Interview with Macey: Age 5

My blog posts have been seriously lacking. I should probably just make this a private journal of sorts, but anyway...here's our annual interview with Macey, who turned 5 this month!

(Mom's notes in parentheses.)

What's your favorite color? Pink (No surprise there!)

What's your favorite animal? Ponies

What's your favorite food? Chicken nuggets (Also last year's favorite!)

What's your favorite movie? Frozen

What's your favorite song? Let It Go

What's your favorite TV show? Sofia the First (Also last year's favorite, I believe.)

Where's your favorite place? Disney World (She visited for the first time this year and loved it!)

Who's your best friend? Wilder

Who's your favorite princess? Rapunzel

What's your favorite restaurant? Burger King (This cracks me up because I cannot even remember the last time she's been there. If she had said Chick-fil-A, I wouldn't have batted an eye, but Burger King?! No idea.)

What's your favorite drink? Lemonade

What's your favorite toy? Elsa and Anna dolls (As you can probably tell, Frozen's a big deal at our house.)

What's your favorite game? Puzzles

Leap of Faith: New Experience

After reading through this and seeing my before and after photos, I'd love for you to check out my Nerium site at emilyjoy.nerium.com.  

Just last week, I did something I never thought I'd do. Ever. In a million years. I partnered with Nerium International to share and sell their anti-aging product. Something like this is way out of my comfort zone, but I just couldn't pass it up for a few reasons.

1) The product is simple. Just a day cream and a night cream. Easy enough, right?

2) The product works. My mom received a sample from a friend, and one day during her seven-day trial, she came over. When she walked in my kitchen, I looked at her and said, "Your skin looks brighter. Is it brighter?" She kind of laughed and said, "It's Nerium." I could see an actual difference in her overall skin tone. Then as I started to learn more about Nerium, I saw amazing before and after pictures of people I actually know. I've started using it on my face and hands, and I've been pretty blown away by two things. First, my hands have been an absolute wreck since our time in the hospital with Hayden because of the harsh soaps and constant hand washing. After using Nerium for less than a week, my hands don't have a single crack or dry spot. Secondly, the redness in my cheeks has reduced. I have naturally rosy cheeks, but not in a precious way, more like a bright red way, so I've appreciated the reduction in that extra pop of color. I'd prefer to let a nice shade a blush take care of that, thanks.

3) Of course, the opportunity to earn extra money is a plus. I work in nonprofit, which I absolutely love, but let's face it...I bet almost no one in the nonprofit arena has ever thought, "Wow--what should I do with all my money?" I'm hopeful partnering with this company will be a fun way to earn some extra income for my family.

4) I have a deep-rooted entrepreneurial spirit. And that kind of scares the crap out of me. I come from a family of self-employed people. My mom, dad, brother, aunt and a couple cousins all own their own businesses. I also like to say that my Nana wore pants and had a job long before women were supposed to do either of those things. Hard work is just not something we shy away from, but I've always been an employee. There's some safety and comfort in that. However, deep down I've always wondered about the possibility of doing something all on my own, and here it is.

My (embarrassing) before and after pictures:
In the first picture, you can really see the redness in the cheeks, especially on the left side, but that's noticeably reduced on the day seven photo. (I also obviously did a better job at sticking my chin out to look skinnier in the first photo, but that's really neither here nor there...)

Day 1

Day 7

I really wish you could feel my hands through the computer. That'd be weird. The difference in day one (sand paper) and day seven (baby smooth) is incredible.

Day 1

Day 7

Life after RSV

As I believe I've mentioned before, RSV sucks. Totally and completely sucks. But thankfully, I think I can confidently say that the worst is behind us. For 21 days, we sat in a hospital room watching and waiting. Three weeks of my newborn baby's life were just stolen from me by that awful, awful virus.

For the first two days, we didn't know if he'd survive. Not only did he survive, but he kicked booty the whole way and did things 100% his own way and in his own time. It'll be interesting to see if those weeks were indicative of what he'll be like as an older child, teenager and adult.

While I still sometimes feel guilt (what should I have done differently to prevent him from getting RSV), I mostly feel thankful. Thankful for God's grace and strength; thankful for the prayers of family, friends, acquaintances and strangers; thankful that our sweet boy is home, safe and sound.

In the coming weeks and months, while we're still in flu/RSV season, our main job is to keep Hayden well. While the doctor said he's not likely to actually get RSV again during this season, any other cold--no matter how minor--could be really hard on him because of everything his lungs just went through. We're basically keeping him totally away from groups of people. We can go outside on nice days (I'm all about the power of a little vitamin D!) and visit grandmas' houses as long as there aren't extra people over. We've also been washing our hands nonstop and making the kids change clothes when they get home from preschool. I've gone through at least one can of Lysol and one container of Clorox wipes since we've been home!

