Shut Up Already!

We survived our move into the PICU (Paediatric Intensive Care Unit), Braeden was not impressed and I was even less so! We've traded one ICU for the other and moved only a couple hundred feet down the hall but it is a different life in the PICU than the NICU.  It is simply different, it will get better, I will get to know the staff here and I will start to settle my anxiety over it all.  It is certainly hard making a change after 10 weeks with many of the same nurses and Dr's, all of who know B's quirks and could care for him accordingly.  I am certainly missing them all already!

Braeden wasn't at all impressed with it all and cried most of the way down the hallway (do you think he knew?).  He's got a much bigger bed now and a really nice big, private room. No more roomies at all.  We had a rough transfer because the RT (Respiratory) at the PICU was arguing that the flow was coming through the nasal prongs when the nurse was saying to her, "I don't mean to doubt you, but I do!".  I was really ready to freak out because I knew it wasn't so and I knew he was going to crash any minute.  Sure enough, B used up all of his oxygen reserves and CRASHED.  The nurse Sharon was great, she asked for a mask and when the RT assistant didn't move fast enough she told her, "NOW".  He came back up on the mask but the RT still swore it was because their machines were different that we couldn't hear the flow.  I sat with him trying to soothe him as he was rightfully pissed at not being able to breathe and kept the oxygen mask close to his face.  He was doing okay but not great when the RT assistant did something and Braeden then got a shot of water up his nose!  If he wasn't really mad already....sheesh.  I told her whatever she did made it work momentarily and she did the same again and SHAZAM, the kid had flow!  I was VIBRATING at this point!  Mike kept telling me it was okay but I was doing some serious deep breathing at this point!

Aside from the drama, he did manage to settle in once he got his oxygen, (surprise, surprise) and got to be cuddled.  The nurses there are a bit louder than we are used to as well and I had to (not so subtlety) say that he doesn't like loud noise or bright lights (so SHUT UP already!). It is funny too how each side thinks that they do things better, I don't care who are the better nurses, just do whatever it takes to make Braeden happy!

The expectations of the PICU staff also seem to be that I'll be there all the time, this is not humanly possible.  I am going to try to be there as much as I can but even that doesn't seem like it will be enough.  Braeden needs entertainment now (he'll be 13 weeks tomorrow) and the nurses have two rooms to watch, not just him to entertain.  To say this stresses me out, well if you've read any of my previous entries it will be pretty explanatory.

I did however get to give him his first bath (for me and in the PICU) two days ago so that was wonderful since he loved it.  One of the things about the larger cribs too is that I can lie my head next to his and we can just look at each other which is so sweet.  We still have no idea on the next surgery date as the Plastics guy is away next week too but it should be within this month I would think.  I am still not 100% sure if it will be the mandibular distraction or the tracheotomy but it will be something.  The Dr I spoke with yesterday at the PICU seems to think it will be the trach as she's not certain the mandibular distraction is even on the table anymore with the size and shape of his jaw.  Most kids excel with the mandibular distraction if that is the ONLY issue they have...not if you are Braeden in other words.  We'll see.  To be honest the trach freaks me out, it is a big step and it is certainly not short term.  I can't see how we'll keep him from taking it off since he pulls out anything else they attach or put in him.

We are in for a big month this month, not things I am looking forward to by any means.  Braeden's move is done, check, but we still have many changes.  Torin's contract with FSCD (Family Services for Children with Disabilities) ends after three years of the same fantastic therapists (sniff, tearing up here because they really are a part of our family).  It will certainly be a huge change for us!  Another huge change is that my Mom is flying home this week (yikes) and I'm going to be responsible for running all of my household again.  I'm not certain how this is going to work so just FYI for anyone coming over, my house is probably going to be a disaster zone!  I'm sure I can keep it so Health Canada doesn't shut us down but barely.  We are also waiting to find out later this month (as per the previous paragraph) what surgery option Braeden will have to open up his airway.  I guess there is also some day in the middle of this month that should be mentioned but I don't have the energy to care about it other than to send cards with the kids to school (no homemade ones from my house!). 

All in all we are in for one HELL of a month, feel free to bring coffee or chocolate by anytime!

A Coloboma and A Torticollis Walk into a Bar...

Mr.B was seen by the Opthamologist today to peer into his little eyes.  He has what is called a Coloboma in his left eye, essentially it looks as though his pupil 'bleeds' into his iris.  Odd? Yes.  Damaging to his sight? Nope, she says not.  She said that he would have been born with it, it is something that happens in utero that the iris doesn't fully form (am beginning to wonder what it was I ate during this pregnancy??).  It generally comes with retina detachments but his is looking okay.  The great new is that it is NOT a result of the strokes, phew!  We'll chalk it up to another of Braeden's little 'quirks'.

