All babies do is eat, sleep and poop...

All babies do is eat, sleep and poop...this is so not true. Babies are amazing little beings. While you are snuggling them they are busy learning how to regulate their temperature, regulate their heart rate, find their voices, digest food, make platelets and blood cells and so so so much more. Be so proud of your baby. (S)He is doing incredible things right before your eyes. On top of all of this my baby is also trying to heal his little heart and adjust to how his heart now functions. He is truly amazing.

In the world of Pediatric Intensive Care babies misbehave by dropping their sats, dropping their blood pressure, having a high heart rate etc. Today Madden was very misbehaved...again. It's hard to believe because he looks so sweet and innocent...but he likes to keep everyone on their toes. This morning Madden needed lots of fluid to be able to keep his blood pressure up. I really don't understand why we are having continual blood pressure issues, but we are. Then again this afternoon Madden needed more fluid. His pressures are all over the place - super high then way too low, then back to normal. It just doesn't make sense to me. Then on top of the pressures Madden started to desat into the 70s and couldn't come up regardless of how much oxygen he was being given. At the same time the wave form on his left ventricle line changed. Madden was not a happy baby and had 3 doses of extra sedation before finally settling out. During all of this a chest xray and an echo were ordered. The chest xray showed that the breathing tube was sitting a little low. They pulled it out a bit and increased his settings on the ventilator and he settled out. The echo was done but it was hard to get good pictures of his heart because of the adema and all the dressings he has on his body. They were checking his valves to see if they had started leaking. The cardiologist said he was unable to tell but there was for sure not massive leaking.

Around 5pm his primary, Dr Aditia came in the room to see what had been going on all day. He looked at the wave form of his LA with the meds that were running through the line turned off and said he thought the wave form looked ok. Then told us he was going to go look at the results from the echo that was done. He looked at the results and came back to talk, I told him he should just do his own echo because the other cardiologist couldn't see much...and guess what, he did! This is why he is my favorite person. He truly cares about Madden. He saw that his valve was not leaking at all, 0%. WHich is huge for Madden. Great news. His pulmonary valve is leaking a little but that's ok, they say everyone's leaks a little. His heart is functioning really well - beating properly, squeezing well etc. However it isn't yet doing it's job great yet...not profusing well, not able to regulate temperature, not able to stabilise pressures etc. The other problem is that Madden's heart is still very thick. Once his heart muscle is able to relax a little this should change. I think his heart just needs time to heal and then start working well.

The other thing we learnt today is that Madden's platelets are not normal. They are bigger than they should be and they have some granules in them that should not be there. What this means we do not yet know. Only one other family has ever been reported to have this same problem. Rocky and I both have to get some blood work done to see if we also have it. If we do then the testing that needs to be done can be done on one of us instead. I am hoping this is something that is happening because he is so sick but that it will get better with time. He doesn't need any more problems.

Keep fighting little prince, I love you as big as the sky.