The RSV Virus

Jaron and I switched spots for the weekend and for me it was so needed. Zoey kept asking if Michael was going to be ok and she wants to see him so much. It's hard explaining why she can't see him other than because he's sick and she'll get sick or she'll get him more sick. I came back today to a whole new baby. He was all over the place! He is a ball of energy. When I left Friday night he had still been sleeping all day and night but I guess he just needed a good ole' dose of dad. The nurses got a play mat for him to crawl around on and he loved every minute. We keep hearing how cute he is and how happy he is and it reminds me of how lucky he is to have this energy. A lot of cardiac patients never will. Most kids that I've read about with Shone's Complex have troubles playing because of how winded they get. One story that I've been following had me in tears because after her 4th surgery this 6 year old girl climbed up a ladder for the first time to go down a slide at a playground. Amazing.

Michael hadn't seen Jaron for about 5 days so when Jaron came in Friday night Michael was smiling from ear to ear and a little in disbelief. At first he'd just woken up when he'd heard Jarons voice. He looked up at him and layed back down. It must've taken a moment for him to understand that he actually did just see his daddy because he shot right back up and had a huge grin on his face as he started reaching for Jaron. They had fun but our weekend was cut short by a blow out poopie. Michael covered Jaron so we needed to switch back just a little while ago so Jaron could shower. The antibiotics are definitely in full effect and fighting hard against these viruses. The nurses are supporting him through and cheering him on every day.






His lungs are clearing up slowly and his oxygen was almost completely weaned. On just room air alone his SATS are still only catching between 84-88. We need them in the 90's so they are going to bring it up again a little to see if they can get what he needs.

This kid is a crack up. He got two new blankets that had been donated and he's loving them.They are super comfy and he's finally snuggled up asleep in them. Thank you to those that donate what you can. You are wonderful and will be truly blessed in return.

We're Back!

Sunday night Michael got pretty sick and because of respiratory purposes we called the paramedics and took him by ambulance to Children's in Aurora. He was crashing pretty fast because he wasn't getting the oxygen he needed. Tuesday we got positive results for RSV and CoronaVirus. We're in the CICU as a precaution. He's crashed a few times since getting here which is per the Doctor "Classic RSV" - It's like a roller coaster ride.. He's doing better! - nope- He's doing better! - nope - He's doing better! and that's where we are right now. He's doing better! We've gotten him some toys to play with and he was eating a little better yesterday but crashed again last night. They had to raise his oxygen flow to 8 liters last night and are also doing nebulizer treatments every two hours as well as a suction/sinus rinse. Because of the high air flow he's unable to eat or drink (to prevent asphyxiation). He hasn't gotten a bottle or food since just after 5pm last night. They were able to bring his air flow down to 7 liters this morning and he seems to be handling it really well. He's sleeping a little more sound in between treatments which is showing how much they are helping.

I haven't really had time to update the blog so that is kind of a short update. I've been able to get some pictures so I thought I'd at least jump on for a moment to post them for you :)

He kept pulling of the leads to his monitor so they stuck them to his back instead

 

Mikes toy from his nurse Leah - He used his IV hand as a hammer and loves it!

He's not really enjoying his crib but this was the first time he was ok playing in it

 

His IV Hammer

 

Not the best pic other than being a funny face - I wanted to point out how much he is pulling in while breathing. On the left you can see his ribs. The point above his belly button is a scar from one of his drainage tubes after surgery - possible herniation.

PS It is also CHD awareness week starting today. Just thought I'd spread the word and some info. There are so many babies, children and even grown adults dealing with CHD. 1 in every 100 babies is born with a heart defect. Michael's defect is known as Shone's Complex http://www.pted.org/?id=shones1

Our current nurse has two patients at the moment - Michael (10 month old) and a man in the room next to us that looks just over 30. CHD is all around us and the symptoms may slow for a while but for so many it never goes away. I encourage you to make an effort this week to pay it forward from one healthy heart to another. Fill your heart with love so that others may see that there is still plenty to go around <3

SPF Required

The face that used to be ghost white is now red. Michael got his first sun burn this weekend as we went hiking at Chautauqua in Boulder. I haven't had him in the sun so much because one of his medications says not to. This certain medication makes him more susceptible to burning. Of course I'm the mom that didn't think twice because it was still too cold to get a burn right? Wrong! Michael beats all other odds so why not this one. Michael is also the most soggy baby you'll see right about now. He's getting a couple more teeth so the water works are on. I used to carry towels around for his excessive reflux and now I'm carrying things to mop up drool. I've never been big on bibs but recently I find myself thinking twice about how useful they may be.

