....And Some Isla Pictures.

With her BFF...



Isla slowly walking home from church with Ena and Grandpa Dale

"Winging" with Ena and Grandpa!

Opening Birthday gifts from Gramma & Grampa!

Mighty Oakes Update...

Friends and family, it’s been over a month since our last update and I am 100% to blame for the lack of updates.  I’ve thought about it a million times but just never got to it.  We’re long overdue for an update, especially with the latest news of the day.

 

For those of you who have better things to do than read my novel here J, please just know that Oakes is having open-heart surgery, again, tomorrow morning around 8am (Saturday, 5/28).  Most of you will probably get this during or after his surgery, but we are, again, humbly asking for all of your prayers and thoughts and vibes and good luck charms to help Mighty Oakes through these next few days.

 

For those of you interested in how we got to here over the last month, feel free to read as much or as little of the following update as you want.  Lots of you have reached out lately since we’ve been quiet on the email front, so again, sorry for the delays.  Becky has been keeping some updates on her blog and occasionally on Facebook, fyi.

 

As we noted in our last email, Oakes was going in for a catheter procedure on May 4^th.  We were told the procedure was to hopefully eliminate the “congestion” around his newly-created pulmonary artery (PA), allowing him to breathe easier and get off of his oxygen.  Upon arriving at the hospital, the cath surgeon told us, out of the blue, that he was pessimistic that the cath procedure would solve the issues and intimated that another surgery was likely.  Kind of a shock, but after all we’ve been through, we handled the news pretty well.  They went in with a cath through an artery in his groin and took the cath right up through the new PA into the so-called “branch arteries” that connected the heart chambers to his lungs and they blew up a balloon in each of the branch arteries, then deflated them and pulled the cath out.  The doctor who did the surgery, Dr. Murphy, came by afterwards and showed us actual video of them blowing up the balloons.  He specifically didn’t like that the arteries kind of deflated when they deflated the balloons.  This is what he thought would happen and was the cause of his pessimism prior to the procedure.  That said, the blood flow improved post-procedure.  To give perspective, after the procedure, his branch arteries were about 2 millimeters wide while most kids his age could have the same arteries around 4 mm or even 5 mm.  The smaller arteries are directly related to the truncus arteriosis which was the heart defect Oakes was born with.  For whatever reason, the doctors didn’t believe this would be an issue long-term when they first had Oakes’ chest open on 3/22.  The good news coming out of the cath was that the ENT surgeon also did a bronchial exam to check on the healing of his trachea repair.  The ENT was what I would call giddy when he came back from looking at the trachea.  He said it’s healing amazingly well and he was very excited about that.  Oakes’ tongue was tied to the bottom of his mouth (‘tongue-tied’, which my wife wishes I had sometimes), so the ENT snipped that loose as well while Oakes was under anesthesia.

 

Oakes recovered for a couple days in the hospital and the day he was coming home, his cardiologist suggested we see how he does without oxygen.  After an hour or so with his measurements in the high 90s (100% is standard for a normal kid meaning his oxygen is 100% saturated with his blood as it should be), she let him come home WITHOUT OXYGEN!  Not only that, but because he had been eating so well, he came home without his feeding tube.  All of a sudden we had our little Oakes looking perfectly cute with no tubes in his nose or hanging from his body!  Those first few days home, he was a rock star – he ate like his papa (which means he ate a lot), he slept well, he was very aware of his surroundings, he was smiling occasionally and he just looked like a normal baby.  We were so encouraged.  Life was easier since we were able to go wherever we wanted, in the house or around town, without worrying about tanks or machines.  It was very liberating.  Oakes’ cardiologist, Dr. Lee, after consulting with several of her peers and Dr. Huddleston, did tell us during his recovery, that he would need another surgery, likely an open-heart surgery to permanently fix some of the congestion occurring between the homograft they inserted on 3/22 and the lungs.  She said they want Oakes to grow so they’d target July or so for that follow up surgery.  Of course, Becky and I held on to hope that he’d eat so well and recover so great that he wouldn’t need another surgery.

