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Sunday, March 27, 2011

Baby Oakes Zooms Past Milestone # 3 & # 4

Good evening friends and family.  We hope you’re ending your week beautifully.  I apologize for the extra delay in this update that I had originally promised no later than Friday.  We were able to update the blog a few times since then, so this may be repetitive if you’ve visited the blog lately.

 

In short, Oakes is earning his nickname “Mighty” Oakes in a big way.  He’s absolutely rocking the CICU!  So here is the last four days summarized as briefly as possible while trying to hit all the key updates.

 

Thursday, as you know, Oakes had a procedure to repair the wound in his chest, which was still open from when they accessed his heart and trachea during Tuesday’s surgery.  Originally set for 1pm, they moved it to 11am.  Becky and I were running late and got to kiss him on his forehead just a minute before they started.  They did this in our CICU room while we waited in a consultation room a few feet away.  Within 30 minutes, Dr. Huddleston was in our room letting us know everything went as planned.  They weren’t sure how many stitches they used, but they were all under the skin and would dissolve over time.  They’ve come a long way with stitches since I was a kid.  They did have to wire his sternum together, but they said this, too, was not a long-term issue since the bone would grow around the wire without issue.  Dr. H, as is his way, did mention the “worst case” scenario of needing to re-open his chest at some point if things went awry.  If all was well, he estimated by Saturday morning they might remove the breathing tube or “extubate” him as the medical folks call it.  He also said that the first 6-8 hours were when most issues, if any, would occur.  What has become a recurring theme, Oakes flew through those hours without issue.  By Friday morning, they were taking Oakes off the paralyzing medication, reducing his pain medication and removing several of his lines that he had throughout his body.

 

Friday afternoon, Oakes was extubated, clearing the 4th milestone Dr. Huddleston had mentioned (1 – surgery, 2 – first 12 hours post-op, 3 – closing the chest, 4 – extubation).  It was an incredible accomplishment for the little guy!  It was so incredibly exciting to know he had cleared all four milestones, but we knew we had a long way to go.

 

Friday night, we took a couple hours to have fun, so me, Becky and her mom went to dinner to celebrate Oakes’ recovery as well as Becky’s birthday, which happened to be on the day of Oakes’ surgery.

 

Saturday was a smooth day again.  Doctors were coming by to check on him periodically and all the reviews were extremely positive – he couldn’t be doing any better.  Becky got to hold Oakes for the first time since right before surgery on Saturday afternoon and they finally let us feed him – his first real food since March 11th, his second day with us.  They also took out his drainage tube to his heart yesterday, the last tube other than the two lines out of his left arm they use to give him medicine and draw blood.  By the end of the day yesterday, he was totally off pain medication except an occasional dose of Tylenol.  Today, Sunday, was a day where we could hold him and feed him (or “try” to feed him in my case).  None of his monitors alarmed at all throughout the day indicating he was comfortable and healthy.  Overall, Oakes appears mostly happy.  He doesn’t have a full cry back yet, it’s more of a half-cry, very soft and sweet, but indicating he’s not happy about something.  He rarely does this, but his blood pressure goes up when he does, sorta like his papa.  He’s also opening his eyes a lot more know and looks just as cute as ever!

 

We are expecting Oakes to get moved to 7-West, which is a step-down unit from the CICU (although literally down the hall), sometime tomorrow (Monday).  This will mean, as long as everything continues to go smooth, that he could be home by Thursday or Friday.  I’ve asked him to be good and get home by Wednesday.  It appears as though the Mighty Oakes is a few days away from spending time with his big sister, Isla P, at home.  This will be some precious time and we cannot wait!

 

The one thing that continues to linger in our heads and is causing an incredible amount of uncertainty and fear is the genetic testing.  Some of these tests may start to trickle in some time this coming week.  And we’re not sure if the results will even be conclusive.  Needless to say, we’re planning on having a thorough, sit-down meeting with the geneticist soon.  All of the surgery and recovery has really taken most of our minds off of what could be looming ahead, but now that we appear to have that in our rearview mirror, we are turning toward the genetics part of this.  So with that said, we cannot thank you enough for all of your prayers and thoughts over the last two weeks – they have obviously helped pull Oakesie through all of this – but we would still like to humbly request that you keep them going for just a couple more weeks.  Technically, we don’t have the test results back yet and we’ve had no diagnosis so maybe all of Oakes’ Angels here can make those chromosomes look as tidy as possible.  But yes, it appears that, at minimum, we’ll have a little baby boy, named Oakes, with a repaired heart and trachea, who has inspired hundreds of people he has never met, coming home to be with his family.  And we’ll love him forever.

 

Becky has put some GREAT pictures on the blog showing Oakes without as many tubes and wires as before.  Hopefully you’ll get a sense of how comfortable he is now.  Some of you have asked about visiting, which is so sweet.  With everything going on at the hospital and as sensitive as his body is right now, Beck and I are thinking we should wait until he’s home for a couple weeks before we have too many visitors.  So if you feel like visiting then, just shoot us a note.  Also, I’ve been poor about returning emails the last 3-4 days, so I apologize for that, but know that we have read every single one and each of them has been incredibly appreciated.  Those emails and all of your prayers are the only things that have kept me and Becky strong throughout this process.

 

Since Becky and I are now overlapping in emails and blog-posts, I’ll probably stop these for a while or at least stop the long, descriptive emails and maybe replace them with quick updates when anything major happens (i.e. he comes home). 

 

Love,

 

Greg, Becky, Isla & Oakes

 

From: Greg Ortyl
Sent: Wednesday, March 23, 2011 5:43 PM
To:
Cc: 'becky fox ortyl'
Subject: Baby Oakes - Milestone #2

 

Good afternoon everyone.  Hope you are all having as good of a day as Oakes!  Yes, our little man is greater than 24 hours post-op, the most critical time for recovery and he is doing well.  I don’t want to overstate or understate his condition, so I’ll try as best I can to give you the reality of the situation. 

