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

The Straight and Narrow

Michael is staying strong and holding on tight to his "balance beam". We have had a week of check ups and appointments that have been great. We met with Michaels PT and OT on Tuesday. They don't have any concerns with him right now and just want to continue monitoring him on a regular basis. His OT left him some new toys to play with that should help with his teething. This boy chews on everything! He is going to be the kid that puts everything in his mouth. I'll need to keep a closer eye on him than I did with Zoey. She never got in to anything. Michael likes the new toys but Zoey Loves the new toys. I just found three of them in her room. She'll be heart broken when it's time to give them back. We are also teaching him to play peak-a-boo. His OT was having a blast!

  Trying to get these two kiddos out of the house while they are both clean and before Michael soaks his outfit in spit up is a mission. Today we were able to complete this mission and arrived at Childrens in Aurora. We had a check up with Michaels Cardiologist. Walking through those doors brings back so many emotions. While sitting in the waiting room I watched as a nurse came in to update a mother waiting on her daughter to get out of surgery. The nurse said everything went well and that she would be able to see her daughter soon. It's so hard to watch these parents sit in the exact same place we sat just three short months ago. I came out of a very happy check up and still walked down the hall crying.

Michael is doing so well that they are going to wait for another three months to have his next follow up. At that time they will take him off his aspirin and his lasix. His Cardiologist also mentioned that whether Michael is able to make it another 6 months or another 6 years before his next surgery is still a mystery. If he is able to make it to 6 years without needing the surgery then they will probably decide to go through with it at that time. Michaels risks will be much lower than they are now. The gradient behind his Mitral valve is looking better than last month but we still need to keep a close eye on the right side of his heart and his lungs to make sure the pressure doesn't begin to build up again. There is still some leakage through the valve which means that another Valvular Plasty (ballooning the valve open) is pretty much out of the question. Too much leakage could make him really sick. I was advised that Michael is a candidate for a monthly RSV inoculation which is called Synagis. I'll be taking him into his pediatrician once a month for this to keep his risk of catching this virus low. They also recommended getting his flu shot once he turns 6 months which will be on Oct 3rd. After the appointment his Cardiologist asked if he could go show him off. Michael was so happy to be seen that he was grinning from ear to ear. I was able to see his arrhythmia specialists and even the woman we met that gave us our walk through of Childrens while I was still pregnant. It was great watching Michael spread so much cheer.

I have such an amazing family. These two kids have been threw a lot. Zoey still doesn't understand a lot of it but I have to say she is just as strong as Michael. God has blessed me with two little soldiers.

Count Your Blessings

Change

There has been nothing but change lately. It's hard for me sometimes because some of the changes aren't the things that I would expect. If it's unexpected then how do you prepare? I feel unprepared most days. Unprepared for the day and what it holds. The day may hold something wonderful, waiting to announce itself. It may also hold something that brings out a lot of thought and emotion. No matter what the day may hold I hold something better. I hold my head up high. Sometimes I hold my head too high and I am stuck in the clouds all day. No matter what the change I know that I am being watched over and blessed. Thoroughly Blessed. I thank God every day for everything I have. If you could be in my head while I say my prayers then you might actually hear me say thank you for the silverware. I thank him for everything that may someday not be there. Everything most people (including myself) may take for granted.

Most all of our blessings lately have been coming from the people surrounding us. I feel that God has worked through so many people, bringing them to us when we need them most. I don't think I've ever felt so needy in my entire life. Not that it's a bad thing. It's alright to have needs. With so many on my list what do I cross off first. I feel like I need to make a new list of needs today. My family and my friends. Those are my needs. With them by my side I can accomplish absolutely anything. I thank God daily for my family and friends but I want them to know personally just how thankful I am for them. It's hard to show sometimes because most people know I can cry at the drop of a hat, so instead I hold it in. I thank them in my head and then again in my prayers. They have given us so much hope and so much faith.



Today I am thankful that I woke up with my children by my side and that I didn't need to plan, like before, for my daily trip up to Children's Hospital. I got to see them together watching a movie on the couch. I want them to be as close as I am to my brothers and sisters. I am so excited to watch them grow and hope that one day they will think of themselves as best friends the same way I think of my brothers and sisters being my best friends. I love you guys - words can't express how much.

The Wubbanub

The Wubbanub that saved our lives! Michael had a complete melt down tonight. And while Michael was doing that, Zoey decided to have a complete melt down. For all of you that know, Zoey has been glued to her paci since two days ago. Everyone talks about the "Easy Button", well, that was mine. It was nice seeing her so easily satisfied. If she ever reads this blog then she will then find out that this is what I'm doing when she asks for her paci;

Zoey "Where is my paci"

Me "I don't know. Where did you put it?"

Zoey "I don't know. It's hiding from me"

Me "Oh man! Silly Paci"

* End of Conversation *

How nice, right? Until that moment. That moment that was tonight. Poor Jaron was alone with them for almost an hour. By the time I arrived home he handed me the baby and escaped to his office. For this reason I now know why the Ostrich buries its head, it's to muffle the sound around him. 

There has been a lot going on lately. We've been trying to spend more time with Zoey, doing the things that she enjoys. We were invited up to the Runway Grill to watch the planes practice for the airshow the next day. It was great. Zoey loved it. Michael didn't appreciate the fly by's the way we did. 

We were also invited to see some horses. I was so excited to see Zoey loving on these horses. Michael was thrilled! Zoey, not so much.










I've been taking some random pictures lately so I thought this would be a good time to post them. I don't take pictures to just hide them in the dark. At least I hope that's not what they're doing.

Michaels Morning Cocktail

Head - Shoulders - Knees and - Hey! Where'd your toes go??

Eating Grandma for dinner. I mean, Eating at Grandmas FOR dinner. 

I hope you enjoyed! Thank you again so much for all those following our story. We miss our friends from the daycare so much and can't wait to have Zoey back with her friends. We are still being shown so much kindness from friends and family. You will all be in our hearts forever.