Wednesday, 30 November 2011

Trouble is the name

We had a pretty good day today, post surgery days are seemingly more stressful than the surgery day in some ways.  Braeden's colour is looking better now though and his extremities aren't as cold as they were yesterday so the blood is flowing better.  His blood was quite acidic over night and they had to give him meds to counter act against that but it is most likely due to the stress of the surgery.  He had a fairly quiet night last night overall, he just saves up his drama to hit all at once it would seem.  He is living up to his first chosen name of "Trouble" as he extubated himself tonight.  Thankfully he is doing well on the nasal prongs but they will have to CPAP him again since he is having to work too hard at breathing.  The plan was to extubate him tomorrow morning anyhow but he just decided to do it for them!

Braeden is receiving another transfusion tonight as his haemoglobin levels have dropped dramatically again over the last 12 hrs.  The only real reason for this is if there is an internal bleed somewhere.  The nurses are a bit stumped as his outward appearance is not indicative to this.  They will transfuse him again and if they drop again they will have to do a lot more searching to get to the bottom of it.

Braeden's surgical sight on the heart itself looks good, his heart is strong but he is being a stinker tonight and having irregular rhythms.  He is seemingly having a slow beat every once in awhile.  The Cardiologist isn't super concerned but they will be keeping a close eye on it.  It is more prevalent when he is agitated (like pulling out one's vent tube), so his nurse Jen is going to try to let him have a quiet night.

He did get some wonderful visitors today though!  He got to meet his Great Auntie Sue and his Great Auntie Maureen, both of whom fell instantly in love (I mean how could you not??).  The NICU visiting here thankfully is a bit more lenient than Calgary, although Sue was fully prepared to be 'Grandma' if she had to be!  It was wonderful to see you both!

So the BIG news of the day is that they are most likely sending B home tomorrow.  Yep, tomorrow, 48 hrs out of heart surgery!!!  Yikes.  They will remove his chest tube tomorrow morning and if there are no major changes (like crazy heart rates or haemoglobin issues) they will put in the order to transport back to Calgary.  The only other thing possibly in the way of the transfer is not having a bed in Calgary for him.  I'm not sure yet if they will be sending him to Foothills or Childrens', again it depends on the bed situation.  Mike is driving up with the boys (as is the plan now) tomorrow morning to give them a bit of an adventure and to have them participate in a positive outlook for a change.  We want them to have a chance to see the RMH and play here, they will love it.  I don't want them to view all of the issues with Braeden as negative so some nice time with Mom and Dad in Edmonton will hopefully change that for them both (again assuming we are still here).

I am certainly feeling a bit more relaxed with the surgery behind us, (if you can call insomnia and the shakes relaxed)...

Mend a Broken Heart

I DO NOT EVER WANT TO REPEAT A DAY LIKE TODAY AS LONG AS I LIVE...I'm just sayin'.

 The short (and really important part) version:

Braeden came through his heart surgery like a champ, he is my little hero superstar.  Our baby's broken heart was mended so now we (Mike and I) can all start to heal ours.  It was about 2 1/2 hr procedure and they took a vein (a 'patch) from his arm and attached it to his aorta.  We did not make it before they took him into surgery (Braeden when you are old enough to read this, I'll pay for the therapy for us both!  I am so very sorry my sweet boy, I tried, I really did.)  They had a somewhat difficult time stabilising his blood pressure afterwards, it kept going further down, not up.  The surgeon (my new super hero) Dr. Ross was calm as all and was confident that there wasn't a bleed that was causing the pressure drop.  They did two chest xrays and an echo cardiogram within 20 mins so we could all be sure.  He did have a drop in his haemoglobin and was given another blood transfusion (his fourth so far in his three short weeks).  For any of you that give blood regularly or ever, thank you thank you thank you (I know Jodi is a regular donor and I believe so is his Auntie Mobee).  It is because of amazing people like you that Braeden is getting what he needs.  His incision is about 4-5 inches long from his left side and around his back.  He has a drainage tube coming out underneath it as well for now (it is horrible to see!).   He was really still under anaesthetic when we first saw him as they were letting him come out of it on his own.  When we came back he was very heavily sedated, which he'll be for the next 24-48 hrs, but opened his eyes a crack several times while we was there talking to him.