 

If you’ve kept up with the blog, you know that I spent the night with Oakes.  It was a long day yesterday, since we were at the hospital from 6:30am to about 5:30pm.  We went home and had a fun, sort of relaxing dinner on our porch – me, Isla, Becky, Connie (Beck’s mom) and Sarah (one of Beck’s sisters).  I say ‘sort of’ because Isla was obsessed with wanting us to blow bubbles the whole time.  It’s one of her favorite things in life.  After dinner, I headed back to the hospital and got there about 8:30pm.  Although Connie has spent the night a couple times with him, it was the first night I spent with Oakes.  All I can say is that I could just FEEL him telling me he wanted his papa with him last night – there was just this tremendous tug on my heart and really my whole being to be in the room with him during his most critical time.  I never really discussed it, I just showered, packed and was on my way.  When I arrived, his blood pressure was too low, so they tweaked the medication.  The nurse, Mary, kept telling me that it’s just a delicate balancing act during the first 24 hours to find the right cocktail of medication to stabilize everything.  Well, by 11:15pm, his blood pressure was too high, so they again tweaked the medication.  By 11:45pm, his vital signs were right in range of where they should be and, miraculously, they stayed there all night long and remain there as of 5pm today!  That means, more than 26 hours after surgery, the Mighty Oakes, has made it past the second major milestone that Dr. Huddleston had laid out for him.  It’s so hard to be ecstatic or overly relieved anymore because there are so many hurdles remaining, but I’m so proud of how hard he is battling.

 

We had our first non-family visitor to the hospital last night.  My buddy Derek Falb was keeping up on the blog and said he just couldn’t imagine being alone in the room with Oakes, so at 10:45pm, he decided to drive 30 minutes to the hospital to hang out with me and Oakes.  As I mentioned in the blog, it’s a small miracle security let him through, but it was fun to chat about other things besides blood pressure and lactates.  I definitely never felt alone.  Besides the fact that Oakes was there and Mary, our nurse, was there, I had such a serene feeling being there with him.  I loved it.  That’s why I only slept two hours!

 

Throughout the night, the only issue Oakes had was that his lactates (lactic acid) were higher than they’d like.  They started him on some diuretics today and they have been lowering ever since, so he is really right on path to the third major milestone which appears will happen tomorrow early to mid-afternoon.  The omni-present Dr. Huddleston has a surgery tomorrow morning and then will come by Oakes’ room to close his chest.   They’ll do this procedure in his existing CICU room.  It will be critical to see how his heart and other organs respond to having less room to beat and do their job.  Right now, when he breathes, it’s quite graphic because there’s really not much between his actual heart and your eyes.  When I look at it, I go from amazed, to feeling queasy, to being inspired all in split seconds.  So we are praying hard that all of Oakes’ organs will be happy.  We’ll have to somehow incorporate this into Isla’s favorite song tonight before bedtime “If You’re Happy And You Know It…”

 

When Connie relieved me this morning around 8am, I packed up and was ready to leave.  I leaned over Mighty Oakes and told him I was proud of him and loved him so much and that mama and Isla love him.  Right when I got done, his whole body twitched.  I’m convinced he heard me and understood me.  The nurse will tell you that he randomly twitched throughout the night.  But as I said, I’m convinced….

 

I think you guys would all love Dr. Huddleston.  He’s obviously a miracle-worker, but he’s also a funny guy to observe.  He is very, very to the point and, unlike me, very selective in his words and only speaks when absolutely necessary.  He walks very slowly and sometimes will walk into our room, stand over Oakes, listen to his heartbeat, look at his monitors and walk out in about 2-3 minutes and without ever saying a word.  I can’t imagine the lives he and his colleagues live, but I can say I have just unparalleled respect for their profession, their heart and their wisdom.

 

Hopefully no updates for around 24 to 48 hours when we know how the closing of the chest went tomorrow.  Of course, that doesn’t preclude some blog updates, so feel free to visit there.  In the meantime, here is a picture of gorgeous Mighty Oakes before surgery, very early yesterday morning, fresh from a bath so his hair is super soft and spiky.  Thank you all!

 

 

Love,

 

Greg, Becky, Isla & Oakes

www.babyortyl.blogspot.com

If Your Might And You Know It....

....Clap your hands!! Seriously, Oakes deserves a round of applause, he is going to cruise on out of the CICU tomorrow morning and we will not look back! In the last two days every line, IV, drain and monitor has been removed from Oakes strong little body except for two IV's (and these will stay in until he is discharged). He has also finished up all of his meds and is only getting pain killers to make him comfy. Yesterday we were allowed to hold him for the first time post-op which was a thrill! Typically at the end of the day, my (Becky) top concerns and thrills are not focused on his numbers or milestones reached they are always centered around small maternal details that just pull on my heart....is he comfortable?, is he clean?, is he happy?, can I see him?, can he see us - does he know we are here?, can I touch him or hold him?, etc...so to get to hold him after several days of just standing by warmed this Mommas heart. The other exciting event that took place yesterday was giving Oakes a bottle. Since he was born he has only had one bottle, and that was on day two. Since then he has been getting all of his nutrients intravenously, so we have been very excited to bottle feed him and try to plump him up a bit! So far, so good. He latches on and swallows with no problem, we just need him to consume more than he is currently, but that will happen in time. For now he will get a bottle, then will get whatever he doesn't consume on his own thought an NG (Nasogastric) tube. I can not imagine an Ortyl/Fox baby will have a problem eating!! So, tomorrow morning Oakes will move from Rm#1 of the CICU (which is on the 7th floor), right down the hall to what is called 7West , the CICU's step-down unit. Currently there is a nurse that sits right outside of Oakes' room and responds to anything that he needs immediately. On 7West, there are 3-4 kids to each nurse and lots of Nurse Assistants helping out. Greg and I will be required to be there more ofter to begin assuming Oakes' care, which we are excited about but will be a bit hectic. Oakes resting.
This was right before he got his NG tube, and right after the monitor on his forehead was removed. In this picture he has the nasal cannula that is giving him a little oxygen, a blood pressure cuff on his right foot, little leads with stickers on his torso to pull all of his stats, and then his two IVs are in him left arm...barley anything left!! (I got to see his chest this afternoon when his drainage tube was removed and I was shocked at how good it looked, it was simple, clean and very subtle already!)


And with the NG tube....I assured him he is still the cutest kid on 7 and the most loved!!

