Sunday, April 1, 2018

Sleep Safety with Owlet

My pregnancy with Bennett brought out so many different and mixed emotions. While a majority of them were of extreme happiness and joy, there were definitely moments of guilt, worry and major anxiety. I often tell people that Evanna “threw us off the deep end into parenthood” and opened up our eyes to a world where things can happen beyond our control, and we as parents have to arm ourselves with tools and knowledge to negate the everyday risks as best we can.
Not only did the birth of our oldest, Evanna, make us more aware of certain situations, but also my husband’s career as a Paramedic made us extra sensitive to certain dangers. While he keeps a majority of the details to himself (obviously due to patient confidentiality), I’m aware of the fact that he has been on a few pediatric calls where if a few safety measures were implemented, the outcome would have been drastically different.

**In her quest to advocate for crib safety, I have been given explicit permission from Jordan to share her story about her son Sloan within this post, how his death affected me as a mother myself, and further prove why this topic is so incredibly important to talk about. If you’re interested, I’ve linked Jordan’s blog, Instagram, and a few articles that were written and circulated when her story went viral last Summer.

In the days following her son’s death, Jordan DeRosier BRAVELY (like beyond brave) revealed the details surrounding Sloan’s death and explained that it was due to an unsafe sleep environment in an effort to warn other parents to learn from her heartbreaking mistake. I seriously bawled my eyes out and was completely devastated on her behalf. However, I was admired by her incredible strength to be so frank, honest, and open about the details that might paint her in a bad light – even if it meant that it could potentially save just one child from the same tragedy. In the days and weeks following these events (and as she continued to post about her grief and pain as it unfolded), I held my pregnant belly tight, and felt my heart tighten in anxiety for the same potential harm that could befall my own child.
The American Academy of Pediatrics (AAP) has established safe sleep guidelines that parents should follow to help keep their baby safe when sleeping. One of these guidelines includes following the ABCs of safe sleep: Alone, on their back, in their crib — no bumpers, pillows, sleep positioners or blankets. After reading these guidelines, I immediately began to strategize ways I could ensure the safety of my newborn, and that’s when I stumbled upon Owlet Baby Care and their Smart Sock Baby Monitor. As a “heart/trach/vent mom”, I value the capability to track my healthy baby’s heart rate and oxygen levels while they’re sleeping as it brings me peace of mind.

* Owlet does not claim to prevent or eliminate SIDS due to the cause of SIDS being unknown. However, Owlet is designed to notify you if your baby's heart rate and oxygen levels go outside the preset range and many parents find additional peace of mind using the device.

You see, we somewhat have the unique luxury (at least that’s the way I currently see it) of homecare nurses that watch and physically monitor Evanna due to her tracheostomy throughout the night while we sleep, and I wanted something that had similar capabilities (obviously it’s not the same) that would notify us if Bennett’s oxygen saturations and/or heart rate were to fall out of the preset ranges and give us that peace of mind. We’ve been using the Owlet for several months now (as I truly wanted to give it a thorough trial before I give my honest review), and Nick and I both truly think it’s a great product. You definitely have to get into the habit of putting it on every night, followed by making sure it’s plugged in and gets charged during the day, but it’s now become apart of our routine and we just do it out of habit.

A few things to keep in mind, and things we’ve learned since using the Owlet over the past few months…
- due to the poor WIFI strength in our bedroom (where Bennett currently sleeps in a bassinet), we actually weren’t able to use the Owlet App for the first week or so after Bennett was born. The Owlet works on Bluetooth technology, so while the Owlet base and sock still works without WIFI, we weren’t able to view its readings on our phones until we purchased a WIFI booster for our home.
- The Owlet Smart Sock is intended to provide peace of mind. It is not intended to diagnose, treat, mitigate, cure, or prevent any disease or condition. It is not a medical device and is not intended for use as a medical device or to replace a medical device.
- The Owlet uses low 4.0 Bluetooth energy so there are not any wires. The Owlet is meant to ONLY work while the baby is sleeping to provide you peace of mind during the night.
- The Owlet is a product meant to be used from newborn up to 18 months of age.