The longer version (full Mommy guilt involved and will be forever in my heart):

I was going to take the Red Arrow bus up to Edmonton today as we assumed (first big mistake) that Braeden would be in Edmonton for several days before they would do surgery.  I was far to exhausted to be up at 4:30 to get the first bus and the boys were devastated when I told them that I was leaving for a bit which took out the next bus.  I expected a reaction from Torin and Rylan but not the full-out sobs that I got.  My poor little poppins just got me back and then for me to tell them I was leaving again was pretty damn hard to hear.  I felt so horrible that I kept them home from school to spend the morning with them and then they could drive me with Grandma to the bus for noon (mistake?? number two).  I had spoken with the nurse in Edmonton the night before after he'd been transported and got settled, she indicated that they would be doing rounds sometime between 9-1pm and then they would make their 'plan' for Braeden from there.  It was not at all conveyed that surgery could even be a possibility today!  Needless to say when I called at 11:30 (en route to the bus depot), I was beyond devastated to learn that not only were they going to be doing surgery today but there was no way in hell that I was going to be able to get to him on time.  The poor nurse Donna that broke the news to me felt so horrible that I felt badly for her!  We stopped driving, got Mike at work and made the plan for the two of us to drive up instead.  I cried so much waiting for Michael to get home so that we could leave that Rylan asked if I was going to cry the whole way to Edmonton.  I told him that I just might.  I  knew we would be there for when he came out but the idea that I was not there to hold him and cuddle him before they took him in is just so horrific to me.  (I know, I had to make a choice and I do have the other two children that had need for me today, I get all that but it is just soooo not cool still.  And yes, I'll probably beat myself up till the end of time, I'm a Mom after all!)

The surgeon called as we were leaving home to confer with me and get my oral consent for the surgery.  He was very concerned that we were going to drive mock speed to get there and get in an accident.  I suppose that could have been the case had I been allowed to drive...as it was Michael drove very responsibly.  He explained that the procedure needed to be done after he had examined him himself and that he wanted to perform it sooner rather than later.  I had to give my consent to the surgeon and then repeat it to his nurse.  Those were some of the hardest words that I've ever had to say and I hope to never have to say them again to another Dr.  I had to say that "I give my consent for you to perform surgery on Braeden Lousier's (apparently Lousier-Hicks is too much for hospitals to deal with so he is just baby Lousier for now) heart today".  UGH!!!

We did make it with plenty of time to sit and wait out the rest of the surgery. And do the wait, wait, wait...his surgeon came out to let us know that it had gone well and as planned.  He explained the procedure again that he'd opted to do the patch not cut out the narrowing and that he was stable.  He also said that one in five kids will need a second procedure but using a balloon (angioplasty?) to widen the space was often effective enough.  Like I said earlier, he was pretty out of it at first but did open his eyes and note that we were there with him later (which again breaks my heart that I wasn't there earlier. Nope, won't be letting that go just yet!).

I let Mike talk me into coming home to rest, I mean sleep.  We were truly fortunate that a room opened up at the Ronald MacDonald house as we were en route to Edmonton.  I have to take a moment and tell you what an amazing facility/house this is.  It is set up to really make our lives as parents easier.  It may not be a healthy food choice but for those of you out there that buy 'happy meals', thank you for funding such an amazing place!  What this journey has taught me thus far is that I have a stronger need than ever before that I need to give back.  I've always supported Children's Hospital fundraisers and such but if any of you want or need something to be involved with, this is where it's at!  RMH costs about $125 per room to run and they charge us a teeny $12 per night...wow.  There are homemade bootie slippers for you at the door to wear while you are here (and take home after) and an entire room for quilts that any kid here can go chose and take one home.  It is such a wonderful, positive place that hopefully Michael will get to bring the boys back up with him in the next few days so that they can get a 'positive' experience to remember about this whole ordeal.

