Never-ending Story

Week three of illnesses that just keep coming. I had started a draft after Michaels last Cardiology appointment. The first sentence started out as "Michael is doing awesome!!". Now.... I'm not able to start this entry the same way.

At our last Cardiology visit I was extremely emotional. After the visit three months ago I was positive that the pressure in Michaels heart had gotten worse and that we were about to talk about his next surgery. On the way there I realized how unprepared I was. I sat and had a nice cry before going into Children's so that I would have less tears for the doctors.

We started with his ECHO and went on with all his vitals. I was surprised that he'd gained weight because he's still so skinny. He's now 22lbs! Almost a pound for every month he's had since his birth.
I was amazed at his other results. The pressure behind his Mitral valve had not gone up but instead had stayed the exact same! What?! I was shocked and thrilled and so happy. I couldn't believe it. The pressure for the last six months has been at a 13. Once this number reaches 15 is when we'll need to talk surgery.

We were referred to the Syanagis clinic again this year. Michael is eligible until the age of 2. We went in a few weeks ago on Monday for his shot (rsv antibodies to help fight the virus). By Friday night we went to Children's emergency room with a 105℉ fever. We were admitted that evening as he needed some extra oxygen and only ended up staying the night. We were released the next day with oxygen for at home use. He's been doing good at home as long as we can keep his congestion down. I had high hopes that we were at the end and now we're dealing with a stomach bug. I'm now washing bedding for the second time to get rid of the throw up. After his bath he fell asleep on me whispering "owie, owie". Poor thing. Hoping this passes before Christmas. I want him to have the energy to play with his presents. I love the holidays. Thank you to everyone for your help this last year. It's been a long and amazing journey. I'm so blessed to have the friends and family that I do. Merry Christmas and God bless us... Everyone.

To Sleep or Not to Sleep

Im laying here at 2 in the morning waiting for our next round of Motrin to kick in.
I'm becoming rather skilled in the art of fighting fevers. As I wait for his fever to break I begin my habit of counting heart beats. I can now lay my palm face down on the left side of his chest and feel his heartbeat clearly enough to get an approximate heart rate. I don't know if this has anything to do with his enlarged atrium or not. He fights me off when trying to feel his pulse any other way.

I can't believe it's been about 6 months since we've had a hospital stay. It starts to feel as if it's all going away until Michael starts feeling under the weather again. In these last 6 months Michael's gotten a virus about once every two months. This is actually relieving to me as it's no longer once a month.

We have our next cardiology visit coming up on the 19th of this month. Anxiety and fear become more prominent the closer these appointments get. Emotions in Jaron and I have been heightened recently as we've realized the reality of surgery within this next year. So much is unknown until we get the results of his exams. We know the pressure behind his valve was worse during his last visit in August. Because of that they wanted to see him back in three months instead of the six month break they were hoping for. If the gradient through his valve reaches closer to 20 then our cardiologist will begin meeting with our surgeons to decide the least risky route to take. At our last visit his gradient was at a 14 so we're hoping it's not too much worse than that now.

Michael has so much energy right now that he's hard to keep up with. He wants to be doing whatever everyone else is and if Zoey has it - he's going to get it. That's what seems to be his mindset anyway. We recently found that he is lactose intolerant so he's been on almond milk for the last few months. It's expensive but it keeps him happy and gives him what he needs. 

We got some really exciting news this last week for one of our other heart warriors and his family. A successful valve replacement without having to do an open chest surgery. This procedure was done through the groin and the recovery time was incredible. I can't believe how strong this kid is. Mason you're amazing and your family is amazing! Way to go! This has given me hope that if Michael holds on long enough that a procedure like this could become more of an option than an open heart surgery. 'Crossing our fingers'

With Halloween already over with I wanted to post some more up to date pictures as I haven't posted any in a while. Here is a look into our Halloween with Michael. His first Trick-or-Treat was a success. After the first house we hit gave him a sucker he decided that was all he needed. We got about ten more houses in before it was too cold and windy to continue. Our Ninja Turtles got their sweet fix and Jaron and I had a late night since Michael was up on a sugar high. Happy late Halloween!!

Living Life

How great is it that we've been able to take advantage of this time with Michael. We've been able to take advantage of the healthy little boy we brought into our family just over a year ago. Not knowing if we'd be able to ever see him this happy and energetic.







