Ready or Not

Let's try this again. Going on day 4 at home. It's taking me a little bit longer to get into the swing of things. I am on an extreme schedule between Michaels feedings and his meds. I'm so excited that this round of medications is giving him a break to be a normal baby. He's so happy and he's eating a lot better by bottle now. I'm not having to tube feed him as much each time.

He was feeling much better and was so interactive at the hospital this time. They had an IV on his hand and there was a piece sticking out that he liked to suck on. I've been noticing him trying to find his thumb at home now and it's just not the same. *sad face*

Friday morning came around and they were getting ready to send us home again. Michael made the nurse and me proud by finishing his whole bottle at 6am. Then he decided he needed to poop. He was trying so hard that he threw up all his milk AND his tube. Quickest reaction I ever had. I hooked the little piece by his nose and pulled the whole thing through. Just thinking about it makes me want to shake. It was so gross!
This is how much he likes that feeding tube.





All of his nurses decided He misses them at home and that's why he needed to keep coming back. I had to admit that I missed them to. They make everything look so easy. I hope I can start to make things look as easy as they do.

I remember when my grandpa was in the hospital. A frail 80 year old man barely walking. He always had enough energy to tease the nurses. Michael definitely follows close to him. I'm sure my grandpa taught him all he knows.



The volunteers at Children's brought some toys in for the kids to play with. Michael got a pretty rad one for his crib. He would barely take his eyes off it. Lights, Sounds, Movement. He was in heaven! It was so much fun watching him get so excited when I'd start it up.

I got some fun pictures of him during his EKG. Dr Octavius doesn't have anything on Michael!

The rest of the family is finally getting the opportunity to meet Michael. And he gets to meet all of his cousins. I am thrilled that he is so close in age to his cousins like Zoey. It is so much fun watching Zoey run around with her cousins. Her aunt and grandma had a fairy tea party this weekend and it was so much fun! I picked out a cute outfit for her to wear over but her fashion won over mine. She went in MY tie dye shirt. It was awesome. And then after I called her awesome she said "No, I'm Superman!" Haha I love this girl!

Michael had a pretty chill time over at grandmas and his heart monitor only went off once while we were there. I had a follow up apt with his EP team at Children's today and the doctor told me he was the one reviewing the strips that had been sent and confirmed that the monitor was catching regular 'Michael' rhythm. They said everything looks and sounds great and he's finally getting the opportunity to relax. At home there is minimal poking and prodding and even when there is it usually is coming from Zoe. I need to give him a bath today since he's starting to smell like Zoey spit from all her kisses. She loves her baby brother so much.

 ~ And he's pretty fond of her to ~

Got rhythm

It's been just over a week since our last post. Michael has been doing really good the last couple days. We were discharged on Tuesday afternoon. We left around 1:00pm and got home around 2:00pm. The ride home was ok. He started fussing so Bryt climbed in back with him. This time we got sent home with a Heart monitor and the feeding tube. The Heart monitor is a little box as big as a cassette tape, it automatically detects when he is having arrhythmia and if he is it records it. It can store up to four recordings, then we have to call from a land line and send them to the doc.  It kind of stinks because it doesn't actually show you what it's recording, all it shows you is whether it has recordings or not. So if he is having arrhythmia, which he often does, we can't tell if it's his 'normal' rhythm or arrhythmia we should be concerned with.

That night we were at home eating dinner with some family. Michael started throwing a really big fit, something I haven't seen him do very often, he is usually a pretty happy guy. He was screaming and crying and we couldn't comfort him. We finally got him calmed down and resting. It wasn't until about 10:00pm we noticed that his heart monitor had some recordings on it. We both felt ok with it and neither of us really freaked out.  When it is sending, it sounds like a fax machine, you can kind of hear the rhythm, but its a really high pitched annoying fax machine sound. Each recording is about two minutes long, and he had three recordings. So we had to listen to this really annoying sound for six minutes. We tried calling from our cell phones but the recording wouldn't go through. It had to be sent from a land line, which we have never had. Bryt felt like she really needed to send it so she drove over to her parents house to use their phone. The recording went through and everything seemed ok. Bryt got home and we started getting the midnight feed ready.