So the big debate of where Braeden is to reside for the next few months seems to be ongoing.  A Dr from the PICU came in and introduced himself yesterday and told me B would be moved to PICU that afternoon.  Wha??  Okay...  He chatted with me for a bit and I think he came to realize how complex Braeden's issues can be which is good.  I had to explain to him my main concern that when B is upset he can't be heard and the nurse may not know until he is blue in the face (literally) that he needs help.  Unit 2 was taken off the table, which makes me very happy. I want him to go to Unit 2 right before we are ready to go home, not when he is still unstable and critical without proper oxygen monitoring.  He took me for a quick tour and found the charge nurse who promptly told him they had a problem.  He interrupted her and let her know who I am and she proceeded to wonder out loud why NICU couldn't/wouldn't keep him if he needs this much care....ok.  The Dr excused them and told me the transfer wouldn't happen today (yesterday).  Back I go to B's room to find the Neonate there and wondering what is happening.  I explained to him what I was told and he went off to find the Dr himself to discuss it.  Then Dr.Boulton (his Neonate from last two weeks) came in and I explained the situation to her and SHE went off to find them.  What it comes down to is not where it is best for Braeden per se but politics.  The NICU is the best fit for a baby like Braeden but he is not sick enough (yay?) too warrant keeping him because of his age and he is a bit too sick for PICU to staff for him....again I say wha???  So for now he is staying put, but with the knowledge that he can be moved at any time to the PICU.  Okay.  Can I just say to them, "You are all just stressing me out!!!!"??

We got an extra adventure at ACH yesterday with Mr.Ry in the emerg department.  He was fine when he woke yesterday and then when I asked him to go get dressed he did but then came into the kitchen in visible pain.  His neck was totally locked and he couldn't move it at all to the right.  Wha??  I was under the understanding that kids were made of elastic!  He has a 'Acquired Torticollis', basically meaning he has a kink in his neck where the ligaments are trapped in between his vertebrae.  OUCH!  Poor kiddo!!  So I got to have an extra long day at the hospital yesterday is all.  Ry is feeling a bit better today but had to miss school again (to his chagrin).  I am hoping he'll have enough movement in his neck to go to school tomorrow, goodness knows he (and by he I mean me) needs it!

I had a good day with Squeak today, we had a whole 'squeaky' conversation this afternoon.  I felt like I got to do some 'Mom-ish' things with him today which is always kinda nice.  You can all laugh when I tell you how nice it is to be alone with him and change his poopy diaper and settle him into sleep.  It's not much and it might stink (figuratively) but it's all I've got!

We (the main nurses and I) have come to the conclusion that Braeden is stable when he is attended to by someone who knows him and his quirks.  He gets very unstable and critical when the attending doesn't know enough of his signs to try to help him BEFORE he is in distress.  What does this mean?  Not much considering they are going to be moving  him to the PICU sometime soon.  Guess what it means is that I should be writing a "Braeden Handbook" for any of his new nurses.  I'll start that one in my spare time...

I've Got My Eye On You

Daddy, T and Ry

I just want to start by saying what a huge success our Blood Drive was on Saturday!  I only got teary eyed a few times but kept it together for the most part.  We had 10 spots to fill and fill we did!  Many of our donors were also first timers, how cool is that?  Hopefully that means it is the start of a trend!  A HUGE thank you to Lorna Zebedee, one of the best friends one could ever hope for, for having the brain child and organizing it in Braeden's honour.  The boys enjoyed watching and even held hands with some of the donors, especially their Dad (wouldn't want Daddy to be scared!).  Thank you to Jenn Mills, Kathy Mills, Tania Stephenson and her Mom, Greg and Katja Bessy, Colin Mostert (Cheered on by his partner Sara Strong and their new son Hamish after driving in from Canmore to be there with us!), Nancy Osness (not sure if you got a later appt or not) and Lisa Goldie (who got a cold last minute but will donate soon!).  I would also like to thank the donors that left cards for us and donated in B's name, I was very touched. 

