Friday, May 4, 2012

Heaven Has New Angel

Thank you all so much for your thoughts, prayers, and offers to help us out during this difficult time. Lucas Ryan Wemyss passed away around 4pm on May 3rd, 2012. He was 6 days old. The time I spent with him, however short, was absolutely precious.

I had left off 3 days ago, the day before we were to meet with all of Lucas's doctors to discuss his treatment and prognosis. He was of course having a lot of "preemie problems" that virtually all  24-weekers (as they say in the NICU) have. Problems regulating his temperature, blood sugar, oxygen, blood pressure...basically everything. Every organ system is immature and needed help to function. Wednesday night was a particularly bad one for him. He was constantly having trouble with just about everything. They spent all night just adjusting up and adjusting down and ultimately ended up having to do another blood transfusion, putting him back on his blood pressure meds, upping his oxygen again, started antibiotics, among many other things. An echo of his heart also indicated that he had PDA. The heart of a fetus in the womb has a different structure that allows the blood to bypass the lungs since they are not breathing in air. After birth, this hole is supposed to closed up. In preemies, this hole is, of course, still open and can cause problems. It can be treated by medications or surgery. We didn't discuss this too much at the meeting because the brain bleeds were more of a problem than anything.

 About those...There are 4 grades of these bleeds (known as IVH ...intraventricular hemorrhage). Grade 4 being the worst. Ryan could tell you details about it and what that actually means down to every last definition. He did a lot of research about it to try to understand what happened to our son. I won't get into that. Bottom line...very very bad. Lucas had two grade 4 IVH's (originally we were told 3 and 4, but the neurologist actually said it was more like two 4's).  They went on to talk about what that would mean for Lucas's future. Now, I know that doctors are not always right...I know that they can not look into the future and give us a 100% guarantee about anything. I know several of you told me stories of other premature babies who made it and were fine. I don't know anything about whether those babies had the same severity of bleeding that Lucas did. Only a neurologist can make that determination. And there is a HUGE difference when comparing a 24 weeker with, say, a 28 weeker. Any extra time in the womb makes a BIG difference as to the outcome of the child. That being said, understand that just because you knew a friend of a friend who had a preemie...blah blah blah. That doesn't mean a thing. Each baby is different. Each family is different. All we could do is listen to our doctors and decide whether or not to trust their expert opinions. We spent a lot of time talking with them and we do trust their opinion. I work with doctors all the time...I've learned to put trust in them. Again, they can not predict the future. What they can do is use their many years of experience and knowledge to help them determine what is most likely to happen. They see the history of a baby, they see the images and scans, they see what these babies must endure, and they see some of these babies come back years later and witness the end result. They told us flat out that he had severe brain damage. They said he WILL have (with no doubt) severe disabilities in the form of or similar to cerebral palsy. While they can not pinpoint exactly every problem, they assured us that he will eventually lose the movement in his legs and be wheelchair bound. Likely lose the use of his arms as well. Mental retardation. Other possible outcomes ON TOP OF those included blindness, speech impairment, seizures, heart and lung problems, among other things. He would need constant care and would always have various problems. While the degree in severity can differ, we were able to get at least a "ballpark figure" of what we were looking at. I mean, are we looking at occupational and speech therapy and special schools? Or are we looking at 24 hour care by myself or by a nurse to do everything...feed him, bathe him, change diapers for the rest of his life? Will he ever be able to take care of himself and eventually maybe even learn to live independently? The answer was no. He would need constant care for the rest of his life.

We next talked about our care options for Lucas. One option was of course to continue treating Lucas and keep going down this road as long as we could and hope for a chance that he comes home someday. Another option was to sign a DNR. They mentioned that there is always a possibility that he may never even code at all. This NICU is considered one of the best in the nation...top 15 infact. They have some of the best doctors and very sophisticated equipment and are more capable of keeping babies alive than other NICU's. They typically catch problems before they ever become a problem and allow a code. Being less than a week old, who's to say what kind of problems we would have run into down the road (more IVH's, seizures, infections, bowel perforations, the heart problem, so on). Maybe the machines could have kept him alive no matter how sick...maybe not. That was one part of what made all this so hard...not knowing. All that being said, a lot or  most doctors won't give you an opinion on what they think you should do. But these doctors actually felt so strongly in their predictions that they felt comfortable giving us their recommendation. They both said that they would recommend a "redirection of care". Meaning that we take Lucas off his IV's and breathing tube and make him comfortable and let him pass peacefully. This was the hardest thing I've ever had to hear and think about.