Friday, March 25, 2011

A Fantastic Friday!

We had another really great day today! Our little Oakes is hitting his milestones at a stead and strong pace. This afternoon he came off of all sedatives, and they slowly started to turn off the breathing machine. Numerous lines (or IV's) were removed, his Foley bulb and catheter were removed, his labs came back great, his numbers all looked good and by about 4pm the decision was made to remove his breathing tube! We just returned home from the hospital where he was breathing completely on his own, and seemed to be as comfortable as can be. When the breathing tube came out he woke up a bit and seemed to be pretty annoyed. He actually threw a little fit after being disturbed, and if you know Greg, hearing about his little temper makes perfect sense!

Before we left the hospital we were told that we may get to hold him tomorrow! There is a line that runs into his right atrium that has to be removed before we can hold him, but if he has a good night, then the odds of a Momma getting to snuggle her little man will increase greatly! This is the little milestone that I will be praying for tonight!!

Much love to all of you, friends and family as well as new friends that we haven't met yet, but that are praying for and loving our little Oakes from afar!


Oakes sleeping comfortably before having his tube removed.

....legs crossed!

And the tube is gone, just like that!


Seems like half of the amount of "stuff" from yesterday! And doesn't that look like a little smile?


Just as peaceful as can be!!

Visiting Our Mighty Oakes.

We have truly been amazed by the outpouring of love for Oakes, and we understand that everyone that is praying for him and thinking of him throughout the day is on pins and needles to see him in person, however Oakes is not quite ready for visitors. His team still wants him in a very controlled environment where is energy is concentrated solely on healing. We do not want to over stimulate him, nor do we do not want him to be exposed to any germs that are unnecessary. That being said, we are eager to show him off and will let you know when the baby lock-down comes to an end! Thanks for your understanding, Greg & Becky

Thursday, March 24, 2011

Another Milestone!

Ever since Oakes had his chest closed today Greg and I have been standing by. He has been so peaceful all afternoon and his breathing isn't nearly as labored as it has been in the past. He has started twitching and moving around a bit, which has been comforting to see. It is just amazing to look at him and think about all that his little body has been through in just 13 days. We are so thankful that he has done this well so far, and we are convinced it is because of the vortex of love and healing that surrounds him! I know Greg has said it, but thanks for all of the love and prayers, and please, keep them coming!!




Our guest blogger, blogging away!!
....and Nell, one of Children's resident K-9 therapists, she stopped by to say "Hi" to some of the bigger kids on the floor!

Oakes Chest Is Closed

The procedure just completed (yes, they moved it to 11am vs 1pm). Dr. Huddleston said it went great. He said the next six hours are critical. Worst case is they'd have to open him back up but Dr. H said he'd be "surprised" if that was the case based on the fact that everything looked so good and that it didn't appear too tight for his heart. The Mighty Oakes moves on...

Since the next six hours are critical I'll wait to update everyone some time tonight!

Greg, Becky, Isla and Oakes

Isla & Ena.

Despite the chaos, and the crazy schedules that we are all keeping, we are still having fun at home with our sweet little Isla P!

Here is Isla and Ena chopping brussel sprouts....Isla loved chopping them, but not eating them!


Here is Ena switching Isla's toenails from blue to green! Isla could not have been more excited!!



Wednesday, March 23, 2011

Baby Oakes - Milestone #2


Good afternoon everyone. Hope you are all having as good of a day as Oakes! Yes, our little man is greater than 24 hours post-op, the most critical time for recovery and he is doing well. I don’t want to overstate or understate his condition, so I’ll try as best I can to give you the reality of the situation.

If you’ve kept up with the blog, you know that I spent the night with Oakes. It was a long day yesterday, since we were at the hospital from 6:30am to about 5:30pm. We went home and had a fun, sort of relaxing dinner on our porch – me, Isla, Becky, Connie (Beck’s mom) and Sarah (one of Beck’s sisters). I say ‘sort of’ because Isla was obsessed with wanting us to blow bubbles the whole time. It’s one of her favorite things in life. After dinner, I headed back to the hospital and got there about 8:30pm. Although Connie has spent the night a couple times with him, it was the first night I spent with Oakes. All I can say is that I could just FEEL him telling me he wanted his papa with him last night – there was just this tremendous tug on my heart and really my whole being to be in the room with him during his most critical time. I never really discussed it, I just showered, packed and was on my way. When I arrived, his blood pressure was too low, so they tweaked the medication. The nurse, Mary, kept telling me that it’s just a delicate balancing act during the first 24 hours to find the right cocktail of medication to stabilize everything. Well, by 11:15pm, his blood pressure was too high, so they again tweaked the medication. By 11:45pm, his vital signs were right in range of where they should be and, miraculously, they stayed there all night long and remain there as of 5pm today! That means, more than 26 hours after surgery, the Mighty Oakes, has made it past the second major milestone that Dr. Huddleston had laid out for him. It’s so hard to be ecstatic or overly relieved anymore because there are so many hurdles remaining, but I’m so proud of how hard he is battling.

We had our first non-family visitor to the hospital last night. My buddy Derek Falb was keeping up on the blog and said he just couldn’t imagine being alone in the room with Oakes, so at 10:45pm, he decided to drive 30 minutes to the hospital to hang out with me and Oakes. As I mentioned in the blog, it’s a small miracle security let him through, but it was fun to chat about other things besides blood pressure and lactates. I definitely never felt alone. Besides the fact that Oakes was there and Mary, our nurse, was there, I had such a serene feeling being there with him. I loved it. That’s why I only slept two hours!


Throughout the night, the only issue Oakes had was that his lactates (lactic acid) were higher than they’d like. They started him on some diuretics today and they have been lowering ever since, so he is really right on path to the third major milestone which appears will happen tomorrow early to mid-afternoon. The omni-present Dr. Huddleston has a surgery tomorrow morning and then will come by Oakes’ room to close his chest. They’ll do this procedure in his existing CICU room. It will be critical to see how his heart and other organs respond to having less room to beat and do their job. Right now, when he breathes, it’s quite graphic because there’s really not much between his actual heart and your eyes. When I look at it, I go from amazed, to feeling queasy, to being inspired all in split seconds. So we are praying hard that all of Oakes’ organs will be happy. We’ll have to somehow incorporate this into Isla’s favorite song tonight before bedtime “If You’re Happy And You Know It…”


When Connie relieved me this morning around 8am, I packed up and was ready to leave. I leaned over Mighty Oakes and told him I was proud of him and loved him so much and that mama and Isla love him. Right when I got done, his whole body twitched. I’m convinced he heard me and understood me. The nurse will tell you that he randomly twitched throughout the night. But as I said, I’m convinced….


