March 22, 2009

YEAH! – our son’s ventilator is officially OFF! So not only do I get to celebrate seeing one more HUGE win for Caden, but now David will have to shave! For those who didn’t read the previous blogs David wasn’t going to shave until Caden came off his ventilator. We know that sometimes HLHS kids sometimes need to return to the ventilator based on how hard breathing on their own will stress their heart however right now it looks good. Caden was breathing along with the ventilator today and the doctors we pleased to see him squirm around, fuss, and take a giant breath on his own once they disconnected him.

David here…. As a parent we are super excited to see more of his beautiful face now that the blue and clear tubes are no longer obstructing our view. Even though his face is peeling and red from the tape it is a wonderful sight. Caden Marshall is really doing well. Melissa and I feel that he really understands that he needs to approach each stage as a fight and that he is doing just that. Caden does not fuss a lot unless he is really poked at and then he pushes and moves his arms and legs with pretty good force. After Caden is off the ventilator for a full day we can begin to try and feed him orally. He took mouth treatments today with Melissa’s milk and seemed to suck it right up so we are hopeful he will take right to feeding. The doctors and nurses have warned us that children that spend any real amount of time on a ventilator, and that are fed through a tube, will likely not take to feeding again orally right away. They mentioned that children could develop an aversion to feeding orally because they may associate things in their throat as uncomfortable like the ventilator and tubes were. We will see. One of the things that CHW does that none of the other hospitals we researched is allow HLHS babies to feed orally prior to the Norwood procedure. Here they feel that if they allow the babies to feed prior to surgery they will reintroduce better to it post surgery. I guess we will see tomorrow.

Caden had some more visitors again today which he, and his parents, really enjoyed. We know it is not easy to find time to drive all the way up to the cheese capitol of the world but are really glad that you did. We are so lucky to have the friends and family that we do. The cards, letters, emails, blog comments, and visits really are fantastic so thank you. Tonight we start on our own (so to speak) as all the g-parents have officially left the state. However we know that they are just a phone call away if we need them. We also understand that we could not have done this week without them.

Now that Melissa and I have a child of our own we understand the lengths parents will go to take care of their children. We have also seen this most recently through our parents over the last ten days. Melissa and I talk about how difficult this must be for our parents…….Think about it. Melissa and I are in a helpless situation in the sense that we can not make our son better. Our parents are in the same situation. They can not protect us or make our situation better. We understand that must be very difficult for them. Parents inherently want to protect their children from what pains them yet, in our situation; neither generation can do that right now. I will tell you this though. There is comfort that comes from your parents. We see that Caden reacts to Melissa and I and calms down when we cup his head and his feet in our hands. I suppose, and hope very much, that Caden feels the same type of comfort from our touch as we do from our parents. Moms and Dads, thanks for the unending support.

Much love,

David and Melissa