Leo continues to be well. His chest tube was removed this morning and he was a brave little trooper. No pain meds were needed as he thought several drops of sucrose were good enough to deal with the discomfort. Except for the PICC line which will come out soon, he is now one unfettered kiddo. 

It pleases us to share that there is not a whole lot to report today. Leo was taken off the ventilator this morning and has done well without it. Throughout the day, his nurse has slowly removed his fluid lines and multiple IV catheters. 

As the day came to a close, Ben and Kami were finally allowed to see their little guy in the CVICU (cardiovascular intensive care unit). It was difficult to see Leo back on a ventilator. However, it was explained to us that this was necessary to prevent an undue burden on his repaired artery. With any luck, Leo will be weaned off the ventilator overnight or tomorrow.

After a long four hours, one of Leo's nurses just came out into the waiting room say the little guy's surgery was a success. Ben and Kami will have to wait another hour before they are able to see him, but we are relieved that he is doing okay. 

As his recovery progresses today, we will keep you posted. Thanks for all of the love and well wishes you have directed our Arizona way!!!

At 1:05pm (AZ time), a very calm Leo was wheeled out of NICU and rolled toward the 4th floor in preparation for his heart surgery. His parents and wonderful NICU nurse, Noelle, accompanied our little guy on his journey at PCH. 

We will wait for news on the Cardiac Unit's 5th floor waiting room. More to come...

Leo is doing well this morning. He did require a blood transfusion overnight as his red blood cell count was down. This was unsurprising as he has had quite a bit of blood drawn over the past two weeks. 

Leo is doing well and has had many visitors today. We thought you might enjoy a sampling of pictures from these lovely visits! Leo is one popular little dude.

P.S. Thanks to Aunt Krissy for delivering munchies and organizing her friends and our family with the "Roti food train."

We are happy to report that Leo has had an uneventful day today. He continues to rest up for the big event on Monday. 

Many friends and family have been asking about the specifics of Leo's surgery. Here are a few details the cardiac surgeons have shared with us. 

Today was one filled with blessings. To begin, our family finally heard the words we have been waiting for during the past two weeks; Leo's coarctation surgery has been scheduled! 

The big day will be this Monday, September 11. While any emergencies over the weekend could preempt Leo's place in line, we hope his surgery will take place on that morning as planned. 

Today was a relatively unremarkable day in the NICU for Leo. He ate, gazed up at whomever held him, and slept. In typical infant-like fashion, this pattern was repeated all day long. 

The only odd part of the day occurred late this afternoon. As usual, Leo was unhappy during the hot-packing of his right leg (necessary to help decrease the previous swelling and irritation from the PICC line). He began to cry and then really pitched a fit.

Terrific news!!! Leo transitioned to room air this morning. This means he is no longer attached to a ventilator, CPAP, or supplemental oxygen source. 

Add to that, the youngest member of the Roti family is now allowed to eat like every other infant via mom or bottle. This is an exciting step in Leo's road to successful surgery and recovery.

Leo started his day bright and early with another echocardiogram (not an ultrasound as I had indicated yesterday). This test found nothing remarkable which was good to hear. 

We are reminded that patience is a virtue as we continue our vigil with Leo. Our little guy remains in stable condition and the cardiologist assures us that the coarctation surgery will eventually happen. Of course, our question is...when? With any luck, we may hear some news tomorrow regarding scheduling. 

As the saying goes, no news is good news. Today was one of the first since we arrived a week ago that did not include any new tests, procedures, or needle sticks for our little guy. Leo was able to enjoy the loving embrace of his parents as well as several of his grandparents throughout the course of the day. What a pleasure it has been to hold our tiny munchkin once again! 

Around 10pm last night, a specialized IV team here at PCH inserted a PICC line into Leo's right leg. This central catheter was sent up his leg and through the major vein to his heart. The end of the catheter rests near the entrance to his heart and rapidly delivers medication and fluids as needed. 

Our good news continues today. After a restless night, Leo settled down this morning and the respiratory team decided to wean him fully off the ventilator. At 3pm, our little guy had the endotracheal tube removed and cried out loud for the first time in four days. His hoarse little squeak was beautiful music to our ears.

Slow...but sure. 
That would describe our day with Leo today. His numbers continue to improve; blood pressure, oxygen saturation, respiratory and heart rates were being carefully monitored as medications were gradually weaned off and/or added back as needed. At this point, the epinephrine has been discontinued (although they have had to continue the prostaglandins in order to keep the PDA open and maintain equal blood pressures between upper and lower extremities). Add to that, the latest blood culture has shown no new bacterial growth. These are both good things!

Leo's adventures continue today. We learned that he has developed a staph infection which has to be treated. This latest bump in the road will delay his ability to receive a PICC (peripherally inserted central catheter) line. This type of catheter will be beneficial in avoiding the placement of many peripheral IV lines in his arms and legs. However, we will have to wait 48 hours after a negative blood culture in order to proceed with the PICC line.

On August 23, 2017, Leo Randall Roti was born at Verde Valley Medical Center in Cottonwood, AZ. This 8#5oz. beautiful baby boy seemed to be doing well except for some slightly rapid breathing and not quite pink feet. At Leo's 24 hour well-baby check, the hospital staff determined that there might be an issue with Leo's heart.