Today we are battling fevers and coughs at home. We are also going on week three of congestion. Let me tell you how this usually goes -

Day 1: Congestion/Runny Nose - I freak out and go in to battle the congestion. Like this - Saline spray, bulb sucker, mentholatum on feet w/ socks and percussion therapy on his back.
Day 2: Congestion/Cough - Still battling congestion
Night 2: Michael wakes up with fever at about 9pm, starts grunting and can't breathe, we call an ambulance.



We get admitted and stay for a week with oxygen and deep suctioning. When Michael begins to run a fever his heart starts working over time. His heart rate rises to around 170-180 when he's calm and asleep and its gone up to 220 when he was getting angry and worked up. His normal heart rate is around 100-120. This happens about every two months since Michael came home from the hospital after his surgery. We are blessed to have the insurance that we do that helps so much with the ambulance rides. The two times we went in on our own we ended up in the waiting room for an hour and in the back room for another hour only to be admitted the next morning. The ambulance ride ensures that the cardiac unit will be waiting for us and that they are already aware that Michael is making another appearance.

This time I battled congestion as usual and also used the help of some essential oils that helped delay the fever for about two weeks. He hasn't been grunting or having problems breathing so I'm crossing my fingers that we get through this one without needing the hospital and oxygen.







As long as we keep the fever down we should be good with the rest. So far so good.


This last month has been fun and a struggle at the same time. Before Michael got sick we had his first visit to the zoo and the Denver Aquarium with his Great Grandma that lives out of town. It was great having her with us and we had a great time watching Michael enjoy life. Just after this Jarons car broke down so we are down to one car for the moment which hasn't been too bad. I didn't think we could do it but, seriously, what can't we do? Right? Before Michael got sick we got some bad news that our 5yr old Pit/Lab mix had gotten lymphoma. The vet assured us that even with chemo we'd only be buying him about a year and that year would be quantity of life over quality and she couldn't stress that he'd start getting more uncomfortable and more painful. We came to the decision that we needed to let him go instead of have him struggle through. We were able to love on him for a few more days after that very difficult decision and we've been at peace. Zoey's also made us aware that she'd like to play in the clouds with him. She is a little jealous that he gets to play in the sky and that she doesn't. This is something neither me or Jaron were ready to deal with but we feel stronger for having to experience the pain and emotion that came with it.

               - On a happier note -

Michael also just got his first hair cut. Bye bye Baby Michael and Hello Godzilla! Haha - Just Kidding - Hello to this big kid that I didn't realize was hidden in that hair. These kids make my heart beat faster and harder the more my love grows for them - and the faster they get. <3

My Poor Baby

 

Back at Children's - Sunday morning Michael started running a low fever and had a minor cough so we decided to start treating it with Tylenol and keeping him home so that he wouldn't get any worse. Tuesday his fever spiked to 103, he started shivering then turned purple on his hands and feet and then he passed out. I called the ambulance and on the way to Children's his fever spiked higher to 104.9. Once we were in the ER he slept comfortably on my chest but again started to feel hot. At this point his fever had gone up to 105.3. There was originally talk from the paramedics that he may have had a seizure from the fever at home because we had described the shivering. The doctors and cardiologist at Children's feel confident that it was not a seizure and that this little guy was just really sick. I agree.

We were admitted shortly after we arrived so that they could monitor Michaels rhythm for the night. The next morning lo and behold - I got sick. Jaron came to switch me and it snowballed from there. I got worse - then Michael got worse. He is still having episodes where his fever spikes to 104-105 and then his limbs turn purple and they don't know why. The x-rays show signs of bacterial pneumonia so he is being treated with antibiotic and fluids. He can only drink apple juice and water (and that with the antibiotic you can only imagine how sore is bum is). He's been trying crackers and snacks but he is so exhausted he hasn't stayed awake long enough to finish a whole lot.

Michael is also not too fond of his crib. Because he is so tall we need to put the rail to the top and then bring down the plastic curtain. It's a pretty sad cage - lol. Every time Jaron has tried laying him down he cries so the whole time he's been in Jarons arms in a pretty interesting recliner. They're not too bad if you don't have to stay sitting in them for 48 hrs straight. Jaron can let you know that once you reach 48 hrs you'd rather sit anywhere but there.

