Tuesday, 31 January 2012

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!

Saturday, 28 January 2012

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?! :)

Wednesday, 25 January 2012

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

Tuesday, 24 January 2012

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!

Sunday, 22 January 2012

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.

Thursday, 19 January 2012

To Clot or Not??

Okay, so it's been a whirlwind of a few days (yet again).  We never ended up getting the oxygen tent, he calmed down and kinda made okay with his pharyngeal tube.  He did okay with it for the first bit and then the Dr's got an idea from the ENT about splitting the tube and then putting the nasal prongs in it.  I should have taken a picture because I'm sure I can't describe it all that well.  Basically with the first tube it went down his throat but stuck out his nose a good four inches or so, what they then did is cut it off, split it open (in two) and taped those to his face on either side thus leaving a 'hole' in his nostril.  He was certainly happier with this arrangement and the nasal prongs did kinda fit in it (one in the 'hole' and on  in the second nostril), and his oxygen levels were doing really well BUT he decided that he would hang onto his CO2.  When I went in yesterday morning to find out about the new tube he was sat-ing well with his O2 but his CO2 was 120 when it should be about 30.  Not a happy baby and can't say I blame him.  SO, the Dr wanted to go back to the old tube (sticking out four inches) and I asked if we could please try the regular C-PAP again.  She agreed to try it out and he got it on and settled right down.  Yay for Mom!  Now for those of you that have been with me since day one you might recall that he wasn't a huge fan of the C-PAP at Foothills but I think that given the alternatives he was happier.

He had a 'good' night on the C-PAP and his CO2 came down into the 60's (which for him is good).  When I came in THIS morning his room was full again because he'd been struggling with the mask of the C-PAP so they switched him over to the nasal prongs (still C-PAP).  Braeden also lost his cook catheter over night (his last central line), the line into through his arm feeding into his chest.  Thankfully he's done his six week stint of antibiotics and he is now hopefully able to handle regular IV lines again (come on veins!).  We had a nice hold and cuddle and his nurse had a two hour meeting she needed to attend so we agreed to put him back into bed and get him settled so she could go to her meeting and I could go and pump (not to worry, there was still another nurse present). 

Let's go back to yesterday...
They've had B on Midazalam for the past few days just trying to keep him settled because when he freaks out he gets starved for air (resulting in a not-so-pretty shade of blue or purple).  Yesterday he got a dose to get him through his ultrasound since it was going to be a long one.  They did the ultrasound of his abdomen and his neck to check out those lovely clots and it takes about an hour to complete.  As he was laying through the ultrasound I was beside him so he could suckle on my finger (doing our OT exercises!) and I noticed he started twitching.  Once, twice, pause again.  Twitch, twitch, twitch...hmmm, could you please stop because I think my baby is having a seizure!  Went to fetch his nurse and Fellow (Dr) and she confirmed seizure activity.  Now at this point I was close to losing it, it has been weeks now since a seizure so it was not cool to see again.  They drew up the phenol barb (anti-seizure meds) but didn't administer it because he stopped.  The Neonate Dr came in to see him and said that the Midazalam can also cause seizure activity...Fab-u-lous!  I was pretty much fried by that point and to have all the Dr's and nurses looking at me waiting for me to lose my shit certainly didn't help. 

Back to today...
Instead of the Midaz to calm him his nurse gave him a new drug (sedative as well) before her meeting.  Drug was given, nurse left and not two minutes later all hell broke loose.  Braeden freaked out, back arching, ripping off his mask, turning blue then purple and me alone in the room trying not to panic.  I left the alarm ringing to signal that I needed help (one usually turns off the alarms because the constant ringing doesn't help with the nerves in a crisis), and a nurse came in. "Everything okay?" (alarms ringing keep in mind)  "You mean aside from my BLUE baby????"  It took three of us an hour to calm him down.  His main nurse was gone to her meeting...a meeting in which the Neonate and other heads were attending too...lord love a duck!!!  The nurse that was left to help out was a seasoned nurse but she didn't exude much confidence which really doesn't help a parent who is about to freak out too.  Needless to say my nerves can't take much more these days, they really can't.  I had to actually walk away, I wasn't sure if I was going to scream, cry or punch someone.  I ran into the Neonate coming back from the meeting and explained he'd been FINE till he had that new drug.  She believed that it was too fast of a turn around for a drug reaction but also said with Braeden, anything is possible.

