Our Little Doodlebug
Finally the day that we were so afraid of but so joyfull at the same time was here. Burt and my dad was the first to go up and visit with Drake. They came back down with pictures for me. I was so amazed at how beautiful my little boy was. He had this beautiful head of black hair. I couldnt stop saying " MY BABY HAS HAIR !!!!) My first born had fuzz and it was blonde. My son Shawn,My mom and dad, my sister and her girls, My cousin hope & her fiance, & my friend Dara were there to welcome our little guy.
My cousin shawn and her fiance gant came to visit that night. ( gant works at ochsner where I delivered. ) I tried to get up to the NICU at this point. It was about 9:00pm. I was so sick from the combination of the drugs and the emotions going on inside. They went up to see him and came back down to let me know how he was doing. He was stable. At about 5:00 am I woke my husband up to go upstairs. I FINALLY got to see my baby. Erica was the nurse taking care of him. She later became one of my favorite nurses. He was gorgeous ! All I could do was stare at him. Erica let me know that so far he is stable. She was so nice to me, I felt comfortable leaving my son in her care. We knew that most cdh babies have what they call a honeymoon period. Its the first 24 hrs after they are born. The next day Dr Adolph came in and let us know that Drake was having difficulty keeping his saturation levels up. He let us know that Drake will probably have to go on ECMO. Ecmo is a heart and lung bypass machine. ( see CDH page )
So at around 6pm on February 19th drake had to be placed on ecmo. His heart and lungs needed a break so they could heal themselves. Drake also had PPHN.(see CDH page) In other words the valve that usually closes in a babys heart at birth didnt close when drake was born. Drake had his good days and bad days on ecmo. My cousins fiance gant worked the ecmo machine a few years ago. He came back up to sit and work drakes pump. It really meant alot to Burt and I that he was there. He let us know in terms that we could understand how drake was doing and how everything worked. I dont know if gant and shawn will ever know how much we appreciated them. Drakes oxygenater pump on the ecmo machine had clotted off. They had to change it out which meant they had to take him off for a few minutes to replace it. Burt and I had gone to the hotel room and the phone rang and the Dr had told us what had happened and what they had to do. We immediately rushed back up to the nicu and waited to see our son. Dr. Adolph came out and let us know that Drake did great. He was impressed how well he did off of the pump. Drake stayed on ecmo for a few more days and finally after 15 days, March 5th they were able to wean him off and do his repair (surgery) off of ecmo. Surgery went great. Dr Adolph told us that Drakes stomach, large and small intestines, spleen, and bowels were in his chest. ( YIKES !!!) He was able to put it back where it all belonged but Drake needed a gortex patch to close up the diaphram. At this point drakes chances of survival were great. His PPHN was subsiding and his lung function was great. Burt and I were the happiest people around at this point. We couldnt stop smiling and letting people know that our little fighter was winning his battle. Drake was doing great. He was steadily improving. He had to have a chest tube inserted after surgery. It was there to drain the usual fluid after surgery. He also had problems with his blood clotting to much. So everyday he had to have his IV in a different spot. He was also on Heprin. Well Drakes chest tube kept draining. They soon had to put one on the right, because the fluid had now started building up around and compromising his right lung. The doctors decided to send the fluid to the lab and have it checked. The results came back saying that drake had developed chylothorax ( see cdh page ). The doctors decided to put him on a med that treats chylothorax, Octriotide. Well after a few weeks on this med nothing happened. Drake was still draining fluid like crazy. Dr Adolph decided to have drake go through another surgery to put a stint in his artery. It had clotted off. So he had the surgery and It went well they were able to get the stint in after about 5 hrs. We waited to see if that would help the drainage stop. It didnt the fluid just kept coming. Dr Adolph then said that he could try one other surgery. He would try and surgically close the valve. Well when the Dr came out he said that surgery didnt go as well as he would have liked it to go. He was able to stop some of the drainage but not all of it. All we could do was wait and see. This was April 3rd. Well he was very swollen after having these surgerys so close together. Saturday he was struggling to keep his saturation levels up. I knew in the back of my mind what was going to happen if this didnt get better.
Well Sunday morning I called the NICU to see how Drake was doing and the nurse let me know that he was on 100 % oxygen and his saturation level was in the 70s. We immediately rushed up to the NICU and the doctor let us know that Drake wasnt peeing and that he had some fluid inside his lungs. He tried one more med to try and get him to pee. It didnt work so we had to make a decision. We could put him on a larger vent which would only prolong things or let our Angel go. Burt and I just said enough is enough. We chose to hold our beautiful son and let him know how much we loved him before he left. When the nurse gave him to me It was a bitter sweet moment. I finally got to hold my baby for the first time and I had to say goodbye at the same time. He held my finger so tight. In that moment he was gone. I think he was waiting for me to get to hold him before he left. I will never forget that moment. They cleaned him up and took the tubes out and brought him to us in a room. Burt , my mom , and I held our Angel for the first and last time. My sister and dad got to say goodbye.We kissed him and the nurse took him back. I never thought that I would be leaving that hospital without my baby. I guess GOD had greater plans for him.
We decided to have Drake cremated and bring him home where he belongs. We had people over to celebrate Drakes life. He will always be in our hearts.
Drake Alexander Michel
February 18, 2008 - April 6, 2008