It’s hard to believe Wyatt’s first visit with Santa was while he was in the NICU, spending a good amount of time fighting hard against the odds. I remember wishing for some normalcy in our days, but also being so very excited that he would get to meet Santa. Now I can’t help but chuckle because we got to see Santa without fighting a million germs. The “perks” of being inpatient in the hospital, I suppose. We didn’t have to fight any lines of people, only all of his lines for feeds, oxygen, heart rate, pulse ox, and IVs.
This was his first visit with Santa, almost three years to the day.
So tiny. He was so small he fit in a stocking that year. I wonder if he’ll let me try stuffing him in a stocking this year...
He got to see Santa again this year. This year poor Santa had his beard tugged and his glasses pulled off. But it was just as magical.
We remain forever grateful for the progress he’s made these last three years and the memories along the way. Wishing each of you a magical Christmas.
Sitting here, with tears in my eyes, as I think about how I felt three years ago today, on Wyatt’s birthday eve. I felt anxious, excited, but also terrified. I was terrified of what would come next. What would happen when my son, who was expected to be born with a significant heart defect, took his first breath? Would I know what to do, to care for him, to provide for him, to be his everything?
I’d love to say those same feelings don’t plague our family regularly. But that isn’t the case.
The first year of his life, we lived in fear of the scale. Of needing a feeding tube. We lived in fear of a looming diagnosis. We lived in fear of blue spells, choking events, and ambulance rides. The unknown (and sometimes the known) scared us. On the eve of his first birthday, we gathered around his crib in the hospital hoping he would be one step closer to coming home from his g tube placement surgery.
The second year of his life had fears of a different kind. We had a diagnosis, but we knew it didn’t really describe him. We had more questions than answers. But, somewhere along the way, we realized we had overcome the feeding tube obstacle and he was thriving. Then we got a new diagnosis of obstructive sleep apnea, and we became terrified of that unknown. Some more months (and hospital visits) passed, we lived in fear of his constant infections. Pneumonia. More infections. Bronchitis. We became terrified of germs and viruses. We got his wheelchair, stander, bath seat, BiPAP, first hearing aid, and he continued to grow and thrive. We became terrified of how to manage all of his appointments, his therapies, his needs. We had some more diagnoses that year. Epilepsy was the biggest one. On the eve of his second birthday, however, we gathered around his crib counting our blessings because we were home. We took a moment to reflect and realized we faced our fears head on, and we kept our son alive for two years.
The third year of his life has been a wild ride. We are mostly excited, with some anxiety, and much less terror on our minds. We had some scares with seizures, another diagnosis (maybe two.. it’s hard to think when you are sobbing), and added his “boots”. But mostly we lived while laughing, watching, learning. We laughed with Wyatt, we watched him as he learned about the world around us, and learned as he taught us so much. He taught us to live with less fear. To fight for him. To never doubt him. He learned to sit on his own. He got his new hearing aids this year, some shots, some emergency medications.
On the eve of his third birthday, I feel a lot of feelings. I’m excited...
.... to see who he continues to grow into.
.... to watch him continue to learn and explore his world in a new way.
I’m anxious...
.... to raise a threenager.
.... about the unknown.
I’m sad...
.... I tucked in my two year old, and tomorrow he will become a three year old.
I’m staring, with tears in my eyes, as he laughs at me when he should be sleeping.
We can now exhale. It feels so good. We held our breaths for over a week, not knowing if what we were doing was right. Not knowing if our lives would be changed after the results. Not knowing if what we have been doing was actually working.
Then we got the call. Wyatt’s sleep study results were good. He did great.
{Photo of Wyatt in pajamas, sitting in the recliner with a look of surprise on his face. He’s snuggled with his blanket.}
I feel like I should probably explain a little about our worry with having to get a trach. There are risks that come with trachs. Risks that we have seen our friends go through. Infections, clots, damage to vocal chords, damage to swallowing tubes, the list goes on. In the case of any intervention, you have to weigh the risks and the benefits. Because Wyatt has only demonstrated risks to breathing while sleeping, it was hard for us to imagine a trach just for sleep (which he doesn’t do much of...). Always, we would do what was best for him, but we felt confident he didn’t require it. Sure, neither of us our doctors, but we are experts in our son.
The trach would also mean I likely wouldn’t be able to work, as finding someone to care for a child who is dependent on a ventilator is nearly impossible. We struggled enough to find someone to care for him with a feeding tube and seizures.
For now? We don’t have to worry. And we are extremely thankful.