One of my tear jerker moments was when we were all gathered at the snack table and a woman that was at a table close by came by on her way out and handed me a note written on a napkin that said, 'Lots of love' with a 20 dollar bill stuck inside.  She had tears in her eyes and I was gobsmacked into silence.  All I could muster up was a "oh my goodness, thank you!".  It was wonderful to watch the patrons reading B's story and those that chose to donate in his name just are all in my heart! Thank you too to Nurse Lisa who donated on the Tues before for Mr.B, bruise and all! (pictures of the drive to come)  For anyone I've forgotten to mention, or for those of you that are regular donors (like my Aunt Lorraine and Uncle Adam and my Uncle Brad) or for those of you that have donated but not mentioned it...THANK YOU!!  Please post on the FB wall if you have donated, I would really love to have an idea of the sheer number of donors that have become of this!

Onto Mr. B!

He is back on high flow nasal prongs!!!  YAY MR.B!!!  He seems to be doing well on them and they are certainly easier to keep in his nose than the C-PAP.  He is on 5 litres which is a lot but that's okay!  He is certainly feeling a bit happy with the change as he loves to smash his face in his blankets when on his tummy and catch a few winks like that.

I am feeling a wee bit like a yo-yo these days!  Do we stay or do we go is the question right now.  Braeden is the ripe old age of 12 weeks today, Happy Birthday Baby Boy! which means he is now 'too old' for the NICU.  We were told last week that he'd be transfered to the PICU in the next two weeks or so, that to me meant by Monday (which is today).  Once the Dr's get an idea in their head there usually isn't a wait time associated with it.  So when they announced yesterday that B would be moved over that afternoon or today, I surely wasn't surprised.  What is surprising is that anxiety I feel by changing over.  It is all a bit silly being as they are  bound to have wonderful Nurses and Dr's there as well, it is just a comfort thing.  We've been at Children's for almost 10 weeks now and I know most of the staff quite well, not to mention my favourite nurses and B's favourites too!  So the PICU was waiting on a discharge in order to get Braeden a bed over there.  He'll be given a big boy crib and everything!  I guess what it is is that I'm not good with change, never really have been.  I can generally roll with it but I find the older I get the harder the 'rolling' part gets.  I got called last night that he wasn't being moved until this morning now, and got told to just relax and get some sleep (ha). 

I arrived this morning fully expecting B to be getting ready for his big 30 foot move and was told that he wouldn't be going over now for a few days because they have a bed finally but not the staff to cover him. Sheesh!  Then I get word tonight from his day nurse that the unit clerk from unit 2 was by to see him and they are considering sending him up there instead!  Yikes!  Can you say anxiety jump?  I've got nothing against the unit 2 but in my opinion Braeden's needs far exceed a normal unit right now.  I guess I sounded panicked because Trish (B's primary and the charge nurse on) called me back to tell me she'd check into it.  The Neonate called me back and I again voiced my concerns about having a baby in a big room unmonitored that can't scream, he has NO voice still!!!  Anyhow, the Dr is going to do a walk-through the ward tomorrow and get a sense of the environment and if they are equipped to handle a serious case like B.  What it comes down to is that he is 1) now too old for the NICU (he's not a neonate anymore after 44 weeks gestation) and they are desperate for his bed, 2) PICU should take him but they are short staffed for such a case and 3) unit 2 has space and the staff but not necessarily the ability to handle his specific needs.  Unit 2 is generally for stable babies on their way home, not babies that have in the very least several more months in hospital ahead of them.  I'm trying not to freak out, really!  (which is why I am typing madly at midnight, again)  Braeden can certainly have times when he is quite stable, like when he is asleep but my main concern is that he is still unable to maintain his sats when he gets upset.  It is also hard to hear a baby that makes no noise and to get to him before he is well and truly upset and setting off all the monitors because he can't breathe anymore.  Wherever he ends up I'm sure it will all be fine (keep breathing, keep breathing) but it is certainly going to be a change from the small intimacy of the NICU at ACH.

On the less stressful side of things Neuro was by to see him today and they were happy and satisfied by what they saw in terms of changes.  His reflexes were good and they did get a chance to see him awake and settled as I was holding him during the visit.  Neurology also concurs that they think that the testing for the mitochondrial disease is unwarranted.  So yay for that.  Guess the Dr's aren't satisfied with  my diagnosis of 'Braeden Syndrome'!  A testing we will go, a testing we will go, high ho a cherry oh....yeah.

The latest and greatest (?) addition to 'Braeden Syndrome' is a tear-drop shaped or oval pupil in his left eye.  We are now waiting for an Opthamologist to take a look at this one.  We don't know if this has been there since birth or since the strokes since he's just now really started to open his eyes regularly.  I'm trying not to speculate but it can be caused by several different things like a detached retina or brain trauma (can you say stroke in the vision area of the brain?).  No point stressing on it until we get a specialists view of it and opinion. 

Wow, this Braeden Syndrome is pretty complex, one should write a book about it or something!

