Monday, April 30, 2012

Taking a Toll

Michael is still doing really good. He was able to eat 20ml out of his bottle by himself today, and they are scheduling a swallow study for him at the end of the week. He is full of smiles and farts today. He is a little stinker, I got to change poopy diapers twice already. You can tell he is going to be a happy little guy when he's out of here. Bryttney and I are excited for Zoey to finally meet him tomorrow, being able to have both our kids with us will make this much easier.
Even though Michael is doing awesome, I am still having a hard time. This morning was a little rough and I had a little breakdown. I am starting to get burnt out on all of this going back and forth. Bryttney is totally ok with it, but I would like to stay at the hospital and focus on one thing at a time. I like to knock out my objectives one by one. I am having a hard time working everything I want to do into this one life. Right now I think I need to start going back to work, but going back and forth makes that pretty much impossible. I want to be home with my daughter, but I also want to be here with Michael. I want to be going forward with school and my career, but I also want to be moving forward as an artist and a family man. 
It's hard to keep your life organized and moving forward when a surprise get's thrown into the mix, but I guess that is what life is; one surprise after another. This morning I wanted to get here earlier than usual so I could start working again from the hospital. We got up early and got ready. Then we took Zoey to daycare, then we got to the hospital and both felt sick and had to eat. Then we got to our room and talked to our nurse about this morning and last night. Then the doctors stopped by for a sec, then we talked to the occupational therapist. It's already 12:30 and I am just now able to start working. The days are all blurred together. I think we need some more stability. Since there doesn't seem to be any end in site, I was planning on going to go back to work this week. I think it will be good for our family and will be nice to have things a bit more structured and scheduled. 
I think the doctors want to move us out of the CICU in the next day or two which is really good. But it also makes me not want to go back to work quite yet.  The nurses in the normal cardiac area are still good, but they are not as involved as the ICU nurses down here. They have 3-4 patients each, where as down here they have 1-2 patients each. I would really want one of us to be here with him once he is out of the ICU. Not because I think anything will happen to him, but just because I know they don't give the patients as much attention and I don't like thinking about him all alone in his room while he is awake. There are a million things going through my head today. I think this is finally starting to take it's toll on my brain.

Can someone please buy me a PS3 and an 85 mustang convertible? That might take my mind off a few things..

Sunday, April 29, 2012

Blood Transfusion

Michael is still doing pretty good today. His red blood count was starting to get pretty low so they started doing a bunch of tests on him again. We got here this morning and the nurse told us radiology was on their way up to do an ultrasound on his head. Not the best news to hear, we both got a little scared. It seems like every time things are looking good something else starts to go wrong. Luckily the head ultrasound was good, it looks like he is not bleeding anywhere in his head. It was a nice quick scan.  They also did some tests to make sure he didn't have any infections anywhere. That came back negative as well.  Then they started thinking it might have just been from all the blood draws over the last month, and maybe he just needed a little extra blood.
They started a blood transfusion early this afternoon. It was a little weird to see him hooked up to a pump of blood. He tolerated it quite well though. His numbers started going up and he started looking way better about half way through the transfusion.  It was kind of a scary day at first, but after he got his transfusion everything started looking good again. He still looks awesome, and is doing really good.
He is doing pretty good on his bottles, he is able to drink about 10ml at a time. Then they give him the rest through his feeding tube. His oxygen is still off and his saturation is still up in the high 90's for most of the day.

He's looking good, and he still holds the title for cutest baby in the CICU.

Saturday, April 28, 2012

The New Reality

Seeing Michael doing so well is like a breath of fresh air. I woke up this morning knowing my little guy has been loving on his nurses. The nurses get so excited when they work with him. They also get bummed when I walk in the door just before a feeding because that means they don't get to cuddle and feed him. He's going to be a little heart breaker when he grows up. The girls are already loving him.
Today was the first day Jaron and I started cleaning up the house a bit. I've been able to keep up with dishes and laundry here and there and get some sweeping done but today being a Saturday and it's Spring!! I wanted to get some nice cleaning done. And we did! We woke up early thinking it was Sunday of course, our days are so mixed up. So we stayed awake and got an early start. Knowing Michaels nurses has been great and made me a little more relaxed to wait until later in the day to come see him. The house needed our attention.
I got to blow bubbles with Zoey out front and she loved spending the day with us at home. She's relaxing as well and I am SO excited to introduce her to her brother this Tuesday. She finally gets to meet him after a full month. She is going to love him! After a month of still hugging and kissing the "baby" in my belly I'm hoping after she sees him that she'll realize that the baby is here. It's going to be weird getting into the new reality at home. Changing diapers, bathing him by myself.. Midnight feeds! Oh my! Does the hospital rent out nurses? or could I maybe take one with me when I go home? Children's Hospital is Amazing! I couldn't be more comfortable knowing they've got control. The back and forth trips have definitely been difficult and the drive is long but again I am thankful for living so close. This has brought so many communities together and our families have never been closer. I heart my life :)

Oxygen off

 The last 2 days have been very good for Michael. He has been weening down on things all week, and today he finally got his oxygen off - for the first time since surgery! He looks awesome! All he has in is a feeding tube now. They are feeding him every couple hours through the tube and they are also starting to try bottles. He is handling everything really well. He looks at us and responds to our voices when we talk. The fear and worry about another surgery seem to be contained for now. His arrhythmia looks like it's under control. He has been in a normal sinus rhythm for a about a week. I think the only thing he is on now is the arrhythmia medicine, everything else has been turned off. His oxygen is still in the 90's and his respiration doesn't look as bad as it did last week. He also got to wear his first piece of clothing today. We are both getting excited to finally take our little boy home.
The reality of having a baby with a heart condition is starting to worry me a little bit. I don't know if I will ever feel comfortable going on a road trip again. I don't think either of us are ever going to sleep. I don't know if I will trust anyone to watch him or take care of him. There are just so many things to worry about, but I also don't want him to be the bubble boy. I want both my kids to have a life full of experiences and adventures. I am hoping this mitral valve will just grow with him and start functioning better as he grows. I am so excited to see him and Zoey together. This is a roller coaster ride.