The plan for now is for Mike to head home tomorrow and I will stay as long as Braeden is here.  We are looking at him being transferred back to Calgary as soon as Thursday if you can believe that!  He just needs to be stable and strong enough for the journey home and they will happily send him.  I have no idea how long he'll need to be in Children's for after this leg of the journey but we are still hoping to bring him home for Christmas.  We will have to likely have him on oxygen and I'll be trained with my own baby stethoscope to deal with his SVT's and meds but it is still a possibility I think.

I am certainly relieved in many ways to have the surgery behind us but also know that this part of the journey is far from over.  Thank you again to all of you for your love and kind words, we've had so much positivity come our way through this.  Those of you that have offered help in the form of food, rides, taking the kids to play, etc. I can't begin to thank you enough. 

It certainly does take a village to raise a child but it takes even more to raise one with medical needs.  A very heartfelt thank you to all!

The best quote in my room here at RMH on the toy box:

"We are all each of us angels, with only one wing.  We can only fly by embracing each other." 
-Luciano De Crescenzo 

Tuesday, 29 November 2011

Surgery Day

Hello Everyone a super quick note:

Braeden is scheduled for surgery TODAY.  We had NO idea they were considering it.  I was about to get the bus to Edmonton when I checked in with the hospital to see how he is and they told me surgery is this afternoon.  Michael and I are now on our way (when he gets here from work).  Please send as much positivity to the universe that he is going to have a great surgery and that Mike and I will make it on time! 

I am beyond a wreck at this point!!

Monday, 28 November 2011

Leaving on a Jet Plane

This just goes to show you that just when you think you might know what is going to happen the plan changes!  I walked into the NICU this morning thinking that we had put a plan in place with Dr. Fruitman yesterday only to become informed by Braeden's nurse that they were putting in a request for transport to Edmonton, TODAY! 

The decision was made this morning after viewing his latest echo cardiogram and seeing that the valve (ductus) is barely open.  He is still stable but his pressures are getting further apart and his femoral artery is getting hard to find in his groin (weak pulse).  The good news is that I got to have a good visit with him today and had a good hold/cuddle.  I spent the entire day there waiting the transport team to take him away.  They fly the babies up to Edmonton in a small jet but only have room for the transport team, no Mommies.  I was very surprised to learn of the transport but shocked when I found out that I wasn't invited.  I get that they need the space and such, but try telling my Mommy-anxiety that!  As it was they flew Braeden out at 5pm tonight with two lovely transport nurses (Jan and Jaime) and a kind Respiratory Specialist (who I saw for the last three weeks but didn't really meet).

I got word just after 8pm that they arrived safely and relatively calmly to the Stollery Hospital NICU.  Braeden had one run of SVT as they were taking off but was able to convert with ice quickly.  He thankfully did well on the nasal prongs for his oxygen as they don't transfer them on CPAP (another reason why I didn't think we were going anywhere!).  His night nurse seems very nice and was helpful and reassuring when I called there tonight to check on him.  I am unfortunately feeling just a wee bit frustrated as I am trapped in Calgary because I cannot drive myself!  I understand the need to heal for six weeks after a c-section but this not being able to drive myself around is getting a bit annoying.  It is near impossible to explain unless you've been separated from a newborn the incessant need to be near them and lay hands on them.  I honestly believe that my hormones are directly linked to my contact (or lack of) with this kid.  I know my sanity certainly is! 

As it stands right now, I am heading up alone (which does not help one's anxiety) and we'll see what the plan is tomorrow afternoon.  I am hoping to get a room at the Ronald MacDonald house when they have one open up so that the option to have the boys come up is there.  Thankfully the Cardiac patients actually get priority and I'm on their waitlist.  Please note that it's not for lack of fantabulous family and offers of beds up there but I just feel the need for my own space and to be able to go the the NICU at 3 am if I so desire without asking anyone for a (damn) ride!

