No More ECMO! :)

The past couple of days have been very crazy full of ups and downs. On Sunday they had to change Joseph’s ECMO machine to a new one because the one he had since the day he was born was full of blood clots and the more blood clots the more chances of them going into his brain (very scary, I know.) They also tried to ween him off of ECMO on Sunday, but its was a complete failure. Joseph didn’t do well with just the conventional ventilator and no ECMO. On Monday he got an ECHO and it also showed no improvement, after Sunday everything just kept going down the hill little by little. Yesterday, we had a meeting with Joseph’s Doctors and got the worse news possible. They had told us that his lungs weren’t developed enough for him to survive and said he most likely won't make it. Sky and I were devastated! We didn’t want to give up but the nurses and doctors had done all they can. I cried and cried all day and all night yesterday, I didn’t want to loose my baby boy. The plan was to ween Joseph off ECMO today (Wednesday) using a more powerful ventilator (high frequency ventilator) no matter if it worked or not. Today was officially my due date and I just couldn’t imagine him dying the day he was supposed to be born. Knowing that your child is going to die is the most horrible thing that can happen to a parent.

After 15 long and rocky days on ECMO, Joseph had his second surgery today to take him off ECMO. Yes, no more ECMO!!! When we arrived at the hospital this morning his primary doctors and nurse were smiling. They told us that Joseph made an amazing improvement overnight. His stomach had lowered a little and his lungs had finally expanded. What a MIRACLE!!!! Both of his lungs are working and the ventilator is supporting them. Please keep your fingers crossed for him because there is still a chance things could go south while he is off ECMO. We are just giving his body a chance to adjust to the new conditions. We are still hopeful because he is a WARRIOR.

'Joseph's Domain' with new ventilator + nitric oxide (left) before ECMO removal

Joseph's primary nurse Lauren is such an amazing person. She has taken such good care of him from day one and is a big reason he is alive today. She loves him and is dedicated to his survival and well being. Many many thanks go to her.

Here is Joseph right after surgery (to remove ECMO)

Joseph and the high frequency ventilator

We have been by his side through it all and will continue to be there for the rest of our lives. Here he is gripping daddy's hand.


I have nothing but GREAT things to say about all the nurses and doctors at Children's at Egleston. Joseph also has a neighbor named Oakley who was born on 2/12 with CDH. She is also a little warrior and is battling this monster right along side Joseph. Oakley's parents are great people and we have been supporting each other in the hospital. We are so lucky to have new friends going through a similar situation with us. Please send your prayers out to Oakley and her family as well.
Thank you all for your support and prayers for Joseph and our family once again.

~Carla