Back to yesterday...
I met with the Plastic's Dr, nice guy with some fancy clothes!  He was pretty confident about Braeden being a candidate for the mandibular distraction surgery.  He did want confirmation from the other powers that be though and an MRI of the jaw to confirm that B doesn't have any other 'surprises'.  He went through the possible side issues with the surgery, like nerve damage, scaring, damage to the tooth buds, etc.  All in all, this surgery is actually more major than his heart surgery just a wee bit less scary as it doesn't involve a major organ.  We talked for a bit about the pros and cons and to be honest, the surgery doesn't freak my out as much as a tracheotomy.  When he left we had a tentative date for surgery for next Weds.  I was so stressed yesterday that I came home and was in bed by 8:30.  The biggest fear with another surgery isn't the surgery itself it is the after.  Being as his last surgery almost killed him, I think my panic is somewhat reasonable.  It was all I could think about yesterday and this morning, were we making the right choice??

Back to this morning...(before the crap day)
When I got in (after B got settled for the cuddle), Dr.Boulton (Neonate) came to talk to me and confirmed that she too felt like we were rushing to fast into the surgery.  They 'powers that be' were supposed to meet this afternoon and they couldn't get their schedules to coincide (a sign maybe??) so they weren't going to meet until next week.  I felt instant relief and expressed this to Dr.B, I too realized that I felt we were rushing forward.  So for now the surgery is still going to go ahead but we are going to approach it more cautiously and look at doing it in three weeks instead of one.  That way too we can get all the ducks in a row and be confident that we are making the right choice.  Phew.

The INTERESTING part of my day is the ultrasound results.  You were just waiting, I know!  The ultrasound tech did NOT find any clots yesterday in the liver OR the neck.  Now, I want to be excited, don't get me wrong but until I hear from the MRI that his neck and head are clear I'm not doing a happy dance just yet.  Maybe the blast of 10x's his meds worked in his favour???  For the nurse's sake let's go with that.  He is now off the emoxiparen (anti coagulant), one more drug off the list.  So I'm counting it as a victory for now, albeit a small one this is Braeden afterall!!!

I know this blog post is a bit all over the map but it is kinda my mental state at the moment not to mention I am well aware that I'm not the easiest person to live with either!  Small victories, I didn't lose my shit but I did know well enough when I needed to leave the hospital and just breathe so some of my mental state is still intact, yay.  Braeden is still on the C-PAP for now and has not had to be reintubated just yet, yay.  The big news?  Mr. B got his first bath tonight, he only had to wait just shy of 11 weeks for it!!!  YAY for Mr. B, he loved it.  Sad part? Mom wasn't there (or told ahead of time) and the NICU camera isn't working...SIGH, tomorrow is yet another day.

Monday, 16 January 2012

Breathe Baby, Breathe

Well I certainly had a craptastic day today watching my son turn many different shades of blue over a 12 hour period.  We seem to have taken yet another step backwards here which would explain my bailey's/hot chocolate, heavy on the bailey's (it is -39 windchill right now!).

Braeden has had issues over the past few days with maintaining his oxygen and he has needed more support because of it.  He is seemingly 'fine' until he gets upset (which has been happening often) and then can't breathe.  One can only assume when one can't breathe, one panics which in turns means now you really can't breathe...etc.  Because of his increased need for support, they did a chest xray today to check out his lungs and they were thankfully unchanged from last week.  He also doesn't seem to have any major secretions to see either so this leaves us with the explanation that he is getting bigger (yay for growth) but his body's system isn't able to support it yet.  He has been on his nasal prongs for a few weeks now (since Christmas day) and has been doing okay on them but any time they have tried to wean him he's gone into respiratory distress.  The number one problem with the nasal prongs is that he hates them, he hates having anything in his nose (I can relate) period.  I can't tell you how many times he's ripped out his nj tube (nasal feeding tube) so the prongs don't stand much of a chance.  He had been doing better being in a prone position (tummy) with the tongue falling forward leaving the airway open but that hasn't been working the past few days either.