Thursday, April 26, 2012

Man Time

Bryt is with Zoey today so me and Mike had some man time. We watched football and threw back a few cold ones. The nurses didn't really approve, but I wanted to show him a good time while his mom wasn't around. We were having a blast! This is him after his first 3 ounces, I couldn't get him to stop laughing.
I'm kidding of course.. He's not old enough to follow a football game! This is him after the second 3 ounces.
Totally wasted! He couldn't even hold a conversation. 

Joking aside, he is doing pretty good today. He had some arrhythmia most of the night, which is a bit scary.  They upped his meds and he has been in a good sinus rhythm for the last 2-3 hours. They think it was just from the transition to oral and there was a little gap in his anti-arrhythmic coverage. He was smiling and making all these goofy faces this morning, but every time I tried to get a pic he made some movement and I got a ridiculous photo. 
I don't have much to write today. This is just a slow process and everyone wants to make sure he is not going to give us a scare. I think Bryt and I are both getting worn out, we can't wait for next week when Zoey can come with us to meet him. Today it was just me and him and I got to hold him for a couple hours. He is starting to look like a little human, he is looking around and kicking and arching and trying to roll. I think he is doing really good. Here are some more pics.

And then this one for the ladies...
I am so proud of my little soldier. He is doing awesome!

Our Sunshine

Michael is still doing awesome! He is down to 2 liters of oxygen and a smaller amount of his cardiac medicine. He is almost ready to start taking a bottle again. Bryt and I both got to hold him today. We are almost to the point where we can hold him at will and get him ourselves. He still has the scalp IV and the picc line, but he is slowly getting things removed each day. This is a much slower recovery then the first week after surgery, and everyone wants to make sure he is not going to give us another scare.  The doctors are still surprised by him everyday, they can't believe how well he is doing.
We can't wait for him to meet Zoey. She has been so amazing through this whole thing. I love her so much. I can't believe what we are putting these kids through. She hasn't had a 'normal' day in a month. We are trying to keep it as normal as possible for her, but I think she can tell we are both getting worn out. Every day we have to drop her off somewhere and she is always so good. She will cry for a little bit, but she is a little adventurer and get's distracted fairly easily.  We both miss her and are trying to be with her as much as possible. We are so excited for her to finally meet Michael. I just imagine them sitting in the back playing with each other in their car seats. I am so glad she is so forgiving and full of love. It really makes this whole experience so much easier. I woke up around 2:30 this morning and couldn't get back to sleep, so I did this painting of my wonderful little girl.
When she is old enough to read this, I want her to know that we all went through this together, and Bryttney and I love her more than she will ever know.  Thank you for being so patient with us Zo! We love you! Everyone is begging to take care of you! You are so incredibly wonderful!

Tuesday, April 24, 2012

3 weeks

 Michael is 3 weeks old today! This little guy has been through a lot in this new life. He got moved to another room today, I think that is number 10 for us. There is a lot of construction going on and they had to move some people around to try to minimize the noise.  There is still plenty of banging and grinding noises though. It doesn't seem to bother Michael, he is just looking around curiously. It is so nice to see his eyes so open. The doctors are slowly weening him off of everything, he is doing really good still. There is still some debate on whether or not they will need to intervene soon. Our cardiologist is fairly optimistic and thinks he can make it a while on this Amiodarone. A couple of the other doctors are still a bit cautious and think they may have to intervene sooner than they would like. Bryt and I think he is doing good and will be ok on this for a while. It does sound like a pretty nasty drug so the sooner he gets off it the better, but they are not planning on keeping him on it longer than a year. Hopefully his heart will grow enough to change the way this mitral valve works. It is looking like he will definitely need another surgery though. They are just hoping it is a couple months/years down the road. They basically want him as big as possible, if he can make to 5 years, that is wonderful! If he can make it to 10 months, that is still high risk, but it's still better than 3 weeks.
We are not thinking about any of those surgeries in the future though, we are here with him today and he looks great! There still does not appear to be any end in sight, but we are not in a hurry. He is here and being taken care of by a great team of people. His oxygen got bumped down to three liters and they are going to try switching the cardiac meds from IV to oral.  I got to hold him and rock with him for a bit today. That was nice, he was pretty calm for the most part but then started getting uncomfortable. I'm still a little freaked out to to hold him because of all the tubes he has. I can't wait until he is off everything again.

Monday, April 23, 2012

Looking Good

Michael is doing really good today. They are slowly weening him off things as each day goes by. He is up to his goal feeds this morning and steadily gaining weight a gram at a time. He is still having some extra beats every once in a while, but the Amiodarone appears to be working and keeping him in a normal rhythm. He has been pretty active this weekend, we were able to hold him, and help give him a bath. He is finally off the CPAP machine. He looks so much better without that crazy rhino mask on. We are very happy he is doing so well.
This weekend was a big weekend for us. On Friday they had told us that he was slowly trending down and if he did not make any improvements this weekend they would have to intervene. They told us even though he was still looking ok, each day was not as good as the last. They said there was only so much medication could fix and the arrhythmia might be caused by something they physically need to repair. Since his heart is still so small, all of the options they have are extremely risky.  Our cardiologist was very comforting but very straight forward. He told us they were considering three different surgeries and all of them had high risks of complication or death.  After hearing that we were both a bit upset and had to come to terms with the possibility of Michael not making it.  The good news is he did great this weekend and did not go back into the arrhythmia. We have not talked to our doctor yet, but we both feel pretty confident about him starting his recovery again. He looks great and his numbers are all good. They took him off one of his cardiac medications and will continue to slowly ween him off things throughout the week.

