Will I ever stop holding my breath?

          It was a Thursday in October, Chris and I were headed to our first ultrasound appointment. We were supposed to have had our first ultrasound multiple times before that but because I had been so sick they decided to keep holding it off, now we were finally going to see Jude(of course we did not know he was a boy)! I had a funny feeling maybe because everything else in the pregnancy had seemed to go wrong or maybe it was just me being nervous but regardless I went with the thought in the back of my head, “what is going to be wrong today?”(pessimistic I know) as she started to do the ultrasound I noticed something, it looked like Jude had a piece of bubble gum and had blown a big bubble. The ultrasound tech kept saying, “Everything looks great” but that just seemed weird to me. I thought well maybe it is the wall of my uterus but it kept showing whatever angle she was viewing Jude at. I asked a lot of questions but for some reason I couldn’t bring myself to ask her about that, honestly I think I knew it was not something I wanted to hear.  I found myself holding my breath trying to lay as still as I possibly could. After the ultrasound was finished we waited in the room for our Doctor, again I wanted to ask her but for some reason I couldn’t. Our doctor began to share how great Jude looked and how everything looked fine there was just one thing, I cut her off and said “it’s that thing that thing coming out of his mouth.” She told me yes. She then began to tell us that she thought it might be a tumor but she was not sure and she would refer us on to a specialist. We asked multiple questions but she said that she had only seen something like this one other time, she did not tell us how it ended. That next morning we had an appointment with the specialist, we later found out that it was actually his day off but he came in just for our appointment I knew then that is was serious. He talked about the mass and began to explain an Exit Procedure. I don’t remember everything he said but I do remember a few things that will never leave my mind. He said he didn’t know what kind of quality of life Jude would have he said this was a pretty big mass and he may not make it and then he gave us the option to abort (not an option for us).  This was the beginning of decisions I never wanted to have to think about making. My Jude had not yet been born and I already had to prepare for the chance that he may not live.  I had been spending the last 20wks preparing for my child to arrive celebrating and spending way too much time planning and decorating and now what? It was a weird mix of emotions I had wanting to be excited and plan for my child to come home but also wanting to protect my heart so that I would not be crushed if I did not have a son to bring home.
           After almost a month of waiting in what seemed like years we were finally meeting with Dr Bennett (who we now love!) in Kansas City to discuss the possibility of his team doing an EXIT procedure. He talked about our options and wanted us to really think about each one. He said that if at any point he felt that the risk was greater than the outcome they would not perform the procedure, the risk greater than the outcome?! This was not something I wanted to hear, my life over my sons life was not an option I wanted to debate. As any mother can relate whether you child is born or not your child always comes first. But what about when you don’t have that option? Dr Bennett discussed that if I was to go into early labor there was a very small to know chance of them being able to successfully deliver Jude successfully. If things did not go as planned they would deliver Jude and we would have that short (hour’s days) time to spend with him. Again I was forced to have to prepare for my child’s death.
       You can maybe understand some of my sheer panic when my water broke Dec 27. There was nothing going for Jude at that time, all the cards were stacked against him and all I could think about was nothing seemed to go fast enough. There were no thoughts in my head of being so excited to meet my son because everything was not going right. Those next 12hrs were horrible for lack of a better word. As doctors and nurses walked in and out of the room with concern and doubt in their eyes I began to prepare myself for the worst, this was the possibility everyone had tried and prepared us for.
        “The Monday”, that is how we refer to the one of the hardest days Jude had in the NICU. Chris had written about this day in a previous blog. I was holding Jude that night when he started acting funny and he looked as though he started to gag. I decided it was best to put him back in his bed, I just knew something wasn’t right. He quickly began to tank it seemed like one thing after another and nobody knew what was going on. For the next few hours there were doctors and extra nurses all around they were trying everything but nothing was working. I was actually trying to blog that night and so to distract myself I would try to write. I remember clear as day, after a few hours and things only seeming to get worse, walking into the bathroom and immediately falling on the floor sobbing not being able to catch my breath. The only thing that could come out was, “not now God not this way it is not fair! He hasn’t even had the chance to fight you can’t take him like this!” I remember telling God that if he was going to take him because of his mass then ok but not today to let him have a chance to fight without it, let him get through his surgery. To be so close it was just not fair. After   battling it out in my heart I went back over to Jude’s bed side moments after being back Jude started drastically doing better.
       Every time I would leave the NICU I would think is this my last time I will see my son?  When I get a call my heart would jump. I would turn the corner to walk down his pod and I would take a deep breath wondering what will I hear today? When I would here a machine ring off even if it wasn’t his I couldn’t help but to look at him. We saw a few families come in with a baby and leave with none. They always seemed to disappear so fast and all I could do is just think I hope that will not be us.
         Even now as Jude is home I am constantly checking looking for something, I don’t know what but I feel the need to be two steps ahead. The first night of no nurse was a night Jude got a little sick he needed suctioning multiple times in a hour and his probe was constantly reading off, his O2 leaves were low and were not coming back up. all that went through my mind was no no no please no not tonight not like this. I hold my breath has I suction Jude because he has secretions that are preventing him from breathing.
        I’m not sure at what point I will stop holding my breath, matter fact I am not sure I ever will. Jude will have his major reconstructive surgeries starting next spring so maybe after that but then there is his IVH that can cause serious development delays so well possibly after that. Oh but then he will need a lot of orthodontic work in his late teens probably then? Somewhere I went from a believer of kids living life eating dirt to finding a real bubble for my son to live in! this is what I do know it is so easy to ride on my own strength but that strength does not last for long. i think I don’t do the unknown because there is room for unprepared hurt. If someone holds their breath long enough they die, I believe this is the same spiritually and emotionally. I cant spend my life holding my breath wondering what will happen next because the next thing would be death. I would have never imagined a son so amazing as Jude but God did and God has imagined great things for Jude’s future whatever those may be. I am sure as long as Jude has monitor ring off my heart will skip a beat, I am sure I will worry the first day he goes to kindergarten, and I am certain I will try and convince him that living with mom forever is better than getting married but so long as I choose to breath and not keep holding my breath I will continue to see the miracles in my son.