 

Over the subsequent few weeks, Oakes kind of leveled off a bit.  He was pretty inconsistent in how much he’d eat.  He was supposed to eat around 90 mL per feeding, 7 times a day.  He would eat 40 mL one feeding, then 40 mL the next, then 120 mL, then vomit that all up, then 90 mL, etc.  He was vomiting about once a day on average and it got very frustrating for us.  During his weekly check ups, he wasn’t gaining the weight he should and he hung out in the 2-3 percentile for weight compared to his peers.  This isn’t good for a heart baby.  We had nurses coming by the house, nutritionists visiting us and even physical therapists because he favors one side of his neck over the other.  But all in all, we were content since we had our baby boy home…unplugged.

 

So just in the last week or so, we’ve noticed when Oakes gets irritated or while he’s eating, he appeared to be really working hard to breathe.  That seemed to be contributing to his lesser feedings because the poor little guy would just get exhausted halfway through eating and pass out.  Late last week during a check up, Dr. Lee mentioned that going back on the feeding tube was a possibility because his weight gain wasn’t where they’d like it to be.  By this past Monday, the decision was made to put his feeding tube back in when he went in for a check up Wednesday.  By Wednesday, they were concerned enough with his lack of weight gain and noticeable elevated difficulty breathing that they mentioned they may elect to do surgery late next week but they’d consult amongst the group and have more feedback by Friday when they wanted him to come in for another check up.  His feeding was very strong on Thursday, but because he was burning so many calories struggling to breathe, he put on no weight between Wed and Friday when Beck took him back in for a check up.  This morning during that check up, Dr. Lee was very concerned and said that, clinically, he was doing worse now than prior to the cath.  She mentioned possibly admitting him then, but didn’t think there was much they could do until surgery.  Dr. Huddleston, Oakes’ surgeon for the first surgery, was/is in Italy, but would be back Tuesday so they moved his surgery date to next Wednesday.  Dr. Lee told Becky, as her and Oakes left this morning, that if Oakes was lethargic or was disinterested in eating, that she should call the hospital.  Sure enough, around 1pm today, Oakes was due for a bottle and wouldn’t take it.  We tried two or three times and he was just not taking it.  This is extremely unusual.  Even in tough times, he’d always take at least SOMETHING, even if it was just 20 or 30 mL.  Beck was concerned enough to call Dr. Lee who told us we should admit him in the subsequent two or three hours.

 

Becky and I brought Oakes in this evening around 6pm and they put us in 7 West, which is the “step down” unit for babies about to go home.  Well, within 15 minutes, alarms were going off.  Oakes’ oxygen levels were in the 70s, which is a big time red flag.  That’s the point at which organs start getting over-stressed.  They put him on a little oxygen, then a lot of oxygen and he wasn’t really improving, only getting to the low 80s.  Every doctor on 7 West and the adjacent CICU was in our room examining him trying to determine next steps.  They talked about intubating him (putting him on the breathing machine), they talked about potential emergency surgery and all kinds of medicines they were going to try.

 

There was a doctor on duty, Dr. Kehr, who had seen Oakes before, brought us in to the family consulting room to give us the lay of the land.  He was good and explained that they were going to go ahead and intubate him immediately and start some medication that would hopefully help ease his breathing.  As they were getting ready to intubate him, we were introduced to the other cardiac surgeon.  With Dr. Huddleston in Italy, this was our guy.  When Oakes was diagnosed in womb, we were told that Children’s was getting ready to bring on a second cardiac surgeon, but that there was only one on staff now, Dr. Huddleston.  Well, fast forward to May 27^th and here was the other guy, fresh from Cincinnati Children’s hospital and finishing up his 11^th day on the job at St. Louis Children’s.  I really liked his demeanor.  He was very confident in a subtle kind of way and said that this type of surgery was well within his comfort zone.  He respected the fact that we’d prefer Huddleston to do the surgery but that it was in Oakes’ best interest to have the surgery now.  We told him “let’s get him fixed.” 