The next leg of our journey has begun, before I was ready for it I might add.  So little Braeden off on his private jet plane and his poor anxiety ridden Mommy is off on the bus to be with him (again not for lack of amazing friends offering to drive, Jodi and Jenn you are wonderful!). 

Have laptop, will travel!

Sunday, 27 November 2011

A Good/Long Day

We had some great news today, after meeting with the Cardiologist (our amazing Dr. Fruitman), she informed me that the surgery is NOT going to require open heart but can be done through Squeak's side/ribs.  That means that our recovery time has been cut down to one week (on average) from one month that we were anticipating being in Edmonton.  Being that the malformation is more to the back side of the heart they can access it from his left side through his rib cage.  Much less invasive and a much smaller incision, yay.  The thought of one week in Edmonton is a whole lot less stressful to me (than the prospective of a month) after which he'd then be transferred down to Children's here in Calgary.

After spending time with Dr. Fruitman (and asking her a thousand questions), I am feeling confident about the surgery, it is a fairly routine procedure for the Cardiology team.  She is confident that he is strong enough to endure the procedure and is thinking that it will most likely happen now before Christmas.  It is my understanding that they present their cases to Edmonton each Tues and those cases are scheduled for surgery by urgency for the following week.  She mentioned that they may actually not present Braeden until next week depending on how his echo cardiogram presents tomorrow.  Braeden's DA (ductus) is almost closed now and he seems to be tolerating it all right.  They will be keeping a closer watch over the next few days because his blood pressures are getting further apart (meaning his blood pressure on his arm verses blood pressure taken on his leg), which is a sign of closure of the ductus.  The decision to medicate him to re-open the DA is still up in the air for now.

I also got the pleasure of sitting through a 20 min SVT episode with Dr. Fruitman tonight.  That was not good for one's Mommy Bear or one's anxiety levels.  Dr. Fruitman is wanting the nurses/Dr's to let Braeden ride out the SVT's for 10 mins before intervening with the ice or drugs.  Her reasoning (aside from being the smart Cardio boss), is that when he is home we won't necessarily know if he is in SVT or not and she needs to know what they are looking like for him from here.  She is confident that because he is now (thankfully) remaining stable throughout these episodes that he'll be able to tolerate a run of up to 1/2 hr.  He is certainly exhausted afterwards but otherwise not any worse for wear (I believe it, really, maybe).  The hope is that the SVT's are something he'll grow out of (70-80%) of kids do and for the meantime they will keep him on the meds till around six months of age and then wean him off from there while seeing how the heart responds.  I can honestly say that if she'd not been present through the episode I would have been a whole lot more freaked out.  As it was I think both Amber (our great nurse that was on and has never had to wait out an episode) and I both had our own heart rates of 300+.  My hands were on him the whole time and I could easily feel his heart under my finger just flipping the whole time.  He is otherwise non-remarkable, from an outwards appearance you really cannot tell (if he wasn't hooked up to a screaming machine that is).  Dr. Fruitman was very calm, not at all concerned while observing him. I honestly think he did it on purpose to train us while Dr.  F was present!  As thankful that I was that she was present, it is hard to remain calm when you have six nurses/Dr's around working on/with your child.

The crappy thing (sorry Braeden, no pun intended) that we are dealing with now is the presence of blood in B's stool.  It showed up yesterday afternoon and persisted through two diaper changes I did with him last night.  The xrays were somewhat inconclusive yesterday, they could tell there were changes in the gas patterns.  It is very common for preemies to have necrosis in their intestines (an infection that leads to tissue death in the lining).  This leads us to the ever increasing importance of breast milk for preemies as the EBM (expressed breast milk) coats the lining of the intestines and helps to avoid this issue all together.  As I am still not producing enough EBM for more than one or two feeds in a 12 hr period (he is fed every three hours), he is being supplemented with formula, (NO guilt here, at allllll!).  After talking to the nurse and thinking it through last night, we are both convinced that it is more of a reaction to the concentrated formula rather than actual necrosis.  I had an issue with both T and Ry when they were supplemented with the formulas that they couldn't tolerate the pre-made formulas, only the powdered.  As it is, they have put through a NPO order for Braeden as of the 3 am xray this morning which means no food for the next 5 days.  Can you say grumpy/miserable baby?!  He is getting all the nutrition he needs via is PIC line but it isn't the same as someone filling your belly every three hours with warm milk.  So fingers crossed that it is simply an intolerance, not something more serious.  They are talking about a change in formula when food is reintroduced and possibly taking me off dairy too while pumping, so much for 'comfort' ice cream cruel world!

