Jinx

I didn't want to jinx our chances of having to go back on oxygen for Christmas so I postponed any updates until now.  We are officially off oxygen for eleven days and we are holding strong with saturation's ranging from 85 to 92 percent.  I wasn't sure we would make it to Christmas based on our past tests but this time Lucy was ready.  I can't begin to tell how awesome it is to have her 'free' for most of the day.  She technically is not tube free because we still have the NG tube, but her feedings are only a half hour long.  In total that adds up to four hours a day, two of which she is usually sleeping.  I really didn't think being on oxygen  at home was that bad, but know that I have a taste of the good life I don't want to go back.  Traveling is even better!  I took her two Jewel the night before Christmas Eve and I brought just her.  I even took her out of the car seat and let her sit in the front of the shopping cart.  I think she thoroughly enjoyed it too.

No cannula

Christmas Eve we spent at my parent's house and Christmas day was spent at my in-laws with a quick stop to see Great Grandma before heading home.  Mike and I were unsure how both trips would play out. especially since Lucy's stranger danger radar is in high gear.  But it must have been the presents or the attention because Lucy could not get enough.  She smiled through both days and didn't cry once even when she was held by someone other than Mike, myself or the grandparents.
We also found out that if she is really tired, she'll sleep anywhere.  During Christmas day festivities, she went down like a log on two fleece blankets and slept for two hours.  That kind of nap is almost unheard of in our house.  Maybe we need to rethink her bedding and crib situation.

Christmas baby

Friday we headed back to the hospital for a follow-up x-ray to make sure there was no effusion and being off oxygen did not have an impact.  We got word today the x-ray was clear.  Woo hoo!  This will mean that we can start discussing decreasing some of her medication at the next appointment.  We will also start talking about g-tube surgery again.  Since our potential move will be in January (both our loan and the buyers loan is still in underwriting) and Lucy's birthday is in February we may try to push surgery until March.  Three more months with the tube on her face.....ugh!  The only way it will happen sooner is if her cardiologist deems it necessary.

What Lucy will look like when she is eventually 'tube-free'