Owen Update

Hi all,

I told myself I would be in bed at 9:30 but I am rescheduling that to 10pm...So better type fast!

We have been doing well. I have had a few goof ups lately, 2 to be exact. I pulled Owen's tube out one early morning when grabbing him out of the box bed to nurse him. It must have gotten caught on the blankets or something...and came almost all the way out. Since it was probably dangling in his throat we just pulled it out. Chris wasn't happy about having to reinsert the tube at 5 in the am. He really isn't a morning guy if you know him even the slightest bit you know that!

This picture was taken also right after the tube was out. I always feel the need to take photos of Owen with his tube out but of course he was sleepy. Me snapping 15 photos probably didn't help Chris's mood...

After a busy week and weekend of hanging with friends and family we decided to impose the first Britton family pajama day...THE BEST IDEA EVER! It is like a sabbath- we will observe it again but probably not weekly. We did stay in pajamas all day long, relaxed, went to the garden, and otherwise didn't leave the house. We just had good quality family time. I ended up goofing things up again. If you haven't seen us at feeding time, we are still having some issues breastfeeding. Sometimes O will nurse for 10 minutes, and othertimes for 2. Sometimes he won't nurse at all, even if he is hungry. His circulation, inconsistency with initial nutrition, and elevated respiratory rate all contribute to this issue. So I tend to do whatever I can to make this time longer. I will hold weird poses if he is latched. I will continuously move around if that is what he likes. I will do lunges if that is what he likes. I will do anything for this kid! So around lunchtime on pajama day I was changing positions during breastfeeding and I went to stand up from the couch and I stepped on the port of Owen's tube and yanked that puppy clean out faster than flies come in the screen door... Talk about a bad momma moment...hour...day... He did appear to be mad but that subsided quickly... Chris was understanding but offered some good advise that I need to chill out and be okay if his feeds vary. We may just need to coil it up and tape it to his clothing somehow. That is getting ridiculous....

We had a great appointment at the cardiologist on Monday. I will likely not explain this correctly but in a nutshell Owen may possibly not need another OHS this year. At 6-7months of age (or later if he is doing well!!) We will likely go down to UCSF and they will cath him and see if closing off his shunt affects his O2 sats. If his sats stay normal/acceptable (around 85%) then they will remove the shunt and he may not need further intervention. This was news to me because I thought that the Glenn was the next move. But because of O's interesting anomolous pulmonary veins the Glenn wouldn't help him. We thought that he may be treated at a single ventricle kiddo but Dr Rivera (aka "the riv") thinks that at worst Owen would be a 1.5 ventricle kid! Hard not to get too excited, and being cathed at such a young age also carries risk.

Anyway, had another fun day preserving tomatoes with Tracy. Had to can because this momma is out of freezer space. Will sign off. Hope to blog very soon about our garden investment, output, and the cost savings...I have kept detailed records of the harvest. I am so interested to see what the total outcomes are-I know the tomatoes are in the 400's+!!

Love and Hugs to all,

Chels