We've had some amazing family and friends helping us this week. Jarons mom and brother and sister have gone to relieve him of his duties (if Michael permits) and they've been supplying him lunches. My mom also stayed the night last night so Jaron could sleep at home which was a dream come true for him lol. It was pretty funny watching him lay down. He's still not out of be this morning.

Michaels Cardiologist went by the room with an update. His echo was good and his heart is the same as last month so there is no worry right now about this effecting his heart. His left lung is the thing giving him his troubles. His left lung is what is holding the bacterial pneumonia and is also barely able to pump any air. He is on heated high flow oxygen and doesn't seem to mind until his nose is being wiped. They are expecting to keep him for the next couple days to see if his left lung improves. I have yet to see my baby except over Skype on our phones. He hugs the phone and gives it kisses when he sees my face. I love this little man and cannot wait to be able to hold him and comfort him. I miss my baby so much.

Thank you for everyone's help and support through this week. It is not my favorite time but it's definitely not the worst of times. Heart Hugs and Kisses from you Cardiac baby and Fam. We love you all.

Echos and Updates

I've been meaning to write an update on Michaels last Cardiology update and now I have two updates to write because I took so long to get the first one done. Michaels last Cardiology visit went pretty good for the most part but he refused to sit still for his Echo so they weren't able to get very good pictures of his heart. They even tried giving him the anxiety sedation which doesn't put him to sleep but made him act a little drunk. I felt bad for laughing at him so hard but he really enjoyed it. They got a few of the things they needed so that they were at least able to give us a little information. His heart looks ok, but not great. They are still watching the gradient through his mitral valve (the pressure build up of the blood that is trying to flow through it) and it seems pretty stable as it was the same as last time. They are also keeping an eye on the scar tissue build up from his open heart where they fixed his arch. The scar tissue built up on the inside and is borderline obstructive.  We may have to have that fixed or ballooned again in the future if it becomes a problem. They also decided that he is doing well enough that we can try taking him off his heart meds which is HUGE for me! That is four alarms I get to disable on my phone. He's almost weened off his last one and then in July they'll be sending us a heart monitor to see how he's doing off the meds.

Mike has a few new tricks up his sleeve that have me rolling on the floor. When he gets REALLY upset - he goes into downward facing dog. haha it cracks me up. He's also been climbing up and over everything he can. This includes Zoey and our dining room chairs. He is a little dare devil that loves to get into mischief.

 

He's also getting some pretty big curls. This kid is freaking adorable!

 

The Big One

Happy Birthday to my little heart warrior. It has been an amazing year. He made it through stronger. He has been showing great amounts of strength and energy these last few months. After he conquered the RSV virus he's been showing how tough he is. I was able to drive to Utah for a week to see my sisters and friends and was able to attend a beautiful wedding in Salt Lake. I had the two kids with me and they did surprisingly well on the drive to and from. I was definitely nervous about taking Michael that far away from Children's but also realized that he is doing amazing right now. I need to take advantage of these moments because I know it won't always be this easy. He had his first bloody nose while we were there and the only thing he was actually crying about was that I wouldn't let him down to play. I needed to get the bleeding to stop so that it didn't make a mess and to make sure that his blood thinners wouldn't play a part in excess bleeding. It eventually stopped and because he wanted down so badly we both had a good amount of blood on our clothes. 

Even with all the mess that made, he was able to make a bigger mess with the chocolate cake I made him on his First Birthday!

We had a great time at the park with our family celebrating his life and how far he's been able to carry himself. I made sure that after we sang "Happy Birthday" I sang out "and MANY MORE!"

On the day of his birthday (4-3-2013) he decided it was time to start climbing the stairs, turning around to get off the couch by himself, and I successfully switched him to regular milk. No More Formula!!! YAY!!!! He's still not too fond of sippy cups but I'm working on that as well.

Having this year come around was emotionally overwhelming. Looking back on this past year is hard to do. Knowing all that we've overcome and all that we will yet overcome makes me feel a little stronger and a little more proud of myself. 

We have Michaels next Cardiology follow-up on April 15th. We're praying for a good visit and that everything will look ok. During our last visit they mentioned taking Michael off his medications and putting him on another heart monitor for a month to see how he does while being off of them. We'll see how his echo goes and what they decide to do. I am definitely looking forward to removing the medications from our schedule. Wish us luck!

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!