Surprise

What a day!! It seems as though we try to get past one day and then we get taken by surprise. Surprise!!! It started off very well with little Elli doing very well, considering the invasive nature of the weekend. She had leveled off last night and the night shift had gotten orders if she did so, to try to wean her off of her Dopamine, which seemed to be the only thing to keep her pressure up. Low and behold they got her completely shut off of it and she has done stellar all day even had her mean raise between 5 and 8 depending on time. Elli seemed to know she needed this.

While Cassi had gone on a trip to pump, as a part of her 3 hour ritual, it gives me some alone time with my little girl. While I was talking to her some of the doctors had came in and were discussing the situation of Elli and ultimately our family. Without Cassi here with me one of the surgeons gave me some important news on his way out of the room. With Dr. A and Dr. C discussing "rounds" their plan of attack for the day. Seeing that I was clearly distressed by what I had heard Dr C asked me to sit and listen. The doctors discussed the events of the weekend, and numbers, a lot of numbers, then Cassi walked in just as she did now so we are doing a computer pass as she types way faster than me.

After much discussion between the doctors and surgeons, and after multiple reviews of Elli's daily x-rays and ultrasounds, the final decision is for little Elli to have her repair surgery while on ECMO. The doctors have discussed the severity of her defect and because it is such a major one, they have ruled out the possibility of weaning her off ECMO before the surgery. Naturally when they told us this, I freaked out thinking that they aren't even going to give her a chance to prove herself. After Brian helped me calm down and I came back to reality, and the doctors explained their reasoning I started to understand. Because of the amount of bowel in her left chest is so great it has caused her heart to shift to the right side. So every time Elli tries to take a breath, her good lung ( right side ) compresses her heart causing it to not be an effective pump. Because the heart and lung are basically in battle for the same area, neither are able to work effectively enough to sustain her life. So even if they did try to wean Elli off ECMO, it would never work. So at this point, having her repair surgery on ECMO is the last and only option.

The risks of doing Elli's surgery on ECMO are very great, but with this being the only option, the surgeons and doctors have decided that Wednesday will be the day. Elli is theoretically not getting any better just lying around on ECMO since there is no plan to wean her off before the surgery, so at this point there is no reason to waste any more time before the repair. Over the next few days the plan is to keep Elli quiet and as stable as possible to prepare her for her surgery. They will be decreasing her Heparin (keeps her blood thin) enough to try to prevent bleeding complications after surgery but keep it high enough so that no clots develop in the ECMO system.

So as for now the game plan is for Elli to have her repair surgery some time on Wednesday, the surgery team is going to meet with us tomorrow to discuss the benefits, risks and possible complications and hopefully set an approximate time, pending no emergency surgeries arise. Elli will move into the adjoining surgery room either tomorrow or very first thing on Wednesday morning as long as everything goes to plan. There is another baby on ECMO in the surgery suite, but he is scheduled for a surgery on Wednesday also, but he will be going to the actual operating room. So after he leaves and the room gets a good scrub down, Elli will be on the move.

Of course this all came to a shock to Brian and I, we were not expecting her surgery this soon. While we knew that she would have to have the surgery some time, it is kind of a double edged sword. On the one hand this surgery will be the only thing that will save her life, but on the other hand we will get some real answers about the severity of the defect, the size or lack there of lungs and their ability to sustain life. So clearly we want her to have the surgery, it is just so scary to think that the surgery that will save her could also be what tells us if she can make it on her own. So with this news, we are asking for lots of extra prayers not only for Elli, but for the surgeons and nurses that will be holding our little Elli's life in their hands.

I guess that's it for tonight, it is all just a little overwhelming. We are just going to try to spend as much time with Elli as we can before her repair praying that she has the strength to get through the surgery and have the lung capacity to make it. Please keep Elli in your thoughts and prayers over the next couple days. Brian, Cassi and Elli