{Photo of Wyatt stretching. He’s wearing his pajamas with his chest showing and a half grin on his face. His feeding tube button and dressing are barely visible.}
We were able to wean Wyatt off of oxygen on the BiPAP and his back up rate, which is the rate at which the machine will breathe for him if he doesn’t breathe, was reduced. The oxygen and back up rate are huge. He had extremely high back up rate on the vent and by pushing this down, we were able to see he can safely breathe at a lower rate. He still likes to “ride the vent”, which means he doesn’t always take spontaneous breaths while on the vent, but he’s doing so safely. All of the measurements they took were clearly within normal and no matter how he breathes, he’s breathing and doing so safely.
Next step is to follow up with our Pulm team in office and we will get scheduled for another sleep study in 6 months. Our Pulm team felt like one reason he nailed the study is because he’s getting bigger and stronger. We agree.
Big things this week, developmentally. He’s taking off his socks alone, on command. He’s waving when we wave to him. He’s fighting to get out of his car seat and sit up (thankfully the straps contain him once we wrestle him enough to get him strapped in the seat), and he’s definitely telling us how it is. Most of the time a no is met with him yelling back at us or shaking his head no at us. Typical toddler behavior! We count that as a blessing.
We have a growth hormone stimulation test in two weeks, which is our next step hormone-wise. This will determine if he needs growth hormone injections.
Wow. I know my previous post said time flies when you’re having fun, the same holds true. We have had a busy summer, lots of fun and some set backs.
{Wyatt gearing up for our trip to Michigan. Collage of photos of him sitting in his high chair, playing with peaches and eating peach yogurt. Peaches are a Michigan summer staple.}
We traveled to Michigan for a little over a week, with a stop in PA on the way there and on the way home. Our trip to Michigan included a fun little virus and ended with hand foot and mouth disease, which cut out PA pit stop short. Upon our return, Wyatt developed a kidney infection, landing him in the hospital for two days. When this kid does things, he does them BIG! One illness? Nah. Two? Nope. Three? You bet.
While in Michigan we spent time relaxing, swimming, and playing cards. It was a slow paced vacation, for sure. Much appreciated, given the busyness of the rest of the summer.
{Wyatt practicing his sitting skills, while wearing his pajamas. He has a mischievous grin on his face, seemingly proud of himself.}
Upon our return from Michigan, we have continued to keep up with work, doctors appointments, and trying to have some fun in between. Wyatt has decided he now likes bath time, but much prefers to do things himself. Not just in the bath, but in all areas of his life. Totally typical two year old behavior, with some added frustration on his part since those things are more difficult for him. We continue to look for ways to offer him independence, while practicing the art of saying no and setting limits. Like when he shakes his head no at us and proceeds to take out his hearing aids. We remind him that’s not okay, and replace the aids. Over. And over. And over.
{Photo of Wyatt brushing his teeth. He’s smiling a crooked smile and appears very happy to be doing it himself. What isn’t pictured is moments before when he was screaming and shaking his head no when Mom tried to do it for him.}
Wyatt has a big week coming up this week. We will head off for a sleep study on Wednesday. You may recall that our last sleep study (oh who are we kidding? Every sleep study!) didn’t go so well and doctors reset him back to his original settings which are very high. The goal at this sleep study is to start him off on the high settings and titrate his machine to fine the, hopefully, perfect setting. Our biggest hope with this sleep study is that his settings can be lowered a bit. The best case scenario would be lower settings. Worst case scenario will be he needs increased assistance/settings while sleeping. If that’s the case, we will begin the conversation about next steps. But we have been told the only next step if he requires higher settings is a trach. One step at a time, though.
We welcome your continued positive thoughts for progress in his multiple therapies and a sleep study that provides clarity.
We have had a wonderfully busy summer and our favorite guy has done some cool things. It’s probably easier if I just do a photo dump and explain in the photos.
{Photo of Wyatt wearing a bib that says, “These fools out my cape on backwards”}
Wyatt had his swallow study consult (wearing that rocking bib!) and we determined that at this time we are going to focus on increasing volume rather than texture. She did believe he was safely swallowing the puréed foods, so he can eat as much as he would like. She also said if he’s grabbing for our food or other foods on a tray, we can watch him closely but let him try it. He’s tried pizza, spaghetti, Macaroni and cheese, and some ketchup. We will reassess when his volume increases and he’s taking more by mouth. In the meantime, he’s growing and that’s huge for him.
{Photo of Wyatt laying on the floor snuggled with his beloved blankie, with a huge grin on his face.}
We met with a few specialists so far this summer and they’ve all been pleased with his progress. His GI joked that she didn’t even recognize him because he’s grown so much, he’s blabbering some more, and moving all over the examine room. She was more than pleased. She was ecstatic!
