One more flight for my Little Superman

This Saturday was the worst day of my life. On December 11, 2010 at 12:06pm my sweet, loving Superman took his final flight to heaven. Here are the details of our final day together. I apologize if it’s too detailed (or minute-by-minute). I don’t know how much everyone wants know.
I came into the hospital on Friday afternoon to snuggle with Ethan for a few hours. We sat and gazed in each other’s eyes while doctors, nurses, friends and family came into the room to share in their love for him. I played some music (Josh Groban and Andre Boccelli) and I tried to sing a little to him. In the afternoon I talked to the nurse and asked if there was any way I could spend the night with him. At this point I figured the worst they could say is no. I wanted to spend every last waking minute I had watching him, kissing him and telling him how much I love him. Brittany (Ethan’s day nurse-and a great one at that) said that wouldn’t be a problem at all and grabbed some pillows and blankets to get ready for the rest of the night. Stephanie and Alix grabbed some stuff from my house for me and headed over to visit for a while. They brought Madaline with them to meet her brother for the first time outside mommy’s belly. Wow! What an experience that was. I can’t tell you how ecstatic I was to have BOTH my babies in the same room with me for the first time. We decided to do a mini photo shoot with the twins. We undressed Madaline and put her in bed with Ethan and watched as they sat calmly with each other as if that was exactly where they needed to be. It seemed so natural to them, as if they never left each other. Madaline lay calm (for the most part) and Ethan had his eyes open the entire time with his oxygen level at room air. Not one bell or alarm sounded the whole time. We took a bunch of pictures of them together and then I had the amazing experience of holding both of them at the same time for the first time. The words “Bitter Sweet” can hardly define how I was feeling. Brady came in a little later and held them both as well as tears engulfed him. The pictures turned out great and I have shared a couple below.
After the family left I got myself comfortable. About an hour or so later, Danielle (Ethan’s wonderful night nurse) came in to relieve me for a minute. I stepped out for a moment, came back and she said that he wouldn’t stop shaking the whole time I was gone (which he wasn’t doing when I was holding him). I sat right back down as we watched his eyes roll around looking for me. The nurse was amazed to see such a reaction from him. She put him back in my arms and he calmed down and fell asleep for a while. Danielle and another nurse sat and talked with me for a while and it started to get late. They left so Ethan and I could try to get some sleep, but all I could do was stare at him and watch to see him open his eyes and breathe. Kind of obsessive on my part, but I knew I would never get the chance to see it again, so I soaked it up. 6:15 rolled around and I had them put him back in bed for an hour and a half so I could get a little sleep and freshen up for the rest of the day. After I got myself together we put him right back in my arms. By this time he was awake again and I resumed my repeat talk of how much I love him and I was going to miss him and sang him a prayer to start our last day together.
Brady showed up at about 9:30am with Madaline and we sat staring at our 2 beautiful babies.
10:00am came and a photographer came in to take some professional pictures of all of us as well as Pastor Michael Hayes from St. John’s Lutheran Church to help us get through the next few hours. As the hour went on, Brady and I had the family coming in to see Ethan and wish him love on his journey. In the next hour Dr. Bixby, and the nursing staff came in to brief us and make sure we were ready for the next steps. As if there is ever a right time to start the process, the staff asked if we were ready to begin.
At approximately 11:15am the process began. Ethan at this point had fallen asleep already. They started off by removing any unnecessary IV’s and give him some medication to make sure he was relaxed as well as to make sure breathing was not a struggle. After about 10 minutes or so, they came in again and removed the breathing tube and the feeding tube. I was already crying so hard but found more tears in the back of my heart to cry harder. After a few minutes they gave him another dose of medication as I sat there holding him and crying. The family came in and out of the room to kiss him and say goodbye for now and tell Ethan how much they loved him. All the while the nurses were coming in to check his heart to see if it was still beating. By then, I knew he had passed away in my arms. They called the doctor in one more time to check his heart as she called the time. 12:06pm. And somehow I found more tears to cry harder.
By now, some of Ethan’s nurses had come in (on their day off) to be there for Ethan and for us. They came in to say goodbye and tell him they loved him as well. I sat and held him for a long while because I didn’t want to let him go. I didn’t want that to be the end of our time together. Why him? Why this wonderfully sweet precious boy who never had the chance to do so many things? To be a little boy and run around, say funny things, get into trouble and make lots of friends. I just don’t get it.