 

So that’s where we are now….Beck and I just got home to get a couple hours sleep and we’ll be back at the hospital no later than 6:30am.  The surgery will start around 8am and last five to six hours.  He’ll be on the bypass machine for maybe an hour during the procedure, so that is good.  Likely in the CICU for 3 days and 7 West recovering for 6 or 7 days.  Hopefully around June 8^th or so, we’ll be bringing a very happy, easy-breathing, smiling baby boy home!

 

As always, we can’t thank everyone enough for all of their thoughts and prayers throughout these last ten weeks….I will do a better job of keeping you all posted. 

 

Love,

 

Greg, Becky, Isla P. & Mighty Oakes

www.babyortyl.blogspot.com

The Latest Images.

We have been so very busy lately, two children is definitely more challenging than one especially with the extra tubes and tape, monitors and nurses visiting us at home. My camera is never too far from my reach, I am just so slow to upload them and share. Thanks again for all of your love and support!

These images were taken in early April when Oakes first came home from the hospital. This was the very first time that Isla got to hold him and she just loving having him close. She is the sweetest sister. She always wants to kiss him and rub his head. She is also quick to identify his facial features..."Oats eyes, Oats nose, Oats ears", as she points to each feature, and she always ends with "Oats booboo" and points to the tape on his face.

Aunt Shani with her little Oakes! Thank you Shani for coming to stay with us and help out, we miss you!!

Greg and his little Gorgeous snuggling up at the end of the day!

Isla checking in on Oakes...the sweetest thing ever. There have actually been times that I will bring Oakes to Isla and ask her to talk to him and be sweet and he will calm down when he hears her voice. Isla always knows where Oakes is and what he is up to and he will track her voice and noises when she is around. I think I have a strong bond with my siblings, but the connection between Isla and Oakes just seems amazing to me!

On May 1, Isla turned two! Maybe one of these years we will have some kind of party for her. For now, it has just been us, a cake and a candle!

Isls hearts Ashby, and Ashby kinda hearts Isla these days!

Our Mighty Oakes! These pictures were taken right before we left the hospital in April....our sweet, sweet little man!

Oh, and we had a visit from the Blues mascot, Louie along with a few Blues players. (I have NO idea which players they were...?!)

Mighty Oakes Update

Hello, friends and family.  Hope you are all doing great.  We have been getting many emails and texts and phone calls the last few days asking about Oakes, so we wanted to get an update to everyone.

 

Oakes has now been home for almost three weeks and things have settled down quite a bit from when he first arrived.  A nurse is visiting us twice a week to check in on the little man and he continues to check out well during each visit.  Really the only issue she’s noticed is his cry.  Becky calls it more of a purr, almost like a cat.  It’s this really cute sound that you have to laugh at when you hear it.  He wants to make a mighty yell, you can tell, but he’s struggling to build up his vocal chords, probably a byproduct of the tracheal surgery that we were warned about. 

 

He has been eating – Oakes has gone from eating half of a 50 mL bottle of milk (the other half having to be given to him via the feeding tube) to now consistently finishing most of an 80 mL bottle every three hours or so.  He’s been gaining weight and is closing in on 8 pounds now, which is great.  Early on, we were having quite an issue with vomiting, but that’s only happening about once every other day at this point.

 

We’re still on the oxygen which has been a pain, especially when I’m working and Becky is trying to control Isla, who is entering her “terrible 2s”, while keeping Oakes happy.  Running a simple errand is now not so simple since we have to switch Oakes’ oxygen tubes from the rolling oxygen machine in the house to portable oxygen tanks to take with us.  We’ve walked to dinner a couple times with Oakes and he’s done pretty well.

 

Since our last update, Oakes’ has been allowed to stop all of his medication except his reflux medicine.  That means that his potassium and calcium levels have straightened out, which is also good considering the doctors weren’t sure why his levels were high as he was discharged from the hospital.

