12 weeks - Happy Birthday!!

Every Monday we celebrate another week with Madden. Every Monday I wish him a happy birthday. Every week is another little victory.

Happy Birthday Madden! 12 weeks old! You have been through so much in such a short time and I am so so so proud of you. You are so strong and so inspiring. I am so proud to be your momma.

My plan today was to blog about Madden's 12 week birthday. I figured I would have nothing else to talk about and today would just be another day of grumbling along in the paediatric intensive care unit. I was wrong.

When I got into Madden's room this morning the nurse told me that the plan is for Madden to have another cardiac cath on Thursday so that they can do a biopsy of Madden's heart. This is not in my plans. I feel like Madden needs a break from all surgeries so that he can have the opportunity to heal. I don't feel like he has been given that opportunity yet. The problem is that Madden's heart is thick. Thicker than normal even for all the stress and extra work his heart has been put through. This makes the cardiologists think that there might be another reason for this thickness of his heart.

I asked the intensivist that is on in the unit this week if another echo could be done prior to the cath to potentially get some answers that may allow us to forgo the cath. Initially he said "no" but after more discussion he said the request wasn't unrealistic and he would ask the question on cardiac rounds tomorrow morning. I am hoping that the echo will show that since his surgery the thickness in his heart is unchanged or better yet a little less thick. This would then allow us to forgo the echo and know that Madden just needs time for his heart to remodel and heal. A cardiac catheter is another surgery and is quite invasive. I am not convinced that Madden's heart is ready to undergo more stress. He JUST stopped having arrhythmia's...and these are a sign of an irritated heart.

The problem is this, if Madden does have another condition and that is causing the thickness of his heart, he will need a transplant. If this is the case knowing sooner than later is best because once you are listed for a transplant the clock starts ticking.

This is not a path I want to have to go down. Though one of the doctors did tell us that his gut feeling was telling him that he feels that this is the road we are going to walk. I still believe that Madden's special little heart is going to work.  It just needs time to figure out how to work.

This morning when I looked at Madden I noticed that I could start seeing his little jaw line coming back. It may sound funny but this is my favourite feature of Madden's. I love his little chin.

Little chin ------>

Also Madden was able to finally open both eyes today! This means the adema is getting better. However...I bought Madden a hat and put it on him today. When I put my fingers on the back of his head to lift it so I could get the hat on, I could feel how squishy his head is in the back. It made me not even want to put the hat on. The squishyness is all adema. The poor kid. The fluid is pooling at the back of his head because he is always laying on it. He needs to get some fluid off. I know this is happening because Madden does have a negative fluid balance every morning. It is just a slow process. It's all a slow process.

Madden I am sorry you are going through all of this. I wish I could do something to make it better. This is not the life I wanted for you but I can promise you it won't be like this forever. Things will get better. You will have the life I want for you. I love you as big as the sky and always will. xox