Around 12:30am we got a call from the cardiologist. Michael was having some pretty bad arrhythmia and needed to come back in. We are guessing it was when he was throwing that big fit, we don't know if thats what started the arrhythmia, or if he felt it coming on and didnt like it.  Bryt packed up his stuff and brought him back in. We were both still doing pretty good, this was just a minor set back.

Good Rhythm

The next day was Wednesday, I stayed home from work with Zo and we went to the hospital to see Michael. he was starting to look pale again and slept pretty much the whole day. His rhythm was all over the place and did not look very good. The docs said they were going to toggle his meds around and see if that helped. They told us that they wanted to monitor him for a week or two and make sure nothing else was going to happen. He pretty much slept the entire day and nothing really happened. On Thursday, he slept for most the day and nothing really happened. On friday the docs decided he wasn't really doing much so they were going to send us home. They had changed his meds around and taken us off the digoxin(one of the arrhythmia meds). They wanted to make sure we could handle it if anything sever started to happen so they ordered us an Automated external defibrillator. No big deal, if he starts having arrhythmia we just strap these pads to him and shock the crap out of him... um... No thank you! Neither of us want to shock him, if we need to go home with something like that, why are we going home at all?

Friday afternoon came, he was doing pretty good and we were sent home. Right after we got home someone brought us the defibrillator. We got trained on how to use it, but neither of us are ever planning on touching it. Michael did really good for rest of the day, and then right when we were climbing into bed his heart monitor started going off. It was about 10:00pm again. We had ordered a Land line that morning, but it was not hooked up yet so I drove into work to send the recording. I sent it in and went home. We stayed up waiting to hear from our cardiologist. 20 minutes later it started going off again, so back to work i went. I sent it in and went back home. This was a pretty rough night, I had to keep leaving the house, Michael was not doing too good with the arrhythmia, Zoey was freaking out because she wanted attention. Bryt and I were both exhausted. It was one of those moments where I just wanted to give up and say eff it. I said a prayer which helped calm everything down and then we all went to bed.

Saturday morning came and there were two more recordings on his monitor. I went back to work to send it in. I was starting to lose my patience so I called comcast and had a 'nice' chat with them. They scheduled our land line to be hooked up the next morning at 7:30am. We just had to make it one more day without a phone.

We decided we go spend the day with Bryttney's parents. They have a phone and AC, we could go relax over there and be prepared to send in a recording. We had a pretty good day there and only had to send in one or two recordings. Around 2:00pm Michael had a nice big BM. I know it's weird to get excited about your kid pooping, but we have been giving him suppositories every other day to make him poop. This time he did it all on his own, and it wasn't as hard as it had been the last couple weeks. We stayed at grandpas house until about 11:00pm. Still no recordings at 11 so we decided to go home. Sunday came and still no recordings, we took him to church and he did great.

It's Monday morning now and he still hasn't had any recordings. He hasn't had any arrhythmia since his big poo on Saturday. We are thinking it was the digoxin that was causing some of the issues, it says right on it that it can cause constipation. We have also been warned about anti-arrhythmic medications causing arrhythmia. We have follow up with rhythm specialist today, so maybe she'll have some more insight. Overall he is doing really good, he weighs about 10.5 lbs now

Staying Strong

Michael is doing great. He has been weening off of his oxygen all week and decided he was done with it this morning.  He took it off early this morning and was doing great so the nurses just left it off. It's so awesome to see him again! He looks so much better without all those plastic tubes everywhere. He still has his feeding tube in, but he is doing great with his bottles.  He got switched back to oral Lasix and started taking bottles again this morning.  He seems to be really enjoying the new anatomy of his heart, he was able to drink his entire bottle this morning. We have only had to use the tube for a couple ml at each feed. He is doing really good with everything so far, he is such a strong little man.
I made this picture for him last night. It is Lotsa Heart, he is the strongest of all the carebear cousins. I thought it was very fitting for him. He has powered through so much already, and he always manages to make us smile. He is such a cute little stinker, I can't wait to play with him.
I feel so blessed to have such an amazing team of doctors and nurses so close to us.  It is so awesome to see him go from bad to good in such a short amount of time. I know the lord had a hand in all of this, and it has been incredible to see all of our blessings unfold. The people that surround us have been so wonderful and supportive.  Zoey is so lucky to have such great aunts and uncles. She has been a little soldier through all of this. She has had a lot of time away from home, and a lot of time away from mom and dad.  We both feel guilty dropping her off  every time, but we know she is in good hands and she loves playing with her cousins. We are so blessed to have them so close. Thank you again to all of our family helping out with her. She loves coming to the hospital but it is still pretty boring for an adventurous two year old. Soon she'll be home with her bro! Soon!

