Return of Jude-i

     Losing weight is something that many of us, probably due largely because we're Americans, can relate to.  It's usually a longer process than we like.  For most, ups and downs are associated with the loss.  I've known very few people (none actually come to mind) who set out to lose weight and continue to lose weight week in and week out without slipping back at least a little bit here or there.   You might start out with a goal to lose fifteen pounds.  The first week goes by and you have lost two pounds.  A good start, you think.  Then, as the second and third week pass by you lose a pound, gain a pound, lose two or three only to gain them back.  After a few months, you haven't quite met your goal of fifteen but you've made some great progress and have incorporated some exercise back into your life.
     For Jude, this process is somewhat similar.  Not that he's trying to lose weight, although we have talked about getting him to do so with how chubby his cheeks are getting :)  More so for his breathing.  Jude was re-admitted to the PICU (Pediatric Intensive Care Unit) on Tuesday night with respiratory distress.  It all started about a week or so ago.  As he has gotten older, Jude has required less and less suctioning.  For those who are unaware, which is probably most reading this, I am referring to suctioning his tracheostomy tube.  Here is a link for a visual image: Tracheostomy Suctioning.  Basically, his tracheostomy tube, like our throats, can become clogged with excessive saliva, mucus, etc. and needs it cleared out.  We do so by inserting a small tube down his tracheostomy tube which uses suctioning like a vacuum to suck it out.  Think of it like a clogged sink, except instead of pouring Draino down it you are using your vacuum cleaner hose to suck out the obstruction.  Anyway, we had been suctioning Jude about once or twice a day for the last month or so.  This was quite a step down from his day in the NICU in which he required suctioning probably once or twice an hour if not more.  About a week ago, however, we began to notice that Jude was needing more and more suctioning throughout the day and even into the night.  We had our concerns, since this is typically a sign of him getting sick, but dismissed them as he was breathing just fine.
      Then, a couple days ago he began getting worse.  Not only were we suctioning him more but now he seemed to be fussier and was just not putting up the numbers we were used to on his monitors.  Along with all of this, he had been spitting up and retching occasionally, which he is not supposed to be able to do because of his fundoplication.  This was alarming not just because of that but also because vomiting could be related to a complication with his shunt.  So, there were quite a few concerns out there on the table and we were going Native and joining the WaitAndSee Tribe.
     This did not last long, however.  I was awoken Monday night by Tracy at 3:30 in the morning saying that we needed to change Jude's trach out.  This is never a good sign but nonetheless we had done a couple middle-of-the-night trach changes in the past.  We do it when we feel that his trach might be clogged with gunk that's just not clearing with the suctioning machine.  We also change his trach routinely once a week for maintenance purposes so, like I said the trach change itself, while not good, was not something we had never done nor was it an emergency situation.  I must say though, I had a funny feeling that the trach change would not improve his current condition.  I hate it when I'm right about the wrong things.  I then received a text later that day while at work saying that Tracy was taking Jude to the ER per our doctors orders since he was having more difficulty than normal breathing.  So I left work and met Tracy and Kay at the ER where, long story short, they ran a gambit of tests including x-rays and sonograms throughout the next four or five hours only to come up with an "I don't know answer."  To be safe, they admitted him into the PICU on Tuesday night where he has been till now.
     The doctors say that his chest x-ray shows that he is a bit cloudy in one of his lungs and that it looks like he has some excess mucus and other medical termed thingys in there.  They have increased some of his vent settings back to what they were a month or so ago which is disheartening because, like the weight loss example, it feels like one-step forward, two-steps back for him.  It feels surreal to be back at Children's Mercy again (I'm sure for Tracy this is double since she's been here with Jude the entire 32 hours or so).  It's also a good reminder of how lucky we are.  The room next to us has a baby in it that was a victim of a car crash and the term "doesn't look good" has been heard in the hallway.  A few doors down I can see a priest an entire extended family leaving a room.  It's never a good sign to see a priest leaving a room full of crying people let alone a group (since only two guests are allowed at a time unless there are extenuating circumstances, such as the need for a family to say good bye).  Situations like these make me grateful that we are and have been extremely blessed with Jude's progress, however challenging it's been.
     They talked about discharging him today but decided against it in order to keep him for observational purposes.  So, hopefully he will be home tomorrow barring any unforeseen set backs or sicknesses.  Even if he is not though, he's still happy and playful while he's here which makes the stay just a little bit easier. 