Friday, 25 November 2011

Whooo Boy!

This is going to be a long one and is not easy to get it all down so bear with me, I'll try to break it all down.

Sorry to those of you checking daily, I've not been able to sit down and actually put thoughts together for the past few days.  To say that Michael and I got broadsided two days ago would be a gross understatement.  We were told on Weds that Braeden would need heart surgery and I've been just trying to process that.

I arrived at the hospital on Weds to find them just in the process of CPAP-ing Braeden.  He was struggling a bit too much on the nose prongs so they've switched him over to the CPAP.  The CPAP is an oxygen mask that fits snugly over the nose and forces a constant stream of oxygen into the nose.  The good news is that they've not had to reintubates, the CPAP seems to have stabilized his oxygen levels enough for now.  He was pretty exhausted while I was there due to the lack of oxygen and just that he's been breathing on his own for two days and was pooped out.  They had also done a chest xray that morning and discovered that he had an increase of fluid on his lungs (which is exhausting too).  They were concerned with infection but decided to do lasiks (a diuretic) instead of antibiotics to start
with.
I grabbed the Neonatologist as he went by just to confirm my info on the CPAP.  He filled me in again on the uses/needs of it and then asked if I'd been talked to about the echo cardiogram from Monday.  When I said no he asked me to follow him into the quiet room.  For those of you that have been through any kind of experiences like this you KNOW that going into the 'quiet room' is NEVER good.  Dr.Ravi proceeded to tell me that they had in fact found a malformation in B's heart.  I know that when he was in utero that his Cardiologist had suspected there was one but she wasn't really all that concerned with it.  It took him growing and losing the fluid to allow them to 'see' closer to the area and sort out what the issue could be.  The malformation is in his Aorta (yep, the biggest damn artery in the body).  The aorta is the artery that takes the oxyengenated blood out of the heart and circulates it to the brain, lungs and then the rest of the body.  Braeden has what is called a coarctationhttp://en.wikipedia.org/wiki/Coarctation_of_the_aorta or
http://www.nlm.nih.gov/medlineplus/ency/article/000191.htm
Basically he has a narrowing of his aorta which compromises blood flow to the body.  Luckily (?) he has the narrowing occurring after the blood flows to the brain and lungs.  When babies are born, the ductus arteriosus (DA) http://en.wikipedia.org/wiki/Ductus_arteriosus, normally slams shut when the umbilical cord is cut upon birth.  Braeden's has actually stayed open, which is actually a good thing in this scenario.  His DA is actually allowing some of that blood that should be flowing through the aorta to flow through the DA and take some of the pressure off.  Now, the immediate concern is that the DA is slowly closing more each day (which is why we are doing daily echo cardiograms and ecg's).  If/when that ductus closes several things can happen.  It can close and the aorta is able to sustain the increased pressure and blood flow until surgery, OR if the aorta can't handle to pressure they can use a medication to re-open the ductus and keep it open till surgery, OR (worst case scenario, and we are NOT going there) Braeden will need emergency surgery because his pressures drop so dramatically and the medication won't sustain the ductus opening.  Bottom line is that surgery is imminent, we just don't know when at this point, it could be months, weeks, or even hours.  Best case scenario is that it is controlled by medication and Braeden gets stronger and bigger therefore being able to tolerate the surgery.  As it stand now, Braeden is getting stronger each day, he is growing, eating up a storm and starting to be more alert.  There are two surgical options that they will look at, the first is that they will take a vein and 'patch' around the narrowing.  The second is that they cut out the narrowed part and re-attach the two aorta ends.  Both options have to be done as an open-heart, bypass surgery in Edmonton....yeah.  This was not the expected course we were on so Mike and I feel a bit blindsided by all of this.  I know Braeden will come through like a trouper but I'm not so sure about Mike and I, we might both be completely grey by next year.