{Photo of Wyatt with his daddy. Both of them are wearing bright shirts, his daddy is smiling and Wyatt is trying to eat his fingers.}
We went to a family reunion in Virginia and had a blast visiting with everyone. Wyatt got to swim with his cousins, roll around on the floor, and got lots of love from the aunties. It was nice! He also learned a new skill! Check out the video.
{Video is Wyatt crawling across the floor trying to get the remote control}
We finally moved into our new home. It may take us a bit to get settled, but it feels good to be home.
{Photo of Wyatt sleeping in front of two boxes. He’s snuggled in his jammies, not helping to unpack.}
{Photo of Wyatt in a striped bathing suit, giggling at himself while pulling the pant leg on his suit.}
He’s continued with PT both on land and in the water. During these sessions, he never ceases to amaze us with his personality (he’s VERY strong-willed) and definitely does things on his plan, not ours. You can’t see it well in the photo below, but he’s standing. With only support at his ankles. This is HUGE. He also did repeated sit-stands, which he’s never done before. PT was blown away. We just kept saying, “Whoa! Who is this kid?!” (Never mind that he’s licking his PT... and is only motivated by her hands. Whatever works! Thankfully she’s on board with the unusual ways he’s motivated!)
{Photo of Wyatt in his striped bathing suit, in the pool with his PT, standing. His tongue is out, licking his PT}
Can’t believe it’s almost August. We have fun things to look forward to, including a trip to Michigan!
We got the results back from Wyatt’s sleep study. Turns out, he didn’t do so well. The sleep doctor who interpreted the study was terribly alarmed. Thankfully his pulmonologist was able to talk her through his case and eased her fears. She brought up a trach again, which was shocking to us. We have a plan, but that plan involves going back to presurgery settings (which are high, even for a grown adult) and monitoring closely. He will see ENT again to determine if there may be scar tissue impacting his airway, and we will do a repeat sleep study. There were a few variables that likely played a fil in his poor study, including being diagnosed the next day with an infection, no humidification on his machine, and starting him low for the titration instead of starting high and going lower. We will continue to watch to be sure he’s breathing safely and will reassess after the next study.
{Photo of Wyatt, laughing while wearing his Dino pajamas and with one hearing aid out of his ear because he can’t keep the darn things in his ears}
This week we have a swallow study consult scheduled for Thursday morning. This study will show what texture of foods are safe, given his uncoordinated swallow. Mama is a little nervous, since it involves pushing him a bit with foods and choking is probably the scariest thing I can think of (which is saying a lot, since he’s a medically complex kiddo who has been through lots of scary things...). We are supposed to bring food, so I’m not sure if the appointment will include the actual study or just some practice with food.
{Photo of Wyatt in a tropical onesie, trying to eat the remote control. The remote control seems to be his favorite thing to try to eat!}
This weekend Wyatt had a bit of a scare while we were at a friends house celebrating her daughters birthday. He had a seizure. This is a little alarming, as his seizures have either been due to a fever, or have been staring spells (partial complex seizures). This seizure was all four limbs convulsing upon waking up. We consulted with the on call neuro who felt like it was okay to keep him home and monitor. We followed up with his primary neurologist who wanted to increase his Keppra. We will continue to monitor and attempt to get it on video if it happens again. It’s easier for her to tell us what may be going on if she can see it.
{Photo of Wyatt, upside down, laying in the middle of wood floors, in his new house!}
We are hoping to settle on the new house in the middle of July, but Wyatt had the opportunity to lay on the new floors. We were in the house when he had an unfortunate diaper issue, so he had his first diaper change. And since we weren’t ready to have that mess on the carpet, he got the royal treatment on the living room floor. As you can tell, he didn’t seem to mind the freedom the empty room gave him. We look forward to so many adventures in our new home.
{Photo of Wyatt, mid sit/falling over with his hearing aid laying on the floor next to him. He’s laughing as he’s starting to fall over onto the rug}
We hope you all have a fantastic week and Happy 4th of July a few days early!
Wyatt did well in the sleep study. Our measure of success continues to be no middle of the night wake up with lab staff sending us to the emergency room. So, we will call it a win. We won’t have results for 3-5 days. I’m also assuming he didn’t do too horribly or they would have sent us home on higher settings. Unfortunately, those sleep lab people are pretty tight lipped. Couldn’t get a read on them.
