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!

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.

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.

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.

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.