So after absorbing this, the next logical question would be, "Is that what is causing the tachycardia???".  Unfortunately that answer is a NO.  We are still in search of an electrical issue with the heart on top of the malformation.  Yup.

I stumbled back to the bedside a bit numb to be greeted by another Dr.  She introduced herself as a genetic resident and "could we possibly speak a minute in the quiet room?".  Seriously?!  Back into the quiet room to speak with her and see what is next.  She informed me that they were doing a more formal genetics work-up due to the malformation that would go deeper than the amniocentesis did.  The good news (?) is that they aren't looking at Braeden's

I have many questions that are still unanswered at this point.

Ready for some good news?  We are good candidates to be transferred to Children's Hospital which
would give us a quieter, more calm atmosphere as they only have a few NICU beds and they generally only take surgery patients.  They won't transfer him while he is on the CPAP though, he either needs to be back down to nose prongs or back up to be intubated (not going there either).

My heart is full
The other fabulous news...hold for tears of joy...I FINALLY got to hold him yesterday on day 17.  I got to hold him for a solid TWO hours for some skin to skin contact.  PURE BLISS!!!  He and I both settled right in and he zonked right out as I just held him as close and as tight as I dared.  I kept making sure he was breathing (not like he isn't attached to a thousand machines that would tell me otherwise) but I don't know if I breathed.  We are hoping to do skin to skin each day now if he is able to...that should surely help my mental health and hopefully some sort of milk supply!  The hilarious thing is that he filled his drawers for me as I got him settled in the beginning but I did dare do anything about it for fear they would want to take him back and change him!!!  Michael unfortunately didn't get a snuggle as they recommend only one a day till Braeden is stronger and used to it.  I suppose that I will share though, he gets the next turn when he doesn't have to be at work.

I guess you have to just take the good with the bad, is it wrong to point out that I am done with the 'bad' for now??


Such a tiny little man!

Daddy transfering B back to bed (not a happy B)

Grandma's healing hands
 

Wednesday, 23 November 2011

A Happier Boy

So the fantastic news is that Braeden is still tolerating being off his ventilator.  His breathing isn't quite as laboured as it was in the first 12 hours that he came off and the nose prongs seems to be holding him for now. The second fabulous news is that they've moved his bed out of the isolation section of his pod which means that he is certainly getting stronger!  He still needs to have one on one care from a nurse and needs pretty constant quiet but is working hard to become a stronger little dude.

Michael and I had a pretty special visit with him last night.  He was zonked when we got there but decided to wake up and entertain us a bit.  He still doesn't really have much of a cry at all, it is still really a mewl because of his swollen vocal cords, but he is making noise now which is great.  There is something decidedly wrong (maybe it is just me) about having to watch him over the last two weeks when he is upset and having no sound come out.  Mike got to actually hold him (well suspend him might be a better term as there we no snuggling involved) as his nurse changed over his bedding.  It is hard to hold a child that is wired for sound in a comfortable way!  Nonetheless, he did get to be held momentarily.  He was able to find the energy to crack open his eyes too and even gave us a sweet, simple smile.  Magic!

He is getting stronger in body each day and that strength will hopefully transfer over to his poor heart.  The SVT's seemed to have settled down (knock on wood) for now, and the increase in the meds seems to be working.  We will see what the big picture is from Cardiology by the end of the week.  His night nurse last night (who has been around for ever, her words not mine) seems to feel that he'll be transfered over to Children's at some point.  I'm not sure if she is just hypothosizing on this or has some inside scoop?  It was my understanding that kids that got sent to Children's were for surgery but I suppose it is really where the Cardiologists are anyhow so it would make sense.  We will go where we get sent, if they take my kid I will certainly follow!