  

Jude in a nutshell ( a big nutshell)!

*started writing this mid June all updates have been made. sit down and get comfortable it's gonna be a long one :)

Today was quit an eventful day! When a child is seen by multiple specialties at Children’s they try to cluster all you appointments together so you are not making five trips in five days, well today we had five appointments in one day and a lab for blood work up! We had our first appointment at 1130 and left at 630, someone was maybe a little too overly ambitious about our clustering.  Jude was a definite trouper though he had maybe a grand total of 30 minute cat naps but was happy and content up until the last bit of his last appointment.

Different people have asked what’s next for Jude and in some ways the doctors and Chris and I ask that question too but I will try telling what I know for now. I think the best way is to write based on areas versus trying to clump things together.

Cardiology: PDA they did a scan of his heart right before he left the NICU and everything looked stable, the open valve had not shut nor opened anymore. We were very nervous about going home with it open because different people had talked about it getting smaller and then “blowing” back open and him being symptomatic, the last thing I wanted to add to my plate was issues with Jude’s heart. After speaking with the cardiologist he explained that the valve never gets bigger it only gets smaller and that the difference in the sizes is how the tech took pictures of the heart, it falls within the margin of error. He also explained that Jude’s opening is small enough that he would slowly show signs of problems before anything major happened and that they would be able to catch it and has Jude gets bigger the valve will actually become less and less likely to have any effect. Where was he to explain that months ago?! So we will see them in about 4 months, 6 months after he left the NICU and then that case should be closed!

Orthopedics:  Jude broke his pinkie when he was staying in the NICU. This baffled everyone and actually I was told that had we come from home with his pinkie broken like this CPS would have been called, not what a Social Worker wants to here by the way. Well after much fuss trying to get ortho to actually look and figure out what was going on they saw that it was fractured, right near the growth plate. A while later after a next x-ray they thought that there might be a growth. His pinkie was too small for them to get a good look at things so last week we went back in for a follow up. From that x-ray they confirmed that is was a facture and they are pretty sure it has not affected the growth plate and has looked to heal itself. Chris and I are to monitor that the pinkie doesn’t grow differently but there should be no need for follow up. They are still baffled though how a baby could break their pinkie the way he did. But for now we will say that case is pretty much closed.

Hematology:  Jude was on Lovanox shots daily after two clots were found in his brain back in January. He received the shots for 3months twice a day and at the first of May they did an MRI and showed that all the clots had seemed clear enough (they don’t always go away completely). That have to do blood work between a month and two months later to make sure all of his levels are stable.  Because of the amount of blood they need and how small he is they took some blood today and will take the rest in two weeks. After that we should know if everything is good and prayfully that case shall be closed! UPDATE: Jude had his last blood work up which included four nurses to get his blood and me almost passing out! However they said they would call if any problems, no calls! YAY for Jude!

Neurology: They began to follow Jude after he had the two grade 4 IVH (brain bleeds) back in January.  After they seemed to stable themselves out they decided nothing surgically needed to be done. When Jude went back in May for the MRI the doctor noted that his ventricles in the back seemed very enlarged.  Neuro was consulted again, Jude has always had enlarged ventricles (he’s got a big head too!) at the time they decided to do a follow up. Today we went for another ultrasound; Jude’s ventricles have become even more enlarged. Normally where ever someone starts on the growth chart that seems to be that path they follow and they start to follow the curve, for Jude’s ventricles that is not the case they seem to just keep going up and not stabling out.  This is why they have decided Jude needs to have a shunt put in. They do not feel it is an emergency but they do think it needs to be done soon, June 25 to be exact. When placing a shunt Jude cannot have any other infections or issues especially in his abdominal area.  Not to jump a head too much but Jude’s Gtube site is still not healed and this is why they have to wait. When putting in a shunt in the back of the head they go in through the stomach, makes total sense right? I have yet to research why they do this but that is what they do. They also have to bypass Jude’s trach which can be tricky.  The other nuero was his IVH. When someone has IVH, especially grade 4s, there are different milestone test up until age 6 they do to see if there will be any long term affects such as CP or development delays. At each vent clinic appointment they check to see how he is developing if there seems to be any major concerns they will look further into it otherwise I believe is first test will be around his first birthday? UPDATE: Jude had is shunt placed. He went in on Monday and was discharged on Wednesday. What I learned The shunt is placed on the top of his head towards the right, the pick the right because the majority of people tend to be right handed (Jude 90% time uses his left) and your right hand is controlled by your left side of your brain so if there is any damage it is better not to affect the dominate side. The shunt ( I tried to find a picture online still haven’t found one) is shaped like a push pin with a long pointed part that goes into the brain, the top part is about the size of the button on a baseball cap. From the top part is another tube that come of the side it goes along side of the head down behind the ear through the neck and down into the abdomen. The tube is very long a coils in Jude’ stomach (it would coil some in mine too) this allows Jude to grow without having to worry about length. The fluid is then essentially able to be distrusted and peed out. They are not sure what caused his hydrocephalus they believe it was caused by his tumor but it may have been caused by IVH. They are also not sure if he will need the shunt his whole life or if at some point he will have it removed. They said sometimes the shunt stops working but the body kicks in and you never even know. It’s about a 40% that in the first year Jude will have to have some kind of revision done. They only repair, replace, remove when a person becomes symptomatic.  They when healed Jude will not have any restrictions accept for he can’t play football (can’t say this mama is too bummed about that). Jude is recovering well; he is still having a hard time sitting up because the fluid change and at times gets fussy probably a headache but he is great spirits and smiling a lot. Not where I would be!