The doctors walked out of the room and Ryan and I both absolutely lost it with sadness. We cried hysterically. We'd just sat through an extremely difficult conversation and were faced with an IMPOSSIBLY tough decision. I can not tell you how much we struggled with this decision. It was not a quick and easy decision by any means. We discussed our thoughts at length with each other as well as with our social worker Suzanne, and the chaplain Judy. I personally struggled with the decision not only as a mother of a handicapped child, but also in the aspect of what is right or not right in God's eyes. Upon speaking with Judy, she said something that helped a little. She said she believes that God would LOVE that fact that I AM struggling with the decision and that I should focus on that. I also struggled with guilt and feelings of selfishness. It took a lot of talking to my husband and even some to our social worker to help me think through these racing, jumbled up thoughts and emotions in order to find my true feelings.

In the end, we did decide to let Lucas go. I did not want to see my son have to live a life where he can't run with friends, play sports, and just be a normal little boy. What kind of life is that? If we so chose, I could have taken care of my baby boy, no matter how difficult, I could have. And I would have loved him with all my heart. It would have put a lot of strain on our little family...financially, emotionally, yes...and I didn't want that either. But what I couldn't stand the thought of is 5, 10 years from now, looking at my little boy and knowing that he can't live the life that he deserves. If they had told us that there was some chance at a normal life, or at least somewhat normal...something to hold on to that would make us think Lucas could someday be a happy child even with health problems...I would not be sitting here typing and crying and missing my baby boy. I would be sitting at the NICU watching him and saying "What can we do now to fix this? Because I'm going to take my baby home."  That part just wasn't in the cards for us. There was just too much brain damage...too much of a chance that he would not be happy with that kind of life.

I had a hard time deciding whether or not to tell you all that we had this decision to make, or to just keep it to ourselves and have everyone continue to believe that he passed without a choice. Many of you keep saying how much of a fighter he was and how he just couldn't fight anymore. I found that was bothering me so much because I believe he may have still had some fight left in him and I felt like I had cheated him out of trying and taken that fight away from him. In fact, yesterday I had to pull the doctor aside again and ask him again and get assurance from him again about his opinion of Lucas's future. I guess I had a hard time believing it the first time I heard it. He said again, and more clearly this time, that being a father himself, this is the decision he would make for his own children. In continuing my conversation with him about the difficult night prior, I was reminded that his fight is a hard one and a long one...and to get to what? Another long and hard fight. Sure, maybe he still had some fight left in him but what's wrong with taking that burden off of him? I didn't think of it that way until I talked with someone today who's been right where I am and faced with the same decisions. I certainly trust and respect her thoughts and advice. She has been such a help and I'm so glad she has allowed me to confide in her. She told me that I didn't take away his fight. I gave him a life of no pain. Eternal life. She said that I'm a hero for it. You know who you are, so thank you again for those words. It helps tremendously.

So, on Thursday. We got up early and made our way to the hospital. I spent a few hours by his side just watching him and praying. He kept stretching his little arms out,covered in bandages and tubes, but adorable nevertheless. Stretching out his little bruised up legs. We had a lot of fun over the past few days talking about his feet. He had his Daddy's feet...down to the tiniest feature. When we were good and ready, we first had them take him out of his isolette with his breathing tube. The hospital offered us a professional photographer at no cost to come capture a few moments for us. I'm so glad she did. I will treasure those pictures forever. I sat with him in a rocking chair. I was very overwhelmed when she first laid him in my arms. It was both an incredibly wonderful feeling, while also being completely heartbreaking. I rocked him for a few minutes and decided that I couldn't do it any longer because I was becoming blind with love for my baby boy, and for a minute I started to forget why we had made this decision. Next, we waited in a private room with a hospital bed that I laid in to be comfortable. They brought him to me, all wrapped up in warm blankets, but no more breathing tube. I absolutely could not believe what I was doing. I just couldn't believe it. But I was doing it. We sat there and cried, and just stared at his tiny, tired, beautiful face. The chaplain was in the room and she said some beautiful words and prayers. My mom was also with us. I don't know how long we were in there. It felt like forever, but also not nearly enough time all at once. Lucas passed away very quietly and peacefully in my arms with his daddy by our side. We said our goodbyes and gave him kisses and it was over. They gave us our pictures, and a keepsake box with his blanket, locks of hair, casting of his feet, footprints, thermometer, tiny blood pressure cuff that could fit around my finger, among other things. We gathered our emotions and left the hospital. That was the story of Lucas Wemyss and how he changed us forever.

We are still in CA for a few more days. I'll be able to fly home soon. We've left the option open to have more children in the future. It's going to be a while before we're ready. But now, more than ever, we both want a baby who is happy and healthy. This is the hardest thing we've ever had to do and, I hope, will ever have to do. We still talk about him a lot and will continue to do so. What a blessing he has been. He has opened our eyes and made a difference in a way that we couldn't even forsee. We are having him cremated so that we can keep him with us. We decided that every year on his birthday, which happens to be the day after our anniversary, we will make it a point to take a trip together to celebrate Lucas. Maybe we'll find a special place to scatter his ashes someday. Please continue to keep Ryan and me in your prayers as we try to carry on with our lives. Thank you.

Jessica Wemyss