I think you guys would all love Dr. Huddleston. He’s obviously a miracle-worker, but he’s also a funny guy to observe. He is very, very to the point and, unlike me, very selective in his words and only speaks when absolutely necessary. He walks very slowly and sometimes will walk into our room, stand over Oakes, listen to his heartbeat, look at his monitors and walk out in about 2-3 minutes and without ever saying a word. I can’t imagine the lives he and his colleagues live, but I can say I have just unparalleled respect for their profession, their heart and their wisdom.


Hopefully no updates for around 24 to 48 hours when we know how the closing of the chest went tomorrow. Of course, that doesn’t preclude some blog updates, so feel free to visit there. In the meantime, here is a picture of gorgeous Mighty Oakes before surgery, very early yesterday morning, fresh from a bath so his hair is super soft and spiky. Thank you all!

Love,

Greg, Becky, Isla & Oakes

http://www.babyortyl.blogspot.com/

Don't Forget - You Can Post Comments

Not as user friendly or easy to see as Caring Bridge, but below each blog, there is an opportunity to post comments, if you are so inclined.

We Had A Great Night!!!!!

I'm extremely excited (but still cautious in my optimism) that we had a great night last night. I stayed up until about 3am and as I was hitting the hay, Oakes was stable and his numbers were good overall. The labs had stabilized, which was good. I woke up at 5am and everything was the same, which is great! The only thing that they remain concerned about are his "lactates" (as in lactic acid). They are higher than they'd like them to be, but Mary, our nurse keeps saying that he looks great and you wouldn't know the lactates are coming in high just by looking at him.

Of course, the omnipresent Dr. Huddleston stopped by around 6:15am this morning. It was uneventful which is exactly the type of visit we like! This would be in comparison to last night around 8:52pm when he stopped and lingered for about 20 minutes as they tried to figure out how to bring Oakes' blood pressure up.

I just listened in on rounds and all of his numbers are good. Dr. Oren, one of the attending Physicians here at the CICU, is concerned about the lactates, but not alarmed yet. He said it is to be expected. I guess considering Oakes was being dried out so much pre-surgery, it just seems to be taking his body a while to "catch up" and start disposing of these extra liquids. One thing did occur to Dr. Oren as they discussed his lactates and that is that he wants to check Oakes' liver function. He said it's possible that his liver may have been irritated from being on the bypass machine. If that's the case, then that would be the reason his lactates are up and then they'd know better how to treat it. If good liver function, then they may elect to start Oakes on diuretics to dry him out, just as they did pre-op.

Connie is on her way up here and the nurses are switching shifts. Courtney will be with us until 7:30pm tonight.

All is well here, so we're just praying for a smooth, comfy day for Baby Oakes!!

Night Time Post...

For some reason, I'm still up. I actually just got finished sending a proposal for work, which was nice to get out of the way. Oakes is stable and he's showing some positive signs - peeing, his temperature is on the rise and his blood pressure is good. Haven't taken any labs in hour or two and I'm wiped out. Hopefully I can grab a couple hours of shut eye in my little corner of Oakesie's CICU room....it'll be my first sleepover with my boy, Oakes!

View From The CICU....

It's about 10 after 1am. My good buddy, Derek Falb, totally surprised me and dropped by to visit Oakes. I'm still stunned they let him through security considering his background - actually security DID stop him. But it was fun to talk about Oakes and what we've been through the last couple weeks. It was also fun to chat about nothing related to hearts or tracheas or genetic testing. I appreciate his wife letting him skip out tonight. The only things missing were a few cold beverages.

As for Oakes himself, he is doing great. They have run several "labs" on him, which I have deduced are quick blood tests that they can review and compare to previous tests. All of his labs have come back good. Dr. Behrens, the Attending Physician at night this week, has stopped by many times to check on him. The only issue that he is having really at this point is his blood pressure. When I got here at 8:30pm, it was too low for the doctors' comfort level so they gave him some medication that helps boost it a bit. Then as Derek got here a couple hours ago, the blood pressure alarm went off indicating it was a bit high, so Mary, our nurse, came in and, after consulting with Dr. Behrens, stopped the one med they gave him earlier and started a different med that would assist in lowering the blood pressure. Mary called it a delicate balancing act, which I thought was appropriate.

It was Dr. Behrens who told me earlier today that the first 6-8 hours post-op would be the time to really watch him and we're past that. Of course, as I type, an alarm went off and I just got word from Dr. Behrens that his last lab was worse than the last one and obviously not the direction they want them going. So, the balancing act continues, they're raising his CO2 and reducing a medication. The nurse mentioned he looks better than his labs indicated, which I'd have to agree with, but I'm definitely a bit worried. Hopefully they get things headed back in the right direction soon!

Tuesday, March 22, 2011

RE: Baby Oakes Ortyl Update

Friends & Family – not sure if you’ve kept up with our day via the blog, but if you’d like a blow by blow account of the day, feel free to check it out at www.babyortyl.blogspot.com.  Becky also uploaded some pictures there.  As for the surgery, in short, it went well.  It was a very long, emotional day with me and Becky arriving here at Children’s Hospital at 6:30am.  Beck was able to hold Oakes for a few minutes before we followed him down to the OR.  We had a nice little private waiting room where the time absolutely flew by.  They called about an hour after we arrived and let us know that he was asleep and they started the surgery about 9:30am.  They had Oakes on the bypass machine by about 10:30am, a big step since that is the machine that pumps and oxygenates his blood for him while the doctors make the repairs.  And by 11:30am, Dr. Molter, the ENT doctor (or doctor of otolaryngology), was in the room letting us know the slide tracheoplasty portion of the surgery was complete.  He said it really couldn’t have gone much better.  They successfully cut the trachea in half and slid the two halves onto each other creating a breathing space that was twice as wide (or 4x the Area) as he previously had.  Dr. Molter was great – he drew us some pictures in our little diary that we’ve been keeping and probably stayed at least a half hour answering every last question we had.  He did say that there was some risk to Oakes’ nerves which serve his voice box.  Apparently it’s pretty unavoidable when shoving a metal tube with a scope down his trachea and doing so much work to the area.  It’s possible there is no issue with the nerve or it’s possible it is agitated which could cause short-term issues with breathing or a raspy voice or it’s possible, if the nerve is damaged enough or if the left and right nerves are damaged, he may need a tracheotomy for a while (months or years).  Won’t know this for a month maybe.