A Grin for Me!

I have to start by saying 'WOW', the blog has been viewed over 10,000 times!  Thank you to all of you that are reading this and supporting our journey.  Not bad with only 8 members! ;)

I know I've not updated for a few days because no updates means my phone starts ringing!  Not that this is a bad thing but I'm also not the easiest person to reach these days. 

We are excited about our first Blood Drive tomorrow at 9am.  We booked 10 spots and I am so happy and proud to say they are all filled!  Thank you again to Lorna for all of her hard work and for thinking of this to begin with!  I want to say a big thank you to my favourite oldest sister for donating in Victoria last weekend!  I am so touched by those of you willing to donate and just from all the support that people are offering.

We've had an interesting few days.  Braeden is not going for the mandibular surgery just yet that was the conclusion of the meeting of the 'powers that be'.  I am so impressed and thankful to Trish (one of B's primary nurses) for coming in on her day off to join the meeting therefore giving me more access to info as well.  The Dr's have come to the conclusion that they've not ruled out enough stuff and want more testing done first.  Basically what I think is that they are a little unsure about how B will react to another surgery and are erring on the side of caution therefore giving him time to grow stronger.  One interesting fact is what they saw in the MRI is higher than normal levels of lactate which can signify mitochondrial disease.  The specialist did review Braeden though and her thought is that the test for the mito is too high risk/intrusive being as he is at the lower end of possibly having this disorder (they take a muscle biopsy).  We also found out from the CT scan that Mr. B's jaw is smaller than they anticipated AND he is missing part of his jaw.  Take your finger and trace down from your ear to the bottom of your jaw and that is what is missing.  Which means a bigger surgery essentially.  So more hurry up and wait, which i am actually okay with, he needs to build his strength so that he can survive the surgery. 

We are also in the process of beginning the transfer into the PICU.  They are sending over some of their team members to meet Braeden and get to know his needs.  The head nurse told me it will be sometime in the next two weeks but I think it will happen sooner rather than later.  The biggest problem they will have in the PICU is staffing because they generally have one nurse to two rooms but with B being on the C-PAP he needs constant care.  One thing I have been told as well is when he is transferred over to the PICU that I'll be expected to spend MORE time at the hospital...uh, I have two other kids to raise.  I'm not putting too much credence into this just yet, I need to get my feet wet there first before I start freaking out. 

There doesn't seem to be too much concern around the hematomas in the head, which is a good thing I suppose.  The Neurologist I spoke with today is convinced of a 'syndrome' but can't tell me which one, not so helpful.  I just keep telling everyone he has 'Braeden Syndrome'.  Braeden can move all of his limbs, he just doesn't that much.  When he had a neighbour for a few days that was about to go home, I saw the dramatic difference a 'healthy' baby has over him.  It is funny what you can forget even though I've had two other kids.  Whatever you live becomes your 'normal'.  I do miss our old roommates though, Jaime and Mike, some people you just connect with (and are just more quiet and respectful).

On a happy note, Michael and I had a wonderful visit with our baby B tonight.  He was mostly awake when we arrived and stayed awake until we left.  He did give me a full-out grin today which was so good for my spirit!  He was just content tonight which is saying a lot. 

So basically the result of the meeting is more meetings and more tests.  Mr. B will hopefully get stronger and when they do decide the time is right we'll be a bit more prepared for the undertaking.

I have been trying to decide how much to write about 'me' and I figured if I'm going to be honest about Braeden I need to be honest about me as well.  I had a very rough day Wednesday and wanted/needed to pretty much sleep all day.  I had to force myself to shower and go to the hospital even though I have the desperate need to see Braeden, it is still exhausting.  People ask me all the time how I do it and I don't know, I just put one foot in front of the other because I have too.  It is hard when you have limited sleep and when there are nights that I awake in a panic because I need to know if B is okay.  The truth is that I've dealt with depression on and off my adult life and I surely felt myself slipping on Wednesday.  I am painfully aware of the signs of depression, it is just whether or not I chose to pay attention.  My actual thought Wednesday was 'oh postpartum, here we go'.  I had a decent bout of postpartum after Torin was born but I know there were mitigating circumstances around that.  I had 'baby blues' after Ry but that is all they were, they didn't go as deep as depression.  I haven't had an issue with depression for quite a few years now but with everything that is happening I know I need to keep a close eye on my mental health as well as physical.  Of course Michael is very in tune to me as well which helps.  A good thing about being part of the NICU is that the nurses are trained to watch for it and they can be very helpful.  So I had a rough day, but I've had better days since and I'm feeling like I'm not at the point of needing medication yet but I'm not ruling it out.  By saying it out loud on here I'm also announcing that I am needing to pay attention to my head and the body as you are all my witnesses.  I am not ashamed to say that even though I put on a strong face there are just going to be days where I might need to sleep them away.

