Saturday, April 25, 2009

ECMO

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.

3 comments:

  1. YES, SHE WILL GET THROUGH THIS!!! We will all continue to pray and pray for her. She is a strong little girl and a fighter and she will pull through this!! You are an AMAZING, STRONG mother. I admire you so much. Stay Strong and Have Faith in the Lord. I will not only pray or Juliana but for you and your family. Please keep us posted.

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  2. I am so sorry to hear that Juliana is not feeling well. You are such a strong, wonderful, positive mom. She will get through this. My Kinnick had a return to the hospital after she initially came home. I heard the same words. The words went in one ear and out the other. I didn't see it any other way then Kinnick coming home. She came home after a month. It was a rocky road, but she's a fighter and so is Juliana. They don't make it this far without being fighters. Juliana will fight to get better. I'll pray for Juliana and the doctors. Please keep us posted.

    Shanon

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  3. I'm so sorry you all have to go through this. I love the picture of Juliana you have at the top of the blog -- such a happy little girl.

    It sounds like she's getting the best possible care from her doctors and from her mommy. We'll be sending lots of positive thoughts in your direction.

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Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.