 

By 1:33pm, we received a call from the nurse saying the heart repairs had been made and that everything went as planned and the surgery was over.  Becky’s mom, Connie, and her sister, Sarah, were in the room with us and we all just started crying and hugging.  It was such a relief…..but only one small step in a long, emotional road.  Dr. Huddleston made his way up to our room around 3:17pm and was very brief with us, but expressed content with how the operation had gone.  He told us there were four major milestones to achieve for Oakes.  He just had the first – the surgery.  The second was getting past the first 24 hours.  The body is doing so much healing and accepting of the new tissue and all the trauma that it just went through so there are bound to be ups and downs during this time.  He said we should hope for a few small issues because there WILL be issues.  We just need to avoid the big issues.  The third milestone is closing the wound in his chest.  So I mentioned this on the blog, but because of how swollen the organs are in the chest, they actually don’t fully close the wound for a couple days to give the heart some room to do its job.  Hopefully by Thursday, they’ll close the wound.  Big step.  And the fourth milestone is when they take Oakes off the breathing machine, which will be sometime between Saturday and Monday in all likelihood.  So we now have some goals to watch for over the next few days.

 

By 4:30pm we were visiting Oakes back in our CICU room.  The nurse in charge of recovering heart surgery babies told us last week that no matter how much she tells us, it will never prepare us for when we seem him post-op.  Wow, was she right.  I was in shock.  Just felt helpless.  He will be asleep for a few days and we obviously won’t be able to hold him for quite a while.  It’s amazing what he’s been through so far at just 12 days old.  During the hour or so we were there, the biggest concern was his blood pressure or his “volume” as they called it, so they gave him some blood and played with his medications to bring it under control.  Beck and I had been through a long day, so we headed home to have dinner with Isla.  I returned back to the hospital about 8:30pm.  They are watching him very closely….so closely that I’m constantly on edge watching them.  Dr. Huddleston came in about 8:50pm – what a day, eh?!  He’s been here since we got here and was still making the rounds.  He suggested a new medication to help with the blood pressure so hopefully that works.  They say around 8 to 10 hours after surgery is where they start seeing issues almost every time, so I’m not looking forward to that.  That should be around 11pm or midnight tonight, but as I said, he is in great hands and they are very, very closely watching him (and I them!).

 

You all have probably heard of the Caring Bridge website.  Not sure if we’ll do that or not, but since we’ve invested so much time and energy into the blog, we’ll do our best to at least keep it updated.  I’ll try to update via email less frequently (maybe every couple days for the next week, then who knows), hoping that you can all follow along on the blog.  Beck does a great job with the pics and layout. 

 

I know it’s repetitive, but we are forever grateful to everyone.  We received the sweetest emails and texts and voice mails the last couple of weeks.  Oakes can feel your energy and love and we will pull him through this and get him home where he belongs sooner than later.

 

Greg, Becky, Isla & Oakes

www.babyortyl.blogspot.com

 

From: Greg Ortyl
Sent: Monday, March 21, 2011 11:03 PM
To:
Cc: 'becky fox ortyl'
Subject: Baby Oakes Ortyl Update

 

Friends & Family – we have been getting so many questions and requests for updates over the last week (can’t believe it’s been a week!), so we wanted to get an update out tonight, on the eve of Baby Oakes’ surgery.  I was sending an email to some of you and Becky was forwarding that email, so we’ve tried to combine this into one email to keep everyone posted.  I guess we were a little unprepared for how much you all wanted to be up to date on our little man.  As it turns out, these emails have been very therapeutic for us, so we appreciate your interest.  So here is the latest – a lot has happened in the last week, but we will try to keep it brief.

 

As you know, Oakes’ surgery was postponed last Tuesday when they found a genetic defect in his trachea, which also requires surgery.  So the rest of last week was really tough on him (and us).  There was a lot of activity around Oakes and various doctors floating in and out of his room at the CICU in the days following the aborted surgery.  I think Wednesday, I had a doctor come in and mention very casually about some fusing of bones in his pelvis which was news to us.  It turns out this is now the third congenital defect they’ve found which has raised a red flag with our doctors, giving them reason to think something more significant is going on.  We were introduced to a geneticist at the hospital last week who informed us that it is very likely Oakes has some kind of genetic syndrome.  This was (and is) difficult to process, particularly considering we completed an amniocentesis while Becky was pregnant for the specific purpose of genetic testing.  The two weeks we waited to hear back on those tests in October were the longest two weeks of our lives.  Back then, we were incredibly relieved to find out that all of the chromosomes appeared normal but apparently that test is not 100% accurate in ruling out any and all genetic issues.  The analogy the geneticist used with us was that the amniocentesis test was like checking to make sure a bookshelf of encyclopedias was lined up correctly, A through Z (which they were), but that the genetic testing they are completing over the next 2-4 weeks from now will be the equivalent of opening certain encyclopedias to ensure all of the chapters are laid out correctly.  What all of this means, as best we can tell, is that Oakes will have some developmental and/or physical challenges.  We’re not sure which challenges he may or may not have or how significant they will or will not be and, to be honest, we’re really not even sure when we’ll get any of these answers.  We all have images of how our lives will turn out and what certain things will be like in the future and this just wasn’t in the plan and trying to sort through the emotions and the reality of this is a challenge, to dramatically understate it. 