All this hibernation means Hayden will miss out on some of the fun things we take Macey and Easton to, but the good thing is he won't remember missing out and the grandmas LOVE having one-on-one time with that sweet baby.

Two Weeks

Today marks two weeks in the pediatric ICU with Hayden. I had some frustrations over the weekend just because as the weekend team of docs changed, I felt like we lost some communication in the shuffle, which led to less weaning off the ventilator. I suppose that happens sometimes though.

But that being said...today has been a good day! I feel like we're all on the same page, and moving toward getting my sweet boy off the vent this week. He's made such a huge improvement from this time two weeks ago, and I feel like we're soooooo close to getting the tube out.

Right now, we're mainly waiting on the CO2 to come down to an acceptable level. It's been coming down slowly but surely, and this week's lead doctor had a plan to help get that number down. He's tolerating the lowered rate settings on the vent, and they'll continue to lower the rate as long as his little body is OK with it. They've begun some of the little things they do when preparing for extubation--changing certain meds, different methods of feeding, etc.--so that's all pointing in the right direction.

I'm very, very confident that he'll do fabulously when he's off the vent. Of course, I have no medical credentials, but I am very happy with everything I can wrap my head around.

One thing is absolutely certain...hospitalization has NOT slowed down this kid's growth. He's gained a little more than a pound and at least an inch, but probably more. We just dressed him in a little 3-month outfit tonight...and it's almost too short!

Day 8...

Have I mentioned the roller coaster of emotions that come with battling RSV (and probably any other illness that brings children to the hospital)? Yeah, it happens.

This morning, I woke up a bit discouraged. After two or three days of Hayden staying quite comfortable, he was suddenly VERY unhappy. Last night around 10, his numbers started getting all out of whack. So much so that it took until about 12:30 for doctors and nurses to tweak vent settings and do a number of other things to get him comfortable again. Then when I woke up at approximately 4:11 a.m., a couple nurses were around him trying to come up with a plan because his IV had blown. This was so disappointing to hear. He endured multiple unsuccessful IV attempts in the ER and then an unsuccessful PICC line procedure. Before this morning, he  already had three IVs that had blown, so it broke my heart to think about him needing to go through all that again to get another IV.

Then I realized no IV meant he wasn't receiving any of his IV sedatives. I watched him nonstop because I just knew once the sedatives wore off, he'd wake up swinging...literally. I was afraid he'd knock the tube around or out. But no one was more surprised than me when the sedatives started wearing off and his sweet little eyes just started innocently looking around. Content as could be. And he stayed that way all day.

Even when they successfully got a new IV access point, they saw no need to continue IV meds. Yay! Now he's just getting low doses of different sedatives via his feeding tube. This is a great step because along with weaning from the vent, they also have to wean from the meds, but he did wonderfully all day without all of those anyway!

Also, this evening his vent settings were a bit lower and "beautiful" according to the doctors, and his CO2 gasses were much more acceptable. We're still not "aggressively weaning" from the vent, mostly just slowly tweaking, but I'm still happy about this progress.

What's Going On Today

Today has been a good day. This is not to say that we'll be out of here soon, but today has been a good day. As I've said before, I will gladly celebrate even the smallest of victories throughout this process!

I was a little nervous as we moved into the weekend because I knew we'd most likely get a new crew of docs and nurses. I was so happy with everyone during the week that I couldn't help but worry about whether or not I'd feel as at ease with the weekend nurses and the new group of doctors for the week. I'm thrilled to report that my worries were for nothing--everyone has been just as wonderful! I know I sound like a broken record, but I really can't say enough about the compassion and kindness we've felt from everyone. The nurses go above and beyond to not only make sure Hayden is comfortable and taken care of, but also to check on Greg and me. One of our sweet nurses does her best to fix his bed up as cute as possible every time she's with us. I can't wait to show her the new batch of blankets we brought last night so she can keep up the creative work! We've had nurses who have called up here, texted other nurses and sent Facebook messages just to touch base with us. That's a pretty amazing feeling!

Every day during the doctors' rounds we're invited to participate, and I pretty much have at least one question every time. I've never once felt intimidated or nervous about chatting it up with the group. They've always ready, willing and able to not only answer my questions, but answer them in a way that I fully understand what they're telling me.