Did I mention we are doing the Blood Drive tomorrow?! :)

Alberta Children's Hospital Foundation: How to Help - Get Involved

ACH is holding a radioathon in February 8-10th, here is the info. I have been struggling with whether or not I want our story on it or not.  One thing that has certainly come up with this whole process is that I really want to give back and if Braeden's tale will bring in donations then that is worth it.  My dilemma lies with whether this is the year to do it or if I should wait a year when we might have a more 'postive' to it all?  Please let me know what you all think.

When you rely on a hospital to keep your child alive it changes life and the way you think. Please click on the link, even if it is just to take a look. There are many stories that can touch one's heart and you don't have to donate money, you can donate in other ways too.

Alberta Children's Hospital Foundation: How to Help - Get Involved

My Enigma

New two week run, new Neonatologist Doctor. 

C-Pap rigged up to stay by Trish

I came in yesterday morning knowing Braeden was due for an MRI that day what I wasn't expecting was the new Dr telling me that he would need to be intubated for it.   I asked what on earth for (as he is currently mostly stable on the C-PAP) and he explained it was for his safety, to keep an airway open.  You cannot take the C-PAP in the MRI room as it is metal (the machine) and an MRI is a huge magnet.  I asked why they couldn't just put him on the high flow prongs (nasal prongs) for the test like they had him on last time.  This is the frustrating part about switching Dr's, he 1) didn't know Braeden had even HAD another two previous MRIs and 2) didn't know he'd done one on nasal prongs.  Why on earth would you intubate a kid just for the test?  YIKES!!  I know he was making what he thought was the best decision with what he had (and in his defence B's file is HUGE) and his decision was based on not knowing how B would react with the test (MRIs can take awhile).  I explained he actually enjoyed the MRI last time because he gets bundled in a 'pillow' of sorts to keep them still and calm.  SO, Mom saved the day (yup, toot toot) and he got to go in on nasal prongs.  The MRI was scheduled to take a look at his jaw and area to assess it for surgery andsince they were doing it I asked if we'd look at the neck/head clots as well (especially since they didn't see any on ultrasound).  We didn't have results by the time I left in the afternoon so when I got back that night the Dr was off (they do 7-7) and the on-call Dr wasn't available.  I was told by the charge nurse that I would have to talk to the Dr in the morning about it.  Red Flag 101, if you have to talk to a Dr, something is on the results.  I assumed that it was in regards to his neck clot and went on to have a reasonably good night.  Michael and Braeden FINALLY had a good long cuddle without B freaking out so that was very nice to see.

Braeden, Squeak, Mr.B, Baby B, B, etc. has the Dr's once again scratching their heads and once again it is not in a GOOD way.  I arrived this morning to find out that they had Mr. B scheduled for a CT scan.  Wha?  Apparently they didn't get a good enough look at the jaw with the MRI, why contrast wasn't used I'm not sure as I signed off on it.  But CT is better for looking at bone structure whereas MRI is more for soft tissues.  Okay fine.  I listened in half-heartedly during 'rounds' but was paying more attention to Braeden than really listening.  The new Neonate Dr (I can't remember his name!) came in to talk to me and asked if I'd seen the MRI results.  I said no and he told me it was easier to show me rather than draw a picture...uh oh.  He pulled them up on the computer in the room and proceeded to show me two sub dermal hematomas.  Braeden has had two hemorrhages sometime in the past 14 days (since the last MRI) at the front of his head.  Now they are not in the brain, these are not further strokes (that is the good? news).  The hemorrhages happened between the brain and the skull in the dermal layers there and there is some swelling around the brain but it is not severe (bleeding causes swelling, swelling can cause more bleeding....etc).  His plates of his skull are not gaping open, they are still close together so that is another good sign that his brain isn't under much increased pressure.  So what does this mean?  To HELL if I know! 

