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..

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.

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.

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.