Before...and After

Elli's before and after x-rays. The After is on the Left side and the Before is on the Right side.

We finally got to look at some of Elli's x-rays today and I got the opportunity to take get a before and after picture. In the before picture, the cloud looking stuff on the Left side of Elli's chest is stomach and bowel. We found out from the surgeon that Elli's defect was so extensive that she was missing all of her posterior diaphragm, and the entire left side and had only a very small ridge anterior. They used an Alloderm patch and sewed it into the muscles of the chest wall and to the very small area of diaphragm on the front side of her chest. With this extensive of a defect we knew that the liver was "up" but didn't know to what extent. 2/3 of Elli's liver was in her chest cavity and actually went past midline and was behind her heart pushing on it during her development. This was much more that originally thought. Since the liver was so contorted, the inferior vena cave (large artery that supplies blood to the lower extremities) had been twisted, a possible reason for the low blood pressures. Now that the liver is back down where it should be, the doctors were concerned that there was restricted flow to the lower part of the body, and by an ultrasound of the liver yesterday, it showed decreased but adequate blood flow. Since the liver was in such an contorted angle, they believe that it had been getting congested causing it to become swollen. Because the blood flow from the spleen travels through the liver on it's way back to the heart, the spleen also had blood flow restrictions causing it to become swollen also. This is the main reason why Elli has a silo. Her liver was so large and swollen that it was the only organ that would fit back into the abdomen. So far Elli's profusion to the lower extremities looks good and all her liver enzymes and studies look normal. The nurse today told us that on paper Elli looks "textbook" and all her numbers look awesome.

Also by the chest x-rays, in the before picture, Elli's heart is very much on the right side of her chest and on the after, it is already making it's move towards midline. It should be pretty much under the sternum with the ventricles angling to the left side. The right lung in the After picture is becoming more inflated in each x-ray and the doctors are pleasantly surprised by it's size. The light shadowy looking area on the left chest in the after picture is fluid, NOT lung. This is not uncommon, the doctors expect the body to fill in that space with something, and as long as it is not blood, they are happy. Just to clarify even the very dark dot on that picture is NOT lung. The lung "nubbin" was very hard to see, even when the nurse pointed it out to us. It is a very light area near the Left clavicle. The doctors also noticed on the chest x-ray the size of the heart overall. Dr. K is concerned that Elli's heart is on the small size because of the amount of liver that was compressing it. Basically the right lobe of the liver slid up through the defect and around behind the heart causing it to become compressed. This may also be part of the reason for the low blood pressures. Each time the left ventricle would try fill, it was only able to expand to a certain point because of where the liver had been developing. The doctors are concerned that the left ventricle may also be on the smaller side, so they did an extensive ECHO of the heart today, but we don't have any results yet. Humm...is everyone overwhelmed with medical jargon? Sorry, some of this is repetitive, but I just wanted to try to get it all explained since I only touched on bits and pieces of it in earlier posts.

As far as the Silo goes, Elli will probably have it for quite a while. It will take some time for the liver and spleen to reduce in size and Elli will need to continue to grow to make more room in her abdomen for all of them to fit back in. Elli has had an awesome day, she is peeing like a champ, which shows great profusion to the kidneys. Elli is still showing no signs of bleeding. Her vital signs and blood gases have looked great all day. She didn't even get any blood this afternoon, only platelets. Basically Elli has not gotten any more blood products that she had been receiving before surgery. ECMO babies tend to "use up" blood and the machine tends to "eat up" the platelets. Some babies require blood and/or platelets every 6 hours but Elli has been on the trend to get blood and platelets once a day, and usually at different times.

Elli was awake off and on a couple times today. She was all bright eyed when Dr. K came to speak to us this afternoon. She was awake and looking around without being uncomfortable or agitated. She has not been cutting out the pump at all and her blood pressure has remained awesome. Currently it is 62/43 with a mean of 49...Way to go Elli! The doctors are still shaking their heads at our little lady. But Dr. K did make a good point this afternoon. He said that each of these CDH babies write their own book and it is his job to use his experiences to read what they are writing not use his experiences to try to guide them. That seems exactly what they have been doing with Elli, she writes a new page everyday, the doctors read it and decide what actions to take by what she dictates. We have been so impressed with the doctors here at CMH, they have been so great with Elli and trying to figure out what this little lady needs.

Brian and I are looking forward to a boring weekend of staying stable. We are hoping that Elli continues to look as good as she does. The doctors warned that after surgery, there are a lot of fluid shifts and the fluid tends to seep out of her cells and into her tissues causing her to get very puffy. Because this happens they are forced to give fluids to replace the shift, causing even more edema, which is a vicious cycle. So far Elli has had no extra edema other than her head. Her poor little head, the back of it looks like a little block, but as far as her entire body, she looks great.

Ok this post is getting excessively long, but I think think that I have all the details hashed out. Well it's after eleven, I think that Brian and I are going to stay until around midnight and then call it a day. It has been such a refreshing and uplifting day, which I think both Brian and I needed. I was saying last night that I felt like I was more tired than the night that I had Elli. I guess that we were just both getting worn down. Brian is now humming a little tune to Elli standing next to her bed, and it is so cute! He is such a proud Papa! Guess that's it for tonight. Let us know if you have any questions or just don't understand any of it. Thanks again for all the continued support, thoughts and prayers...I am pretty sure they worked yesterday. Now we are moving onto other prayers ~ lung growth and function, decreased liver swelling, and good reports from the ECHO and so on and so forth. Gosh Elli sure does ask for a lot, but her dad and I know she's worth it! Cant wait to hear more good/unexpected news! Take care...good night. Brian, Cassi and Elli