Saturday, April 21, 2012

A Mothers Hesitation

We just got back from visiting Michael today. Yesterday was rough not knowing which direction Michaels health was going in. The doctors explained that we were at a sort of fork in the road. The anti-arrhythmic medication they have him on is agreeing with him so far. The extra beats his heart is having are not the same as the ones that were throwing him into the Atrial Flutter. He woke up just after we arrived. The nurse was preparing a sponge bath for him as we came in today. Jaron was able to help wash him up and I was able to lotion him.
There's things the nurses do for him that I'm unaware of until we have a really good one that asks if I'd like to help. Of course I'd like to help! I'm his mother right? Since he's being fed through a tube his mouth gets really dry and the nurses swab his mouth with my milk. I've been sad for him that he can't eat, because I know that if he likes food as much as I do, than he's missing out.  Knowing that he is still, in some way, getting to taste and have some milk, I'm sure he looks forward to it. I am able to give him a dose of oral medication, and change a diaper every once in a while. The fact that I get so excited to do these small things is an indication of how little I've been able to bond with my son.
Every opportunity I get, I take advantage of. I held him for the first time in a week. I haven't held him since last Sunday. Last week I was still able to pick him up whenever I wanted and feed him when he was giving me cues. When the nurse asked me if I wanted to hold him today, I didn't hesitate as I usually would. There are so many cords and tubes and IVs everywhere. The one that made me nervous is the scalp IV, but still, there was no hesitation. I scooped one hand under his neck and my other under his bum (as we've been instructed over and over again). I held him cuddled in the nook of my arm and gave him kisses on the little portion of his face that doesn't have mask on it. I am so blessed to able to look forward to and long for these little moments. The moments that I get to use those teeny tiny baby diapers and finally change MY baby. The moment that I know he's getting a taste of MY milk. The moment that I get to bathe MY baby. These moments that come naturally to most mothers with their babies and I get these special little moments with Michael. Because these moments are few and far between they remind me each time that this is my baby and one day I will be able to take him home and cuddle with him the way every mom gets to cuddle their babies. I can't wait. I Can - Not - Wait!!

Emotional Rollercoaster

I am going to take a bit of break from updating on Michael for the weekend. He is in some what of a stable state at the moment. He has an awesome nurse that was with us all day yesterday and knows what to watch for. He continues to get his arrhythmia medication and he is still in a normal sinus rhythm. If he can make it through the weekend without any arrhythmia we are on the right path.
We talked to lots of doctors and nurses yesterday about his progress and how he is doing. Seeing him progress so slowly is not easy, especially after he was on a rocket to recovery last week. This week has been scary and full of emotional ups and downs. It is amazing how you go from being worried to content. Then you feel like giving up all hope. Then you feel frustrated and angry and you don't want anyone to comfort you. I am hoping one day the record of our experiences will help someone going through a similar situation. Because I have that thought in my mind I am trying to keep this blog as real and personal as I can. I don't know how people are supposed to react to things like this, it is a hard trial to endure.
 I was talking to a social worker yesterday trying to explain my feelings through this whole thing. I feel guilty for not having any emotions. I feel guilty for being comfortably numb. I feel guilty for accepting the reality of the situation and losing hope. I feel guilty for having a smile on my face when things look bleak. It seems like any emotion you feel can be accompanied by guilt, and none of it makes any sense. Of course I am going to be frustrated and annoyed. Why not try to make the best of a bad situation?  Sometimes it is ok to just be numb, no emotions can really help cope with the things that are going on in front of you, you just have to watch and absorb. This is a horrible roller coaster ride, and it's all in the dark. There is no way of telling what is coming up next, one minute you are terrified and the next you are so happy you could cry.
There is no doubt this is a rough ride for us as parents, but we also have to remember the rest of our family and friends. They are not only supporting us through this, but they are having to experience this second hand, without holding his little hands or adjusting his mask or singing him a song. I need to remind myself  that this is not only extremely hard for us, but for everyone else that wants to love and care for this little soldier.
This is hard, the hardest thing I have ever done. I'm sure I am an emotional mess, but I'm trying as hard as I can to get through this with a positive outlook and a smile on my face. It is easy to push people away and not listen to what they want to say. For anyone reading this that has gone through something similar or is going through something similar.  There may be a time when you get in arguments or fights with your friends or family. That will be accompanied by guilt and anger and sadness.. You will think "Why is this happening? Why in a time  like this? Why won't they just shut up? Why can't I just accept this advice? Why am I fighting with a person that loves and cares about me?" I would like to think this is normal for most families. When everyone starts getting stressed out, things are bound to give a little. Just remember that person loves you and is trying to help the only way they know how. They have all the best intentions and are only trying to comfort you. You will be trying to deal with this the only way that you know how, and may not be ready to talk about certain things. Just remember everyone around you is a wreck, no one is on the outside looking in. You are all going through this together, and eventually you will make it through together.
This was more for me than anyone else following Michaels progress. This is an experience that is changing me forever. It is changing my family forever.  I like to think that someday this entry will bring a sad and confused parent hope. I could not go through this without my beautiful wife, my wonderful family, and all of my amazing friends. Thank you for everything you have all done, I truly love and appreciate you all.

Friday, April 20, 2012

Paced Again

They were able to pace him back to a normal rhythm this morning, He is still hooked up to the pacing machine and they are about to do another echo on him. They are thinking his left atrium may be starting the arrhythmia, since his mitral valve is not functioning properly it is stretching the left atrium and causing higher pressure in there. If it is stretching, it continues to have a higher risk of putting him into this flutter. Learning about all this makes me not want to take him home. I want to put him back in Bryttney, he can live there for the rest of his life.  The electrophysiologists (rhythm specialists) are pretty sure he is going to flip back into flutter at some point. They are hoping the new medication will prevent it and are giving him an extra dose now that he is back in normal rhythm.
Bryt and I are having a hard time, this is a whole new set of problems stemming from the original problem. Even though his numbers look good and he tolerates the arrhythmia quite well, he can only last like that for a short time. I don't know what is going through either of our heads, I am just at a loss. We have no clue what the future holds, and have no idea what to prepare for.  My mother has always told me "everything you do prepares you for something else." I don't know if this is preparing me, or if this is what I have been prepared for. This is truly a test of patience and faith.
I have been in a lot of situations that are not ideal, but have always pulled through. I like to think I have been prepared to be strong enough to pull myself and my wife through this. We have had a lot of tears and frustration but I am trying to get as much as I possibly can out of this.  It does confirm my desire to want to make more of a difference in the world, and maybe that is one of the reasons we have been put in this situation. Maybe it is preparing both of us for something bigger and greater than ourselves. The nurses and doctors here are certainly making a difference in the world, and I am glad to meet such amazing and selfless people.
I think we are both handling this fairly well so far, neither of us are in constant tears, and we are both comfortable with the team of doctors we are working with. We each take our turn breaking down, but we are here to support each other through the tough times. It is hard to accept this new level of responsibility as 'normal.' Michael will have special needs and medication for a good chunk of his childhood. I look forward to the future when we can look back on this as a growing experience together. Thank you all for your support, we could not do this without everyone behind us %100 of the way.