Michael is hospital free now for 43 days. I think of how long it feels but when you count out the days it feels like only yesterday. Michael no longer sees either of his therapists. I miss them but am also thankful that he has no need of them. He's not delayed in any way. I spoke to his physical therapist this morning and she asked if I could call her when he starts walking. Not for a follow up but because she's become so close to him. His therapists definitely became friends that I will always be thankful for having.We recently took a trip to Englewood to get Michael his RSV Inoculation. He'll receive two shots, once a month through April. These shots are full of RSV antibodies. This means a drive to Englewood once a month. Believe me, I've done the research and there are NO closer offices that provide these shots (at least that my insurance covers).



The bathtub is one of Michaels favorite places to be (other than being held). With just a little bit of water in the bottom he crawls and splashes and climbs all over. He gets a bath a couple times a day at the least, or just after he eats. He's the messiest and, I know it's weird, he's also the angriest eater I've ever met. He yells while he eats, almost as if he's demanding the food to do what it's made for and get in his mouth! His favorites include crackers and Nilla wafers because he can use his teeth on them. He loves scraping his teeth against anything that gets in his mouth. He uses his teeth to rip away at the food as he growls and eats at the same time.

We just began trying to live a heart healthy lifestyle for the new year. We've began our weekend hikes as well as 20-30 minutes of cardio a day. If we want Michaels heart to be healthy then we need ours to be healthy as well. We're eating healthier and a lot better than we had been and just trying to stay more focused on what we're putting into our bodies. We're off to a great start and we're also feeling physically better. 

Coming up on Michaels 1st birthday we're also getting a good dose of reality checks. Financially we're still not making it. This has brought up a lot of conversations regarding Michaels condition and the possibility of leaving him in someone elses care for a few hours a day.As you can imagine, we're getting opinions thrown at us and even our own seem to be difficult to think about and our conversations seem to drop when they get to stressful to think about. Reality is, we need to find another source of income and it's not an easy thing to talk about. I don't like posting information like this because I don't like showing this side of our reality but I also don't feel like hiding our problems. I know that so many others are in similar situations and ours shouldn't be sugar coated. This is part of our daily story and even being 9 (almost 10) months down the road we're still running into road blocks. Life is full of lemons - The trick is finding use out of the ones that are bruised.

Tug-of-War

I am so happy to be sitting down and writing this right now. Michael just fell asleep and Zoey is distracted which means I get a few minutes to update and reminisce over the last couple of months. This time seems to be going by faster and faster and becoming a blur.

 

Michael is doing fantastic! We just celebrated his 1st Christmas and his 1st New Year. Of course I don't have the picture of Mike with Santa on my computer but I promise I will post it soon. Santa loved him and Mike found his beard fascinating. It was so wonderful to have him with us when we got to see both our families. He's so happy to welcome people into his life. Stranger Danger is going to be a tough lesson for him as he meets so many new people daily; through his doctors, nurses, and even people I haven't met that are more than willing to participate in our heart journey. It is so wonderful to see such a huge positive reaction started by such a small baby boy. Michael is now 9 months old. He's been home for 6 months. At 9 months he has 4 teeth, he's crawling, eating everything he sees (even if it's not edible) and he is even throwing great big tantrums when he doesn't get what he wants. This boy gets tougher every day and shows his spirit through and through. If you're grumpy - he's grumpy. If you're loud - he's loud. If you're quiet - he's still loud - haha. It's hard to appreciate it in the moment sometimes because he is so spirited but in these few moments of reflection I see a lot of me and Jaron in him. Also a lot of Zoey.

Michael follows Zoey Everywhere! He's her little groupie. She is his protector as well as his tormenter. If he has it, she wants it. If she has it, he wants it. Sharing is a tough thing to teach - Any advice is wonderful!








We've all had a tough 9 months. Our little family has felt trauma and emotion in a larger quantity than some feel in a life time. Zoeys 3rd Birthday was on December 10th and We wanted so badly to have her be #1 for just 1 whole day. She was definitely spoiled with gifts and love and she even had a princess birthday party. She was definitely a princess for a day. That evening Mike was sick and his color had been off for about a week. His color began to turn more purple moment by moment and again we made the trip to the ER at Childrens Aurora. During that drive I struggled with so many emotions. First off leaving Zoey on her birthday. Secondly, the thought that this could be it. This could be that moment that his heart gives out and needs his valve replacement surgery. That was the busiest I have ever seen a hospital. After we arrived Michaels color looked great and he was playing with us and having fun. But after waiting for an hour we finally said something and they didn't even have us set in the system. They got us in right away and ran every test they could think of and couldn't find what was causing this episode. They didn't see the discoloration as it had cleared up once we arrived.  His mood was good and he was eating great. They did a blood test, an Xray,  an EKG, And an Echo and found that everything was as good as it has been. As scary as it is not to have an answer, the fact that Michael was ok right then was everything I needed to hear. We got home the next morning at about 4:30am and I cannot describe the feeling I felt other than saying it was the worst hang over of my life. The rush so many emotions, good and bad, coming and going so quickly was more than our bodies could handle on no sleep. Another one of the hardest nights of my life.

