Extubation Part II

He did it again! Xavi was able to come off the vent yesterday afternoon and go back on CPAP. So far, so good. They were also able to pull his pic line out, the line through which he's been getting IV nutrition. That means that his sole source of nutrition is now the milk he's getting through his feeding tube every 3 hours. It was a big day!

Still Recovering Well

We're happy to report that Xavi is still recovering well. He surprised the doctors and nurses by how well he went through the surgery and how well he came out of it too. His chest tube came out on Saturday afternoon and he's been more comfortable since then. The amount of medication he's on is gradually decreasing, as are his vent settings, meaning that he'll hopefully be extubated in the next few days. Thanks again for your prayers and support.

Xavi was garbed with his first piece of clothing to keep him warm during surgery. They kept everybody sweating too with the temperature in the OR set at 80 degrees.

This is the apparatus they used to transport Xavi from the NICU to the OR. We were glad to see that his weight (currently 2lb 8oz) was within its limit.

Success

Quick note on Xavier. His PDA ligation this morning was successful. A surgeon from UM came in and was in and out in about 10 minutes. I won't attempt an explanation myself. He is doing surprisingly well by all accounts, best exemplified by his respiratory which has not wavered. He will probaby have a tough weekend as he recovers, and ups and downs are expected. Thank you all for the continued support in all the various ways. Prayers have been received. I'll post later with pics as time allows. Pace, Bill

Ligation tomorrow

No new pictures today, just an update. After Xavi's weekly echocardiogram (ultrasound of the heart), the doctors came to the consensus that he does need to have the duct outside of his heart surgically closed. He had two rounds of medication and that helped make the duct smaller, but it didn't finish the job. After a week on CPAP, Xavi is still doing well, but is having to work harder and his lungs are more wet (from the blood that flows back to his lungs through that open duct instead of back out to the rest of his body) and he is more tired and still has no reserve to tolerate any extra stimulation.

All of these factors, combined with a slightly enlarged heart, made a convincing case for doing the ligation. A surgeon from U of M will come to St. Joe's tomorrow and do the surgery at 7:30 a.m. Xavi will have to go back on the vent and it may be some days before he's strong enough to come off it again. He'll likely look and act more sick for the next few days as he recovers from the surgery, but once he recovers he should be able to do much better. Camilla had the same surgery and improved by leaps and bounds afterwards. Other parents and all of the nurses and doctors have said the same too: the ligation can be the big hurdle for these little ones, and once they are over it they really take off.

Thanks in advance for all of your prayers for Xavi and the surgical team tomorrow. We'll let you know how it goes.

Eva's 6th Zero

We celebrated Eva's sixth Zero day on January 21. After she was born, we were counting up the weeks to get to 40--full term--and to her homecoming. We were looking so forward to her due date because we would, in a sense, be reaching zero and then we could start counting her age forward from there. Our friends in Florence and my mom helped us throw Eva's first zero party on that January 21, complete with a sparkly pink 0 candle.  We've continued the tradition with all the girls of celebrating both their due dates and their birthdays, helping us to remember and be grateful for how far each one has come.

Hello CPAP

Strangely, the CPAP apparatus looks worse to me than the ventilator. However, though it hides more of him and may look worse, this is a major step ahead for him and his lungs. This was a very sweet day. We spent a long time in touch.

Goodbye ventilator

He's off! This is one of the last days Xavi was on the ventilator. This past Thursday, Jan. 17, after 24 days on the vent, the doctors and nurse practitioners decided that he was ready for the next step. They pulled out his tube and put him on CPAP, the next step down in breathing support. This is a huge step for Xavi, and so far, so good!