 

The good news is, for the most part, Oakesie has been stable over the last few days.  He did spend a couple days on heliox (helium/oxygen blend) to help him pass air through his trachea better, but he always appeared uncomfortable with the mask on.  When they removed it, he calmed down and was actually breathing better.  He has a very “scratchy” sounding exhale when he breathes and this is apparently due partially to his smaller trachea passageway and partially due to some fluid in and around his lungs which they’re trying to get out as best they can.  Sunday afternoon, he caught a fever which the CICU staff did not like at all.  It turns out he had a small infection that they successfully treated and today was probably his best day since before last Tuesday’s aborted surgery.  Becky got some great pics of Oakes today with his eyes open and making some really cute faces that she hopes to post to the blog some time tomorrow.

 

Months ago when we found out Oakes would require open heart surgery, we never really thought the surgery would be a “relief” or a “distraction” but that is exactly what it has become.  With everything he has been through and the emotional rollercoaster we have been on, we’re ecstatic he is finally going in for his repairs.  That means he is that much closer to coming home to be with mama, papa and Isla P!  We cannot wait.

 

Whatever the reality ends up being, nothing is going to change how in love we are with our little man, Oakes.  Walking around Children’s Hospital, we know it could always be worse, so we are thankful for our Oakes.  Having a support system in place made up of all of you inspires us and seriously gives us more strength and perseverance than we ever thought we had.  Your collective thoughts, prayers, notes and offers of help have been overwhelming and humbling and truly, deeply appreciated from the bottom of our hearts.

 

The surgery is expected to begin at 7:30am CT and last 7 to 8 hours and we’ll be getting updated hourly by the medical staff.  We have been able to talk to the surgeons a few times and firmly believe that Oakes is in great hands.  One of us plans to update the blog as often as makes sense and I’ll try to send an email tomorrow night or Wednesday.

 

Love,

 

Greg, Becky, Isla and Oakes

www.babyortyl.blogspot.com

 

 

From: Greg Ortyl [mailto:gortyl@yahoo.com]
Sent: Tuesday, March 15, 2011 7:44 PM
To: 'Greg and Becky Ortyl'
Subject: RE: Baby Ortyl Update # 2

 

All – good evening.  First of all, we cannot thank you all enough for the continued support throughout this process.  It’s worth stating again how blessed we are to have such special friends and family.  It’s completely humbling to be honest.  Secondly, I guess this is one of the “catches” about writing the type of email I wrote below and why one might opt to wait until after surgery to send the announcement, but now that everyone knows Oakes’ condition, I feel obligated to provide an update.  So Oakes did not have surgery today……As they were prepping him for surgery, they noticed it was quite difficult to insert the breathing tube, which is required to assist during and immediately following surgery.  Ultimately, they discovered that he has “complete tracheal rings”.  It is a congenital defect that is likely related to the truncus although they very rarely see the two together such as this.  I won’t bore you with the medical details, but Oakes’ condition requires a procedure called a slide tracheoplasty which shortens, but widens the trachea (a simple & brief description can be found here: http://www.tracheotomy.com/conditions_treated/complete_tracheal_rings.html).  The Ear Nose & Throat (ENT) doctor who performs this type of surgery at Children’s Hospital is out of the country until Saturday, so the cardiac-thoracic surgeon in charge of Oakes’ surgery elected to wait until next week for the ENT doctor to return and they will complete both surgeries on the same day through the same incision.  They decided it was better to do one, longer major surgery next week versus two separate, major surgeries days apart.  This tracheal condition was a surprise to everyone since Oakes hasn’t shown any signs of stress while breathing thus far, but we are feeling fortunate that the doctors discovered it before the heart surgery.

 

As such, we will wait with Oakes for surgery until next week, probably Tuesday or Wednesday.  The staff at the CICU is watching him even closer than they were before, but he continues to be stable overall….and very cute as the nurses like to point out.  They also all love his full head of hair, certainly not a gene from his father although sleeping with his mouth open as seen below probably looks vaguely familiar to my wife (this picture is only 30 minutes old, so very up to date).  Although Becky may post something on the blog between now and then, I’ll do my best to wait until a day or two after surgery to provide another email update unless his condition materially changes.  Apologies to those of you who asked us questions in email or voice mail as I hope to get back to you all in the coming days.

 

Becky and I cannot tell you all enough how comforting it is to know that we are all in your thoughts and prayers.  I honestly think about it dozens of times a day and it helps to put me more at ease.  Thanks again for being there for us!

 

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Love,

 

Greg, Becky, Isla and Oakes

 

From: Greg Ortyl [mailto:gortyl@yahoo.com]
Sent: Monday, March 14, 2011 7:07 PM
To: 'Greg and Becky Ortyl'
Subject: Baby Ortyl Update # 2

 

All – we hope this email finds you all happy and healthy.  Almost two years ago, I sent most of you the email below announcing the arrival of our daughter and although most of you may have already heard through text messaging, Becky’s blog, Facebook, Twitter or regular ol’ boring email, I wanted to officially announce the arrival of Baby Ortyl # 2 – Oakes Lee Ortyl.  No, Oakes is not a family name, just a name we thought was a strong name for our baby.  Lee is Becky’s mother’s middle name, so again, that evokes strength, which he will need.  Oakes joined his sister Isla and us last Thursday night at 7:38pm tipping the scales at 6 lbs, 9 oz and measuring 19 inches.  He was very healthy and has been stable the last few days and mama is doing great. 

 

As fewer of you probably know, when Becky was about 19 weeks pregnant, Oakes was diagnosed with a congenital heart defect by the name of Truncus Arteriosus.  I’ll spare you the details (a decent explanation is here if you’re interested http://www.stlouischildrens.org/content/greystone_690.htm), but just tell you that it requires little Oakes to undergo open heart surgery, which will take place tomorrow morning at St. Louis Children’s Hospital.  The outpouring of prayers and good thoughts and offers of help over the last few months and, in particular, the last few days has been overwhelming.  It’s reaffirmed what great friends and family we have in our lives.  We would like to humbly ask for all of those prayers and good thoughts to continue especially hard over the next 72 hours as that will be the most critical in Oakes’ recovery.  We are confident that the little guy will pull through with flying colors. 