For New Years I prayed for a less stressful year. For peace and calming. Seeing as the world didn't end this could actually be possible, Right? I got to spend New Years Eve at my moms and fell asleep well before midnight. I felt so old but wanted to sleep so bad! After breakfast we went home and we could not believe what had happened while we'd been gone. One of the neighbors up the street and struck Jarons car that was parked in front of our house. The back was smashed in and the driver side tail light was gone. There was no note, no message, and no one around. AGH! Our neighbor who is, thank heavens, a police officer was able to give me the non emergency number to call in to and him and his wife stayed with us to assess the damage. As we stood in front of the car, a girl came from up the street to admit what she had done (while driving her boyfriends car) and we were able to get her information and Thankfully!!!! he had insurance. This morning the car was declared totaled and next week they'll be towing it and we'll be looking for another car. It all happened so fast it doesn't seem real. I made sure I thanked her for coming forward. It had to be hard seeing us all surrounding the car so upset. But, she did it. Wow. People are still good. Even if it takes them a little longer to pull themselves to their feet and admit that they are capable of wonderful things. This year I challenge everyone to pay it forward. We've been given so much this last year that it makes me feel the need to give back in any way possible. Give to others even if it's a smile. You never know when someone needs to see a good spirit.

 

Happy New Years Everyone!

The Awakening

Sounds like the title to a scary movie to me. It's like being woken up from a dead sleep with a rush of adrenaline that lasts only for a minute, which is about how long it takes me to realize that Michael is awake. again. Its been going on for weeks where he wakes up in the night screaming. Usually a bottle pacifies him, but what about when the bottle stops to help? Or when he's already had a bottle and he isn't hungry? Well, about 3 or 4 times a night this is how I wake up. The screaming continues as we go down the stairs, into the kitchen, and as I make the bottle while holding him (most of the time), and until the bottle reaches his mouth. After talking to both his therapists and his pediatrician we've decided that he needs to begin to learn some self soothing techniques. This means we need to try having him put himself to sleep and instead of the bottle in the middle of the night I try to sooth him without it. So far its about 30 min of screaming and sleeping patterns before I give in and get the bottle. I'm getting better though!

It is wonderful to say that Michael was able to experience his first Thanksgiving! I was so happy to have him there with us, sitting in the highchair next to the table. I bought a little jar of turkey dinner mash so that he could have a proper Thanksgiving. As you can probably guess a jar of turkey dinner mash tastes like poo so in reality he had half a baby spoonful and that was the end of that.











Thanksgiving weekend was full of surprises and so much fun with family. Both my sisters that live in Utah were able to come out and My sisters husband met Michael for the first time. Thanksgiving also brought the flu. It swept through our family like the plague. Not trying to jinx him or anything but I think Jaron is one of the only ones that didn't catch it. Michael threw up a few times and in the middle of the night woke with a fever of 103.6. His heart rate was around 160 and he was kind of breathing funny so we made the decision to take him the urgent care just to be cautious. Like we could've guessed it was just the bug passing through and like any other baby we treated him with Tylenol, Motrin and Pedialite. The Cardiologist that came to urgent care to see him was so happy to see her "boyfriend". The last time she saw him he was failing with respiratory problems caused by his arrhythmia. She was shocked at how big he'd gotten and said he was cuter than ever (which is so true). After telling everyone that Michael had the flu the rest of the family fell with a similar fate, one after another.We're finally feeling better and moving on to Holiday #2 - Enter: Christmas!!

Zoey's 3rd Birthday is next week! December 10th - We are so excited!! I gave her a few party options thinking she could get a present related to the theme that she picked and in the end she chose a princess party. Ha - This scared me a little at first. After being on Pinterest for about a day searching different things I think I have a really good idea of what we can get set up for her. I'm excited to celebrate my first baby's birth. I've been thinking about how wonderful life was after I had her and how we were able to conceive such a beautiful little girl. We were told shortly after we were married that we had very small chances of having children. We now have the most amazing two children. We've been gifted with two of the most beautiful angels. Zoey's getting smarter by the day and Michael is already crawling and now eating solid foods. It's so much fun just to sit back and watch them grow. I'm so excited to celebrate Zoey's life and what all her life has brought us.

My Aching Back

One of the only pains you'll ever love to feel, the pain in your back and shoulders from a bouncing baby boy. Michael is that boy and he LOVES to jump. The only thing is, he wants to jump on your lap, while you hold onto him. In comes the pain at the end of the day. This boy has every reason to be held non stop through out the day, so he is (mostly). He loves playing on the floor and trying to follow Zoey and me around but he is still pushing backwards. It is so rewarding to see him laughing and playing and doing everything that other baby's his age are doing. He's started on solid foods and is the messiest eater in the world. This makes it even more fun to watch as Zoey tries feeding him. The tug-of-war begins. I have to intervene, Michaels grip is a good one. This boy doesn't give up easily (I know he never will). Zoey loves to feed her brother and she also loves to scare him. It's one of her favorite things to do right now. Pretty much every time Michael begins to make sounds, she copies him - louder.

