An overdue update..

Hello all, it's been a couple years since we have posted. This is a good thing. Just a quick update on the last couple years... After we got through the initial terrifying news of having a baby with a heart disease, we had the baby, then we had a really rough couple months with his first surgery and labs, etc.. But as you can see from our lack of posts; once he was like 2-3 years old, he stopped getting sick  all the time, we stopped going to the hospital every other week, and we stopped posting on this blog. We just enjoyed having our son around as a normal kid.

In 2017 he started kind of dragging a bit, he wasn't keeping up with his friends, he was getting wiped out and tired every day.. We had to go through another round of surgery.  This time it was quite a bit different. We had a little kid that could talk to us and could tell us he was afraid or hurt. This was pretty hard. Even though we were really struggling with this internally, we could not let Michael  know that.  We wanted to be there for him, we wanted to make this an exciting thing for him; he was getting his Robot Heart! He could run faster, jump higher, he was going to be just like Iron Man.. No more deformed valve holding him back. 

In October 2017 he had his mitral valve replaced. He handled it like a true champion. He was brave and excited. It is incredible how optimistic and fun he still was during his first couple weeks in the hospital. We took lots of pics and videos, he was in the hospital for like 2 weeks. The surgery went well, and he healed up pretty quickly. Within a couple weeks he was doing normal stuff again.. for the last 2 years he has been an animal! Riding his bike, riding scooters, roller skating, swimming.. He even jumped on one of the neighbors motorcycles and took off down the street by himself - that was terrifying!  

There are things they don't really talk to you about until after you get the valve replacement. One of those things is the meds.. Mike has to take a blood thinner EVERY night before bed, and he has to get his blood checked multiple times a month to make sure his INR levels are good. This is pretty crappy for a 5 year old.. He has to go get poked at least once a week. He has been a champion for the last two years.. never cries, just goes and does his business. He is so amazing. A kindergarten age kid should not have to deal with crap like this, but he handles it and is happy to live his life.  We ended up holding him back 1 year and he did kindergarten twice. We didn't know how long the healing would be, we were worried about him getting hurt, etc..  There is no guide to follow when you have a kid with a heart condition, you just have to do your best and do what you are comfortable with.  Bryt and I have been very fortunate to have each other. We both take turns being the 'stable' one... if that is even really a thing...

Anyways.. Mike has been a champ, we ended up having 2 more babies after him, Emma and Maisy. and then we moved to Utah.  It has been a great move, but also challenging. We had to find a new cardiologist, new doctors, new lab for blood work, new emergency contacts, new Insurance.  Lots of 'adulting,' but we are making it work. We miss our old cardiology unit in Colorado. The hospital there was incredible, the cardiology wing was very comforting,.. maybe just because had spent so much time there. 

So with that long update out of the way... on to current events: Tonight Mike was hauled off in an ambulance again. He has been complaining about chest pain for a couple days and woke up tonight just looking miserable and in a lot of pain. We don't typically like doing the ambulance thing, but tonight it just looked like he was really hurting.. it is hard to handle because there is not really anything we can do about it. We had taken him to ER like 3 days ago for similar symptoms but they did not find anything really wrong with him and chalked it up to a belly flop at the neighborhood pool. We don't want to overreact, but we also don't want to watch him have a heart attack or something... so we usually just go with the ambulance route and play it safe. It is hard to see your kid go off in an ambulance, but after a couple times, you just learn to stay calm and trust the medical professionals.   You also have to learn to just trust your gut, or your instincts, or the spirit, or whatever you call it.   It is really hard to stay calm, but you cannot let your sick kid see you freak out and start losing it. You have to stay sharp in the moment. Once he is taken care of you can go cry yourself to sleep or whatever.  I am still just trying to hold it together until we know what is wrong. Bryt is in the ambulance on her way to Salt Lake.  

Is This For REALS?

So... You haven't heard from us for a while. It's unbelievable that we've had the year that we've had. I can't explain how it feels.

Michael has been hospitalized only ONCE since last March (2014). He of course had RSV and was put on oxygen to come home with but it was a very short stay. He was doing so much better after a couple weeks that we thought we'd passed the hurdle. He'd had a runny nose still (because those linger for a lifetime) and we'd put him to bed like normal. He woke around midnight barely crying and barely breathing. His oxygen was low but his heart rate was even lower. Never knowing if his heart is going to make it to his next appointment we will always be on edge. We called an ambulance and rushed to Children's in Aurora. By the time we arrived his oxygen and heart rate were stable and there was nothing to show as to what had just happened at home. After being monitored for a few hours we were sent home and the next morning went on to be completely normal. Michael's update with his cardiologist is on the 16th of this month. It's been 6 months since his last update and I know his doctor will be more than impressed with his status.

Michael has recently shown a lot of interest in baseball. He's impressively coordinated with a ball and bat. Come April 3rd our little man will be 3 years old. I get so excited to say that. Not just because he is meeting all of his milestones and hasn't been delayed by his heart condition but because we made it. He made it. 3 years we weren't sure we were going to get. This little guy is my hero. He's shown strengths that I didn't realize were possible. I can't wait to give news on his updates. I pray that everyone healthy and doing well. Thank you to everyone for your support and prayers.


                                                              The Phillips

Separation

To be separated from your sick child and not be able to care for him/her is something I am all too familiar with. This is not the first time I've been sick while Michael is in the hospital but I am definitely hoping that it's the last. So much has happened these last couple weeks I'm going to try and keep it all in order.

We had Michaels follow up appointment last Monday. His Cardiologist was feeling positive that there are no changes since his last visit. Nothing is looking better but also nothing has gotten worse so we are happy with that news. He still had some edema in his lungs but it wasn't anything new that they were worried about and it didn't look like pneumonia to them.