 

For those of you inclined, feel free to check out Becky’s blog that has all kinds of pictures and frequent updates at www.babyortyl.blogspot.com.  In the meantime, here’s a sneak peek at baby Oakes (that is an IV in his forehead).

 

Again, thank you to everyone.  We are blessed to have such great friends and family.

 

Description: Description: Description: Description: Description: http://1.bp.blogspot.com/-Y9knHujLw8c/TXw3sjZsn1I/AAAAAAAADRw/K3j3WWfJ6ho/s400/Oakes%2BLee%2BOrtyl%2B3-1-11%252C%2Bfirst%2Bdays%2B137.JPG

 

Love,

 

Greg, Becky, Isla and Oakes

 

From: Greg Ortyl [mailto:gortyl@yahoo.com]
Sent: Friday, May 01, 2009 9:24 PM
To: Greg Ortyl; Greg and Becky Ortyl
Subject: Baby Ortyl Update

 

Everyone - Baby Ortyl has FINALLY arrived!!  Isla Patrina Ortyl was born at 4:16pm Mountain Time today weighing 6 lbs, 15 oz and 19 3/4 inches long.  (Isla, by the way, is pronounced /eye-luh/).  I'd tell you all about her and the origin of her name and how it happened, but I just spent an hour posting the whole story and a TON of pictures and even a video to Becky's blog that she has been keeping, so check it out!

 

 

We have to thank every one of you for all of your thoughts and prayers over the last few months.  As a teaser, I've attached a great little pic of little Isla and my gorgeous wife.

 

Love,

 

Becky, Greg and Isla Ortyl

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Oakes Is Out Of Surgery

At 3:28PM, Dr. Huddleston visited us in our little room. It was very anti-climactic. We knew, as you can see below in the post, that the surgery was over and that Oakes was doing well but we didn't know if there were any issues during the surgery. Turns out, there were no issues during surgery which is great. Dr. Huddleston said there are four major milestones to reach. First, is surgery. So we are past that one. Second, is getting through the first 24 hours. This is a critical time in how Oakes' body recovers and starts the long process of healing. It's typical during this time to have various complications arise. Doctor H said if we have issues, we want there to be a few minor ones rather than one major one. The third milestone is closing the chest wound, which will probably take place Thursday. Doc said we need to be sure it's not too tight in there when they close it. The fourth major milestone is taking Oakes off the breathing machine. He said he'll probably be off the machine some time Sat or Sun, possibly even Monday. Babies typically can go off the breathing machine 24 hours after the wound is closed, but Doc said he'd use a bit more caution considering the tracheal repair which could add a day or two until this happens.

Overall, he said he was happy with how it went and that his vital signs are good. His lungs and heart started working again right as they brought him off the bypass machine, so he's cooperating so far!

We're going to visit Oakes around 4:30pm in the CICU. I'm probably finished with posts for a while, but will probably send a quick email to everyone tonight...for all of those non-blog followers.

Love you all!

Greg, Becky, Isla & Oakes

1 Week Photos.







Update On Oakes' Surgery....

Just posting stuff as we hear:

6:35AM - Becky & Greg arrived at hospital to find little Oakes sleeping peacefully with great heart rate and breathing numbers. Mama held him for about 15 minutes before they started to prep him for a stroll to the OR.

7:15AM - We tagged along as Oakes was escorted to the OR. We talked to the anesthesiologist, the ENT doctor and a couple nurses, kissed our baby and headed to the waiting room.

8:40AM - In our waiting room, received a call that he was asleep as of about 8:25AM and that they were working on the IV.

8:45AM - Greg took off to grab bagels as Connie & Sarah arrived to wait with us in a 6th floor waiting room, about 70 square feet with a little TV.

9:35AM - Received a call saying that the operation was starting right now. More later in this same string of updates. Love you all.

10:39AM - Connie was making some calls and Becky was using the restroom. I was working away and said out loud "I need an update....Neeeeeed an update!" One second later, the phone rang and Sarah and I just looked at each other. The angels are working! The call was to update us that Oakes is on the bypass machine. This is the machine that basically oxygenates his blood and pumps it through the body to all of the organs while they work on him. They have begun work on his trachea so they can get that airway opened up for him. The nurse said the next 4-5 hours will be similar updates since we're right in the middle of the surgery. Praying for wisdom and strength for Drs. Molter & Huddleston!

11:28AM - We were surprised to have Dr. Molter just visit us (he just left at 12:06PM which is the reason for the delayed post). Dr. Molter is the ENT "consulting" on the procedure. He was sort of like the Director - he put the scope down into Oakes' trachea and was telling Dr. Huddleston what he was seeing and helping direct him on the repairs. He thought the actual repairs went very quickly and I'll spare you the details, but there was no leaking at all (which is common) and the "reconstruction" of the halved trachea was as good as they could have expected meaning he has twice the width and almost 4x the breathing area than he had before. Dr. Molter drew a couple pictures of what they did and talked for a while about any complications, both short-term and long-term. Possible issues with the nerve that supplies the sensation and function to the voice box (larynx) resulting in anything from raspy voice to a tracheotomy but will need a month to get better idea of any issues. Oakes will have to come back monthly to have the trachea reviewed to ensure it's healing and growing properly. But the net of it is, and he said this 4-5 times, that he was very happy with the procedure. Dr. Huddleston is hard at work. We are relieved for the time being but should get another update in 20 minutes or less.

11:39am - Received a call while Dr. Molter was in with us letting us know that the tracheal repairs were completed and that they had moved on to the heart procedure. The nurse said that the graft was "out" and ready for insertion. This is the graft they will use to create the new pulminary artery.

12:26pm - Received another call from the nurse. Feels like the doctor just left! I guess he did...not even 20 minutes ago. She said everything is going as expected. Dr. Huddleston has made a couple of repairs and he is currently working on repairing the VSD, which is a hole between Oakes' right and left ventricle. They repair that hole with a graft which the doctor should be sewning on right about now! We're cautiously optimistic and praying hard. Thank you for all of your wishes, prayers and notes. They are awesome and are bringing tears to our eyes that our little Oakes is loved by so many he hasn't even met yet!

12:34pm - Happy Birthday to my wife. I lost track of how old she is, but I think twenty-eight. We're waiting for the good news post-surgery so we can celebrate two fun things!