Thursday, April 19, 2012

Stinkin Arrhythmia

We can't kick this Arrhythmia. The rhythm specialist was called in again tonight, she upped his drugs and tried to pace him out of it a couple times. She succeeded 3 times, but he kept going right back into it. They have been talking about a new drug- Amiodarone, it is the more powerful out of all the anti-arrhythmic drugs. The reason they don't use it first is because it has a couple bad side effects and they don't want people to be on it that long.  Since they couldn't pace him out of the flutter while he was on the sotalol and digoxin, they started him on the Amiodarone. They waited for about an hour to let it get into his system and then tried pacing him again. That didn't work at all, he is just stuck in this irregular rhythm. They did manage to slow his heart rate down a bit, but now it is very irregular and all over the place.  She is going to let it get into his system through out the night and then try to pace him again in the morning. If that doesn't work, they are going to try to cardiovert him, basically shock him to reset his heart, similar to a defibrillator...which is pretty terrifying to think about. They said it takes 7-10 days before you see the full benefit of the new drug, so if they can't get him out of this rhythm we will be here for another couple weeks.
Our little guy is back on the CPAP machine, I call it the rhino machine... I strongly dislike it, but it does make it easier for him to breathe. We are both emotionally drained, this is a ride of ups and downs and unexpected turns. I am exhausted and can't even comprehend how I feel about the whole thing. It is fairly frustrating, and not easy to accept. We are really hoping tomorrow will bring better news. They may be able to pace him out of it in the morning, and the new meds might be able to keep it at bay. We have good doctors and nurses, we just need to have faith that they will be able to pull him out of it tomorrow.

Little Trickster

ugh... little trickster.. He's back into artrial flutter.. right when I posted the last post he flipped into it.. We gave him a higher dose of Sotalol  just now. They may have to zap him out of it again. His heart rate is a perfect 173, it is precise and steady and he is having no problems what so ever.  He is in an irregular rhthym again, so they will have to break it.. what a little trickster. We are not too worried about it as this will be the third time they get him out of it. The Sotalol may kick him out of it, but they are getting prepared to zap him again. Time to have a morphine ride again, which kind of sucks since he was just getting active.
They are upping his dose of Sotalol again and then giving him a second anti-arrhythmic medication. He definitely likes to keep everyone on their toes.  This is getting frustrating, there doesn't seem to be any cause. It just seems to start randomly. The rhythm specialist will be here in an hour to pace him out of it.

Face Mask off

Michael was up and alert again this afternoon. He was looking around and responding to our voices. It's so nice to see those little eyes again. We haven't seen him alert and looking around since Sunday. His heart rate has been 130-140 for the last couple hours, it is still dropping to the 80's every once in a while, but it has been few and far between.  We were able to hold his hands and talk to him and sing to him. He looks really goofy with his rhino mask on, but we were happy to see him so alive again. He gets upset when the nurses are changing his diaper or check him, so that is a good sign.  His lungs are starting to look better and his blood gasses are improving as well. He is starting to do that little koo again, he is just a bit horse still. Overall he is looking really good.
They just took off his face mask and put him on heated high flow oxygen, his numbers are still looking really good. What a day.. now we just have to wait and see how he does for the next couple days. We will most likely be in the CICU the rest of the weekend. It looks like he is finally making some good progress again. I really think us being here and telling him he can do it helps. I don't know if there is any science behind it, but I really think having people cheering for you makes a difference. We have been at his side telling him he can do it most of the day. We are so proud of him, he is such a little fighter. Almost all the nurses know him now too, so we are all cheering for him. He has been being a little stinker, and causing lots of worry, but everyone that meets him loves him. I can't wait until he's awake again.  This is a roller coaster ride, I am happy to have the opportunity to relax and refill my adrenaline for a bit.  Thank you for all the prayers and support. We are not doing this alone.

Day 16

Day 16 in the hospital. After seeing him doing so well last week, everyday gets harder to see him hooked up to all this equipment. His heart rate is somewhat stable, but it continues to drop into the 70's and 80's every once in a while. After walking into the room today and seeing no change from yesterday it is hard to think about leaving him tonight. I called his nurse a couple times last night and they assured me he was fine.  Even if his vitals are looking ok, and he is not turning purple, he is still hooked up to all this stuff, I can't accept fine. I want him to be doing great, and getting all this crap off of him.  He is off all of the pain meds now, but still has multiple cardiac meds pumping steadily. I reserved us a sleep room for the night. I can't think of leaving him again, it's getting too hard to walk into this every morning. At least if I am here with him, I can feel like we are going through it together. I don't know if he will remember any of it but I do not want him to think he was doing any of this alone. I don't want him waking up in the middle of the night scared and alone.  Zoey will manage without us for another night or two, she has lots of cousins and aunts and uncles to play with. We both miss her so much, but we feel like we need to be here with Michael. I think every morning Bryt and I come in expecting him to look better and have a little less accessories. I don't know if us being here has any benefit, but I like to believe it does. I love this little guy so much. I wish I could put all this crap on me and let him go play with his big sister.
Going home every night does have plenty of advantages, but I think we can help him heal a little quicker if we are here holding his hand every step of the way. Thank you for keeping us in your prayers, we will bust out of this place eventually.
After talking to the nurse I feel a bit more comforted, most of the pumps in here are turned off. The Pacing machine is in here just in case, and his oxygen continues to stay at 100 even when his heart rate is so low. I think this face mask he is wearing is the hardest thing to look at. It is hard to stay positive when you see your little baby like this, but we have to try. Something that always helps me be positive is to think of all the things I am grateful for.
I am thankful we live so close, and thankful we have such amazing families. I am grateful for our doctors and nurses, their confidence is helping us be comfortable and confident. I am thankful for our wonderful daughter and how forgiving and loving she continues to be. I am thankful I have a relationship with the lord and have something to lean on when nothing else seems to comfort me.
The blessings and experiences we have received through this experience have been wonderful. Bryt and I are becoming closer than ever and our families have been nothing but amazing. The people behind us continue to shower us with love and support. I am learning a lot about cardiac kids and able to follow most of the medical conversations.  Our surgeon is one of the best in the world and has been doing this for years. There are so many things to be grateful for in this life. It is easy to forget how many good things there are when you have to go through something so hard. Trying to remember all of them is something that can help me stay positive.