Plastics:  Right before Jude left home from the NICU they requested he have CT done of his jaw to see how well the brace worked. That day the doctor from plastics was at Jude’s bedside eargerly wanting to show how well the brace worked. He stated that it was better than he had hoped for. Jude continues to keep his mouth closed more and more each day. His lips are also starting to tighten back together.  We will not need to see plastics for a few months when they will follow up on the growth of his jaw. They will perform the other needed surgeries next year which I will go into more farther down this blog. Plastics did state that Jude will need “a lot A LOT” of dental work done when he is in his late teens (poor guy).

Therapies: Occupational, physical, & speech. When they measure where Jude is at they always go by his corrected age, i.e. his due date. Because Jude was 2 months premature right now even though he is 5 months old they consider him 3 months old. When they evaluate him they would start at the 5 month marker then work their way back till the 3 month marker, he is not considered behind until he falls below the 3 month marker. By the time Jude is 2 the expect him to be caught up to his actual birthdate. Hopefully that all made sense. Jude was receiving both OT & PT in the NICU. For PT he had been working with range of motion, tummy time, holding his head up, as well as development of milestones. With OT he had been working the muscles in his mouth; he had no chin muscle and extremely tightened cheek muscles from the mass. Jude also must learn how to suck, swallow, and breath all at the same time. Thankfully he loves his binkie and that is a huge help in teach that. He also receives 5mls of milk a day through a bottle with a special nipple. This helps him learn those three things but also helps give him oral stimulation so that he does not get an oral aversion.  At the hospital he was receiving these services 2 to 3 times a week at home he will be receiving these once a week and they will be combined focusing on just a few key things. In the next few weeks through the vent clinic we will start more OT, PT, & speech. The main focus right now will be starting him on oral stimulation Because Jude has the trach and vent there are something’s he will be behind on for instance rolling over tends to be delayed in trach/vent patients because it is hard for them. This does not mean they will not catch up and be a “normal” child at some point it just means it will take longer to learn. He will also begin speech; they will work with him and us to learn sign language because again with trach babies they cannot speak. When he is bigger they will help him learn how to “talk” around the trach. We are still not sure how the damage done from the mass will affect his speech and if he will be able to fully speak. For now we take his cuff down twice a day, this is for other reasons but it does allow him to make noises around it. It’s so great to watch him find his voice!   