So, the first step with the Pierre Robin's Syndrome is the nasal pharyngeal tube.  Essentially a tube down the nose to the top of the throat (no interference with the vocal cords), that keeps the tongue forward and gives an open airway.  They opted to try this approach today, needing to do something since we'd all rather not reintubate if we can get around it.  Needless to say as per my first sentence, it didn't go well.  The plan was to insert the tube and maintain the nasal prongs...now keep in mind he also has a feeding tube in his nose...nope, not gonna fit.  So they hooked it up to the C-PAP machine to give constant pressure/air down the one nostril....did I mention he hates things in his nose???  To say he was unhappy would be to say it is summer weather right now, NOT.  It was HORRIBLE, absolutely terrible to have to watch.  I finally had enough and told the Dr I was going to put him to the breast to at least offer some comfort (keep in mind I'm not supposed to be nursing him but I was at my wits end).  Being that Dr. Bolton is wonderful she agreed.  He was instantly soothed (damn it is frustrating when mom and babe both want to nurse and can't!!!) but it only lasted 10 minutes before he was angry again.  Of course it didn't help that the ENT Specialist chose that nicely settled time to come barging in with his baritone voice to talk to me.  Finally Dr. Bolton (told you I like her) told him to go away, he was upsetting Braeden too much!  Unfortunately he was back to inconsolable and right pissed off.  He got 4 doses of Midazalam (Valium essentially) to calm him but it didn't do much good.  The Dr figured we could have downed a baby elephant but NOT Braeden!  The problem is that you can't sedate them too much, then they don't bother to breathe anymore!  We finally got him somewhat settled with laying him on his side with the nasal tube still in but also with the constant flow of oxygen from an oxygen mask beside his face.  Basically the biggest hurdle is that Braeden is a mouth breather and has been since day one.  Babies aren't supposed to breathe through their mouths, they are supposed to only be nose breathers but Braeden likes to be 'different' (aka difficult).  Unfortunately what this means is that the tube is essentially useless to him.  There isn't much point forcing air in his nose if he is just going to open his mouth and let it out (which is what they have been struggling with since birth).  When I left tonight his nurse was arranging to have him fitted into an old-fashioned oxygen tent and they were going to remove the tube.  The Dr figures that since he is breathing through his mouth (and is seemingly able to do it consistently) that if he is put in an oxygen rich environment he might just flourish there.  Now the big question is how long can he be in here?  Each time he is assessed his oxygen levels will drop because the tent is opened and such and how happy is he now going to be without being held?  I don't know and nor do they.  It is however a better option than reintubation (which could still happen before this day is out).

The big news (and again, not great news) of the day is that because of all of these new developments we are most likely looking at surgery yet again.  Braeden is going to be assessed by Plastics Wednesday and he will then decide if Braeden is a good candidate for "Mandibular Distraction" surgery.  (I found a useful link but if you are going to open it and follow the little boy's story note that the pictures are a bit hard to take at first) http://www.pedsent.com/surgery/swfs/distraction/distraction.htm  Basically, sorry if you are queasy, the surgery cuts apart the jaw and fastens screws into it.  Then over a period of 7 days or so the jaw is stretched and forced to grow essentially.  There are other alternatives of course, one being that we wait the next 6-9 mths in hospital for his jaw to grow naturally (they usually 'catch up' eventually) and try to keep him oxygenated for this time OR a tracheotomy (which is 12-18 mths of yikes!).  Not great alternatives eh?  Insert expletives as needed or more bailey's (it is cold after all).  Now don't you worry, I have over a thousand questions too about whether or not he'll be a good candidate.  All of the swelling left is still in his face/jaw and there is the little issue of these damn clots and why they are there in the first place.  We are having an echo cardiogram (heart) done tomorrow as well as ultrasounds of his liver and neck (both clot areas).  These will hopefully (fingers, toes, arms, legs, hell! anything crossed) show us that there has been improvements.  I'm not holding out too much hope however at this point, not because I don't want to believe, it is just that nothing with Braeden goes as planned.  So, tests tomorrow and an evaluation from plastics Weds, yuck.