 

I mentioned a follow up surgery in my last email and that is now scheduled for May 4^th.  They’ll put Oakes to sleep with anesthesia and to a “bronchial” exam to check how the trachea and surrounding area has recovered.  This involves putting a tiny camera down his throat, similar to what was done during his first surgery.  Hopefully no repair work this time; just observation.  Not sure what they’ll find considering his weak cry.  They will also be sending a catheter through his leg to the tiny spot above his heart where they connected one of his defected blood vessels to the cadaver blood vessel (which created his pulmonary artery).  If you recall, the doctors believe it is this connection point which is causing his oxygen levels to drop below comfortable levels from time to time.  The procedure they’ll do will hopefully relieve the “congestion” that they believe is the main cause.  This is a huge deal obviously, so we’re again very humbly asking for prayers and thoughts to stay with our Mighty Oakes.

 

About two weeks ago, we received word that Oakes’ “microarray” genetic test all came back normal.  This was the last of the genetic blood tests that the doctors requested about a week after Oakes was born.  It’s certainly good news, but we’ve been let down before by test results that we thought were 100% conclusive only to find out there were many more tests to be run.  I suspect there are other tests to check other things, especially when I read all of the caveats on the test report they sent us.  Again, I think this is a situation where we may not know for months what, if any, other issues exist.  Our fetal cardiologist, Dr. Caroline Lee, has been amazing to us throughout the entire process.  She has told us that she believes the geneticists have been a bit too assumptive (my word, not hers) with their feedback to us and that it’s probable that they are looking for something that isn’t there.  This is good to hear obviously, but we are hoping and praying for someone to simply tell us that everything about his physical and mental development will be perfect.  We know this won’t happen, but it’s just where we are with this. 

 

The absolute outpouring of amazing kindness and generosity has been overwhelming.  It’s really humbling to understand the network of friends and extended family that has developed in our lives over our 36+ years.  I, for one, have been taking it for granted all of these years and I’m sorry it’s taken our little Oakes’ heart surgery to really paint the picture of how many people we have in our lives who care about us.  I’d be remiss if I didn’t specifically thank my sister, Shani, and her husband Jamie and their daughter, Harper.  Somehow, Shani drove down from Des Moines a couple weeks ago and spent Sunday to Saturday with us, strictly to help us out.  She was able to take off work the entire week and left Jamie fending for himself with the energetic Harper.  She was incredible – running errands, changing diapers, feeding babies, cooking dinners, doing laundry and just being a good sounding board to Becky.  I love my sister and we cannot thank her enough.  It was tough seeing her drive away…..I’m in the process of drafting an offer letter for her full-time services and to see if I can coax her to move to St. Louis.  Sorry Jamie!  J  But seriously, we continue to be grateful for everything everyone has done for us throughout these six weeks (yes, Oakes was born SIX weeks ago tonight!).

 

We’ll look to provide an update probably after Oakes’ May 4^th surgery.  In the meantime, I’m off to clean a few milk bottles….

 

Happy Easter and Love,

 

Greg, Becky, Isla P. and Mighty Oakes

 

Oakes & Isla

Both of our babies when they were just weeks old. It is amazing to us how similar they look at this age!

Isla

Flowers were delivered to our house last week while Isla was napping and when she came down after her nap she was so interested in the flowers....so was her giraffe!

Ena & Oakes

This was when we were moving from the CICU, to 7West. Ena and I were so excited to walk Oakes down to his new room, and of course Ena was quick to snuggle up with her little but mighty Oakes!

Oakes Coming Home!

The Ortyls under one roof! Thank you all so much for your love and prayers and amazing support! Isla just LOVES her little brother! Isla checking in on "Oat"

We are just surrounded by cuteness!

Oakes 1 Week Old

Oakes Is Home

Hello friends and family.  We are long overdue for an update on our Mighty Oakes but, as you can imagine, things have been a little busy around here.  After thinking Oakes would be home Thursday and then again Friday, Oakes finally made it home to his family this past Saturday afternoon and we couldn’t be more thrilled!