Just Peachy

Michael is improving everyday. They are still weening him off of his air flow to make sure that his respiration is good. He also got a blood transfusion yesterday because of all the tests they've been running on his. He hasn't been able to replenish what they've taken. He got another echo on his heart today and it showed that he is showing great improvement since before the procedure. It feels like a dream having him look so well. He has the peachy skin that every baby should have. His color is great and he's playing and smiling again and cooing more than he was before.

They are moving him back up to the 9th floor tomorrow morning which is a sure sign of how good he is doing. From there they will continue monitoring him until they decide he's well enough to come home. It makes me nervous and excited at the same time.

They haven't begun to feed him by mouth yet. They started feeding him through his NG tube again yesterday and should be able to try the bottles tomorrow. He's still a little achy from his procedure and gets a little fussy around the time the tylenol wears off. The marks that were left from his procedure are very small and healing quickly but I won't take pictures because they're too close to 'little Michael'.

Grandma got to visit him this morning and gave me and Zoey a ride up to the hospital. He was wide awake and ready to play. Zoey is so wonderful around Michael and ready to load him up with kisses. She didn't fall asleep until just before Jaron got there and then him and Michael took a nap to. I'm so excited for everyone to be able to sleep at home all together under the same roof.

We'll head back into the hospital tomorrow morning and hang out with the baby. I can't wait to see his smiling face. He better be prepared for some epic cuddles. His mommy loves him so much!

A lullaby that fits so wonderfully for Michael. I cry every time I hear it. "Godspeed" by the Dixie Chicks. LOVE IT! Give it a listen ~ Sweet Dreams Little Man ~

Giddy Relief

It felt like the calm before the storm. Waiting outside for Michael again. This procedure was not as invasive as his first surgery. I don't know if anyone slept well last night. I was able to hold him and cuddle him for hours last night. I decided to fall asleep with him in my arms but felt a twinge of guilt because I knew he'd get a better nights sleep in his crib. I changed my mind and laid him down so he could get the rest he needed before his big day.  

I couldn't fall asleep and even after I did I kept waking up hoping that maybe some time had passed. It was finally 6:30 this morning that I woke up and knew he'd be going in for his procedure soon so I wanted to hold him for as long as I could before they rolled his bed out. I went and lifted him up realizing that they had him on an IV drip  that attached to the other side of his bed and the cord wouldn't reach to the chair. NO! I broke down and cried of course. Not being able to hold my little man before his procedure. They would have had to move a lot of things around for me to be able to hold him so instead I stood by his bed and cradled him in my arms right there. I kissed his head and sang him a song and the doctors started coming in to talk everything over with us. It happens so quick.

After everyone was on the same page and all our questions were answered they began to get him ready for his short ride down the hall. The nurse was quick in prepping him to go so I was able to hold him for a few minutes before they came to get him. He was wide awake and looking around and smiling. It was so great. I knew he was going to be alright but that didn't make the waiting any less difficult. I was so excited to see him awake and colorful and healthy. I still am! He's letting the anesthesia wear on as long as he can. It's already 8pm and he's just now starting to wiggle around. 

They keep the breathing tube in until he's fully awake to make sure he's going to breathe on his own before they remove it. They just have it on room air with a little pressure which is they're last step before removing it. He doesn't like it at all. He tries to cry out but I can't hear him. I'm keeping a close eye on him so that when he moves I can go to him and pat him to make him calm again. He's doing so good. 

We had some of our family waiting with us at the hospital to make waiting a little easier on us. He went in at 7:30 this morning and we weren't able to see him until about 2 this afternoon. The doctor that worked on Michael in the CATH lab came in to check on things and you could see him glowing. I've never seen a doctor so proud of his accomplishment. This procedure had to have been a big one because everyone was congratulating him and patting him on the back. It was great to see his doctors so happy and successful. The prayers that were said in their behalf worked miracles. God truly guided their hands and inspired them in their actions. The doctor doing the procedure wasn't sure if he should go up one last size for the last balloon but he felt impressed that he should do so and it was wonderful that he did. The back up pressure behind the valve has been as high as 13 and 14 which is really high. When he's been relaxed it's been as low as 7 and 8. After this procedure the pressure is all the way down to a 4! Outstanding!! I feel absolutely giddy!