About Hayden's progress...soon (as in tonight or tomorrow) we're going to start weaning him from the vent. Now that his CO2 levels are within normal limits (HUGE blessing!) we can start the this slow and steady process. We want to go as slowly as his body needs, and there's no way to pinpoint how long that could take. The last thing we'd want is to move too quickly and risk the chance of him needed to be put back on the ventilator!

Right now, he looks super precious in his bed all decked out with a Tigers blanket. I mean, it is game day, so we had to fix him up right! I got to hold him yesterday and today, which was so, so nice. I hadn't held my sweet boy since Monday. If you're a momma, I know you understand how hard that would be. I offered to just hold him until it was time to leave the hospital, but they didn't think that was the best idea. Weird.

Let's see...what else? Continue to pray for patience, encouragement and most of all--Hayden's healing. His chest X-rays are improving each day, so we want that to continue. There are some other minor issues that they expect to resolve themselves once the vent is removed, so please keep that in your prayers, as well. Overall, I'm very pleased with the direction we're headed. No matter how small, each improvement moves up one step closer to home.

My PSA about RSV

Let me start off by clearly stating that I am in no way, shape or form a medical professional. I mean, I've learned a lot in the past week, but I don't think the doctors would be willing to let me make rounds with them or anything. But as a momma, I want WAY more people to understand the severity of RSV.

I went through Hayden's story that brought us here to the pediatric ICU in an earlier post, and as you can see from that--our symptoms started out very harmless. We went from a normal, runny nose/watery eyes situation to seeing our one-month old rushed around a hospital gasping for breaths in less than 48 hours. Not cool.

During our time here, we've talked a lot about the lack of education on RSV. As a mom, I've heard of it and knew the basics but never in a million years did I realize that a perfectly normal, otherwise healthy, full-term baby could end up this sick. And I don't think I'm alone because we've had more than one person come visit and immediately get choked up and say something along the lines of, "I had no idea he was this sick." I purposely haven't posted any pictures of Hayden anywhere because his current state just breaks my heart. I only want positive photos, so I might bombard all my social media outlets once he's a happy baby ready to go home! But like those visitors, I had no idea he could get this sick.

Even so, every single nurse, doctor, respiratory therapist, etc. has told us how common RSV is. And time and time again, we've heard how incredibly serious it is. They do not take this lightly, and we're immensely thankful to have LeBonheur and their amazing medical teams taking care of our sweet boy.

So back to RSV and it's royal suckiness...it's SCARY! And at this point, contrary to some rumors out there, there is no vaccine against it. We've asked during our time here and have learned that there are so many evil strains of this virus (some worse than others) that there's simply not one vaccine that could adequately protect babies. Apparently there are some vaccines that are administered for high-risk babies in hopes that it will lessen the chances of contracting RSV, but nothing for the general population of otherwise healthy babies on a regular schedule of vaccinations.

What can you do to protect your baby? To me (again--not a medical professional) this is kind of the scary part. You can certainly help keep your baby safe by washing hands, making sure people wash their hands before holding your baby, keeping them away from smokers and keeping them away from people with colds, BUT to the average older child or adult, RSV is just a common cold. A simple cold may seem totally harmless, but you could have RSV. In fact, I most likely have RSV right now. But I'm just coughing and sneezing, not laying in a precious tiny hospital bed with a ventilator supporting my every breath.

Also, you can be contagious with RSV for up to 48 hours without even showing the first symptom! Once we get home, Hayden will still be a little sick. RSV is often a two-month virus, so he'll basically be in a bubble until RSV season is over! Maybe until he's like 16, I'm not sure yet.

I wish that parents having baby during RSV season were given more information about the virus in the hospital after the baby's born. Like I've mentioned before, I've always been a hand washer, and our kids wash their hands, but I've never been overly worrisome about germs. Yeah, that's over. Now I'm officially a germaphobe!

Oh and also--just a little side note--the hand sanitizer you probably use regularly (like I do) only kills bacteria germs, not viral germs. So it's really doing nothing to protect against viruses like RSV. Only hand washing with soap and water or the super awesome hospital-grade sanitizer will kill both types of germs. I never knew that!

I don't know if this will be helpful or not, but I'm hoping it's good info for someone. One nurse told me that during RSV/flu season, about half of the babies in ICU are RSV cases, and she can only hope that each parent tells at least one person about how serious and common it is.