 

His trip home was delayed a couple of days past what we had thought due to a couple of issues.  The biggest issue, which actually still remains, is his oxygen levels.  Throughout almost the entire day, every day, Oakes’ oxygen levels have been fine, mostly better than fine.  But once or twice a day, they would drop below the acceptable levels and hover there for longer than the doctors liked.  So they would keep him an extra day hoping to see him sustain good oxygen levels the entire day, but he’d always slip back every now and again.  On Friday morning, we thought we would have him home by around noon.  The last “test” before he is allowed to be discharged is the “car seat test” where they stick him in a car seat for two hours.  He would pass if his oxygen level stayed above a certain level.  Becky was going on her second straight day shift and was beyond ready to break out of Children’s.  As luck would have it, Oakes’ oxygen level dipped below the line in the last 10 minutes, literally.  And the car seat test nurse (that’s her official title) flunked him.  At that point, it was determined that whenever Oakes was coming home, he was coming home with an oxygen machine…..now the question was when.  Dr. Huddleston stopped by to comment that our son had flunked the first test he ever took.  I thought it was a funny line; Becky, not so much.  Fast forward about nine hours to 9pm Friday night.  Becky and Oakes were STILL at the hospital trying to get all the discharge paperwork completed.  I could sense how exhausted, mentally and physically, Becky was and told her that she should politely, or even not so politely, inform the doctors that she was going home to sleep in her bed and would be back in the morning to get Oakes.  Fortunately, she gave in and came home and got some much needed sleep in her own bed.

 

The doctors believe they know why his oxygen levels dip from time to time.  [Pardon any errors as I try to speak in laymen’s terms]  Apparently, the cadaver “tube” graft the doctors used to create the pulmonary artery is slightly bigger than Oakes’ vessels that they connected it to.  This was on purpose, so that Oakes could essentially “grow into” the new  vessel.  The docs think that there is some “congestion” (I think that’s what they called it) where the two are connected and is causing the oxygen levels to dip.  Oakes will go in for a procedure in about six weeks where they hope to alleviate this congestion.  We haven’t asked enough questions about this procedure yet, but they’re basically going to inflate a small balloon within this area where the two vessels meet and apparently by expanding the balloon a few times (this is a guess, I have no idea), they’ll relieve the “congestion” and thus, the oxygen issues.

 

The other issues are, hopefully, minor.  Oakes’ calcium and magnesium levels are lower than they’d like to see in a baby his age and (this is the concerning part) no one is exactly sure why they are so low.  One theory blamed the lasix – the medicine he has been on for three weeks or so to help dry him out.  Low calcium and magnesium, apparently, can sometimes be caused by lasix, but no one is certain.  They kind of hope he’ll just grow out of it, so we’ll see how that goes.

 

One of the last issues is that Oakes gets bored with eating quicker than he should (I think he’s my kid).  Since he’s started taking a bottle, sometime late last week, he’d get disinterested and fall asleep before he finished his required amount so the nurses set up a feeding tube, or “NG” tube, so they could finish up his meal through the tube.  I had to go in Thursday and actually insert one of these NG tubes through his nose.  It was not fun for me and especially not fun for Oakes.  But mama and papa both learned how to insert the feeding tube since he was also coming home with one of those so that we could make sure he was getting enough nutrition.

 

So Oakes came home Saturday, finally, after 23 days in the hospital which included one aborted surgery, one successful open-heart surgery and more prodding, sticking, poking, pushing, drugging, alarming and general discomfort that you can imagine.  And he handled it with strength, courage and, of course, “might”.

 

Oakes was greeted by his papa, our yellow lab Ashby and our gorgeous Isla P. when mama brought him through the doors for the first time.  It was emotional to see Beck bring him in and even more emotional to see Isla’s reaction.  Here was the Oakes that we had been telling her about for months.  The Oakes that used to be in mama’s belly.  The Oakes in all the pictures with the “boo-boo” on his head.  Her baby brother, Oakes.  And she was…..as poker-faced as you could be!  In her little Isla way, she just stared with intense interest, a wall of caution and her lips pursed.  Our friends, The Moriartys, were here and watched as we tried to gather everyone, including Ashby, together for a quick “Oakes Just Came Home” pic, but not sure it will make the blog (it will be the editor’s call).