This unfortunately doesn't mean that he won't need another surgery because he will. This just buys us the time he needs before he has to go in. The valve still needs to be replaced but the older he gets and the more weight he gains lowers the risk of that operation by a lot. This will allow his body to grow without the fluid backing up to his lungs and in turn harming them. We look forward to see him gaining weight and growing. This little guy is meant for some big things. Look Out World!

Thank you everyone so much in for being with us through this time and helping us push forward and keeping optimistic. Our prayers for Michael have all been heard and answered so many times over. This last Sunday my family and friends fasted for him and this procedure. Next Sunday we will be fasting for our gratitude and Michaels quick recovery. We welcome those that would like to join in and thank you again. 

update

Michael is doing much better today than he was yesterday. He is still a little pale, but looks way better than he did. He is much more comfortable and easier to calm down. Bryt and I actually got a little bit of sleep.  He has been on the CPAP machine all night and has done very well. They were not able to get a second IV in him so today he is getting a PICC line. We are not thrilled about it, but hopefully it will cut down on the amount of pokes he  gets. The cath lab is still scheduled for tomorrow. We still have pretty high hopes for it.

Back on CPAP

I haven't written an entry in quite a while. It's hard to get your thoughts out when your emotions seem non-existent. I have been having a pretty rough time the last couple weeks. I checked out and didn't want to deal with any of this anymore. People would ask how he was doing, and I would just say "fine, he's still in the hospital... but he is doing ok."  Luckily for me, that was true for a little bit. He obviously wasn't doing great since he is still in the hospital, but he was pretty stable. He wasn't really doing much but sleeping, eating and pooping. I kind of took it for granted and skipped a couple visits. This last week has been nothing but scary though. Last week he started getting pretty pale and having a hard time breathing. I immediately felt guilty and stayed the night with him. I have made it a point to be here and hold him and love on him every day since. It gets exhausting going and back and forth, and working, but  I want to be here for him every day. I know the nurses are great, but they don't love him the way Bryttney and I do. It makes a difference when we are there. Michael knows we are there, and we know when he needs something.
 We have had to discuss surgeries and transplants again. I am not to fond of either of them, but at this point I am willing to do anything. I hate seeing him so uncomfortable. I have no idea what he is going through, but watching it makes me cry a little. He has been so strong, it's incredible what he is capable of. Today has been very hard for me. We walked in this morning expecting to see our little guy smiling away, but when we got there he was extremely pale and very whiny. Both of us could tell something was wrong with him. his numbers look ok, but I don't think I have ever seen him this pale or this fussy before. It was very stressful trying to comfort him because Zoey really wanted to hold him and was getting  a little jealous. I ended up taking her over to a family get together while Bryt stayed with Michael.  It's so nice to see my our family. They are so incredible and always manage to cheer me up. Even if I'm having a really hard day like today, they are always there to pick me up and put a smile on my face. I don't think I could have married into a better family.
Bryt and I are sleeping at the hospital again tonight. Michael has been has been in and out of fits all day. His Heart rate is higher than normal and he is breathing really fast. Bryttney has been trying to comfort him all day, but it does not seem to be helping. He is just very uncomfortable. They have been giving him extra Lasix to help with the fluid in his lungs, but that does not seem to be working. After a long and exhausting day in the CPCU they decided to move him back down to the CICU. Once he got there they put him on the CPAP machine and took some labs. He didn't like being poked, but the CPAP machine has calmed him down and he is finally asleep.
After they got him comfortable he started having arrhythmia again. The extra Lasix they gave him threw off some of his electrolytes. Now they need to put another IV in to give him back electrolytes. They just put a new one in him this morning, but it is a scalp IV. They don't want to put it in the Scalp IV so they are going to try get another one his arm. Seems like every time they try his arms the stupid thing blows. I hate when they have to give him IVs, they always have to poke him like four or five times.
He is doing better now that he is on the CPAP and back in the CICU. Still not good, but better than he was doing most of the day.