Zoey has had some great time with her cousins lately. She had a spend the night with my brothers kids and I realized again how much she needs to get out and play. This morning we walked over to Teeny Greenies which is a little consignment store by our house. A friend from church invited me and I am so glad she did. Every time I saw the sign I'd thought it was a marijuana dispensary. She laughed and told me that it's much better than a dispensary and it's children based. They have story time Tuesday mornings and crafts and cookies Wednesdays. It was so great to get out and let Zoey run. She of course brought her stroller as well so about half way there I loaded her and her stroller into our double stroller as she was too tired to continue. We were blessed with good weather on our walk and had a lot of fun visiting and playing with our friends.





Michael has two teeth now and is still on his way to crawling. I am so excited that he is going to experience his first Thanksgiving and his first Christmas this year. Our families have so many traditions during the holidays that I cannot wait to begin. He gets to be in the pictures to. I feel so blessed to have our family together during the holidays. We will have both of our kids with us the whole way. No traveling back and forth from the hospital. Just the warmth of our own home (and grandma & grandpas of course)

The holidays are upon us! Let the festivities begin!

HM Round 2 - Complete!

Michaels most recent heart monitor came with it's very own cell phone. Just like any cell phone it needs to keep a charge to work. If I leave for the day I make sure his monitor wire is looped around his diaper tag so that the monitor doesn't hang too loose. There have been a few times I haven't done this and in the process of picking him up I thump who ever may be next to him. It has a clip that I was, at first, able to clip onto the back of his pants or maybe on the hip. Zoey made sure that didn't last to long. It broke shortly after we had it. Either that or one too many thumps on peoples heads might have played a part in that to. The stickers that came with this monitor weren't as durable as the last ones. After about a day the stick begins to wear off the bottom goo and it smudges. If not on Michael, then on his clothes. It's like washing a t-shirt that had a big sticker on the front of it. Have you ever forgotten to take off a sticker before beginning the wash? >_<

Michael is so mobile now that the leads get pulled off easier. He rolls and they unsnap like a button. At this point I decide whether it will be better for him to pinch him to snap it back or remove the stickers if the blisters around it aren't too bad. If the blisters are too bad then I don't want to keep reattaching things to the open wounds. Sometimes it's a hard decision. I think he's gotten used to the little pinch. That one is a little less invasive to his skin. He is also moving around so much that the bruises have started to set in. The cardiologist warned us about this. Because he is on a blood thinner he will bruise easier. With hard wood floors the odds are raised. Bruises to date - Forehead, Forehead, Hip and Rib. He hasn't even begun to move forwards yet. Everywhere he goes is backwards. It's funny watching Zoey follow him around. She gets upset if he moves too far away from where we put him to play.













There is a constant blinking light on the front of his monitor which tells us four things.

1 - It's monitoring
2 - It's sending a recording
3 - It's lost connection with the phone
4 - Battery needs replaced (which is every 2-3 days)

This morning I woke up and the blue light was flashing which means it lost connection with the phone. Usually if it loses connection the phone is either dead or I've moved the monitor too far from the phone. Right away I scolded myself for not charging his phone and got up to put it on the charger. In my groggy state I noticed that it was already on the charger. It had a message on it that said "Monitoring Complete. Please Return Equipment" - Oh My Goodness! I was so thrilled. That means that the study is over and Michaels chest gets a break. I looked back on an earlier blog post "No Strings Attached" - It's that same feeling all over again. I wanted to cheer and jump and clap but Michael was still asleep. Instead, I slowly gave him a kiss on the forehead and cuddled back into bed - Just in time for Michael to wake up! He's so tricky!









Zoey had spent the night at her grandmas last night so I got some alone time with Michael this morning. It was nice taking a little more time getting myself ready for the day. I was able to run some errands before picking up Zoey at preschool. She was able to go today to play with some friends and did great! She misses them so much. I miss my job at the daycare and I really miss the kids I taught. Seeing some of them today made me realize how fast our kids grow up. They're getting so big. I am so proud of most of them starting Kindergarten this year. It's a big step for them to take but the all did so well. I hope we'll be in the position for me to go back and teach again soon. Michael was built pretty tough but we need to make sure that he keeps getting stronger. I also hope that he'll be getting around more to see the people that have been supporting him, through their thoughts and prayers and special gifts. You all are so wonderful for everything you do. I've been keeping you all in my thoughts and prayers to.

A Great Big Thank you - From Me (Bryttney Phillips) - Mom to a very special Heart Warrior