A few additional notes…
- we do in fact have a medical grade SPO2 monitor that we have on loan to us from our cardiologist to monitor Evanna and “spot check” her throughout the day and night. What I love about the Owlet, is that it’s completely wireless and we don’t have to deal with annoying cords and wires (which we’re all too familiar with…).
- a huge problem with traditional SPO2 monitors that are used in hospital, is that the LED sensor sits directly on the skin, and its higher intensity can cause little burns if not rotated every 12 hours (which has happened to Evanna). What I love about the Owlet, is they use a less intense LED sensor, and it doesn’t sit directly on the skin so we don’t have to worry about/keep track of which foot we put the Owlet sock on each night, and just place it on whichever foot is most convenient to us while getting Bennett ready for bed.
- Make sure you also consider the most important elements of sleep safety, which is ALONE, on their BACK, and in their CRIB – clear of clutter such as bumpers, pillows, blankets, stuffies, etc.
- Owlet recently submitted their 510(k) for FDA clearance to create a medical version of the monitor, which would be more robust and could be used in clinical settings and for diagnostic purposes. However, they don't have a timeframe to share yet on when that would be available. This page on their website has more information about clinical efforts, research and more.

Overall, I highly recommend the Owlet and truly believe it should be at the top of every baby registry. The benefits are just too great, and hope that like other baby products -- this starts to become a staple in every home with a newborn.

Disclaimer: The Owlet was gifted in exchange for my honest review, but all thoughts and opinions are my own. While I often call myself and am recognized as a “heart/trach/medical mom”, please know that I’m only an “expert when it comes to Evanna” (and know her complete medical history), and that I’m constantly consulting + seeking the proper advice of our large medical team of pediatric specialists, and urge you to always speak to your care provider with any and all concerns about your child’s health and well-being.

xo The Irvine Family


Monday, March 26, 2018

Bennett's Baby Blessing

Last month (February 11th) we held Bennett’s baby blessing and invited family and a few friends to celebrate with us. Between getting a ton of hand-me-down baby boy clothes from my sister and everything else we had going on between the end of my pregnancy until now (working lots, Christmas, all of Evanna’s therapy appointments, etc), I just had no desire to spend the energy on planning a separate baby shower for Bennett and decided that his Baby Blessing would be enough celebration (which meant I was comfortable spending a bit more money on it too).

Just like Evanna, Nick gave a very short + simple (but of course meaningful) blessing. For those who are also LDS, know that baby blessings can sometimes get dragged out…. but Nick tends to be a man of few words -- so that definitely isn’t a problem for us whatsoever (I know a few people were actually a little surprised at how quickly it was over lol).

Anyways, here’s a few photos from the afternoon, and of Bennett in his blessing outfit ----

xo The Irvine Family

Sunday, March 11, 2018

|| happy 3rd tracheoversary ||

Well another year has passed us by, and not only have we survived this thing called #trachlife -- but feel like we’re in fact thriving. We still have a little ways to go before we can seriously consider decannulation (take the trach out), but we have made a TON of progress over the past year, and this progress has been so great for improving our quality of life too! Just after we celebrated our 2nd tracheoversary last March, we were admitted at the beginning of April for a bronchoscopy to see what Evanna’s airway looked like and were ecstatic to hear that her tracheomalacia (“floppy airway”) had finally cleared up, and she was ready to make weans off the ventilator. 
Due to how long Evanna has required ventilator support, it hasn’t been a quick process, but she’s been able to work up to all day sprints off the ventilator, and we’re now going to see about weaning her off during the night in the coming months. 

This past Wednesday, we received a call from the sleep clinic and were informed that Evanna is scheduled for a sleep study mid April (I have to laugh, as we seem to have a pattern with mini hospital admissions and the month of April over the past few years…) and are currently making appropriate plans and arrangements for this study. Nick and I are trying to decide who will stay with Evanna at the hospital that night (as one of us HAS to be with her the entire time), and who will stay home with Bennett (as he’s bottle fed, so it doesn’t necessarily have to be me), but still has to get up at 6am and help bring Evanna home the following morning. Regardless, neither Nick or I will get a ton of sleep that night, but we already have a nurse booked for the following morning to lend a hand around the house and hopefully allow us to catch up on some sleep. The sleep study does currently land in the middle of Nick’s day shifts, but he’s going to try and request one of those days off, as we unfortunately have very little leeway with study date options due to Evanna’s trach, it has to be on a day they can schedule an Respiratory Therapist. 