Monday, 21 November 2011

Braeden 1, Ventilator 0

Just a quick update to today:

We were able to successfully extubate Braeden today at 3pm.  They had planned to go 'cold turkey' but he was struggling a bit so they did introduce the nose prongs.  So he is getting a slow flow of oxygen through the nose and is otherwise breathing on his own!  He did a quick flip into an SVT when the extubation was over, making my heart jump, but was able to rapidly pull himself out.  We are certainly on a 'wait and see' basis right now.

Michael and I were at the hospital again this evening around 9pm and he was still stable off the vent but the nurse did comment that he is struggling a bit more.  He is not breathing well when he is being handled and he unfortunately has to be handled quite often during the day to run all the tests and assessments that they need to do.  She wasn't sure what the decision would be at this point, but she did warn us that the possibility to re-intubate would certainly be on the table.  It is apparently not that uncommon to have to go through the process of extubating and re-intubating a few times.  He looks like a different baby now without the tube though. He was peaceful tonight when Mike fed him and was smiling in his sleep with Michael tickling his palm slightly. 

The Cardiologists have decided to up his dose of Sotolol (heart med) for now and give him to the end of the week on this drug before deciding to introduce an additional drug.  The Neonatologist described this drug as 'firing with a bigger gun'.  Okay, as long as you hit your mark!  There are side effects to this drug though, it can actually cause or exacerbate and existing arrhythmia.  Weighing the good with the bad here.  They are still searching, searching, searching, and hopefully getting closer to a cause(s).  They are watching the structural issues with the echo cardiograms and the daily ECG's and trying to decipher if there is an 'eletrical' issue as well.

All in all it was a veryyyyy stressful day in most regards waiting for them to do the extubation and me NOT freaking out during it but it was still a sweet end to it.  I am at peace with it if they have to re-intubate, he is just showing us each day what a little fighter he is!  It doesn't hurt that he's got most of the nursing staff wrapped around his little finger too...must be genetics!

The First Kiss is Always the Sweetest

Yesterday was a roller coaster ride for sure.  We (and by 'we' I mean 'I') had a really rough visit with
Braeden in the afternoon.  We took the boys up to have a visit and it started out really well.  I took Rylan in first and he cooed and awed at him for five minutes and got to touch his head and blow him kisses.  I took a few pictures (with an actual camera not the blackberry) and used the flash.  I felt badly for the flash but all the nurses tell me it is fine.  Braeden actually cracked open one eye and Ry and I were both very excited because the times he's opened his eyes thus far has been when we've not been around.

I took Torin in next and we did the similar dance as we had with Ry.  Braeden suddenly went into an SVT and his nurse was on a break.  I got Torin to step back and I called over the nurse on the next bed (who was covering) for our nurse.  I was doing fine up till this point, I had somewhat expected that I would be present for at least one of these episodes since they are getting more common again.  She got the ice onto his head and then yelled "I need help over here!!" at the top of her lungs!!  I asked what I could do (while hanging onto Torin who had no clue what was happening) and she said nothing and bellowed for help again.  Keep in mind this is a ward where no one ever really talks above a whisper.  My nerves were frazzled at this point, not knowing what to do.  When the charge nurse came over she was completely calm and asked what the issue was.  The yeller then said, "nothing, I just needed to tell someone he had converted".  WHA???  Braeden, like the trouper he is, converted back out in two minutes with the ice application but I however could not.  I took Torin out and explained to Michael what had happened.  He went in and sat with Braeden because I was frazzled to say the least.  He had a nice calm visit with him, of course. 

