Welcome to Holland!!!

Ok well we are not there but that is the title of this piece i read and felt compelled to share. I cant stay how true this piece is.....

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


-tracy

LIFE ISNT FAIR!!!!!

*this is a blog that has taken me a few months to write so it may seem a little jumbled. men you may not be interested in the aftermath of pregnancy skip the first paragraph.

I was inspired to write when I woke up in the middle of the night last night with a major bleeding, I had gone to bed cramping real bad. After being awake for over an hour trying to contact the nurse to make sure everything was normal I was informed that I have probably started my period! What?! I am only four weeks out from having Jude and I am pumping why the heck am I starting my period already?! Now don’t get me wrong I am pumping because it is good for Jude but I do have to admit not having a period for a while sounded like a nice idea too! All I could think was “of course, of course I would be that small percentage of woman who start their periods back ridiculously early” “of course I would start my period before I even stopped my bleeding from the delivery.” When I told my mom she said well nothing else in your pregnancy has been “normal” I cant help but to think nothing else in my life has been “normal”

I’ve always wanted to have children. When I was growing up everyone wanted to be a doctor, ballerina, nurse, businessman or whatever I wanted to get married and be a stay at home mom. I have always wanted to have children, even though I want to be a social worker that has always come secondary by far distance from being a mom. I would have and do anything to be a mom and even more to stay at home with them. I would read Family Circle when I wasn’t even married while my friends would sit and read US Weekly (haha becky) I thought about how I would do all these things in preparation for my baby to come how I would enjoy being pregnant and proudly show off my belly. Well we know how my pregnancy really went.

The starting of this blog was back in February, I would like to say I have my heart in check now everything in God’s plan makes sense and life is great but of course that is not the case.

Last year my sister, Cassy, got engaged! Cassy wanted a destination wedding and I very eagerly encouraged that, an excuse to go to the beach? Yes please! I also very much supported her asking one of my best friends to go as the photographer(maybe for my benefit J ). Chris and I knew this would be a crazy trip for us, pinching pennies to afford to go and having a 3 month old in Mexico, I even went and picked up passport info to fill out for Jude ahead of time, the thought of missing my baby sister’s wedding was clearly not an option! I mean the besides your wedding the most exciting is your sister’s wedding. It’s that once in a life time moment to share in the celebration. But tonight I sit here in bed with Jude while my family is in Mexico preparing for my sister’s wedding tomorrow. It breaks my heart to know that going to my sister’s wedding is no longer an option, that this will be a time that I will never get to share with her. But of course it doesn’t stop there, at the end of June my other sister, Natalie, is getting married in Alaska, this is also not an option for me to go. My two sisters and I have to miss out on two of the biggest days of their lives….. Yes, life is not fair!!

I feel at times my life is a constant battle, today we were at Jude’s doctors appointment and he was really wanting to be held but if I held him then he couldn’t eat. This was not a problem for other mom’s in the waiting room.  I cant carry Jude around the house with me, he cant go in the swimming pool, we cant leave the house for more then 4 hours, I cant just put him to bed when he is tired; his cares take almost an hour at night, I cant run to the store with him; it takes at least 30min to load him up w multiple people helping, I cant leave him alone for more than a minute or two, I cant breast feed him, I cant leave him with just any babysitter(actually besides Chris & I only my mom can watch him); they must know all trach cares, I cant hear him talk accept for less then an hour a day when his cuff is down,

Note this is now my third time trying to finish this blog and I now have it all figure out! Ok maybe that last part is not true. Well both of my sister’s are married and to add to the fun Jude had a shunt placed in his brain on Monday. He now has four foreign objects in his body and in a few months when he gets tubes for his ears it will make five! I am afraid to ask what else could he have placed in him?!

Well it is August almost September and Jude is still on his vent, he was only supposed to go home trached. I feel like him and I live in the living room. Although we are making progress I feel that we/he should be farther along. There are so many things I want to do with him and place to take him, he’s my little baby I want to show him off proudly.  we have had a few realization talks of where Jude is at and what that means in our near future. We had planned (maybe naively) to travel with Jude to the NorthWest, this wont be happening for the first few years of his life.

OK this is my fourth and final time writing this blog and as you can tell there are still many things that I find not to be fair & maybe you agree or maybe you don’t.

