The little things are the big things

Before Madden was born I, like most people, took for granted all the little things in life that we forget to be thankful for. Over the past few months I have learnt to really cherish the little things in life. Here are a few things that I will never take for granted again:

• Being able to hold your baby
• Touching your baby skin to skin
• Being able to get up in the night to check on your baby
• Going somewhere and taking your child with you
• Being able to open your eyes
• Peeing
• Growing
• Feeding your baby...or even having your baby be able to eat

It really is the little things that we take for granted that mean the most.

A couple nights ago I was at the hospital late. It was a rough night for me because leaving your baby every night is hard. It's not natural. It happens to me often that when I get to my car I can't leave and I just sit in my car and sob until I can finally get myself together enough to drive home. But some nights are worse than others and some nights I sob the whole way home. Then when I get home I call the hospital all through the night to check on him because I am unable to walk into the other room to make sure he is doing ok.

A lot has happened since my last post. Madden had a broncoscopy done to see if his airways were damaged from having the breathing tube in for so long. So far so good. They did find a lot of old blood but think it might be from an old stomach bleed. They also cleaned out all the secretions he had while they were in there.

Madden also had a new pd catheter put in. It's about a 5 inch tube inserted from one side of his stomach cavity to the other. I am sure it is pretty painful.

Both the surgeons doing these surgeries were worried because Madden is so swollen. He is swollen on the outside and just as swollen on the inside. I am sure he is in a lot of pain. You can tell when he is in pain sometimes cause he will slam his little hand into the bed. Though he doesn't move too much because his skin is so tight with fluid.

Madden is also barely peeing. He went for a good 4 days at least without any pee. Just the other day he started peeing a few cc's a day again. At least its a start. Madden's feeds are now at 5 mls per hour of breast milk- not too bad, of course this goes through a feeding tube.

A few new meds have been started:
Amniodorone to help with the heart arrhythmia's that Madden was having. Five different kinds of them - PAC'S, PVC'S, Bijimenys, SVT's and PVSB'S. I think that is plenty. Though over the past 24 hours Madden has not had any arrhythmia's. Yay.

Esmolol to help slow down Madden's heart and help it relax. His heart is very thick and needs time to properly fill before it squeezes. We are hoping this will improve his cardiac output as well as give his heart time to heal and get less thick. They are allowing his heart rate to be as low as 90...this is a little uncomfortable for me but they say as long as his blood pressure stays stable (which it has) they are happy. Drs are a little worried that the thick heart is another condition Madden may have. I believe that it is thick from all the extra work it has been doing and that it will go back to "normal" once it has time to do so. Everyone is hoping that this is the case.

Madden also now has some skin breakdown in his sternal incision. It is honestly a hole that allows you to see right into his body...not like a scratch with skin beneath it. So strange to see and not great for infection prevention. The surgeon that came to see it today thinks it will heal on its own eventually.

Have asked a few different doctors a few different questions lately and here are a few answers:

The only thing I know for sure is that Madden is so strong. He is so strong. Look at everything he has been through and he just keeps going.

And...

In my opinion you will be here for at least another 2 - 3 months. Yuck....my goal is still to have my family all together at home for Christmas. I think it is doable and would be the best Christmas present ever.

Madden has been getting platelets and blood everyday. They think he has something wrong with his platelets...a condition that makes him bleed and clot and is hard to control. They don't know this for sure yet but his platelets are different - bigger and have granules in them and he doesn't produce as many. This could be his age and the stress he has been through. Nobody is sure.

Madden I can't wait to have you home where you belong. Keep fighting little prince. You will get through all of this. I love you as big as the sky. xox