ENT: This was a another specialty we recently met with. ENT was the group that placed Jude’s trach on the day he was born (therefore they make the call when he needs a bigger trach), they were the amazingly talented team who removed his tumor (w/ the help of plastics) and they will be the team that does his surgeries to reconstruct what the mass had damaged. This is where a lot of the unknowns lie, not because the team is unqualified but because Jude’s mass was not common and therefore the damage is not always the easiest to know how or what will need to be fixed.  Here is what damaged we know was done; Jude has no soft pallet, his hard pallet fused together incorrectly overlapping itself, his upper jaw was formed point titling up in the front instead of even, his bottom jaw was small and grew with no angle (this has mostly been corrected from the brace), his tongue curved in towards the left, his gum line on the bottom is very small and his gum line on top is very large, he has no uvula (the hangy ball in the back of your mouth), his naval cavities are shaped more like funnels because the mass pushed up the bone, his ear canals are small and come in more straight not slanting down, this what they know now(I think I remembered everything). Two reasons they are waiting to do the surgeries till he is older is first he will be stronger and healthier so each surgery will be less risky. The second reason is that the body knows what it is suppose to do and where it is suppose to be. They want to see what corrects itself and what could adapt to (no one knows why we have a uvula so why give him one?). When we met with the ENT they told us that it looks like part of the skin for a soft pallet is already forming (it will not form completely by itself), she also noted how well it looks like his mouth is taking shape. His upper jaw is starting to come down, when he starts to get teeth the teeth should pull down the jaw more. Jude has a middle case of hearing loss from small ear canals and fluid on in his ears. They think this is caused from the mass but also when people have trachs it prevents fluid from properly flowing down. He will be getting tubes put in his ears roughly six months from now.  They were not sure how his speech would be because of his anatomy, they noted that when they removed the tumor is voice box was very small but they did not know if that was from prematurity and still being so small or the mass had affected it. They were glad to hear him making noises when they saw him, although we still don’t know how he will do with putting sounds together to make purposeful sounds.  He will need a lot of dental work in his teenage years. They also follow up for the first bit to make sure the tumor does not grow back. We will revisit them in about four months for a follow up.

Gtube: I don’t know what category this fits in so it gets its own.  Jude had his feeding tube (GT, GTube, mic-key button) that was placed in March. He also had a fundo (not very fun) done, this is where they rap his esophagus around so that he cannot have anything reflux. They do this when they person is not able to protect their airway. It allows things to go down but nothing to come up, as he gets bigger he should be able to burp possibly throw up but it will be hard. Sense Jude has had his GTube placed the site has been extremely irritated looking, although I don’t think it seems to bother him as much anymore it is not good for that area. Jude has very sensitive skin (thanks to me) and so it has been very hard to help that area heal and we have tried many different treatments, currently we are trying a moisturizer cream, a powder, and air J.  Unfortunately this may just be battle till it is removed. Jude will have the GTube till his trach is removed; this allows Jude to always get the nutrition he needs if he cannot get it all orally. Jude’s stomach was extremely extremely small when he first got the gtube so his stomach had to be vented as he was feeding; this was something they had not done before so it was definitely processes to figure out the best way. Let me see if I can explain this (picture attached) There is a pump that runs the formula through at whatever rate we set, the tubing from that is placed into another tubing that is placed into his gtube. The top of the gtube tube has to ports one for the food and a second one for the syringe. The syringe does not have the plunger part in it. We use a rubber rope to hang the top of the syringe from so that it is elevated. This allows the tube to also be stretched and elevated. The food can then drip down into his stomach but the air can be released up through the syringe when needed as well if it is too much for his stomach it allows the syringe to be able to build up w the fluid and then go down as he can handle it. We’ve learned to put a mesh gauze on top of the syringe because whenever he would cough or burp it would launch the food (stomach contents) up and out making a nice mess. When he is feeding it makes it very difficult to move him around without spilling it or pulling at his stomach. When Jude first came home he was on a continual drip of 22hrs a day! I hated hated hated this! I felt like it prevented him from doing so many things, honestly the venting of his stomach stinks and I can’t wait till he no longer needs it! With that said we have started compressing his feeds till he gets to a bolus feed. Right now he feeds for one hour and is off for two. During the night he is still on a continual feed. We normally feed him for one hour, let him vent for 30minutes after and then remove the feeding tube. The end goal is no venting needed 30 minutes bolus feeds every three hours with no feeds during the night, like a typical baby. This will probably be about September when we reach this goal. As he gets bigger and he can handle solid foods they feeding tube will be needed less and less. The doctors are still not sure how he will handle swallowing foods and if he will be able to protect his airway when things go down, this is part of his anatomy they have not looked at yet.