Wednesday, April 18, 2012

Paced back to 'Normal'

The rhythm specialist showed up around 1 this afternoon, Michael had been on the Sotalol for about 3 hours. They said this was the peak time to try to get him out of the arrhythmia. They started hooking everything up and kind of explained what was going on and how they were trying to fix it. To pace him out of the rhythm, they try to put an extra beat between the irregular beats. I don't really understand how it all works but they were able to get him out of the arrhythmia within a couple minutes.  It took them about 40 minutes to do it yesterday, but part of that was setting him up with the wires and breathing tunbes. Today he already had all that stuff in. The doctor showed up, and we both headed to the hall. Bryt had to use the restroom so it took us a couple minutes to get out of the ICU. Right when we got out the door one of the doctors was walked passed us and told us they were done. It only took them like 3 minutes to get rid of the flutter. We were both shocked, what a relief.
We had to go get lunch, so we went out for a little bit. When we got back to his room he still had the pacing wires in and the pacing machine was still next to him. His heart rate is all over the place, from 100 to 140.  The nurses said this is better than beating so fast consistently. They said it's too early to tell what will happen, he might just have an irregular heart beat from now on. They don't know if the Sotalol will have a negative effect yet, so the next 24 hours will be monitored closely. I feel worried about him, I don't like his heart rate being all over like this, that is how it was before he turned all purple yesterday.  I trust the doctors and I know they are trying to figure out the best balance for him. They say he only likes his stew a certain way and they just have to find the recipe. 
I am having a hard time seeing him hooked up to all of this stuff again, I just want him to be ok and on the path home again. I know he is not comfortable with all this crap hooked up to him. I just want to see that little guy I saw last week. I keep asking questions that no one can answer. All we can do is be patient and see what happens. 

What is stable?

The doctors keep telling us he is 'stable.' I finally asked what that meant to them, because to me it doesn't mean being hooked up to tons of stuff and getting additional medicine and treatment. The nurse explained it in a good way, she said as long as his organs are getting the proper amount of blood and oxygen we consider that stable. Even though there are some kinks here and there and we have to keep tweaking things, his body is still tolerating everything good enough to get his organs everything they need.
We walked into the hospital this morning and Michael had been moved to another room. He is hooked up to a couple more medications and the pacing machine still. It was a little overwhelming walking into the room with all this electrical equipment, but me and Bryt both feel ok with everything today. It is starting to look like he will be in the ICU for a while. They were not able to pace him out of the flutter and gave him some more Sotalol. Yesterday they thought the Sotalol is what caused the heart rate to slow way down and back up the fluid into the lungs, but today they are thinking they want to give him one more chance at it since there was no definite proof it was the Sotalol. He is on a bunch of Morphine and doesn't seem to mind any of the stuff hooked up to him. But it is sad to see him in this state. You can tell he is just really drugged up, I can't imagine he is comfortable. He has an IV in his head, an IV in his right arm, a PICC line in his right arm, a feeding tube down his nose, pacing wires down his throat, blood pressure cuff on his leg, O2 sensor on his other leg, the heart rate monitors, EKG monitors, and last but not least the big Rhino face mask. It is hard to see him like this and I don't really want to post any pics of it. Some good news is the current flutter is not as bad as the one on Monday, the atriums(top parts of the heart) are beating at about 380bpm and the ventricals(bottom parts of the heart) are picking up about 200 of them. So his heart rate right now is about 200bpm. They really want to get him out of this arrhythmia. They are going to try pacing him again around noon after the Sotalol has been in his system a bit longer. Bryttney and I are doing ok, this is not easy to look at, but we are starting to get used to all of it. The doctor told us yesterday this was not going to be a quick fix and we needed to start preparing for the long road. It's hard to hear that, but now we can at least kind of prepare and not get our hopes up. We are glad this all happened while we were still here, if we would have been sent home, this could have been way worse.  

Back to Atrial flutter

We are at home with Zoey tonight, we both felt fairly comfortable with  leaving Michael there this afternoon. We came home and went to bed around 6pm.  I am still exhausted but had the urge to wake up and check on him at 2am. I just got off the phone with his nurse, it sounds like he is still on that fragile teeter totter. We put him on a different arrhythmia medication this afternoon, but it may not be doing the trick. He flipped back into the atriall flutter tonight, so his heart rate is going up again, the nurse said he is hanging out in the 180's. I don't know what they will try next, the sotalol he was on last night did not react well with his body, but that is there first choice for preventing arrhythmia.  What a trip this is... poor little guy is all over the charts. He looked great this afternoon, I can't believe we are still in this funk. I think everyone was hoping the flutter was a fluke and the arrhythmia medication was kind of just a safety net. Tomorrow should be interesting, thank you for thinking about our little guy.

Tuesday, April 17, 2012

Making Progress

It took them a couple hours to get the PICC line in, but they did get one in. We had to leave the room while they were doing the new line so we didn't get to see him for a couple hours. When we came back in the room Michael had his little face mask on and was looking around like there was nothing wrong. He looks great, his color is back and he is squeaking away. What a relief it is to see him with eyes open kooing again. He looks a little crazy, but that is not bothering us one bit. You can tell he is very comfortable and happy to be breathing again. He is annoyed by his arms being wrapped up but when he is able to get them out he starts pulling on stuff. I think if they allowed him to have a free left arm he would be much happier. Our nurse said the more pissed off he is about having that thing the better. Everyone continues to say how impressed they are by him. They usually do the PICC lines while the children are sedated but since he is in a fragile state they had to keep him awake. The nurse said he didn't make a peep, she was giving him sugar water to keep him happy. She said he did amazing.
We also had a nice long chat with our doctor, she said he looks amazing compared to this morning.  She also warned us that with his specific condition we are walking a long road.  There will be a lot of balancing and keeping a close eye on everything. Even though he is a little trooper, he is still on that fragile teeter totter. We have to make sure he has a good diet and nothing we do tips the scales. We both feel very comfortable again and are probably going to try and start sleeping at home with Zoey. We love our little soldier, he is an unbelievable little person. Thank you for all the prayers! We are making progress, he is still in that critically stable condition but he looks awesome and appears to be doing great since taking him off the sotalol.