Did I mention at all in the past 10 weeks (happy 10 week birthday today baby), that this kid needs a damn break???  SIGH, certainly not in the most positive frame of mind tonight, even the bailey's isn't cutting it.  At one point his nurse today looked up at me as we were on alternate sides of his bed trying to soothe him, and said, "you are one strong woman".  I was caught off guard, and said, "excuse me?".  And she laughed and said, " you are just going through this".  My response?  "Yeah, don't worry I'll lose my shit later!".  Eh, Braeden gets his Midazalam tonight and I get my Ativan, we are certainly both should be headed for a mellow night tonight, (if only).

Tomorrow is another day and one that will start with having to explain to my darling 5 and 7 yr olds why I was at the hospital for 12 hrs yesterday and why I will be doing a repeat today.  Good thing they love their Mommy and an even better thing that they've got a Grandma here to care for them so said Mommy can be off at said hospital.  It doesn't seem to get any easier, even though we've been at it for 10 weeks now (13 weeks if you count the time in hospital first).  It doesn't seem to matter where I am, I'm usually not in the right place (or so I feel).  Guilt is certainly a useless emotion but one that cannot be controlled when you are a parent (or so I find).  Sadly, no advancement on the cloning yet.  However!  I did see a program last night (gotta love late night pumping) about a guy who spent 10 years and $100,000 to clone his dog...maybe there is hope for me yet?

On a happy note: HAPPY BIRTHDAY to one of my favourite sisters (yesterday!)!!!

Friday, 13 January 2012

Pulling Fingernails

Happy 7th Birthday to my Sweet Boy Torin!

YES, a full elevator panel!  Thank you Jodi!

Not quite the 'happy' face I was looking for!

I've not posted in the past few days because I've been too busy feeling sorry for myself really.  I've got a wonderful sinus infection and am now on day four of NOT seeing Braeden.  Not only not seeing Braeden, but not touching Braeden, not soothing Braeden...not not not, ugh.  Ask any new Mom how she would feel to have someone tell her she CAN'T see her 9 week old baby for four days!  I've not been turned away, I've chosen not to go for both of our healths but it isn't an easy decision.  I can't stand being away from him (yes, I've got the shakes), but it would be a thousand times worse to get him sick when we've come this far.  To be responsible for causing him anymore pain and discomfort would be akin to having my fingernails pulled out.  So here I sit, feeling sorry for myself.

On the good news front, we do have people signing up for the Blood Drive on the 28th, very exciting.  Lorna and I are meeting with the coordinator today to go over the details but they (from what Lorna tells me) have been very wonderful and supportive thus far.  I am so proud and thrilled at the response we've gotten and not just here in Calgary.  My sister-in-law Ang has already done her donation in Mission and people have written me to let me know that they are regular donors as well!  To be a regular donor is an amazing thing, it is such a wonderful gift that you give!  I've always been turned down when I've gone to donate in the past few years as my iron is perpetually low but I figure with all of the craziness of life and the amount of homeopathics and vitamins that I've been taking trying not to get sick (ha ha, had to give in sooner or later obviously) that I might be just over the line.  Here's hoping!  I will certainly stick my arm out and hope for the best next Saturday.  I will be alongside my first time donor husband who will be just starting out on his donating career (don't worry, I've volunteered him!).  I asked Braeden's nurse to look back over the chart to see how many transfusions he'd had and she told me 6 full blood, 4 plasma and 18 platelet transfusions JUST since coming to Alberta Children's Hospital!  This does NOT account for the number of transfusions he received in the first few weeks at Foothills or the amounts he received in Edmonton after his surgery at Stollery!  YIKES!  It's no wonder why genetics can't poke him, his own genetic make-up isn't in his blood!  If that doesn't show you the value of being a blood donor I don't know what will.

