be there at 9 am.  The stay for this surgery is much much shorter than the last one.  If everything goes perfectly Owen and I should be home in 5-10 days.  That's all I have for now, so stay tuned and we will try our best to keep updating the blog throughout the day tomorrow.

We recieved a phone call shortly after I was almost finished writing this saying there was an available room for is at the Ronald McDonald house!! So we didn't want to miss our chance and I am glad we left the Super 8 and came here.  It feels so much more like home here. Well I'm off to do some pre-bedtime Snuggling with my little man before tomorrow morning!  Love you all! <3

Last Interstage 11:08pm August 7th 2012

Well, today we had our last Interstage appointment before Owen has his Glenn surgery on August 28th, provided that there are no medical emergencies.  Owen is still doing well.  Everything looks great, his blood pressures are good (they check on his leg and on his arm), his blood oxygenation levels are still good, and he is still gaining weight and meeting his maintenance goals every day.  They decided today to cut back on his dose of Captopril, actually to halve his dose because his oxygenation levels have been coming down, they still aren't anything to worry about, but there has been a steady decline recently.  They also decided to increase his dose of Ranitidine (the medication for reflux), they found one article stating that there might be a link between reflux and sleep eating in babies (Owen still only eats when he is a sleep which gets very stressful during the day, it is the rare occasion when Owen is actually awake and sucking on the bottle, usually when he wakes up already sucking on the bottle).  At the end of Owen's appointment, we were talking with Dr. Afolter and he said that Owen will be the oldest Glenn baby that they have operated on in a long time, with most babies in Owen's condition it becomes necessary to perform the Glenn at a younger age.  Only a few short days after Owen's surgery he will be five months old.  It is amazing to think of how far we have come.  It has been a long road and we have learned a lot along the way, but that road is still longer yet.  I think we will be happy to reach that next mile marker along the road, it will mean some big changes at home.  After Owen's Glenn we won't need to weigh him every morning and his fluid intake won't be of such a big concern.  I think the hardest part of his recovery will be that we won't be able to hold him all of the time like we do now and a lot of things that we do to comfort him we won't be able to do anymore.  It will be hard but it will be a great relief to have the Glenn out of the way.

Postponed! August 1 9:58pm

I guess I haven't posted anything in a while.  Owen's surgery was supposed to be on July 17th and the Friday before hand we received a phone call saying they are really impressed with the data from Owen's heart that they have been collecting over the past few months from us, Owen's echo, and his cath.  That being said they wanted to reschedule his glenn procedure for late August.  His surgeon, Dr. Twedell, thinks he will do better in the long run if we wait until at least 4 months old.  Owen's surgery has been rescheduled for August 28th, almost a week before he will be 5 months old.  We are very excited because we have a little more time to enjoy our summer! Owen and I have gone to the farmer's market a few times, once with Auntie Trisha.  We spent a majority of last weekend with Auntie Trisha and a few of Owen's other aunties while Trisha and RJ moved into their new apartment. Owen was able to meet his cousins, Sydney and Elliot on July 13th for the first time. Sydney, Elliot, and Kate spent the day at our house while their vehicle was having some work done. We had a fun time!  On the 22nd Owen met his other two cousins, Aiden and Logan, at Kevin's aunt and uncle's 25th wedding anniversary. Other than that Owen and I just hang out all day long, I've been working on planning for a wedding that I am shooting on August 24th.  My father-in-law, Paul, has been very helpful with making some awesome props for me to use in the couple's wedding pictures!  This weekend we are taking a mini-vacation up to our friend's cottage in Shawano.  It's going to be very fun and we can't wait to share this experience with Owen.

Milestone-wise, Owen has been picking up all sorts of toys, holding his head up very steadily, non-stop chattering, and he has even rolled from his back to his stomach a few times!!

And tonight Owen giggled for the first time!!!

So all that being said, I have tons of new pictures for you all to enjoy!

 

 

 

 

That's right, I'm a ladies man.

 

 

 

For some reason, Owen likes to put his leg up on things.

 

 

Getting ready for our weekend up north!