Every month during the flu season we take him in for his RSV Synagis shot and every month we end up in the hospital from something he caught at the clinic while getting that shot. January 28th I decided not to take him in for the shot because I didn't want him to get sick again. Well it worked. We went through the whole month of February without any ER or Hospital visits. It was Fantastic!! We also got through most of March. After telling the Cardiologist about missing his shots and the progress we had he made me aware of how crucial it is that he has them and he was not very happy with me for missing them. Well.. He's not in the hospital with RSV but he is in the hospital.


Friday we took him in with Fever and cough. The Xray showed the same edema from Mondays apt so they still weren't concerned about pneumonia. We went home that night and by the next night his Fever spiked again. With Tylenol his fever spiked again and his heart rate was in the 190's which worried me. We took him in AGAIN ( I say that too much ) and they decided to admit him and got us in a room pretty quick. It's the first time we weren't in a Cardiac room and just in a general health unit. He'd been on oxygen since arriving and his fever came down after they gave him the correct dose of ibuprofen (turns out I didn't up his dose since he'd started growing). So that's why I couldn't keep his fever down. We slept the night Saturday night or Sunday night.. all my nights are getting all mixed up. I'm still not all the way better so I'm going to get a bit mixed up here and hopefully this doesn't come off by me rambling. Jaron took off Monday and Tuesday to stay with Mike but after I came home Monday night to be with Zoey and went to the doctor for myself. I didn't realize how bad I was feeling because I was so worried about Mike.

Tuesday morning I made my Dr apt and the Dr hooked me up to an IV right away and got some antibiotics in my system and also a pain killer to kick the migraine I'd picked up on top of the pneumonia that was about to kick me with full force. I've been in bed since with a killer cough. Some nights with uncontrollable chills that are followed by a high fever. I've been wearing this really cool Mickey Mouse face mask when I get up for meds or water and have been washing my hands so much that they've started to crack. Today I am feeling so much better but the stupid cough is still there. Emotions? Anger, sadness, guilt, totally pissed off! and then peace. Somehow it's all been followed by peace. Peace of mind. A calmness knowing that he's ok and that I'm ok. He knows I love him even though I can't be there to hold him after he gets deep suctioned for the twentieth time. Or that I can't be his pillow when his fever spikes and he has no energy to fight. Everything his mom was supposed to be there for has been replaced with the most wonderful people in the world. If he can't have his mom then he can have Jarons, and he can have mine. I can't say or express in anyway how grateful I am to have these two women in my life. They've given their time to us and have been there for Michael when I haven't been able to. I can't tell you how hard it is to have to take that step back and not be able to make that choice on my own. I can tell you that if I did have to make that choice on my own that I hope it would turn out the same way it did this week. As hard as it's been for us we've been so thoroughly taken care of by family and friends. Whether it be your time, your thoughts or your prayers... or your food, Thank you. Thank you so so much.

Couch Arrest

MIA - I feel like I've been fighting the urge to blog. Like I'm in denial about my situation being what it is. Day three. I'm so glad that my mom has been our only house guest these last few days. Michaels congestion never cleared up after the RSV diagnosis but he did get a little better before Christmas. We were able to see the family and enjoy the holidays before things got worse again.






Michael was doing a little better but still hadn't improved the way I thought he should have so I scheduled him an apt for the 28th. He had his next Synagis shot that morning and everything was pretty good other than his congestion. We then went to his pediatrician to see if he could get caught up on any of the shots he's been so behind on. His oxygen at that point was only at 84. They were going to send us to get X-rays because his lungs still sounded pretty cruddy but since his oxygen was so low they ended up sending us to the hospital instead. We were able to drive ourselves which was good and bad. We ended up waiting in the ER for two hours before being taken back to see a Dr. Michael was feeling better in the waiting room and wanted to play so bad with the other kids. In my head I was screaming because it was so packed with sick people. I didn't want him to get worse but I also felt horrible not letting him down to play. Jaron to the rescue! He got a little red wagon and set up his laptop with a movie for Mike. Yay for containment! Once we saw the Dr his oxygen was back up and he'd fallen asleep. We went back for X-rays and this is the first time ever that he's slept through them. He was diagnosed with pneumonia and we were sent home with antibiotic to fight it off. WOW! This kid catches everything.

Again, he was doing better other than some congestion so back to the pediatrician we went. I've been hoping to get him caught up on his vaccines. He's now 21 months old and still hadn't gotten his 12 month vaccines because he's been so sick. He got 6 shots that day. The champ is back! He cried for a moment but then just wanted to play. The hardest part of getting him his shots was getting his band-aids off. Of course now, a week after his shots he's been running a 103.5 fever for the past three days. It only drops when he's doubled up on Tylenol and Ibuprofen at the same time. If I let them wear off at all his fever just jumps back up. Getting the dishes done or the floor swept is an accomplishment when he's sick. Putting him down isn't an option. He works himself up so bad that he starts coughing and then throws up. I'd rather it not get to that point. So here we are. Mike asleep on my chest. Me laying on the couch, Zoey making messes with her "experiments" (She's so awesome) and My Little Ponies on in the background. Home sweet home. Doctoring up my guy in the comfort of my own home is a prize in itself. I'm so thankful that I can fight off this fever at home. A blessing in disguise.


With blessings surrounding us daily we forget the biggest blessings we've been given. The strength we've found in ourselves and the happiness we have with our kids. Whether healthy or sick, we still have our kids to love and hold and play with. I'm so thankful to have been blessed with these two amazing spirits that challenge and change me daily (for the better of course!)

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