Emersyn's Special Heart❤

Emersyn was diagnosed with Tetralogy of Fallot when Alexia was 20 weeks pregnant, she has a classic case so she was told her fill repair would be between 3 and 6 months. She spent 4 days in the NICU because her umbilical cord was wrapped around her neck 3 times. She came home and the family were told not to let her get too upset but to treat her like a normal baby. She got monthly echos and gained weight nicely so at 5 months before the school germs got too bad her parents scheduled her surgery for September 5th. They said she would be away from her family for 4-6 hours. Her surgery last 13.5 hours and the surgeon said it was a difficult surgery and it was shocking. She was a standard pink tet. That night she was bleeding a ton so they had to go in and explore, they realized they had to stitch a few spots and that slowed the bleeding. The next day they went in and did a cath, it was discovered that the whole that he had such a hard time patching was still open but she is too sick to do that surgery right now. She had been on ECMO for 6 days when they decided to move the ECMO to her neck and close her chest. She handled that well, they did another clamp trial to try and get her off ECMO but she failed. At this point the ECMO has caused bleeding on her brain, her entire left arm is black along with her feet and legs. The hope was to get her to Saint Louis children’s so we could get her off ECMO and onto the ventricular device to give her more time to rest. The right side of her heart wasn’t pumping at all for the first 5 days then each day had gradually gotten better. After their last clamp trial on day 10 they talked to Saint Louis again and since now her kidneys are struggling and are on a machine that is hooked to the ECMO they are pretty much just giving us no answers. Saint Louis doesn’t want to take her because of her kidney function. Now our hope is that Lurie children’s hospital in Chicago will take her and give her a chance.

Since this Lurie did accept Emersyn and they were life flighted to LURIE in Chicago where they found out her diagnosis wasn't correct. This is the current update on Emersyn...

So basically right now she’s too sick to have the heart surgery she needs to give her a chance. They are going to do a blood exchange to give her healthy blood for 3 hours a day for 5 days (CT on day 3). At that point they know what surgery they need to do but it’s very very risky. She does not have Tetralofy of Fallot. She has DORV with TET features. That is way more severe than TOF. She will go back on ECMO for a bit after surgery id everything goes well because she does need to rest. We have to ask a million questions before surgery because it’s a really risky one but it’s the only way to give her a chance. He can’t promise that the surgery will go okay but he has done it before and seen it work multiple times.

We are asking for many prayer for this family and little girl. Alexia hasn't been able to work for many months and DJ has been missing some work as well during this time. The food for Alexia is not covered at Lurie. We are asking for donations to help with monthly expenses at home and during their stay at Lurie. Thanks in advance. Updates on Emersyn can be found on her Facebook page. https://www.facebook.com/profile.php?id=61551029588813&mibextid=ZbWKwL