1:33pm - We are all wiping away tears. I just got off phone phone with the nurse who said that, incredibly, after just four total hours since the actual surgery started, they are finished. Oakes is off the bypass machine and all of his vital signs are good. We just had an awesome, relieving hug but won't know all the details yet until Dr. Huddelston comes by in 60 to 90 minutes to re-live the surgery with us and he will be undergoing intense questioning! If this emotion is even possible, we are cautiously ecstatic based on the early returns. More later and thanks for the continued prayers and thoughts.

2:01pm - Connie is making a run to Panera to grab us some lunch. The surgery ended a good 2-3 hours before we had expected so we're kind of in shock. Becky's friend from college, Janelle Swieca, who works at Barnes, just stopped by the room, minutes after our tears had been flowing. It was fun for Beck to hang out with her for a bit. We are now anxiously waiting for Dr. Huddelston to swing by. We're praying that there were no other complications during the procedure....

2:34pm - Received another call that they're still closing up his chest. This isn't exactly correct though because they won't fully close his chest today. Because his organs are swollen from surgery, they don't want have the organs under pressure, so they'll put a mesh screen over the wound followed by a plastic cover for a couple days. Hopefully this only takes another 30-45 minutes so that we can here all the details from the doc.

2:57pm - Still no doc. Clarification here...when we say we hope there are no other complications, we just mean we hope there were no unexpected issues or that something popped up that could cause some issues later on. We're hoping it was just a normal, routine heart surgery. The larynx issue related to the trachea was something we knew about heading into surgery and we just won't know if it was actually damaged until later. Now we're waiting to hear if there were similar curveballs with the heart portion of the surgery. Praying hard still and holding breath....

3:17pm - Got another call that they're finishing up now and that Dr. Huddleston will be up to talk to us shortly and then we can go back to our home-away-from-home, AKA the CICU, to wait to see Oakes. The nurse said he's still doing great and all vital signs are good.

Thursday, March 17, 2011

Much Love.

Just a quick note to our family and friends. We have been overwhelmed with the most amazing and most supportive emails, texts, and phone calls. We have individuals, families, entire churches and prayer groups praying for us from coast to coast and even on the other side of the world! We are so very humbled.

Please keep the prayers and good energy coming, they must be working because we feel the love! Greg and I are feeling very strong, very calm, and very united. We definitely have our "moments" but for the most part we are focused on this surgery next week, beginning recovery, continuing to love all over little Oakes and bringing him home.

Oakes is still very stable and just SO strong. He is amazing. He gets fussy during the day when the nurses unswaddle him to take his temp and poke at him a bit, but with some soothing he always calms down. He has started taking a little pacifier which seems to help. Greg was with him almost of the day today so he witnessed the fussing on and off, but also got to steal several precious moments with Oakes snuggled up sleeping in his arms.

Our house is pretty calm right now. We are trying to divide and conquer when it comes to Isla. She is so tuned in and so smart, she knows something is a bit off, but has been adjusting and handling this as well as we could hope for. My mom has been here non stop and has been an amazing help. She has been taking the early shift at the hospital and has stolen a few moments of her own with Oakes. As well, I have had both sisters in town and Dale, my step father.....all amazing support in so many ways!

I am convinced that Oakes is an amazing soul and in the least will teach Greg, Isla and I so much. He is so sweet, and so peaceful, and we can not help but beam when we talk about him or are around him! His nurses just love him, and they all comment about how beautiful he his.....and what mother doesn't want to hear that? And there always seems to be small talk about his dashing head of hair, we just hope that he keeps it!

I will keep you updated as we learn more. I just had to reach out to all of you. Please keep the prayers coming, they are working!

Much love to all of you,
Becky & Greg, Isla & little Oakes

Please feel free to send us your email if you would like email updates!

Tuesday, March 15, 2011

Oakes.

This video was taken yesterday as we were saying goodnight, I just had to post it!!

video

Monday, March 14, 2011

Little Oakes , 4 Days Old.

Oakes will have surgery tomorrow to repair his little heart. We were with him this morning while they doing some preparations for the surgery tomorrow. They removed the line from him forehead and relocated it to his foot. I couldn't help but get some pictures of our sweet little man without his stylish IV.














Oakes will head down to surgery tomorrow at 11am. Surgery will begin at noon, and will last at least 4-5 hours, with another hour at the end of settling him back in his room. It will be a long day for Greg and I and we are so appreciative of all of the prayers and love that has been sent our way.

We will be praying for the best case scenario for Oakes, for a miraculous recovery, and a perfectly healthy little boy. We will be praying for his medical team and all of those that will be assisting in his recovery. We will be praying that he joins us at home very soon so that we can carry on being a sweet family of four!

Saturday, March 12, 2011

Oakes Lee Ortyl.

Headed to the hospital....



Isla pointing out her brother.

And giving him a kiss.

Mom and Oakes the day after he was born.

Holding Papa's pinky finger.
Oakes has an IV in his forehead and pulled it out at some point so the bandage has blood on it...not so cute, but serving a great purpose!

The day after Oakes was born Isla visited him in the NICU. She just looked from afar and wasn't sure what think. She was shy but very curious. After about five minutes she was blowing kisses and waving goodbye. It was SO MUCH FUN to introduce our little tootbug to her new baby brother.

Oakes while Isla was visiting.


He has a beautiful head of very soft & fine, dark spiky hair, and just handsome little facial features!



Mama and Oakes.


Oakes' first bottle.

...and his skinny little legs!
We are SO in LOVE with our little man!
He is strong, yet peaceful every time we see him. He loves snuggling with mama. He has been opening his left eye and it looks gray like Isla's eyes, but he has yet to really open his right eye. We see him try to open it every once in a while and it's so cute to watch his little eye brows raise trying to get a peek at mama and papa.
He's not needing oxygen and breathing completely on his own; very stable. Today, he was moved from the NICU to the CICU, which means he's a bit closer to surgery. It appears as though the surgery, barring delays (which are likely), will be Tuesday. We checked out of the hospital today and intend to get a good night's sleep to rest up for a big week!
We just love our little guy and can't wait to bring him home!