{Photo of Wyatt before the sleep study. He’s in his pajamas, smiling.}
{Photo of Wyatt after he was prepped for the sleep study. He’s covered in electrodes, wrapped in gauze, and wearing his giraffe BiPAP mask. He’s looking as if saying, “What are you fools doing to me?”}
The morning started at 4 am, when someone came in the room to move an electrode and he figured that was as good as an alarm clock and was up for the day. Phew. Mama is tired.
He had an adventure planned with his buddy Brayden at the water park. I think the pictures show just how much he loved it!
{Photo collage of Wyatt enjoying the water park. Pictures show him giggling in the pool and laughing in the lounge chair.}
After the water park, we headed to get his hearing aids. It was a little overwhelming for him, since he was going on little sleep and had a fun morning at the water park. He was a trooper, though. His hearing aids are a bright teal, with neon green tubing and multicolor molds.
{Video of Wyatt using his hearing aids for the first time. He is sort of apathetic at first, then starts giggling.}
We look forward to seeing how his super cool hearing aids will positively impact his life. He’s destined for great things, and hearing better will help that!
I should also note that after hearing aids, he got to visit with the Fox clan and then was tortured (his feelings, not mine) at PT. Thankfully he only used his words (well, screams) to express his frustration, rather than his teeth, which he did in the pool this week. PT has bruises to prove it. Sigh. She takes a beating and still lets us come back each session.
{Photo of Wyatt showing off his super cool hearing aids. His face appears to be saying, “Mom! You’re so embarrassing!”}
Next week we have endocrine appointment and will *hopefully* close on our new home. Cross your fingers all goes smoothly.
Stopping in for a quick update, since I’ve had more than one person remind me that it’s time for an update.
{Photo of Wyatt, laughing, while sitting in his stroller waiting for an appointment}
This guy has some big things in the next 24 hours. He has a sleep study tonight and hearing aids tomorrow! One of those is a little more exciting than the other. The sleep study is to see how he’s done since having his adenoids removed. We have noticed a huge difference in his sleep, his breathing, and his demeanor. I’m hopeful the sleep study confirms what we saw after his surgery, which was his decreased need for high BiPAP settings. He’s on a very low setting and doing well at home, but the sleep study will monitor things we can’t see or monitor at home. These are things like movement, CO2 levels, and brain activity.
{Photo of Wyatt enjoying his dinner and his bib. His bib has a Western Michigan University bronco, which is his mommy, Nana, and Papa’s alma mater}
Tomorrow afternoon he has his hearing aid fitting. We are super excited (and nervous!) to see how he responds to being able to hear his environment better. I suspect he’s going to be spending the next couple of weeks reminding us to quiet down. If you know us in real life, you know we aren’t very quiet. I’m also guilty of talking louder to ensure he can hear me. My hope is to try and grab video of him when he uses them for the first time.
{Photo of Wyatt in bed in the morning, with a huge grin on his face}
We would welcome good vibes for the sleep study tonight, as well as continued health for Wyatt.
We have had a busy month, that’s for sure. Wyatt started out the month sick, then had surgery, followed by an UTI, and now he’s gearing up for his hearing aid consult. In between all that, we found time to hang out with friends, go to the zoo, hit up some doctors appointments, and continued therapy appointments.
{Big boy getting ready to see the animals! Enjoying the breeze from his stroller fan, while “waving” to his fans.}
Wyatt got to see the penguins, an elephant, the giraffe, and some flamingoes. We told him all about how special flamingoes are to mom and dad, since we were married at the Flamingo in Las Vegas.
{Posing with Mom and dad by the flamingoes. Wyatt is more interested in the fan than taking a photo.}
Wyatt spent a good portion of last week sick following his UTI, but he seems to be on the mend. We followed up with urology following his surgery and everything appears to be healing well. We even got the all clear to come back in a year, rather than every 6 months. His doctor gave him a stern lecture about actually making it 365 days before seeing him. Let’s hope he listens to the doctor, since he doesn’t like to listen to his mama.
{Wyatt snuggled with mommy. Notice his crazy hair!}
Wyatt has been showing an increased interest in food and things in/near his mouth. He’s been cleared for puréed foods for a while, but we were trying to keep him healthy for surgery so we backed off the foods for a while. We are back to playing and exploring (and eating!) foods again. He will have a swallow study soon, which will give us more information about what foods he can safely eat. He’s starting to suck on things like our shirts, arms, fingers, feet, basically anything he can get in his mouth, so I gave him a bottle with some water in it. He did 7 sucks. Not bad for a kiddo who hasn’t had a bottle in almost a year and a half.