Critically Stable

We just woke up and did rounds. Michael is in a 'critically stable' state. He did not tolerate the flutter or sotalol very well. He is back on a breathing machine and has a scalp IV now. They are possibly going to put a PICC line back in and another arterial line. They can't sedate him because they don't know if he will be able to handle it. He is now under pretty close supervision by the doctors and nurses. They were told to watch his monitors very closely and stay at his bedside. Bryttney and I are worn out. This is exhausting and now there seems to be no end in site. They are all amazed at how much he can handle, but apparently the sotalol was the tipping point. They are trying to let him balance himself out again. His lungs are very wet, they are calling it a 'white out.' The Gradient of his mitral valve is pretty bad and they think that is what is backing up the blood into the lungs.  We don't have any answers yet, but from the sounds of things this morning it sounds like they are going to try to find that sweet spot again. They will try to get him to a point where is stable enough to eat and grow and then worry about his mitral valve later. If they can't find that balance they might have to start thinking about surgery again. Thank you all for your support, it is hard to have any emotions at all during a time like this. I don't know if I'm sad or worried or what. I am just numb. I am glad he is getting extra attention, but we are both in a state of melancholy. This is draining and exhausting. I think we are going to try to give him a blessing today. He Seems pretty comfortable, but hopefully we can help the doctors find the best cure for him. It feels like we are back at square one.

An Acute Change

After waking up to red alarms and being worried for your babies life, it is hard to get back to sleep. We have had our eye on his stats and he continues to be all over the place. His oxygen is still in the high 90's but his respiration is also near 90, and his heart rate is all over the charts, going from the 80's to 160.  We kept trying to comfort him because he was a bit whiny, he sounded like he was in pain. Bryttney was rocking him and cuddling him and singing to him. He just kept making this moaning noise, he usually koos, but not like this. I went over to check on him and he didn't quite look right. He was starting to get pretty dark, it started with a darker red all over his body and quickly he started turning purple- a dark purple. It was unmistakably a bad sign, he started to break out in a sweat. Our nurse was trying to take care of another baby, who also happened to be having some red alarms.
I just grabbed the closest nurse I could find, she had been kind of helping out through the night because I kept going out and grabbing people. I told her he didn't look or sound normal and she came to see him. She turned on the lights and within minutes the room was full of nurses and doctors again. 
This time it was way more serious, it was obvious that he was not doing good. He was purple and could not breathe, he was moaning in pain, and he was sweating all over. Bryttney started to lose it. We had to leave the room and go take a breather. We hid in the lacation room and said a prayer asking for comfort. She was having a really hard time. I had to know what was happening to him so I went back to check on him while Bryt waited in the lactation room. He had three guys around him with a pump and oxygen, I couldn't handle being in there so I grabbed our stuff and told the nurse we would be out in the hall. 
When I got back to Bryttney, she asked if I had ever felt like we were only supposed to have him a short time. I am at a loss for words. I don't know how to respond to such a question. I want to say everything will be ok of course, but the last two days have been so scary and unpredictable I don't feel confident in any answer.  We came into this ready to deal with anything. This is much harder than anything we were prepared for, he does not look good. It was not a conversation either of us really wanted to have, and neither of us really wanted to say the words. We both agreed that we would be patient and calm and try to deal with whatever was going to happen. We both felt calm, but I also started feeling physically sick. I can't begin to describe the thoughts in your head when starting a conversation with your wife about whether you think your child will make it or not. I don't know if we are over thinking or over reacting but I think we are both worried about even putting the thought into the universe. But I also think we both had to confirm with each other that we were aware and ready for the worst. 
I had to go check on him again, I only saw him for a brief second before I turned and walked back to Bryt. His color was starting to come back, but he was looking pretty pale. He wasn't dark purple anymore so I think that was a good sign. He had 4 nurses around him putting stuff all over him, getting him more medication, pumping him with oxygen, taking blood samples, and doing an emergency X-Ray. I couldn't handle being there and I knew Bryt needed me. This would be hard for anyone to take in but I am trying to be strong for her. The doctor stopped me as I was leaving and told me that the slow heart rate in combination with the deformed mitral valve had backed up a lot of fluid into the lungs and he was not able to compensate. She said they were going to give him more lasix to help get the fluid out and also some dopamine to help counteract the sotalol. Sotalol is what they gave him yesterday to help slow down his heart rate and get rid of the flutter. Dopamine will speed up the heart rate.
We waited out in the lobby for about half an hour, when we came back into his room he was hooked up to two more medications and oxygen. There were only two nurses left and they were just leaving as we got in the room. I think he is somewhat stable now. He is still breathing a little fast but he has good color and a good heart rate.  There is a new team of doctors here now. I will update after we talk to them. I am guessing we will be in the ICU for another couple days.

4am Alarms... ugh

It's 4:00 am, Bryt and I have been 'sleeping comfortably' on this pull out bed thing. We woke up this morning to his alarms going off again. His heart rate was dipping down into the 70's and had an abnormal rhythm again.  Our nurse was on lunch and the nurse that was covering was suctioning a different baby. His heart rate was going up and down from 70-100, but never got up to his normal 140. I went walking around the CICU, looking for a nurse. I didn't see any familiar faces so I just told the charge nurse. A couple minutes later there were 3 nurses and a doctor in our room. They were all checking his pulses and discussing the rhythm patterns using lots of acronyms. The nurses seemed a bit confused, but when the doctor came over she asked when he got his medicine last and then told us this was one of the side effects of the medicine. It usually shows up 3 hours after they get it and he got his last dose at 1. They need to talk to the rhythm specialist again and see if he is on too much medicine now. 
If we have learned anything here it is just to be patient and trust things will work out somehow. Every kid has a different story and the doctors don't have a simple 'one size fits all' method to fixing them. They each have their own individual issues and require constant adjusting. Every morning there are rounds where all the staff come and discuss his condition. They each give their own opinion and then agree as a team what the best next step is. A lot of the times, it is something they are going to try and see if it works. None of them seem to have 'the answer,' and whenever you ask for any kind of time frame, you always get "we'll just have to wait and see how he tolerates it." I think we are finally starting to accept the alarms and the constant ups and downs. This is a roller coaster ride for sure. It would be nice if we knew when the next turn was coming.

