Aiden's Final Days

Monday, August 22nd.................Aiden, Greg and I had a rough weekend. Over the weekend, the doctors tried to trial Aiden off ECMO again and after only 35 minutes his oxygen levels (postductals) were in the 20's. Oxygen levels should be in the 100's. Aiden was shunting.....Pulmonary shunting causes the blood supply leaving a shunted area of the lung to have lower levels of oxygen and higher levels of carbon dioxide (i.e., the normal gas exchange does not occur). We were called over by the hospital to come be by Aiden's side. Greg and I both had extreme anxiety as we ran over to the hospital because we were not sure what we were walking into. It was not a good day. Aiden's was unstable all day. He was not happy at all. On Sunday, Aiden was very cranky and did not want to be touched because of the Saturday trial. All day long his blood pressure was high and then it would drop drastically. Greg and I grew restless with the doctor's plans and wanted to know what the next steps would be for our baby. Greg and I called for a meeting for Monday and we had it set-up for 2pm with the a list of doctors that we requested be present: Dr. Ruiz (Pediatric Surgeon) Dr. Myalischka (Pediatric Surgeon), Dr.Thatch (Fellow Pediatric Surgeon) ChistyAnn (Physician's Assistant), Jeannie (Prenatal Coordinator),  and Janet (social worker). There were a couple of attendees present as well as one of our primary nurses, Julie. Greg and I had a list of questions to ask the team of doctors so that we could figure out the next step in Aiden's care. Before the meeting, Dr. Myalishka found Greg and I at Aiden's bedside and the look on his face was not his usual "happy" one. I felt a pit in my stomach before we sat down for our meeting. Dr. Ruiz did most of the talking and we never made it to our questions because we were told at the meeting that after all that they had done thus far for Aiden that nothing was working and that there was nothing else that they could do for Aiden. We were told that Aiden was no longer making progress and and that we were prolonging the inevitable. Aiden would never come off ECMO because his pulmonary hypertension was so severe and there was nothing else they could offer him. The PPHN was severely affecting his lungs and heart and they had no other options. I don't think I heard half of what she said but Greg repeated it all back to me. I don't think I would have believed Dr. Ruiz unless Dr. Myalishka did not repeat the same words to me "prolonging the inevitable". Dr. Myalishka was the Pediatric Surgeon that Greg and I met with on our first meeting at the University of Michigan to discuss which hospital we were going to come to to give birth to Aiden. He is an amazing surgeon and won us over. I knew it was bad when not only Greg and I were crying but also our primary nurse and the prenatal coordinator too. Greg and I left the meeting numb and left the hospital to figure out what we were going to do and try to digest the information. We took a long walk in the gardens next to the Ronald McDonald House and thought about our lives without Aiden. I called my family and asked them to come down to say good-bye to Aiden. We talked with the doctors and nursing staff about our plan for Aiden and that we wanted to hold him while he passed. We spent the rest of the evening with Aiden and I sang him songs and read him books. We had him baptised by the Chaplain. The nursing staff closed off our section of the NICU space and gave us privacy to hold Aiden as he passed. We took so many pictures of our sweet baby boy. It was the most difficult time in both of our lives and I will never forget being able to sing to him and hold him tight as he made his way to Heaven. As he was placed into my arms that night he looked like he was in pain and as soon as I held him it was as if he was in the place he had always wanted to be...in his mommy and daddy's arms. Greg and I held him for hours and then at 12:41am on Tuesday August 23rd Aiden James Reed passed away. I hope Aiden finds so much joy in Heaven and is doing all the things he could not do here on earth like laugh, cry, run, and jump. I hope Aiden is looking down on us and keeping his family safe.
We held a service for Aiden on Saturday August 27th. It was a day that I hope parents do not have to endure...planning a funeral for your three week old son. I know he is in a better place and he is no longer in pain but each day is a struggle. We have planted a tree (thanks Lindsay, Grant, and Jude) for Aiden in our backyard and put flowers, engraved stones, and angels for our memoir for Aiden. We also planted a Japanese Maple in our front yard as another tribute to Aiden.
Each night we tell Aiden we love him and miss him before we go to bed. Cole doesn't quite get that Aiden is never coming home and tells me that Aiden in still in Michigan when I ask him where his brother is. Sometimes he tells me he is in heaven but he doesn't understand what heaven is after we have talked about it and even read stories about it. If any other moms who have lost children that have other children have tips on how to explain this better to my three year old I am open to suggestions. Cole has started to tell me that he wants "another Aiden" to come home. We have put up pictures in the house and plan on dedicating a wall in our home to only Aiden. There isn't an hour that goes by that we don't think of Aiden and wish he was here and I am sure this will never change.

Thank you everyone for your support and prayers through all of this.