 

So the good news is Oakes is home.  The bad news is he brought a bunch of damned souvenirs.  A rolling oxygen machine.  Several portable oxygen tanks for when we need to leave the house.  A stylish “BJC Home Medical Services” brand oxygen tank tote.  A feeding tube closely overlapped with an oxygen tube, both going in his nose and taped to his cheeks.  Five medications to manage everything from his low magnesium levels to his general pain to his urinary tract infection from 10 days ago.  And we have all kinds of medical supplies they sent us home with – gauze, wraps, tape, tubes, syringes and more.

 

The worst part is there are no monitors that I can keep a constant eye on to make sure everything is okay…or not.  No alarms to alert us if things are awry.  And there are no nurses watching him and tweaking his medications.  No doctors that come by to tell us the “plan for the day”.  Yes, if it’s possible, my stress level has doubled.  As most of you know, I stress over basically everything, so you can imagine my stress now.  But I really shouldn’t complain considering he’s home and he’s recovering nicely from such a tough three weeks.  Becky, of course, is rock solid, calm, treating the situation as if she was made for it….and really, she was and is.  She is an incredible mom and, those who know me well know that I would be in deep, deep trouble without her.  Things that send me into panic mode are things that she takes totally in stride.  She always knows the perfect thing to say and the perfect thing to do.  I’m trying to learn from her, but I have a long way to go. 

 

The first couple days here, honestly, have been tough.  The oxygen tube (50’ of tubes connected to the machine) and feeding tube are pretty inconvenient when it comes to carrying him around the house and trying to do simple things like change his diaper or put clothes on him.  He’s also had trouble keeping his meals down.  Not sure if it’s all the medication or just some reflux or what.  But he is as comfortable as we’ve ever seen him and we’re keeping him clean and fresh.  He just looks so much better than when he was at the hospital, which I guess makes sense.  We just gave him a bath tonight and his hair is super soft and fuzzy even though Becky wanted to style it into a “faux hawk”.  He continues to get cuter by the day. 

 

The highlight of Oakes’ three days home was definitely tonight.  Becky was feeding Oakes around 6pm and Isla climbed up on the chair with her and stared at Oakes for about a minute without any facial expression and without saying a word.  Then she leaned over and kissed him on the head and began rubbing his hair as if to comfort him.  She continued to rub his head while mama fed him and every couple minutes would give him a gentle smooch on his forehead.  “OAT” is what she calls him for now  J.  But no surprise to us, she is just the best big sister Oakes could ever have.

 

Finally, the genetic testing.  Not all of it is completed yet and we still have a meeting with the geneticists in 3-4 months, but every test they have done so far has come back negative, which is good, we guess.  We thought that getting the negative test results in October was good news.  I guess it was then and I guess these are now, but it doesn’t take away that there could be something potentially looming, waiting….  So Becky and I are trying as best we can to take one day at a time as tough as that is.  We’ve heard so many touching stories the last few weeks about other families that have been through similar things or even much worse.  All of the stories and words of advice are really helpful as we struggle through how to deal with this.

 

Ok, that’s it for now, sorry for the long update.  We’ll do our best to keep you posted.  We’ve got some incredible pictures lately that I’m sure will end up on the blog soon.  Thanks as always for everyone’s notes, thoughts, prayers and help throughout these last few weeks (sorry if we’re slow to respond or if we haven’t responded at all).  Getting Oakes home with a repaired heart and trachea is an incredible miracle and we’ll be forever grateful to everyone for helping pull him through. 

 

Love,

 

Greg, Becky, Isla and Oakes

www.babyortyl.blogspot.com

 

 

 

From: Greg Ortyl
Sent: Sunday, March 27, 2011 11:48 PM
To: 'becky fox ortyl'
Subject: 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 4^th 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 11^th, 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