Monday, April 16, 2012

Back on Track

We got  a call from the hospital way quicker than we were expecting to. We both recognized the number and were terrified of what they had to say... It was the rhythm specialist, she was calling with some shocking news!(sorry, I have to keep my sense of humor) They were able to use the pacing wires to pace him out of it. What a relief! They didn't have to actually shock him with any high voltage. They just put him to sleep and put the wires down his throat and just behind is heart. They then used a computer track his current speed and used the pacing wires to make it pump faster and faster until the heart finally reset itself. He is on some medicine to help prevent him from flipping back into a dangerous rhythm and will need to stay in the CICU for at least another day. After an experience like that, we are not in a hurry to get out of here. He looked perfect this morning, he was sleeping peacefully and was nice and  pink. If it weren't for the monitors and alarms we never would have known there was anything wrong.
When we came back into the CICU to see him, he had been sedated and was no longer breathing on his own. So he had to have a breathing tube in again. He was also starting to get a little cold so they wrapped him up with a little blanket around his head. he looked so cute. He came out of sedation and is able to eat and breathe on his own again. The rhythm specialist said if he is going to flip back into it, he most likely will do it in the first 24 hours, but every kid is different so she doesn't know. She recommended we get a stethoscope at home and listen to him regularly throughout the day. Once we get used to his normal heart beat we will be able to tell when it is abnormal.
We are both exhausted and are very happy to have our little guy back on track. This pushes us back another couple days on being released, but we are not in a hurry to get out of here. We are totally willing to have him live here and we will just come visit him every day.

Rhythm Specialist

We just spoke to the Rhythm specialist. She wants to get him out of this rhythm by this afternoon. She said the medicine they gave him earlier this morning helps prevent this arrhythmia but doesn't do the best job at getting them out of it. The doctor this morning told us he would be on the meds a couple days and then as a last resort shock him... Then later this morning this big cart of machinery comes rolling up. It just doesn't seem fair to have all this crap hooked up to this little guy. He is still so tiny, I can't even imagine how strong he is, he has gone through so much so far. I can't stand thinking about this afternoon.
 They are going to sedate him and put some pacing wires through his nose and set them behind his heart. They are going to try to pace the heart and then get it back into the normal rhythm. She said this might be hard to do because the top chambers of his heart are beating 3 times faster than the bottom times. It's called an arterial flutter. She said they might have to shock him to 'reset' his heart. It does not sound very fun, but it with the way his heart is working right now there is a bunch of blood swirling in the top right chamber, this could cause clots, which could cause strokes. She said the clots usually take 24 hours to form, but they can be pretty bad news.  We are both nervous about this shocking business but it does seem to be the lesser of two evils. They will sedate him so he doesn't feel anything, so that is a little more comforting.... It's still scary though. This place is very good at drawing out the tears, we have both done our share of crying this morning, but we need to stay strong for our little man. He is putting up with so much in this first month of his life. He is going to be one tough cookie.

3 AM - Back to CICU

This weekend has been great so far, Michael was chugging along and Zoey was getting some daddy time. Last night I asked Bryt if she wanted to come home for the night and get a shower in her own shower, get herself some new clothes, etc. But she strongly felt like she should stay there with Michael. That sounded good to me, I planned on staying with Zoey then dropping her off at daycare in the morning. Then heading down to the hospital. On my way home last night, I had a feeling I should stay at my moms with Zoey, just to make things a bit easier on me in the morning. So that is what we did, Bryt stayed at the hospital and Zoey and I stayed at my moms.

Around 2:00 am I woke up and had a feeling I should call my wife. I was very groggy and didnt want to wake her up so I just sent her a text. Little did I know she had just woken up and was about to have an anxiety attack. She woke up to feed Michael just in time to see his alarms start going off. His heart rate had jumped from it's normal 140 to over 240. Bryttney was confused and didn't know if that was acurate, we haven't ever seen him get close to this. Nurses rushed into the room and started putting ice all over his head. Michael was experiencing SVT (Supraventricular tachycardia), the electrical system in his heart was sending out too many signals and causing a 'flutter' in his heart. The top part of his heart was pumping faster than it should be and causing an irregular rhythm.  The cardiologist called for a 2nd opinion before starting treatment. Even though Michael had multiple nurses around him trying to get him out of this state, he was sleeping soundly. The extremely fast heartbeat did not seem to bother him at all.  Bryttney was starting to breakdown and called me around 3:00 am. I guess that is why I was prompted to stay at my moms house, so I could leave Zo without any issues.
I got to the hospital and they had moved Michael back down to the CICU. The nurses were drawing some blood and Bryttney was curled up in the corner of the room crying. I ran over and wrapped my arms around her, she couldn't talk or look at me or move. She was still kind of in shock from the whole thing. The doctors won't let her breast feed him because if this medication does not work, they may have to use a defibrillator on him and shock him back into normal rhythm. I think hearing that is what may have put her over the edge. I kept cuddling her and let her know everything would be ok. There were only two nurses at his bed and his heart rate is staying around 180 for the most part. After talking to the cardiologists and nurses I don't think he is in any immediate danger as of right now. He is somewhat stable and a rhythm specialist will be be by later this morning.

The medicine he is on is being given to him in 12 hour doses. The doctor said he will need to be on it for a couple days before they see if it's working or not. He seems to be doing good still, he is nice and pink and still sleeping peacefully. He didn't like the nurse poking him for blood, but she gave him some sweet stuff and it calmed him down. We are back in the ICU for a couple more days, we are both worried about him, but I think he will be ok. I am glad he was still here, if this would have happened at home we wouldn't have had any idea.  The reality of this situation continues to grow and scare us. We are both very grateful for the annoying alarms and the amazing nurses. The spirit is with us and I feel pretty calm about everything right now. I will continue to update as the day goes on.
Sometimes I feel a little awkward typing away on my computer during a time like this, but Bryttney and Michael are both asleep. The nurses are taking care of him and I know he will want to know how it all went down when he is older. I don't want to forget any of the details so I try to get them down as soon as the commotion stops. Thank you all for keeping us in your prayers, give your loved ones a big squeeze. I don't know how we would do this without family and friends holding our hands every step of the way.