The Dr gave me nothing, no ideas of why, just that they didn't know.  How's dem apples?!  He was very kind about it though and did go get me some klenex when the tears started rolling.  What a great start to the day!  They had called a transport team to come for the CT scan but had only had short notice of the time so the nurses were scrambling trying to get things done but not completely sure of the protocol.  We have a (very nice) Sub for the the NICU manager who is away for two weeks (at a conference in Florida, I'm jealous Kerry), and RT that I've never seen before yesterday who hasn't done a CT at ACH yet and our nurse who I've never met.  Lovely Barb (who was supposed to be our nurse but got switched to a more severe case) came in to do his IV and it was done lickidy split without much fuss (she kinda has a crush on Mr.B).  Thankfully the transport nurses actually were able to make it and I was happy to see them as they were the nurses that transported him to his surgery in Edmonton.  Jan and Jaime are both wonderful and I felt more at ease with them both there.  They got him ready to go and we got a call to say the CT techs had gone for lunch...wha???  Here we have a crabby baby that is NPO (no food before test) and is ready to go.  I told Jaime that if they needed me to go down there and converse with them I would be MORE than willing to!  Plans changed and we were about to head out the door when Jan realized that his IV was out (little turkey).  No time to put in a new one, so off we went down the hall to CT.  Jaime then got the fun of trying a line in his head (picture him bundled up completely so he can't move and therefore has no appendages sticking out), line in and baby was put on the table.  Line out.  Frick!!!  Unbury a foot and line in, fingers crossed and recrossed it would last.  Of course all of this for a five minute test if that!  CT done and a very dopey baby and I head back to our room.

Mr. B and I had a really nice snuggle after the CT because he was so dopey and I could just kiss his little cheeks as much as I darn well wanted and he didn't care.  It was what I needed, a little cry, a lot of kisses and a good squeeze of my little man.  I was hoping to chat with the Neuro but no such luck today.  I did enquire to the Neonate to how it is we don't know if he is having hemorrhages anywhere else and he told me his sats and blood pressure would be noticeable, not to mention the nurses should pick up on it.  Like we all did with the cranial ones???  I did have a better afternoon though because Barb and Dawn (the dynamic duo) made me laugh with their brash (Barb) sense of humour and hilarious stories and fed me a muffin.  I will certainly miss many of our nurses when we transfer to the PICU in the next week or two!

I came home for a few hours to make dinner, feed the fam, put kids to bed and such before heading back up to the hospital (you don't want to know how much gas we are going through!).  Braeden was somewhat settled when I got there but Cheryl (night nurse) felt he could use a cuddle so we pulled him out.  He took a minute to settle and we got a short cuddle in but he just kept being unsettled which in turn sets off the C-PAP because the slightest movement (and annoyed babies move) the seal around the nose gets loose and you lose air pressure.  So it was not a good night for a cuddle but I did shower him with kisses again, just to annoy him a wee bit more.  I was happy that I went back up though because one of our older Neonates was on call for the night and I got to see her.  She told me that her thought on the hemorrhages was that they could have easily been caused by back flow from the blockage in his neck, which would create pressure and could easily cause a bleed.  She also agreed with me that yes, also the use of anti-coagulants can cause bleeds too.  Remember that one he had 10x the dose of?  Of course that was before the bleeds but who knows.  It could also just be Braeden.  I've decided he has "Braeden Syndrome".  If the Docs can't figure him out then I figure we'll just name it after him and go from there.  What an enigma my little man is!

I still have no answer on the neck/head clots and no results on the CT.  Squeak's neck and face are more swollen again tonight which means he is taking on fluid yet again.  He has gained over 200 grams again over the past two days so that'll do it.  We'll see what the Dr says tomorrow as he wasn't too concerned about it today.  What I don't understand is that if the clot in his neck is actually gone then what is it that keeps him swollen?  Why won't this fluid drain???  The rest of his body is mostly fluid-free now, he is even getting happy baby rolls on his arms, but his neck up is swollen.  I guess we'll chart it under 'Braeden Syndrome' for now.  The answers for that don't seem to be arriving anytime soon.

We do have a big day tomorrow in regards to B's future though, the powers that be (Plastics, ENT, Neonate, Respiratory and hopefully Neuro) are meeting to discuss future plans and if the surgery is going to be our best option.  I am terrified that they will think it is a good option to do the mandibular distraction surgery but am even more terrified that they won't.  If it isn't the surgery then it will certainly be the tracheotomy.  Mr. B's breaths were really slow today and tonight as well which isn't a good sign and he might just need to be reintubated over the next few days unless they come up.  We need some kind of intervention for his airway, that much we know.  Mike and I are not invited to this meeting (so they can talk openly without the parents freaking out I assume), they will meet with us at a later date but I am actually hoping we can crash in on the end of the meeting instead since they will all be there.  So stay tuned, we might have a short term plan tomorrow.  I'm not sure how my stress level is going to cope with it one way or the other though, I am not doing so well at keeping it together right now.  I know, I know, you all think I need to lose my shit and just get it out but I am telling you, if I let go there my not be enough glue to put me back together again. 

