Friday, March 30, 2012
D-Day part 3
As I was wheeled into Archer's NICU room my heart broke seeing my sweet little boy hooked up to all sorts of tubes and machines. It just wasn't right. It wasn't fair. Someone so tiny and so precious shouldn't have had to be burdened by such things and I wanted to see his sweet face. Archer was such a strong boy right from the start. He fought so hard to spend that one day with us. It was so intimidating, all the machines. My fingers itched to hold him, to touch his soft skin, but I didn't want to disturb Archer. They were keeping him sedated, but I didn't want to make anything worse. I was content to just stroke his tiny hands and feet and rub his back and head and stare at his sweet, perfect angel face. How my heart swelled with love and pride for my baby boy. He was so strong. Archer was having difficulty breathing on his own and actually stopped breathing several times while I was in the room with him and I can't remember a time I had ever been so scared. The NICU team was amazing though. Always reassuring us and going about caring for our son in such a calm and loving manner. I, however, was anything but calm. I was only able to stay in the room with him for a little bit. I mean, I'd just had a baby for goodness sake. Not that I cared about me one single bit - I just wanted to stay with my baby boy. Eventually though, with the reassurances of the NICU staff that they would call me as soon as ANYTHING happened, I reluctantly went back to my room to rest (if you can call staring at the walls and ceiling pretty much freaking out resting). I'm not going to lie, there's a lot from that day that was really fuzzy. I wish that I would have gotten off my behind sooner and wrote this all out so that I wouldn't forget a single moment, but life here has been kind of crazy, and lucky for me I haven't forgotten a single moment of that day that involves being with my little Archer. I remember being in my recovery room my myself for a little bit. My husband, sisters and mom had all left to be with the baby or help to take care of the other kids and I was left for an hour or so to myself. I honestly can't remember anything but wanting to go back to see Archer. That's all I can remember. Just getting to see him. Praying that he would be ok until the next time I was able to be there with him. I honestly don't know what I would have done had he left this earth all alone. My heart can't take the pain of even the thought of it. Not then, and not even now. I didn't want my boy to be alone for even a second and I tried to be at his side as much as I possibly could. Later that afternoon (after I had come back from visiting Archer again) I met Josh and a few other family members in my room. As we were talking, Dr. J (the neonatologist) came in with some rather heart breaking news. Not only were Archer's lungs failing but so was his heart and his kidneys. Also, there was a lot less brain there than they originally thought. In fact, Dr. J thought that Archer had anencephaly as well because only about 25% (or even less) of his brain was even present. Archer also had a Dande Walker's cyst on the back portion of his existing brain and he had no sucking or swallowing reflex whatsoever. My world exploded around me. I could hardly breathe. Everything came crashing down. All my hopes. All my wishes. All my desires for this baby boy and our family, were all for naught. I was ok with the holoprosencephaly and whatever might come with it. I was prepared for challenges and hardships, but I wasn't prepared for this. Dr. J explained that the choice was ours, but the outcome didn't look good no matter how you looked at it. If we chose to try to keep him alive, he would always live on multiple machines and medications. Dr. J had called several other Neonatologists and specialists and they all agreed with him about Archer's situation. It didn't look good. His lungs were weakening by the minute and along with it, his heart was struggling to keep up. Dr. J told us that there was medication that he could use to help prolong his life but that it wasn't a guarantee it would work. If Archer were to be put on this medication he wouldn't be able to eat for a month at least and would have to kept on all these machines in the NICU for the entirety of the treatment. We asked Dr. J to give us some time to think about things and he said that he would come back in a few hours. Honestly, Dr. J is one of the greatest men. Several times during his talk with us he got choked up and told us how sorry he was. It was so great knowing that even though he didn't know us, he had compassion for our situation and wanted to help us in anyway that he could. He kept reassuring us that no matter what we decided, it was the right choice. There was NO wrong decision. When he left the room, Josh asked the rest of the family to give us some time alone to talk but as soon as they left we just collapsed into each other's arms and cried. All our worst fears had just come true. Archer would be leaving us A LOT sooner than either of us had anticipated and neither of us were ready to accept that reality - at least, I know I wasn't. We talked and came to a decision about what we wanted, and what we thought that Archer would want, and then we went to go and see him. Already I felt that I had spent too much time away. Because it is RSV season, no one under the age of 18 was allowed in the NICU, but DR. J gave us special permission to take Alli in to see and hold her new baby brother. She was so excited! And I was so excited for her.