Mr. B has had some low key days it would seem without me.  Is it wrong and completely crazy to be concerned he might not remember or need me???  Ah, hormones, how I love thee.  He has been pretty quiet the past few days but it could also have to do with getting his first set of inoculations on Tuesday.  I was going to post pone them, given what his body has been through but I figured it would be better to give him them and have him under a watchful eye instead.  When I explain to Docs or Nurses that I have a child with Autism and I have a different view of shots I get the "Oh man, here we go!  Crazy Town!!" look.  It is quite funny really!  Now, there is no need for a soapbox here but I DO strongly believe that we SHOULD inoculate, I just don't think that one size fits all.  If your child is ill or a preemie or has bad reactions, I don't think we should feel pressured to get our shots all at the same time is all.  Poor Torin lost an entire week of school with his last round of shots (that I delayed a year, yep, don't care if ya call me a bad Mom) because he couldn't lift his arms.  You can tell me the goodness in them, I get it, I know it is important but you CAN'T tell me that they don't cause any effect in the child getting them.  I've seen it first hand.  Now we might as well get it out of the way (since I'm so completely off topic of Braeden), NO I don't think that shots 'cause' Autism.  I think the rest of this discussion should be in another blog however!  How I wish I had kept a blog when Torin was diagnosed!

Back to Braeden.  They are tossing around the idea of inserting the nasal tube to help him breath but they've not come to a final decision on that yet.  The nurses are trying hard to keep him on his sides and front to see if it makes a difference in his oxygen levels or not.  Mike said when he went up last night B had his face buried in the blankets because he was on his tummy.  Guess he can't really smother himself with the nasal prongs blowing air up his little nose but still, yikes.  I'm just glad he's been able to get more sleep than me!  How am I supposed to get healthy when I can't sleep because I can't see my baby?  Not sure on that one.  Good thing for my antibiotics I suppose.  I am going to sneak into his room today however since I'm on the antibiotics now.  I've got to go in and drop off the breast milk (yes, HAVE TO, really), and I'm going to take a look.  If all else fails he is on the ground floor and he might just have a Mommy sized face print and hand prints on his window tonight!

Tuesday, 10 January 2012

Your Life Can Suck Too! :)

Mr.B had a very rough day yesterday unfortunately and needed yet another transfusion of blood cells and then followed it up with lasiks.  He was uncomfortable, upset and sweaty most of the day and when they drew blood they found he needed a transfusion.  We can be happy though, it is the first transfusion that he's needed for awhile! 

I have seemingly given into the COLD.  I feel like I got hit by a truck, not so nice.  Being sick is made so much worse by not being able to be near Braeden.  I took Mike up tonight because we were birthday present shopping for Mr.T (who turns 7 tomorrow!!!).  I had to sit in the parent lounge while Michael went into see our little guy...that sucked.  Being so very close but yet not able to be close enough.  It was oddly comforting just being within the hospital though, just the familiarity of it I suppose.  I am taking the homeopathics out the wazoo and just drinking as much tea and lemon and honey as I can put down.  Did you know that sympathy ice cream does not help when you have a cold? Damn.  Although my Mom did offer to make me a hot butter rum...hmm.

You know I realized today that one of the most common sentences I hear from people these days are, "well, I have nothing to complain about compared to you!".  Just because my life is a bit out of the stratosphere at the moment doesn't mean that your life can't suck too!  I guess the true upside is that if I can help people feel better about their lives and situations then that is a good thing right?  Braeden's roommate's Mom and I were chatting tonight and I was so surprise to hear she thought that.  Her life is certainly going to be hard, no considerations to mine are needed!  Hey, being a parent of healthy, typical kids sometimes has its sucky times too! :)

We did get a diagnosis of sorts for B's lack of being able to come off his oxygen.  The ENT (ear, nose throat) believes that B has 'Pierre Robin' Syndrome.  This is due to the small lower jaw he has as well as the tongue falling back into his throat, blocking off the airway.  This is something that he could grow out of (yes please) or they have a couple of different solutions one being a tube through the nose to the top of the throat for an airway and another would be wiring the jaw forward with surgery.  The last option is a tracheotomy, but I'm not even going there. http://en.wikipedia.org/wiki/Pierre_Robin_syndrome It is just another piece of the puzzle that is Mr.B.