For now at least I can hope for a few hours of sleep.

A big thank you to April for her blood donation on the East Coast and to Jodi for going in to do her plasma donation today in Braeden's name!

An Exhausting Read

People ask me all the time how I am doing.  My only real answer to this is that "I'm upright".  I can't begin to explain what life is like or how I really feel, I don't think I even know.  I think that I live life in a surreal bubble of just living hour to hour for the most part.  I have two lives that I have to live, one at home with the boys and one at the hospital.  The two lives don't actually cross that much right now because it is increasingly stressful to pair them together.

Take today:
Braeden had a really rough night the night before and couldn't settle therefore I had a rough night of not being able to settle.  I call the hospital a few times a night (when I wake or get up to pump generally) and he was just miserable last night.  It is times like that that I really struggle, wanting to comfort him and knowing that I can't be in two places at once.  I'm no good to T and Ry when I've got no sleep because I've stayed at the hospital all night only to come home in time for Michael to go to work for 6am.  Braeden has a bad night, I have a bad night.  Braeden has a good night, sometimes I have a good night (it's not a true science after all).  I knew that Mr.B would crash today being as he had a rough night so I had a house clean day and spent time with the boys.  Now keep in mind the constant guilt that I feel that I am never in the right place.  Throughout my day I feel guilt that I'm not at the hospital (yet I know that when I call he is settled and asleep) and Torin was bugging me through the day to take them to the hospital.  Now you'd think, awww, he wants to see his brother.  No, that is really not the case, it isn't that he doesn't WANT to see Braeden, it is just that he wants to see the elevators more.  Now if you don't know my kids (or any child with Autism) you might find that 'odd' but T isn't odd at all, just focused like any other kid on what makes him happy and spending time in the elevators at the hospital (or anywhere else he know where they are), makes him happy.  So I finish cleaning up and we all set off as Michael is at work and I have to drag my Mother along because it is not a task that I can do alone (pretty self explanatory to follow). 

Our arrival at the hospital goes like this:
I start to park and instantly have an upset 7 yr old because I've not remembered to park on the right level, we can't (or don't need to) take an elevator on the floor I parked on.  Oops, pull out, tour the parkade to get to the appropriate level (keeping in mind my stress that I've not seen B all day yet).  I've already pre-explained to T that we will have to see Braeden first THEN elevators.  He's not happy with that but will relent because it is his only choice.  We get to the NICU and the Ry gets upset because he wants to see Braeden but hates having to scrub his hands and arms for two minutes.  Getting past that, taking Torin back out to the bathroom and re-washing hands, we get into Braeden's room.  The nurse had Braeden up in his swing and he was fast asleep so I didn't want to disturb him.  Pretty much from the moment that we set eyes on Braeden Torin knew he could now go see the elevator because he'd now 'seen' Braeden.  We sat for a minute so Ry could get to see B and he really wanted to touch his feet (his little piggy toes were sticking out of the blanket).  Rylan really wanted to see Braeden as they've not been into his room since Christmas day due to them being sick, me being sick and just timing. 

I pulled Braeden out of the swing to hold him and Rylan then had a major pout that he couldn't be the one to hold him.  How is it one can begin to explain to a five year old that if he moves his brother the wrong way he'll stop breathing?  I tried (in vain) to explain to Ry that Braeden isn't like other babies he sees and he can't hold him just yet that he is still far too fragile with all of his wires and ventilation.  So picture Rylan sitting beside me refusing to talk and having tears in his eyes while Torin is at the door "when can we go see the elevators??".  The wonderful part is that Braeden chose that moment to wake up and was really peaceful, he just opened his eyes and stared at Rylan.  He didn't focus on me at all, just Rylie.  I explained to Ry that B wanted to meet him, as he was looking at him and Rylan was somewhat reluctant but happy about that.  My Mom snapped some pictures (while Ry was in tears because we didn't take the RIGHT pictures, try again) and Torin got increasingly agitated.  I asked my Mom to take Torin out to see the elevators but she told him she couldn't ride in them with him as it makes her sea sick.  I explained that I would be out in five minutes and I would ride with him, he was somewhat okay with that.  I wanted to wait until B was asleep again before transferring him (and also felt a huge pang of guilt knowing that I wasn't going to get to spend much time with him at all today). 