After a long while Brady thought it would be best to go and try to get some rest. I set Ethan down for the last time and told him goodbye asking him to please visit me in my dreams. The rest of the day was a blur. I laid on Stephanie’s couch and stared off into a daze. I can’t believe this is all real. Did this really just happen? Brady, Madaline and I went home later that night and I cried myself to sleep.
Yesterday I woke, went to church and spent the rest of the day with my mom, Stephanie and Alix. I spent the day trying to keep my mind busy, but still feeling like I needed to call the hospital and check to see how Ethan was doing. I did pretty well until I got home and literally fell to the floor and started crying. Brady picked me up and tried to encourage me that Ethan was in a far better place, running around and doing all the things he would have never been able to do here with us.
We woke up this morning and we went to make all the arrangements for Ethan’s service. Since the mortuary is in the Orange Circle, Brady and I had lunch and walked around for a little. I spent another day trying to keep my mind busy and doing a little “Retail Therapy” / Christmas shopping. I am just going to say, I will be happy to play the role of The Grinch and Scrooge this year. I am so not in the holiday mood.
Well, after all is said and done I am trying to keep a somewhat positive attitude. I am grateful that the process was not drawn out and that he was given back to God in a swiftly manner for both his sake and ours. I hope you don’t think that’s bad to say.
I also have to say that I am so grateful that we were given the blessing of 3 months with this wonderful boy. Some people aren’t given that opportunity and I realize that we were very fortunate. As hard as this all was, I wouldn't have given it up for the world.
I can’t close this posting without recognizing and giving thanks to the wonderful nurses that Ethan had during his time at CHOC. I am sorry if you don’t want your names mentioned but, Lindsay, Danielle, Brittany, and Andrea (and Karin, Ethan’s DT)... If you are reading this, I can’t tell you how thankful Brady and I are for all your help. You KNEW Ethan and showed him so much love and took care of him when I couldn’t be there. You took care of ME. You listened to me cry, answered my many questions. You supported and guided me through this. And for that I am eternally grateful. I miss all of you already and feel like not only have I lost a son; I have lost a second family. I truly hope I can stay in touch with you as I have grown to love you all. Thank you.
SERVICES:
We have made arrangements to have a memorial service for Ethan this Friday, December 17, 2010 at 3:30pm. Followed by a reception. The service will be held at St. John’s Lutheran Church in Orange, CA. The address is 185 S. Center St., Orange, CA. 92866. We invite you to come and share in the celebration of Ethan’s life with us. If you are questioning whether you are welcomed or not, know that we want you there. I know that my Little Superman has touched a lot of people’s hearts in a very short amount of time and we welcome the celebration of love with friends and family members alike.
Pictures:
A few last pictures of my sweet boy

The Hardest Decision

I am not going to sugarcoat it... This has been the worst 3 weeks of my life. This blog will be an update entirely on Ethan. As I wrote in the last posting, I didn’t want to jinx all the wonderful things that were going on with Ethan. But somewhere along the way, something happened.
The week before Thanksgiving started well. We discussed “Sprinting” Ethan off of his CPAP machine since he was doing so well on it and he was showing a lot of improvements. This is where they take him off the CPAP and put him on straight oxygen for a short period of time to see how well he responds. They gave him a bath one night and he had the CPAP machine off for a half hour and just gave him oxygen and he did very well. He was a bit tired after, but overall did well. He was also at full feeds and the doctors felt we needed to add more calories to his diet to help him gain more weight. Then the Wednesday before Thanksgiving Ethan had to have some blood work done to start figuring out some of the other issues we needed to tackle. He didn’t seem to tolerate that very much and started having more spells. My first thought was that he looked pale and needed another transfusion. Since he was starting to produce his own blood cells, the doctors wanted to wait to do this. If they gave him another transfusion too early, then it would send a message to his body not to produce more blood cells in the future. Well, the spells continued and he ended up having to go up on the CPAP machine to a higher support until that Saturday night when all started going wrong.
I did my normal checking in and found out that Ethan had coded in the middle of the night and they had to do chest compression to bring his heart rate and breathing back up. They kept an eye on him the rest of the following day. However that Sunday night he coded again 2 more times and they felt the only way to save him was to re-intubated him again. Also they stop his feeds again in fear that it wasn’t making the situation any better. BACK TO SQUARE ONE! All that he accomplished got flush down the toilet.