Calgary Blood Drive Jan.28th

My WONDERFUL friend of 32 years, Lorna Zebedee had arranged a blood drive here in Calgary.  There are people looking into doing drives in Nanaimo and the lower Mainland for anyone interested in those areas.  This is so very wonderful and amazing!  I will be there for the duration handing out cookies to anyone that needs/wants em!  I unfortunately can't donate myself as I'm anaemic so for those of you that aren't interested or can't donate please still feel free to come out and support those that are!  You will need to book an appointment before that day if you are going to donate.  Please contact Lorna via the facebook link or at lornaz@shaw.ca.  The info is as follows:
Hi everyone! I have just heard back from Canadian Blood Services here in Calgary and our blood drive is now booked for Saturday, January 28th, starting at 9am (the earlier dates were already booked). The blood drive will be at the main Calgary Blood Services location, 737-13th Avenue SW. There is free parking. As I will need to confirm numbers, can those who are able to join us on that date please confirm either on this page, or through my email at lorna.zebedee@gmail.com. For more information on blood donation, please go to the website: www.blood.ca. I will post more info as it is available. Please spread the word!

Did I mention how amazing this is?!

Sunday, 8 January 2012

Sparkly Toes With a Wee Bit of a Runny Nose

Squeak's been giving his nurses a bit of a run for the last two days, I'm not sure if it is that he isn't feeling well or if this is his personality starting to emerge?  He is having some 'inconsolable' times during his day now and I am trying really hard not to think it is because he misses me (that sounds a bit pompous I know).  Now that I know that HE knows when I am there I am also thinking that he knows when I'm not.  This whole 'trying to be in two places at once' is not getting any easier that is for dang sure.

Braeden has been struggling with his oxygen again for the past few days as well and they've had to increase his pressure again.  Not a big deal really, just have to keep on trying.  He can be on the lower pressures and lower percentages but if he gets mad or upset (and he surely does) he can't maintain his oxygen.  We are also dealing with an increase in swelling again and weight gain.  Now weight gain is great, he is a baby after all and needs to grow but when it is put in together with the swelling it is very concerning to me.  It all seems to be localized to his face right now so that at least that means that I/we can notice it faster rather than if it were all over body swelling.  They did a chest xray today because he is working harder again to breathe and oddly (and thankfully) enough it actually looked better than it did when he was intubated!  Odd, but awesome as well!

He is feeling well enough that they have increased his feeds again, another source of good news.  We'll fatten this kid up soon enough!  This kid is eating gourmet with EBM (expressed breast milk), formula and fortifications into it all...if that doesn't make him grow I don't know what will.  I've come to terms (more so anyhow) with the lack of breast milk, thank you all for your comments and support through it.  He gets what he gets from me and that is all I can do (sound familiar my darling husband? See! I do listen sometimes!!!).  I figure as long as I'm not resenting the pumping then I'll keep it up for now.

He did however have a short visit today from a new visitor (shhh, don't tell).  My wonderful friend Jodi forced me to give myself a break and took me for a pedicure today for my birthday treat (thank you Jackie and Sumyu too).  We stopped by to drop off some milk and she got a chance to have a quick meeting with the little guy.  It is so odd to me that my friends and family haven't seen him and when I walk in with someone who's not met him I am always surprise at their reactions like it is the first time they get to meet him...oh wait, it is!  I didn't realize just how tense I was until the woman doing the leg massage shook my leg telling me to relax...hey, I thought I was.  Guess not.  Ah well, I did enjoy myself and the company at least and it was nice to do something 'normal' (not that I am a regular spa girl, I wish! And I will use the other gc soon Lisa, thanks!).