I asked the nurse to help me transfer him and she asked if I could please hold him just a bit longer so they could do his blood work while he was calm in my arms.  This was after a few comments were made that I should just stay the rest of the day holding him because he was calm and happy...already feeling guilty thanks.  So I'm holding him waiting, watching the clock knowing that my Mom is dealing with T being upset that he can't actually go IN the elevator and Ry is charming the other nurses into keeping him occupied.  They come in and do the blood gasses (B was a champ) but then his heel wouldn't stop bleeding so I had to sit there holding onto that (tick tick tick).  While I am doing this the nurse turns on the TV for Ry to Treehouse (um, number one rule in parenting, don't turn on a tv show unless you are prepared for the child to watch the show...).  I explained to the nurse (again) that I had to go because my Mom and Torin were waiting for me and I hated to have to explain WHY it was important for me to chose to go to one child over holding the other.  Start to transfer Braeden back to the swing while all hell breaks loose in his room because all the sudden they are trying to move furniture around and are wheeling in a new roommate for him.  Gak!  Give baby to nurse (thank goodness he didn't start to freak out) while she comments that she is a poor substitute for Mom (I KNOW that these comments aren't meant to upset me and I'm sure she doesn't realize she is saying them but still...there are just some nurses that you'd prefer to have all the time, hence choosing a primary nurse for care).  I then apologize profusely to Rylan for 1) pushing his chair out of the way now that there are a ton of people in the room trying to get the new roommate in and 2) for turning off the tv when he just got to have it on.  Again, thank goodness Ry was begrudgingly accommodating and we went in search of Mom and T.  (exhausted yet??) 

We find T and I explain to Ry that he can either come in the elevators with T and myself OR he can go play for five minutes in the play area.  Ry to the play area, T to the elevators.  Elevator up, elevator down, elevator up, elevator down...repeat.  Out on the main floor to meet up with a crying Rylan because he is now wishing he'd chosen to leave with Grandma and Torin when they left the room because he's not had time to play.  Leave the hospital with Rylan pouting, down the elevator, up the elevator to the proper parkade floor and out to the van.  Get kids settled into the van, call Michael to turn on the potatoes for dinner (the meatballs I made before the hospital and are in the crock pot)  and we are off with Torin now in tears because I said that I wouldn't bring them back tomorrow.  We then drove home to Torin crying pretty much non-stop because he wants an elevator of his own and wants to know when exactly he'll get to see one next and why it can't be every day.  Did I also mention when the boys are tired and one of them cries inevitably the other ones cries because the first one is crying??  Home, leave Mike to talk to a still crying Torin now in his room, dinner (enter bailey's and hot chocolate), jammies, teeth, bedtime story x2 (because I am a super Mom) and shut the door.  SIGH.  Get myself ready for bed as I am suddenly exhausted, Torin is now up because he needs to use the washroom again, and finally back to bed.  Two hours sleep for me where I wake in a bit of a panic (not to worry this is my normal), and up to call the hospital to check on B (enter guilt that I'm not there to comfort him) and here I am.  Wide awake at midnight.

It's all really quite exhausting.  The sad part?  This only accounted for four hours of my actual day!  (Keeping in mind it wasn't a typical day in which I meet with Dr's or having to get kids to school and such)  Having a new baby at home would certainly be exhausting as well, but there would be at least things I could do while holding Braeden, like a puzzle with Rylan on the floor etc.  Like I said, I feel as though I live two lives.  I'm never really happy in one life or the other right now because there is a constant need from one child or the other and I can't in any way accommodate all three boys at once, it's not physically possible.  I've tried so hard to keep Torin and Rylan's lives as unaffected by all of this as possible but that only goes so far.  Sooner or later my Mom will need to go home again, she does have her own life and it's not like she signed up to help raise my kids too.  There is just no end in sight for Braeden's hospital life yet, it could still be several months of this dual lives and I'm not sure how much longer I can pull it all off.  I am certainly feeling stretched to the limit most days and my edges are certainly unravelling here and there.  It is also increasingly difficult knowing that Braeden knows when I'm there and can certainly be miserable when I am not, babies need and want comfort after all. He'll be 11 weeks old on Monday and so far he is being cared for by more people than I can even count, not his Mom.

I think one of the biggests things that I struggle with is that I feel somehow ripped off with Braeden.  I know he is our last child and I wanted to enjoy the pregnancy (didn't happen), and really enjoy watching him grow.  I don't get to have that transition when they are just new and you all (the whole family) change and grow around the baby.  I want to have him on the carpet kicking his feet and cooing at me not hooked up to a thousand machines that constantly beep.  Alas, that is the selfish side of me.  I really need to focus on the fact that I need to be so very appreciative that he is still here with us and I can at least love him albeit from afar some days.

The easiest explanation to how am I doing? I'm upright.