Coming out of the holiday weekend, I talked to the doctors and we decided further airway tests needed to be done to figure out what was causing all of this. Also, we needed to get a better look at his hips since we weren’t seeing major improvements in his therapy. In the meantime, he has been doing well on the ventilator. Last Thursday they did an ultrasound of his hips and Friday they did a couple procedures to look at his airway.
The results from his ultrasound showed that Ethan has subluxation of his hips with dislocation as well. In talking with Ortho, they stated that physical therapy, rehab, splinting his hips and many other procedures is lower on the scale of needs. They can do all of that. However, it will take several years of therapy and there is no guarantee that it will work or that he will even be able to walk. Also, it will not be easy on him and he will be in pain.
Then the doctor gave me the test results of his airways. In his left nostril he has a lesion that was blocking he camera and they couldn’t get it down far enough, so they were going to get an Ear, Nose, Throat doctor to come look at it. Babies breathe through their nose, so that could be one of the reasons he is having a hard time breathing. In his throat the pictures showed that his airways were extremely floppy and that very red with irritation. In his lungs showed a white substance, which was more likely milk, which means he is having severe reflux. Then at the base of his lungs his airway was extremely floppy and would clamp down at any stimulation, which doesn’t allow air to get in.
What does all of this mean? Well, he would need a tracheotomy for his breathing and a feeding tube surgically placed in his stomach for food. Both of which he would have for several years and again, there is no guarantee that this will fix the issue. If we proceed with this decision, he is going to need 24/7 nursing and training care when he comes home to us. Not to mention of course the pain he will be in.
After hearing all of this I thought it would be best to get all of the specialist, the doctors, nurses and staff together to put all the pieces together. There is so much care that he is going to need and we needed to figure out what is going to be best for Ethan. Ultimately we do not want our son living a life of pain and suffering. So we had that meeting today and it was the worst couple hours of my life.
They started out by telling us that Ethan has an abnormal chromosome in his DNA. Now, this would not be a problem if either Brady or I had the same chromosome in our genes. To run this test would take another week to 10 days. Then neurology told us that his head is not growing which means that his brain is not growing. The reason our heads grow is because it is making room for our brains. Also his muscle tone is very bad which leads them to believe that he has severe Cerebral Palsy. He has a delay in his reflexes and his movements are entirely abnormal. From their diagnosis they feel that Ethan would not have any quality of life. He will not comprehend normal activity and will be confined to a wheelchair. Lastly the Pulmonogist said that based off his evaluation doing a tracheotomy would probably not help his airway issue. If his brain is not growing and functioning properly, it more than likely will not send a message to the lungs to grow on top of the fact that he needs constant pressure in his airways to keep them open. This kind of ventilation support cannot be done in a home setting. And lastly, his leg issues that I previously mentioned.
After all the doctors stated their case it was said to us that the entire medical team feels that it would be in Ethan’s best interest to discontinue care. He does not show that he will have any normal life and it will be filled with lots of struggle and far too much pain. Brady and I kind of felt that this meeting might bring us to this kind of result. We have been talking and crying the past few days about what is best for Ethan. I don’t want to play God and make these kinds of decisions. I don’t want to, I should have to be the one to close those beautiful big eyes for the last time. We just needed a sign from God that would help lead us in the right direction and that direction presented itself to us today. We believe that the best thing we can do for him is to give him back to God….
If you are crying right now, don’t worry. I am too. I can’t tell you how hard it is to write these words and bring you this news. He is my little Superman who has fought so hard and been so strong, but we can’t let him suffer his whole life. I never would have imagined that we would have to make this kind of decision.
We are still working on the details of what will happen but the plan is for us to surround Ethan with our love and support on Saturday and allow him to pass. I can’t tell you how hard this is. At this point I am at a loss for words. I will try to keep you updated to what is going on. Please check back daily.
In the meantime, please pray. Pray that my little Superman knows how much we love him and for the strength and courage. I know that God is gracious and merciful and will accept my precious boy with open arms and an open heart. I just hope he gives us the support we need to get through this. Thank you.
Here is a couple pictures we have taken in the last day or so. He is so precious….