Trach & Vent:  Finally, this and his GTube are the main focuses right now for Jude. This is also the question we seem to get most often how long he will need all that. I have to say that is a great question and I wish I knew! The trach Jude will have till he is about 2 ½. They want him to keep the trach for his surgeries because it is safer airway. They do not remove a trach in the fall or winter because of being more susceptible to illness so he will probably have his trach removed the a year after having the surgeries. Originally he was not supposed to go home on the vent but because of multiple things; aspirated pneumonia, prematurity, being on the oscillator, simply being on the vent for so long his body is not yet able to handle not having the vent.  Jude has been on the same settings for his vent sense march, there have been different hiccups along the way that have kept him on the same settings.  They wanted him to be stable when he went home so they didn’t change much, then he had to adjust to being home, then the vent clinic doctors needed to get to know him, then he got sick, then it was his shunt placement. Let me first say that I totally and completely trust the doctors’ wisdom but this has been disheartening at times. It’s hard not to look back and think 3 months have been wasted but we are where we are and in Jude’s whole lifetime this is just a blip in time… Hopefully his next visit on the 13^th we will begin to wean off the vent some! To wean of the vent they will lower Jude’s support settings on the vent, he will also trail off the vent i.e. be off the vent for 15min on the vent for 2 hours. They feel that Jude will be able to quickly wean off his vent. I am not sure what quickly means and really a lot of it is up to how Jude does but it could just be a couple months.  What this also means and what has been very hard for me to process is Jude’s ability to travel. Jude cannot travel while on the vent, he also cannot travel during the flu season (trach patients get sickness non trach patients cant).  If you’ve already done the math you realize we are taking Jude nowhere in the next year L  this also means that come flu season Jude will be in somewhat of a lock down and visitors will be limited. Currently Jude does not travel much of anywhere but I will talk about that in a different post. …

So I think that is it, actually I am sure I have forgotten something but this is a long post and I am sure you are done reading, if you have actually read it all! Let me say that CMH is great about trying to explain things and keep us informed however I feel like I understand maybe an 1/8 of what is actually said. So don’t hold me to anything I have just written because as we know I am not a doctor and Jude certainly has shown us he does what he wants.  J

-Tracy

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.

My Jude has come home!!!

I will not post much tonight but I wanted to share that my Jude is home. He came home on the 17th almost a week ago. Chris has been busy working at a temporary job and I have been busy with my son at home :) we will post more soon! thank you all for all your encouragement over these last few months. We still have a long way to go but Jude being home is such an amazing amazing blessing! I wanted to share a song that I am constantly reminded of, brings me peace to know God...


Take courage my soul and let us journey on,
though the night is dark and I'm still far from home;
praise be to God, the morning light appears

he storm is passing over (Lord)
The storm is passing over
The storm is passing over, hallelujah

Preparing a room

     Last time I was in Boise I did a communion message for our church there.  In it, I talked about John 14 verses 2 through 4 in which Jesus said " My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?  And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.  You know the way to the place where I am going.”  In this passage Jesus is talking about Heaven.  Heaven is our intended home where Jesus has promised a room for those who are faithful.  Earth is not our home.  We try desperately to make Earth as comfortable as possible with things we buy, the places we live, food we consume, and friends and family we surround ourselves with.  Even the person with the "best" of these is not home here on Earth..  Earth is not where we are meant to stay.  In the same way, the NICU is not Jude's home.  He has a crib, clothes, toys,  food, and family yet, it is not his home.  It's the NICU.  No matter how much time we spend with Jude in the NICU or how many blankets, clothes, and stuffed animals we bring with us it is not his home.  Jude's home is with his mom and dad at his grandparent's house (for now, anyway).  And much like Jesus has done in Heaven, we are preparing a room for Jude.  In fact, we've spent hours and hours painting, assembling, and organizing his nursery.  It's well worth it though because he is coming home on April 17th.
     About two weeks ago we had a meeting with our medical team at the hospital to talk about Jude's discharge date.  We discusses his progress and how medically, he was able to be discharged as early as April 3rd.  This was quite a shock as we had always talked about the middle of May as our discharge time.  It caught most of the staff by surprise too, as they, like Tracy and I, were not prepared.  We were not prepared with a finished nursery yet and the hospital had yet to begin arrangements for Jude's home nurses or medical equipment.  So, we all agreed that the April 17th would give us all ample time to prepare for Jude coming home.
     It will be quite an ordeal for Jude to make it home.  We have met with a local medical supply company and have gotten most of Jude's equipment already.  We are setting up two nurseries: one in his bedroom, and one in the living room.  This is because Jude will still be fairly immobile, remaining mostly in his crib, and setting a nursery up in the living room during the daytime allows for us to be around Jude without having to spend all of our days in the upstairs nursery.  Jude will be coming home with his respirator, a suctioning system, a blood oxygen monitor, and his feeding pump (these are only his large, space-consuming, pieces of equipment.  There is loads of other supplies that Jude uses daily.)  We also are making changes to the home in preparation for his arrival as well.  In order to ensure all  the equipment is getting ample power supply, grandpa is calling in the electrician to run specific circuits to the walls where the equipment will be.
     We have also began interviewing home nurses for Jude.  He will get 24 hour nursing for the first two weeks and then will be weened down to twenty hours a day and so on and so forth until eventually over time, we will only have one nurse for twelve hours a day or so.  We have been pleased with the applicants thus far and feel good about having the nurses there.  We've become fairly accustomed to being around nurses all the time.
     Throughout all of this hullabaloo the biggest thing we are feeling now is excitement.  Excitement to finally bring our baby home from the hospital.  I imagine that Jesus feels this kind of excitement to bring His Father's children home to the house where he has prepared their room.  Of course it's not exactly the same but we are excited to bring our baby home to the room we have been preparing for him.

