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

Heart Felt Moments

Beautiful children. We are so blessed with our beautiful children and everyday we get to spend with them. A few weeks ago a little girl went missing from our neighborhood. Jessica Ridgeway. I didn't know her and I lived less than a mile from her house. So did the boy that killed her. I've been hugging my kids so much tighter and giving them more kisses than ever. We have been praying hard for her family and friends and for all those that were involved and are now involved in this case. We've all been faced with trials but the hardest trial is the one her family is now facing. My heart goes out to them and wish that they may have peace of mind knowing now that she is safe and smiling down on them with love at this difficult time.

Your prayers pulled us through our most difficult times. There is no way to say thank you enough. I only hope that I can help others the way everyone else has been helping me. We've received some amazing gifts from some amazing people and I want to give a shout out to them. Thank you so much! You know who you are! We are so thrilled to have so many amazing people following our story and keeping us on a steady path to recovery.

 Michael had a Cardiac update and is doing well after being released from the hospital again. His smile gets bigger every time I see him. He has a brand new tooth and is not quite sure what to do with it. We've been working on eating (it is a messy task because he wants to feed himself). His heart monitor will be off in the next few weeks and he is going to love having it off again. We've had to give him breaks in between changing the leads and stickers on his chest. He's got new battle wounds that heal slowly. They're hard to see and not feel pain for this little guy.  

Our Heart Soldier Marches On!

The Common Cold

We were spending Saturday night at my brothers house. Zoey and Michael both had colds and Michael had been extra fussy the last few hours we were there. Michael was crying and coughing so hard that he began to throw up. They think he might have aspirated some of the throw up or he had a few apnea spells where he stopped breathing for a few minutes. Needless to say I was terrified. I put him in his car seat to take him to urgent care but he started doing it again. All the color left his body and he went limp. My brother quickly called 911 and I went with Michael in an ambulance to Children's Hospital Aurora.

The ambulance driver did an EKG on Michael and printed it out for me to see. He said "you can probably read this better than me now". He might have that right. The EKG looked pretty good which made me feel confident that we were dealing with Michael's cold and not his heart. We soon arrived to the emergency room at Children's. Once inside Michael's nurses came to his rescue. There must have been six or seven people surrounding him all laughing and smiling at this cute little boy. Sometimes I think he just misses his nurses and needs a good dose of attention. He's big enough this time to fit into a hospital gown. It is absolutely adorable on him. Jaron and Michael's uncle Miah showed up shortly after. I'm pretty sure Jaron was driving just as fast as the ambulance. All of Michael's vitals were good although his heart rate was a little elevated. They began trying to get an IV in which if you've read our earlier posts you know it's next to impossible. They again poked all over and finally got one. Michael was so angry and it was so hard to watch him be so upset. We were told shortly after that they were going to admit him and keep him overnight for observation. I had a sinus flare up from freaking out and because of my cold symptoms I wasn't allowed in the unit with Michael. Jaron went up with him and began the stay on the 9th floor in the CPCU.

The Champ is back. Michael is being a little trooper. He is so strong. The nurses have to deep suction him with a suction tube that goes down his nose. His congestion and cough are so bad that they are also testing him for Pertussis (Whooping Cough). Pertussis in infants and baby's under 6 months can be fatal. Michael isn't showing severe signs of this and we are still waiting for the results. They are going to keep him until at least Tuesday morning. Jaron is working from the hospital and I am staying home sick with Zoey. We are finally starting to feel better but there is no chance I'm bringing any sicknesses into that hospital. Those kids are going through enough.

Thank you again to everyone who has been helping us and keeping us in your prayers. Hopefully Michael will be home again soon. 

Hurdle Jumping

I think I've finally gotten a hang of this blog thing. I changed it up a bit and made it a little bit more fun for me. You'd think after almost 100 posts I'd be a pro but I still feel like such an amateur.

We've been super busy lately. I feel like my head has exploded and now I'm the one in charge of picking up the pieces. It's hard to find your head when you don't have one. I have so much on my mind right now that I'm going to try to make this post as organized as possible. With that being said, lets start at the beginning.

We have so many people following our story. Our journey that is not only Baby Michaels life, but Zoey's, Jaron's and mine as well. This journey is not a short one, and it's in no way easy. I can tell you that it is so, So worth it. Is it horrible that I question it sometimes? The what ifs? I don't like looking back at what we've been through. I've tried a couple times reading some of the earlier posts and I can't get through the first paragraph on any of them. Every time I go to select a picture to add to my new posts I see this picture of Michael. This picture is so hard for me to see. I've been trying to work up the nerve to post a then and now. To show people what this baby has conquered. He's changed so much and has become so much stronger. We all have. I never in my life thought that I would be sitting in this spot telling the world of the everyday hurdles that I jump over. Sometimes the hurdles are taller and catch me totally unprepared, but I get up, dust off, and start running again.

A couple of weeks ago our clothes dryer went out. Our family has been wonderful and has worked with us on getting our laundry done. It brought me closer to my parents. I was able to spend that time enjoying my parents playing with their grandchildren. I also got the opportunity to "Google" how to clean a washing machine after finding a diaper had been in the previous load. Not fun. We finally got enough money together to find one on craigslist and I am in laundry heaven! I've done about ten loads in two days. Hurdle one - Cleared

About a week ago our microwave decided that if the clothes dryer was going, then it was going to. It's hard not having the convenience of an instantly warm meal. Warming up leftovers on the stove is not really my forte (they burn quickly). I'm getting used to it though and don't see us getting a new one soon so I've sucked it up and decided to pretend it's not there. So far so good. Hurdle two - Cleared, but messy

And now, The kids are sick. They've picked up the cold going around. There was no way to hide from it. Keeping them locked in the house is just cruel, and believe me, Zoey lets me know when we've been inside too long. Michael is losing his voice and Zoey is coughing and sneezing. This morning it was worse so I decided to call the nurses line which of course led me to Kaisers waiting room. Ears, throat and lungs are clear on both. We are just working on the congestion which leads us to continue on what we were already doing. Hurdle three - Mid jump.




I've become a photobucket junkie. For those of you that haven't been on that site it's awesome!! It makes all my pictures look awesome! Well - to me. Last week I was able to take my youngest brother up to Chautauqua in Boulder. I got some great pictures and it was so much fun getting out of the house. I didn't even have the kids with me! That is still a rare occasion.

Michael has been eating his rice cereal once a day and he loves it! Starting tomorrow we go to two times a day. I'm hoping this helps with his reflux. I can't tell you how important it is to have a working washer and dryer when you have a baby with reflux. We also get to see his Physical Therapist tomorrow and he loves getting that play time with her. We get to show her his new trick. He throws his hands in the air when he hears "Champion!". It's hilarious!

He is my champion. I am so proud of my family. We have overcome so many obstacles and run in to new ones every day. A big thanks to everyone that has given us a boost over these hurdles. We are so blessed to have you in our lives. We love you <3