 I cant help but to think life isn’t fair, then my mom’s voice in the back of my head says, “life will never be fair!” ughhh I hated hearing that growing up! Who knew it would be preparing me for my adult life. I find myself often trying to make things fair for people or what I assume to be fair. I don’t want people to miss their chance or not have every opportunity. Truth: I feel bad for the mop that has to stand in the rain because the person has found their new Swiffer (ridiculous I know). My econ professor would always talk about how people being born into certain wealth or life style doesn’t matter because if everyone when born was given the exact same amount of money and aloud to pay whatever to whoever and however much there would still be rich and poor people. He’d always ask the class who would actually willing pay the same amount to a random officer out of their own paycheck as they would to go see a football game. We want fairness but really what we want is a life of no pain. We want our cake and eat it too. I think I have spoken about this before, but I don’t believe God is punishing me or trying to teach me a lesson. I think God cries with us, he felt the pain and cried the day we found out about Jude’s tumor, he cried with each painful moment Jude had. Satan wants us to believe that God did this to us and now we have to face this horrible life but God did not do this to Jude he knew this was going to happen and so he began to set life emotion to help guide Chris and I to be the right parents for Jude. Chris and I always talked about his decision to work as a special Ed teach and mine to be a Social Worker was no coincidence we knew God must be preparing us for something (& not the being poor part). How can I say life is not fair and pout when I clearly can see God preparing so many things and people to help us in this journey with Jude. It’s so easy to be tempted to look at the other side and only see the negative in our lives but the truth is without all this “bad” stuff I wouldn’t have the Jude I have now I would have another baby and all though I am sure I would love them they wouldn’t be my Jude and I cant imagine not having him tubes and all.

I know I don’t have it all figured out and I can say that Satan is constantly tempting me with what I “deserve.” He plays into my shame when I want to scream making me think I dont need to be a whiner but then when I try to be "strong" then I am not fully honest. so maybe this blog is my way of saying life is not fair but that's ok because God is my strength and he will pull us through and has given us all the blessings.  We all have hard things in life I am not saying we just act like they are not there but I have made the decision not to dwell on the bad. We all have three different ways we can see our own lives either written only with the bad and missing what blessings we have, being written only with the good and not really honestly seeing our life, or being able to accept the bad and know the good is a great blessing. I could probably share for pages the things I have learned in regards to what is fair, being truly grateful for what we have, and ultimately trust but I think it can be best summed up in this scripture:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it.  I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
Philippians 4:4-13 & 19

Go for Gold!

     It's an exciting time right now in America.  The Olympics has just finished up with the US finishing on top with the most medals and consequently the most gold medals.  The Presidential race is heating up with talks from both camps guaranteeing their candidate for victory in a few short months.  Football, both NFL and NCAA, are rearing up to start while baseball is nearing the end with the World Series in October.  There's quite a lot going on and yet Tracy and I are not very aware of any of it. I myself caught maybe three or four minutes here and there of three or four events in the Olympics.  (To be perfectly honest though, I have never really cared at all about the Olympics).  As far as the Presidential race is concerned all I know about either candidate is what I hear about in commercials for the news shows (again, being perfectly honest, I hold very little stock in who the president is and think neither is worthy of a vote, although that's best saved for another talk that I'll never have).  I suppose my point is that with all that's going on in the world we seem to focus a lot of our daily attention to Jude right now.  It's tough not to.  Not only because he's so cute, which is fact whether it's coming from his dad or not, but also because he is making some exciting progress in his growth.
     As some may have already heard Jude has recently started trialing off his ventilator (as you can see up above he likes to even trial himself off).  What this means is that three or four times a day we unhook him completely from the ventilator for up to five minutes and let him breath completely independently.  So far, it is has gone really well with the exception of his allergies flaring up and getting him a little sick earlier this week.  Even with his allergies, it was an unexplainable feeling to hold him and walk around the house for the first time, completely free from any hoses hanging off of him.  From the look on his face he thought it was pretty neat too.  In addition to trialing off the vent, we recently started him on some solid foods.  Now, to clarify, I mean more taste-testing than eating.  He's not exactly getting a meal out of the foods.  Tracy has fed him some basic baby foods: your strawberry/blueberries, your strained sweet potatoes, etc.  He also tried some condiments which was recommended by his Occupational Therapist.  He seemed to like ranch dressing the most, although if I were choosing from salsa, ketchup, and ranch I think I would choose ranch out of the three as well.
     It's exciting to see Jude at this point along the journey we also know that we have a long way to go.  Many have asked us when Jude will be off the ventilator completely.  I wish I knew that answer or that anyone knew that answer.  That's between Jude and God, I suppose.  We can hope that by around the Holiday season (November to the end of January or so) we can expect him to be off the ventilator during the daytime if things continue to go well.  We will slowly, month by month, increase his time off the vent until he is off for a half an hour or more at a time until he shows that he has no real need to be on it.  He will be on it at night for awhile, however.  Since we slow our breathing down when we sleep, vent-babies are kept on the vent at night even after they are breathing independently during the daytime for a significant period.  Even just imagining him off the ventilator during the daytime hours seems fictitious and a million years away.

     For now, we are excited to see his progress and feel very fortunate for all the support we have been given and continue to get.  We would be far worse off if we did not have so many people by our side and God who provides everything we need, including love and friendship.  I will try to keep those that are interested updated on Jude's progress and hope to post a video soon with his time spent off the vent.

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.