So here we are back at Yale in the worst condition I have ever seen Juliana. She is on ECMO (extracorporeal membrane oxygenation) which is a process of oxygenating blood outside of the body. She has swelled up quite a bit and is almost unrecognizable. Her head is very big because when they went in to cannulate her veins there was a bit of trouble. The preferable location to cannulate would be the main vein and artery on the right side of the neck. This is the same location that her Central Broviac line was placed and unfortunately the vein on that side has some stenosis or narrowing. This makes this vein not a eligible for cannulation for the ECMO. So next they went to the left side of the neck. The surgeon was successful at placing to cannulas on this side. The down side is that the two major veins that drain blood from the head and brain are now either occupied or too damaged to function. So the smaller veins in the neck will have to learn to pick up the slack so to speak. This however is going to take lots of time. There are some major risks associated with this issue. The first which is a major risk with ECMO is bleeding in the brain because of all of the heparin that is used to prevent clots in the blod running through the machine and the cannulas. The second is clotting. With a lot of blood settling in the brain because there aren't enough large exits, we face the issue of the blood that is there waiting will form clots. So our very creative surgeon decided to place a third cannula to act as a large vein to allow blood to exit from the head. This was successfully placed yesterday with no complication. Unfortunately there is already a lot of swelling in her head and this will not change that. It will however prevent this from getting any worse. Over time the swelling should go down but it will take lots of time. We anticipate that she will be on the ECMO machine for at 2-3 weeks. The goal is to give her lungs ample time to recover and then slowly wean her support from the machine.
I wont be posting any pictures. She has double in size and it's not pretty at all. Somehow I am able to look past everything that is going on with her but I know for others it's just not the same. My husband is still having a hard time seeing her this way. She is back at in the Newborn Special Care Unit at Yale so we know a lot of people there and they all remember Juliana. It's nice to be surrounded by so many people who know and love Juliana. They have seen her through the toughest moments in her life. I guess it's only fitting that we would be back in the same unit. Once she is off the machine however she will return to the PICU. Under normal circumstances she would not be allowed back in to NBSCU but because there is another baby already on another ECMO machine we have to be on the same floor. This is mostly because of logistics. ECMO is a pretty big production and requires a perfusionist to be at the bedside 24/7. She is being monitored by the doctors of the PICU but some of her old doctors are still chiming in on the situation. They all really work well together which gives me great hope. I feel like I have been the coach and the moral booster for the team. Through all the concerns and fears the doctors have I still feel in my heart the Juliana will pull through this. I know what she is capable of and that she has beaten all the odds time and time again. So when they say that there is a 50% chance that she won't come off the machine and will not survive, I see that glass half full. There is a 50% chance that she will come off the machine and survive. She is no ordinary kid and I spend a lot of time reminding people that she is as strong as strong gets. She goes down quick but always gets back up. She will get through this.