Sunday, April 15, 2012

Who better than us

Sorry for the late post. I hit a rough patch last night when Zoey came to the hospital to visit. It stinks she can't go back to his room with us, she still hasn't seen him. When she comes we just have to sit out in the hall and play with her, then send her off crying.  I couldn't handle it last night so I ended up coming home with her for the rest of the weekend.  I think it was good for all of us. Zoey was definitely ready for some time at home with her daddy. Since Michael is fairly stable I am not so worried leaving the hospital. I know he is in good hands and he has been spending lots of time with mommy lately. He even got some of his stitches out today. I still here alarms going off in the backgroud every time I talk to Bryttney. They are slowly weening him off oxygen, so he has to adapt every time they turn it down. Hopefully we can go home without any.
I can't wait to be home and not worry about those alarms. It is starting to get scary though- the closer it gets to going home the more real it becomes. We are both ready to go home, but we will have a hard time leaving these nurses. They have been wonderful, and if there are any problems they just come in and take care of him.  I know he is a trooper and has been stable for the last couple days, but it's scary to think that we are taking him home soon.  I'm sure Bryt is totally comfortable with it, she has been more confident than me through this whole experience. She just has this calm about her, she just knows everything will be ok. I am at the other end of the spectrum, always thinking about the what if's and the why's and the how's. Together we will be able to handle it, but it's starting to get a little more real each day.
When we first found out about our baby's heart condition, we both broke down with sadness and worry. After coming to terms with it and seeing all the wonderful blessings this was bringing our family, we were grateful for the opportunity to raise such a special little spirit. It sounds weird to be grateful for such a thing, but after thinking about it- who better than us? We have a stable home full of love and an amazing support system. We will both do our best to give both of our children the best life possible. I'm sure there will be plenty of challenges, but that is just part of life.  Thank you for keeping us in your prayers!

Friday, April 13, 2012

Goodbye CICU

Today was a long day, we had a long night last night. Bryt was up every 3 hours to feed the little monster. She is amazing. This morning was awesome, he had made a lot of progress and we felt comfortable going for a longer lunch. We walked a couple blocks down to Chipotle and had a nice chat. It was nice to be out in the sun and not be surrounded by blue scrubs and alarms.  When we got back from lunch the nurses had him unhooked from just about everything and told us we were heading upstairs. We weaved his crib in and out of some secret hallways and made it an elevator. We took it up to the 9th floor and wheeled him to our new room. Hopefully this is the last room we will be in. Poor little guy has already been in two hospitals and been bounced around to 6 different rooms. We have a pretty cool view from way up here. This unit is a little different than the ICU. We have an actual door, and we have a bathroom and shower of our own.  The nurses have 3-4 kids each so they are not really watching his monitors as closely. One of our alarms was going off for about 5 minutes before anyone came to look at it.
Michael is off his fortified stuff, the lactation lady said he is looking good and hasn't really lost that much weight, only about 4% lighter than birth weight. So that is exciting, cause he doesn't seem to like the fortified stuff. He also has a big towel wrapped around his arm with the IV in it.  We didn't notice it until we went to change him, it looks like he just has a big club arm. I was calling him Mega Mike, because he looks like MegaMan. He was squirming around and his Club arm got caught on some of his belly button stitches and they started to bleed. It wasn't a lot of blood, but we did have the nurse check it. We all think it looks ok.  It also looks like he might have some irritated skin from his diaper so we ordered some cream for him. Overall he is doing really good, we are told by every nurse we have that he is the cutest baby in the unit.
We also got to see Zoey again today, my sister brought her and her cousin Ryan to the hospital to eat with us. I was running around the halls with the two of them chasing me and hiding from them. They were having a blast trying to keep up. Zoey fell a little behind and then vomited all over the floor. I went to pick her up then she puked a bit on me. Then Bryt went to pick her up and Zoey started trying to lick her cheek...What is she learning without us?... It was fun seeing her and hard to say goodbye as always. She was having a really rough time so I rode around in the car with them for 10 minutes hoping she would fall asleep. She never did and I had to leave her crying again. That has got to be one of the hardest parts of this. We both miss her and can not wait to have our little family back at home. She still has no clue about Michael and still isn't allowed to come to his room to visit. We tried to show her videos and pictures but I don't think she really gets it.

Moving Forward

Michael is doing great today! Bryt has been nursing him every 3 hours and he is feeding quite well.  They took out his feeding tube and asked us to replace 3 feedings a day with some fortified breast milk. This is Bryttney's milk, with some extra calories, protein, calcium, and fat in it. He is still not getting all the nutrients he needs and doesn't appear to be gaining weight the way they want him to. Based on our experience with the fortified stuff so far, he doesn't seem to like it. Hopefully he eats it now that he has an appetite.
They also took out his picc line this morning. This was a central line going into his left arm and going straight to his heart. They were using it to give him medicine that needed to mix with the blood quickly.  It's exciting they took it out because they have a high risk of infection. He does have a little skin irritation where all this stuff was taped onto him, but he looks really good.  We are most likely going to be moving upstairs this afternoon. They just need to clear out some of their rooms up there. Bryt and I are so Proud of him, he is such a strong little guy. These kids are amazing, he has already endured so much.
We also got to talk to the social worker today, she brought us some flyers and print outs for support groups and resources. It's so crazy to think we are part of this whole other world most people overlook. We now have a son living with congenital heart disease, he will have it the rest of his life.  We have been so warmly welcomed  and are already building relationships in this new community. There are kids his age that have already had heart transplants. It's a crazy and awesome thing to be a part of. These families are amazing. I think it's time I stop being so selfish with my life. If Michael were born with a normal healthy heart I probably would have continued my normal life, oblivious to all these amazing people living around me. Thank you all for your wonderful support, this has been a roller coaster ride so far and I'm sure there is more to come.  Bryttney and I are so grateful to have such amazing families and friends. You are all wonderful.