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
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.
Greg, Becky, Isla and Oakes
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!
Greg, Becky, Isla and Oakes
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.
Greg, Becky, Isla and Oakes
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.
Becky, Greg and Isla Ortyl
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