Overall, things continue to get easier as we move forward. We don’t have to lug around her home ventilator when we venture out for the day -- which honestly has made a huge difference, and it has made it slightly easier to take Evanna out of the house. We still have to cart around her large oxygen tanks (she still goes through one of those large oxygen tanks in about 3-4 hours), her emergency trach kit, a bagger and her GTube feeds depending on how long we’re out and about for, but being able to leave the ventilator at home has been a much welcomed change. We obviously hope that we’ll be able to make weans off oxygen after Evanna’s next open heart surgery down in California happening later this summer, but until then, weaning off the ventilator at night is our current focus until August. 
We still don’t have a timeline for how much longer Evanna will have the trach for, but I’m hoping next months sleep study results will help give us a clearer picture of where things are at, and I’m pretty sure it’ll be a major topic of discussion at our next “Combined Clinic” appointment with our ENT and the Respirology Team that we have scheduled at the end of June. In my opinion as Evanna’s mom, our personal experience, and my (limited) medical knowledge, we still have at least another year with the trach. I think we’ll see a ton of improvements (especially after our upcoming open heart surgery with Dr. Hanley) over the Summer/Fall, but then we’ll hit winter, and there's a somewhat unwritten rule to not decannulate during RSV season/Winter when it comes to the pediatric trach population, and wait until next Spring/Summer before proceeding with this very big step. 
However, while this life is indeed “our normal” and we don’t give it too much thought on a day-to-day basis anymore, always having to suction Evanna is getting a bit old, and can definitely be quite the inconvenience at certain times. At the moment, it’s quite stressful when we’re in the middle of feeding Bennett and all of a sudden Evanna coughs and you can hear a huge build up of secretions and she requires a suction right away. This means we have to stop feeding Bennett to attend to Evanna for a few moments, which is always followed by Bennett crying hysterically for interrupting his feed. This situation is pretty much a daily occurrence if either Nick or I are watching the kids by ourselves and we don’t have a homecare nurse scheduled during the day.
On the other hand, we recently proceeded with quite the huge milestone and temporarily put away the living room/transport ventilator (just into one of our closets). We originally had two ventilator “set ups” in our house – one up in Evanna’s bedroom and one down in our living room. Well, since Evanna is up to “all day sprints”, the living room vent pretty much goes untouched and was essentially just taking up space. The living room vent is also the same one we use to take with use when we went out (which is why it's also referred to as the "transport vent"), but again, because Evanna doesn’t require the vent during the day, we no longer bring it with us, and so it just made sense to put it away for the foreseeable future. Now, I know this sounds weird, but it definitely took a little courage to do this, as we almost view the vent like a security blanket. There is definitely a chance that Evanna will come down with a huge respiratory illness and require going back on the vent during the day to help support her through that illness, but it’s also not a hard to pull this additional vent out and get set up should it ever come to that. 
Overall, it’s just kind of a weird to bring Evanna down to the living room in the morning and no longer see the ventilator sitting on the cart anymore. In it’s place, we moved the suction machine to the top of the cart, added her trach care kit to the middle, and have filled the bottom of the cart with diapers, wipes and receiving blanket…. essentially more “normal” baby/toddler stuff, which is somewhat a significant step away from the trach life, and I can’t help but marvel at how far we’ve come!

Thanks for your continued love + support over the last few years while we’ve been on this crazy journey with Evanna, her special heart and the unique elements that a trach, ventilator + oxygen bring. 

xo The Irvine Family



Sunday, March 4, 2018

Bennett’s Newborn Lifestyle Photoshoot

This photoshoot was pretty much everything I asked for and more! Jennie of Guenard Photography continues to outdo herself and I’m so grateful for all the memories she’s captured since Nick and I got engaged over the past 7+ years (yup…. she's basically been there to capture every important moment in our family’s life, including donating her time by coming to take some incredible keepsake photos of our time in the PICU. That photoshoot can be viewed HERE and HERE). She’s basically been witness to our family’s highs and lows and will continue to do so as our family keeps growing!
Our little family has experienced many ups and downs over the past few years, and what these most recent photos capture is a time when things finally slowed down and we’ve been able to enjoy some normalcy and pure happiness. 

Documenting through photos is probably my BIGGEST passion, and I just absolutely cherish these posts and everything they hold. While Nick may not exactly like cost of this hobby (and thinks the photos I take are good enough….except for the fact that I want pictures of our entire family), he has his own hobbies that he spends money on (board games), and so he somewhat puts up with it lol.

Due to how many photos there are, I originally wanted to split it up into 2 different posts – but I’m so behind in blogging, so you’ll just have to live with a very photo heavy post. However, at least it’s filled with two incredibly cute kids!


Grey Pom Blanket from EmmaNate Handmade || Grey Grid Name Blanket from JenniferAnn