Day Five

Day five. Wow. At least I think it's Friday, right? Yeah, it is. Today is our fifth day, which seems so strange. In some ways, I feel like we just walked through the doors, but in other ways I feel like we've been here for weeks. Let's just say, overall, I feel a little too "at home." It's only taken less than a week for me to fall into a morning routine, but that's probably no surprise to the people who know me. If I had a reason to make a to-do list, I probably would have already done that, too. It's weird though, never once have I felt "bored." Even if I literally just sit in this chair and watch his numbers for an hour, I never feel bored. I guess there is just constantly something on my mind, whether it's big stuff (like Hayden issues) or minor stuff (like I'm running out of my tinted moisturizer). There's just always something. Oh, and I can feel myself rambling a lot...kind of like this paragraph of random information. Let's move on to a Hayden update...

Overall, he had a pretty good night last night. Nothing has changed for the worse and there have been no major setbacks, so that's good. But sometimes it's a bummer when I realize there are no major improvements. However, the logical side of me knows and totally understands this is a slow but steady process that will simply have to take as much time as Hayden's body needs. But the momma side of me gets sad or disappointed about some things--depending on how strong I'm feeling at the moment.

He's still intubated and most likely will be for at least another two days. Could be longer. They tried to lower the vent settings a tiny bit yesterday, but they brought them back up because he was once again just trying too hard to compete with the vent. That's one of those things that I knew to expect, but was still a bummer.

Lately he's been getting pretty irritated with the poor nurses whenever they suction out stuff from his lungs...so mad that his heart rate is dropping very low and taking a while to bring back up. I do not like that. At all. Even though I know he'll bring it back up, it is really scary to hear the alarm go off and watch his numbers flash in red because they're way too low. I hold my breath the whole time until I see happy, normal numbers again. But despite that scary drop, he must have the gunk suctioned! It's part of this process, and we so don't want all that staff just hanging out in his lungs. I've said from pretty early on in his little life that he's an opinionated baby, so I think he just wants to let them know that he's not cool with what they're doing.

Really I feel like this might be a pretty uninteresting post because I'm not so sure that it includes any big changes, but this is just kind of where we are right now...waiting, watching, praying.

While I was sleeping last night, one of the amazing nurses who has been with us a few times now did a little more work on his bed to give it another new look. I love how much they all care about the smallest details to put a smile on our faces. They build a little "nest" of rolled up blankets to keep them really cozy, and she used one of my comfy, soft t-shirts and one of his blankets to make his current nest. Hopefully he can tell it's my shirt, so it will feel like we're cuddling!

Another thing about being in the ICU...I don't know if this is true for all parents, but I constantly feel guilty about something, and I need to just let that go. When I'm here, I feel guilty about not being with Macey and Easton. Then I left for a couple hours on Wednesday evening to see them, and I felt guilty for not being with Hayden. When I sleep, I'm thrilled to get some rest, but then I wake up and feel guilty for having missed out on any details that happened through the night. I seriously need to get over it because really, ain't nobody got time for guilt trippin'. We have plenty of other things to focus on!

Updates for Today and Some Things I've Learned about ICU

I certainly understand what people mean when they say hospital stays are a roller coaster of emotions. Thankfully, today has been a good day, but last night was a bad night.

Once Hayden was intubated yesterday evening, he was resting very comfortably because they'd given him a paralytic medicine to keep him completely still during the procedure. Once that wore off, little man was MAD. Even though he was heavily sedated, he was fighting. (Momma was kind of proud of the tough little guy!)

Basically, the vent was giving him breaths, but he kept trying to "breathe over" the machine. For every one breath the vent gave, he was giving two. He was taking in too much oxygen and couldn't expel the necessary amounts of CO2. So, even while intubated, he was breathing very fast and retracting quite a bit. All of that caused his numbers to get out way out of whack (blood pressure, blood gasses, respiratory rate, heart rate, etc.) Not good.

They ended up giving him another dose of the paralytic, so he was once again medically paralyzed for a short time (less than an hour) while his body really rested and chilled out. Since then, they've found Hayden's happy place in regards to the right sedatives and the right amounts, so he's been a chill little guy all day. This is very good! Right now, he needs to let that vent work hard so his body can completely focus on the healing of his lungs. Currently, all of his numbers are good. He's still heavily sedated, and he'll stay that way while intubated, but we're so pleased with his progress today.

On the flip side, his lungs are worse. This sounds scary, but it was completely expected. We've been told all along that with RSV, they typically get sicker before getting better, so we're hopeful today was his peak, then he'll start moving toward recovery soon. His lungs are just full of junk, but they're able to suction that out much easier with the tube. That, along with rest and some other things, will help his lungs begin to clear up.