Back to school tomorrow for my other little squirrels and back to an easier routine.  I am still fighting my cold symptoms, yes I am only calling them symptoms, I will not give in yet.  Braeden was seeming to cough a bit yesterday and I am terrified that I've passed on the boy's bug but the nurses assure me that they've seen no symptoms of it.  I wash and wash and sanitize and sanitize and stay away when I feel yucky (ie: scratchy throat) but it is hard not to be just a bit paranoid!  He's been crabby, trouble with oxygen, how do I not go to worst case scenario?  Just because everything seemingly that could have happened has happened, doesn't mean everything else will right??  RIGHT?? 

Tomorrow is yet another day filled with the unknowns but it is still one more day towards hope.

Friday, 6 January 2012

It's My Life

So we got some 'good' (??) news today, Braeden's left vocal cords aren't completely paralyzed, they did see a wee bit of movement when they scoped him today.  That is good news, it means there is hope that they can come back maybe (I think as this is my interpretation as I've not spoken to the ENT Specialist directly).  He is still very swollen in the neck as well so that most likely has something to do with and the existing clot on the left side of the neck.  Here's hoping he'll be able to scream at me soon enough!  He has his feeds down to the minute it would seem and gets quite annoyed when they are late, how I'm going to be in trouble when it is up to me!  Oh how I look forward to the challenge!

The past few days have been a bit of an eye opener for me.  I saw the wonderful, Dr. Birch (OB that cared for me during the pregnancy) for my post-op follow up and he hasn't seen me since just 4 days after delivery.  He knew about Braeden's hydrops and SVT's because he was in charge of keeping me going so that we could keep Mr. B inside but had no idea of our battle for life for the past two months.  When I was filling him in I could see the change in his face and when I got to the end of our very long list he actually sat on the bed because he was stunned.  When a Doctor is stunned that your child is still alive after what he's had to overcome it is a bit of a shock.  I know how much he's overcome and I know just how close we've come to losing him (on more than one occasion) but to hear a Dr as revered as Dr. Birch be surprised that is what hits home.  This kid is a fighter, of that I have no doubt!  The other occasion was this evening when he had a new nurse caring for him and his day nurse was going over his chart with her to fill her in.  She got past the hydrops, SVT's, and surgery and came to the sepsis when the nurse exclaimed "oh my goodness, this poor baby!  He's been through so much!".  When my Mom and I said at the same time, "oh, she's not done yet"!  How do you even begin to explain to someone what he's overcome in 500 words or less? 

Looking back on the last 60 days I won't dare question how or why he is alive or bother to look and wonder about the future, I'll just enjoy these moments now.  If you take just one of the things he's had to go through I think most parents would be in for a hard road, it really is quite shocking when you add them all up isn't it?  I suppose the biggest thing for me is that I don't (can't) look at the whole picture, I can only look at the here and now and right here, right now, he is an awesome little guy who loves his Mom, Dad and big brothers and loves to snuggle.  He even got to have a look at 'TV' today when his nurse put a toy in his isolette for him to watch AND got his first Grandma snuggle (sorry Jean! You'll have time soon, promise).
Watching his fishies swim

It's been too long since I've listed these so here it goes:

Things to be thankful for:
  • He is ALIVE (I suppose that is a given but it still needs to be said)
  • He is having alert times when he knows you are there
  • He knows when he is hungry
  • He is no longer needing the heat of the isolette, he is maintaining his own body heat (big step)
  • He smiles (although the nurses say it is gas, I say who the hell cares?)
  • We have more good days then bad, to the point that I can complain about not being able to breast feed
  • My Mom (no need to explain any further for those of you that know her and her alter ego Lois)
  • My fabulous boys (all of them) that put up with grumpy, tired, emotional me
  • My new little laptop so that I can write and save my sanity for a wee bit longer (thank you again Leslie)
  • All of our wonderful supporters (that means you too), the list is FAR too long to thank you all individually but you all know who you are

As I am writing this I am realizing that it could be quite a long list if I were to look at each of the wonderfully small things as well.  How fantastic is that?  It feels good to not have to try quite so hard to find the positives these days.

Who knew three months ago that a 'happy' day could be a day when you find out your child's vocal cords aren't completely paralyzed?  It might be bizarre to some but hey, it's my life and I'm happy to live it!