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.

Home is what you make it

     Have you ever eaten a food for the first time and thought to yourself "how have I been living without this?"    For me, this was Lebanese food prepared by our good friends George and Rose. From the first bite of that stuffed grape leaf into the garlic sauce, or toum (we actually have a little running joke amongst our families about my deep love for toum), I wondered how I survived 27 years on this earth without the most delicious food ever made.  This example, while paling in comparison, is a glimpse into how we feel about having our baby home.  When I wake up and walk to the room next to mine in my bathrobe and see him laying in his crib I think to myself "how did I ever live without him before?"  He is our pride and joy, our praise and thanks.
     Jude has been home for nearly a month now.  He is doing well.  His feedings have been reduced so that he is no longer on 24 hour feedings and now during the day maintains a 2 hours on 1 hour off schedule.  He is nearly 10lbs now and losing half that weight through his diaper daily.  For the first couple of weeks I was still having to give him his twice daily shots in the leg for his brain clotting but after a doctors appointment a couple weeks ago we were able to stop those which is good news for him and for me (no one likes to make their baby cry).  He had made some progress with the ventilator settings, however, we had to increase those last week as he was not statting well.  We're hoping it's just a cold or something to that effect.  Aside from that, he is generally a happy little boy.
       Tracy and I have been adjusting to life away from the hospital.   It's nice not to have to take three freeways, park in a crowded garage, walk a quarter mile to an elevator to see him.  He is around all the time now.  This has also had some other implications in our lives.  It's amazing to have him home.  There is nothing I would have wanted more and nothing I would change about that.  That being said...it's amazing how much I (notice how I said I and not we) took the nurses at the hospital for granted.  Having Jude in the hospital had it's own baggage of it's own (those with short-term memories need only read the beginning of the paragraph again) but it is definitely a full-time job and then some taking care of him.  Being the stay-at-home Mom, Tracy assumes the majority of the responsibility, however, Meemaw Kay is also a big asset.
     The move home was more than simply preparing the nursery and taking him home from the hospital.  In order to prepare for his arrival some changes had to be made around the home.  Most notably, grandpa had to have an electrician come in and designate two new brakers on the electrical panel that went to grounded outlets.  This had to be done since the wattage used by Jude's medical equipment equates to just shy of that used for a Trans Siberian Orchestra concert.  Now, if you're like I was you may be thinking "that's no big deal.  Grounding something simply means hooking it to something metal so I'm sure that grounding an outlet means nothing more than an extra electrical wire from the outlet to something metal, right?"  As the "Bizarro Ed McMahon" might say, if he existed of course, "You are incorrect, sir!"  Grounding four outlets in the home and designating them as new spots on the braker took some significant time and effort that included holes drilled though the basement ceiling, main floor, and some time spent running wire through the attic.  Luckily, grandpa knows a good electrician but we helped as much as we could and saw firsthand how much work that was. 
     After the outlets were grounded, the nursery was painted, and we had all been through our emergency trach training, vent training, etc. we were ready to bring him home.  It was a funny day filled with mixed emotions.  We were happy to bring him home but had also grown attached to the environment and the people.  We also left with an entourage of people.  When Jude left the hospital it wasn't just our car. We also had four other cars following us which included his home health nurse team and home medical equipment team to ensure a safe first trip.  And after all the hoopla and settling in was done it was just us and our little boy.
     So, we've been adjusting to life without 24-hour experienced nurses in the safety of a specialist children's hospital to our home, well grandpa and meemaw's home.  We had 24 hour nursing care for the first two weeks, which was nice but not necessary.  Tracy takes care of Jude's needs basically 24 hours a day and we usually only utilize the nurses at night so we can get some sleep.  That will change here soon though as we are going to only have nursing care available to us for about 40 hours a week starting in June.  Some nights we don't have nurses though and one of us, usually Tracy, sleeps with Jude on the bed in the nursery.  Sleeps is a term that is not quite appropriate though.  Between machines ringing off and the feedings and care needs during the night you might get four to five hours on a good night.  Jude has a pulse/oxygen sensor that his hooked to his foot that is sensitive on it's own but goes off more easily whenever he kicks his feet from restlessness or from being gassy.  This triggers his alarm which rings off at least a dozen or so times a night and is about as loud as an alarm clock.  Thankfully for me, Tracy takes the night shift 9 out of 10 times if a nurse isn't available, which has become a frequent problem lately.  Jude has gone on a couple of outings since he's been home (besides hospital visits).  We don't take him out that frequently because  it's a little scary to have him away from the security of home and it's a lot of work to get him there.  Preparation for getting him in the car takes about an hour with all the equipment and another ten to twenty minutes to load it all on the stroller once we get there.  We did take him down to the March of Dimes downtown where he was reunited with some of his peeps from Children's Mercy and another trip to his future daycare at the church building.  He'll have more trips to come as we get this transporting thing down.
     But, when you take away all the nuisances that go along with Jude's tracheostomy tube and g-tube you are still left with a beautiful boy and two happy, thankful parents.  I would voluntarily sleep in a chair at his crib-side every night if that meant I got to see his face every day when I came home from work.  For the most part, things are going great.  We're home from the hospital and in addition to adjusting to that trying our best to operate like a normal, happy family.