To God be the Glory,

Chris

The Ol' Ball and Chain

     We've all heard the term "The Ol' Ball and Chain."  It's a term used to describe a wife that holds you back from doing what you really want/wanted to do much like the prisoners that used to wear a ball and chain were kept from doing what they wanted to do.  I don't want to focus on what the ball and chain prevents a person from doing though.  My wife is my ball and chain not because she prevents me from doing what I want to do (although she has prevented me from doing things I probably shouldn't have done and for that I'm NOW thankful) but she, like a heavy ball, is my anchor.  Now, calling your wife a ball and chain is bad enough, but a heavy ball?  I think by the time this blog is over with I will have explained my harsh choice for an endearing term.
     As I have mentioned before, Tracy spends most days at the NICU.  Now, when I say most days I don't mean like how you work at a job most days meaning five out of the seven days a week.  I mean that she is at the NICU everyday, all day.  She does find time to venture away for a couple hours here and there for lunch outside the hospital some days or if family or friends come in town she'll take a couple hours to be with them.  But on a regular day (which is most days otherwise it ceases to be regular) she is at the hospital up to fifteen or sixteen hours a day.  If you read my last blog you'll know that this is draining. 
     I take time nearly every day for myself.  I go for long prayer walks, go to the gym for a few hours (don't get too proud of me, the gym's a long drive from the hospital), do home improvements at the Mitchell home, occasionally meet up with friends, etc, etc.  The point is: as crazy as I get being at the NICU for as long as I am each day, Tracy is always putting in nearly double the hours.  She's by Jude's bedside nearly all day long and sometimes late into the night, often after I've walked back over to the Ronald McDonald House for the night.
     Now, I know many of you are thinking "well, sure she is.  She's the mother.  She has motherly instincts to nurture so it just comes easier to her to be there.  I mean, that's what most mom's would do."  And I would agree.  Most moms would probably spend just as much time as Tracy does at Jude's bedside and most father's would probably get away about as much as I would.  I think what separates my wife from most and what makes her my ball and chain, our anchor is her dedication to Jude's care.  You might think that I'm informed on my son's care by reading my blogs.  What you probably don't know however is that I get a lot of my details from Tracy (and a lot of my informational proofreading corrections too).  Tracy is not only at his bedside everyday but she is constantly asking the questions that most of us don't think to ask, out of love for her son.  Tracy also invests time in learning how to take care of Jude.  I don't mean in the traditional sense of diapers and burping but learning details of a trach clean, trach change, G-Tube maintenance, etc.  If it wasn't for Tracy I would be about half as educated as I am in my son's care.
     In addition to caring for Jude though she also cares for me.  I've been amazed at her strength, faith, and endurance.  It's like two guys competing for a promotion at a construction site: if one guy picks up three boards, the other guy picks up six.  If one guy gets a wall framed in ten minutes, the other guy gets it framed in five.  No matter how much I push myself, Tracy always has more endurance than I do both in the spiritual and physical realm.  I keep asking myself when she will need me.  When will she need a talk about perseverance in faith like the one's she's given me?  When will she ask me for some time away to clear her head like she's provided me time and time again over the last couple months?  When will she need me to tell her that it's going to be ok?
     And this is why she is my anchor, or rather our anchor.  My ball and chain.  She is the glue that holds the family together (side note: if you've met Tracy's mom you'll know where she learned it from).  I think over the last couple of months we've been able to look at other couples at the hospital and say "I'm not sure how they are going through this without family close by like we've got."  I now look around and say: "I'm not sure how these husbands are going through this without a wife like I've got."