{video shows Wyatt playing with a bottle, not very happy when Mom tries to help him.}
{picture of Wyatt trying to feed himself, making quite a mess of his baby food}
He’s also started showing an interest in standing. We are working on getting him his own gait trainer at home, which is what he uses at PT. In the meantime, we found a used baby walker and he’s started spending some time in that. I suspect it won’t be long before he’s running over our toes.
{video of Wyatt in the walker. A few seconds in, he makes the walker move on its own}
We know the sky is the limit with this boy! He continues to be happy most of the time, unless he’s at PT/OT, or when we tell him no. His best friend continues to be Duke and he’s started screaming at Duke when he moves away from him.
{photo of Wyatt in his walker. He’s giving Duke, the dog, a look because he can barely reach him to pet him.}
Up next: hearing aid consult! I see some bright aids in his future.
P.S. in case you’re wondering why the captions are more descriptive than usual, I’m trying to be inclusive of readers who may be blind or visually impaired and rely on text to speech software. That software can’t accommodate images, so those readers are left wondering what an image may look like. By providing a brief description of the image, all the readers may enjoy Wyatt’s posts.
Wyatt made it out of surgery in record time today. He was a good patient, stunned his surgical team, and wowed the anesthesiologists.
{pre-op fun, rolling around and being silly}
He went back for surgery around 7:45, procedure officially began at 8:15, and he was out by 11:15. Not too shabby, since they blocked off 6 hours for it all.
His scopes went well, and pulmonology commented that things looked way better than they expected when they got into his lungs. His airway looked good, his adenoids looked huge, his tonsils looked good, and his lungs looked good. ENT made a game time decision and decided since his tonsils looked good on examination and on scopes, he would keep them intact. The biggest factor for this was recovery and since he hadn’t had any issues, we chose the conservative route.
His hearing test didn’t go as we had hoped (even though we secretly knew..) and it came back as moderate hearing loss. The good news is they did the molds for hearing aids, since that can be difficult to do when awake. We will speak with the audiologist soon to develop the plan, but ENT felt confident in saying that the hearing aid we have wasn’t sufficient (we knew this also) and traditional over the ear aids would be appropriate. This kid is going to be a bionic kid soon— hearing aids, boots, feeding tube.
Urology did their procedure and it went well, too.
He transitioned from the OR to the PICU in order to recover, as we know he doesn’t recover well and the team wanted to be sure we could work on BiPAP settings and wanted to be sure he continued breathing well following all the tubes and scopes.
{first few minutes post-op in the PICU}
He was quickly weaned off oxygen and is breathing room air currently. Even asleep. As in, no desats. This. Is. Huge.
We had some snuggles and nap, and he even opened his eyes for a few minutes. No laughs or smiles, but I suspect we all may feel a little gross following surgery.
He’s now resting comfortably, even in between pokes and prods from the nurse. He’s been having some bradycardia episodes (low heart rate) but the team isn’t concerned yet, as it’s somewhat common following anesthesia. We will monitor overnight and consult again in the am.
Tonight they are dropping down his BiPAP settings to a much more normal rate, as he was previously on settings for a grown man. The hope is we can get the settings down, maintain sats at home, and then do a repeat sleep study to see if we can reduce even more.
We thank you for your continued prayers. This guy has a whole army of people rooting for him and we are so very thankful.
Here’s to a restful (alarm free!) night for all of us.
This evening, while reading to Wyatt, I was reflecting on where we were in this season of his journey. I realized how many things in our day were pretty typical for a two year old.
We read books, sometimes they get read correctly and sometimes they get read upside down or while trying to quickly read a page before he turns it to the next one.
And sometimes, we have temper tantrums in the middle of the book because the dog walked by and licked him, which caused him to drop the book.
We have moments of pure happiness, while getting ready for our day. We play. We try to put anything that’s near us in our mouths. We test boundaries and test then again to see if adults really mean it.
Sometimes we throw temper tantrums for no good reason. At least, that’s how it feels to Mom.
We also take some time to snuggle with mom and take a nap.
We also act like a toddler during spring photos and refuse to smile. (Note: this is NOT the outfit we had planned for photos! A very unfortunate diaper mishap created this look...)
Things have been pretty quiet around here, which is a good thing! We are gearing up for surgery next week and doing our best to keep Wyatt healthy. Surgery is scheduled for May 14th. Cross your fingers for continued health and a successful surgery.
Full disclosure: I also wrestled him into a car seat today, listened to him scream for an entire car ride, got a toy thrown at me, wrangled him while he was rolling away without clothes on, and wrestled him to close his diaper. There is no photographic evidence of those things... But I also got a sloppy kiss, lots of laughter, and a boy who is on a mission to assert some independence.