If his next round of blood gasses test shows continued improvement (numbers are very good right now) they'll begin the process of weaning the vent tomorrow. That certainly doesn't necessarily mean he'll be off the vent soon because they'll be slow and deliberate about how much his body can handle, but that will definitely be a step in the right direction.

Some (random) things I've learned in my short time as a momma with a baby in pediatric ICU:

• You kind of become a germaphobe. I'm all about washing hands and whatnot, but I've never been overly worrisome about germs. I feel like that is soooo about to change in my world! Just last night, I was changing clothes here in the hospital, and I had paper towels all down on the floor so my bare feet wouldn't touch the floor. True story.
• You have an immediate sense of solidarity for other families here. Of course, that's mostly because we're all here for young ones in our lives we're very worried about, but I think it's also because we all look like absolute crap most of the time. Nothing more humbling than chatting it up with a stranger when you haven't showered in at least a day and can't quite remember whether or not your teeth have been brushed.
• You learn enough medical jargon to get yourself in trouble. I feel like I know way more than I do, so I'm always asking questions about this or that, and I bet the sweet nurses are thinking, "I wish she'd just quit trying to do my job for me." Thankfully, they're all way too kind to ever actually say that, but I wouldn't blame them for thinking about it. 

Please continue to pray for our sweet boy and the other families here with their own babies. I'm fortunate to know my little man has a very, very, very good chance of a full recovery, but other families aren't looking at the same future. Pray for God's grace, peace and the understanding only He can provide.

Here's a sweet snowflake Macey sent for her little brother today:

RSV...You Suck

I really hate that my first post after the wonderful news of Hayden's arrival has to be such a crappy one, but this will help me process things and also document details for my own memory.

Hayden, our sweet, precious one-month old, has RSV. Currently, we're sitting in an ICU room at LeBonheur Children's Medical Center, as he breathes rapidly with the support of something that's a step above a regular oxygen tank. It's no fun. In fact, it's pretty terrible.

It's hard to watch him struggle to breathe. It's hard to listen to his rapid breaths. It's hard to not fully understand what's going on, but I know we're making progress. Also, I know the Lord is watching over us every second, and He is ultimately in control.

I suppose all of this really began on Saturday, when he had a runny nose and watery eyes. But he was still his alert, normal self--eating with no problems, being content when awake and sleeping normally. On Sunday morning, he sounded more congested, but nothing alarming. As the day went on, he began to eat less and less, and when we did coax him to eat a bit, it was almost immediately spit up. He didn't sleep at all on Sunday night; he was so congested and uncomfortable. Monday morning, he began breathing rapidly, running fever, and he also threw up a bunch of phlegm and gunk. I was waiting at the doctor's office when they opened. Our pediatrician listened to him for a minute and sent us immediately to LeBonheur.

When we got here to the ER, things moved VERY quickly, which was simultaneously comforting and terrifying. We never waited for a second in the ER, which as you know isn't the norm, so we knew they were taking his condition very seriously.

After the initial workup in the ER, which included a lot of tests that were hard on my sweet boy, we were moved to the pediatric ICU where we have been ever since. The current debate is whether or not he'll need to be intubated. Basically, he's at the point that he's just getting worn out, which makes it difficult for him to maintain such rapid breaths for such a long time. Poor boy is just exhausted, which keeps his heart rate high. It's kind of like a vicious cycle of vitals that all need to work together. He's not out of the woods yet, but he is expected to make a full recovery...it'll just take time.

Today, we're prayerful for more answers, and, of course, improvement and healing for Hayden's body.

Specific prayer requests:

• Comfort for Hayden. His temp has been up and down, which affects his heart rate, which affects his breathing (see the cycle?) and ultimately can make him very uncomfortable.
• For Hayden to be well enough to eat. My little hoss is HUNGRY. He hasn't eaten a full bottle since sometime Sunday, and he's a big ol' boy who's not used to skipping a single meal. However, it's currently just not safe for him to eat because his chances of intubation are high.
• For a good result on his renal ultrasound. This is kind of secondary to everything else going on, but he's had blood in his urine, which is apparently pretty uncommon for a boy, so they want to get a look at his kidneys. Could be nothing.
• For Macey and Easton to not get too homesick/mommy sick. I haven't left the hospital--not sure when/if I will--and I know it'll be hard for all of us to be apart. Greg went home for a bit last night and saw them, and they're in very good hands with grandparents, but it's still tough to be so out of routine.
• For patience for all of the adults in his life...we know he's making progress, but it's tough to have a sick baby. He's got a lot of folks who love him and are praying for him! We just get a little antsy.