Mike took the boys to do an errand and I stayed to pump and went back in for a visit.  His nurse that was with him was back from her break and she updated me that they were in fact looking to remove him from his ventilator but were going to post pone it for a day due to the fact that it was Sunday and there was only one rapid response team on.  Basically if they extubated him and there was an issue, AND they were busy at a different bed his nurse informed me that, "she'd be screwed".  (Ugh...I've decided that I won't bother naming the nurses I don't like).  Anyhoo...she had to do his assessments at this point and I stood back to watch.  The assessments include things like measurement, sometimes weight, sometimes drawing blood or switching out lines.  She had a fairly easy and straightforward one to do so I decided to watch.  She had Braeden so agitated that he was basically thrashing and flipping out.  There is only so much that a Mom can take of watching her baby scream his fool head off (whilst not making a sound) before she is ready to take out the nurse (yes Jean, I know you would have!).  She finally realized (or it could have been the smoke coming out of my ears) that she needed to give him a Fentanyl bolus to settle him.  It was at this point that I walked out, having reached my stress point.  Mike and the boys were waiting in the car for me so I headed out feeling decidedly sick to my stomach.

I told Mom when I got home that I would have to go back after dinner (and the nurse change over) or I wouldn't sleep that night.  As it was I could only pump 1 ml of milk after dealing with the 'yeller' so I knew that I was at my limit.  Mom and I went back after dinner and had a WONDERFUL experience!  His nurse that was on for the night, Laine, was fantastic.  When we first got there Braeden was somewhat active and while Mom was touching him I realized he had his eyes open.  He actually looked right at us, from one to the other.  It was an incredible moment just to see him with open eyes!  Laine then got us to help her do her assessment, change his linens and weight him.  He had one minor spaz through it but was otherwise calm throughout.  What a difference a nurse will make.  Laine was calm, took her time and paid careful attention to what Braeden needed.  She put him on his tummy for the first time and got me to give him a little back rub...heaven for this Momma.  Braeden was in a zen as was I!  Laine also knew when he'd reached his limit and told me when I needed to stop.  I was so relaxed at this point too!  She then let me KISS HIS SWEET HEAD goodnight!  SIGH!!!  BLISS!!!  Mom got to sneak in a kiss too and we went home.  I was so relaxed on the car ride home, knowing he was in good hands.  He also went on to have a good, SVT-free night, so what does that tell you??

I am now here at the NICU waiting for the respiratory team to come and extubated him (take him off ventilation).  I am excited, nervous and terrified all in one.  Excited because I'll get to hear him cry for the first time in two weeks, nervous that it will or won't go as planned and terrified that he'll have an SVT later and not be able to breathe during or after it and they'll have an emergency on their hands.  The stress is that they really don't know what will happen during his next SVT episode, if he'll need the extra support on the air or not.  Did I mention terrified??  I know, I can hear Christa saying "Just leave well enough alone!  Why take him off?" but his numbers are so low on the ventilation that he is basically breathing without it for the most part and to leave him on can cause him more issues in the long run. 

So here I am, sitting and waiting.  Trying to be positive and trying to be patient.

Saturday, 19 November 2011

What a Boob!

I'll do the Braeden updates first on this post because then I feel the strong need to vent and not all of you will want to listen I'm sure (although you might get a good laugh).

Braeden is still having several SVT episodes several times a day right now but for the most part they seem to be able to pull him out with the 'ice shocker'.  We are still waiting for the latest Cardiologist's report/recommendations to see if we are going to continue on the same path with the same drug or switch it up.  It seems that the effectivenss of the Propanol's increased dose might not have kicked in yet but I am nail biting in the meantime during each SVT episode.  Patience, patience, patience.  He was just so sweet yesterday, just being held (hand on head and other hand on foot).  The nurses all seem to comment on how settled he is when I am there, so that is reassuring.

The fabulous (and much less stress-causing news) is that he is fairing better and better on the new respirator and there is even talk of being able to possibly pull him off it soon.  How fabulous would that be?!  He is getting more active which is so fantastic but not so good for the constant pulling on the tubes/wires around him. He is still having a great output of urine which means his weight is slowly going down and he has been spotted by two nurses now with his eyes open!  I've yet to witness this but am hopeful that I will get a chance to see him awake today.  I keep timing it so that he is somewhat drugged when I see him due to the changing of his systems and such but sooner or later I'll get to see him awake, I'm sure of it.

So here comes the massive bitch mode, men you may not really care to go any further....I'm still struggling (there must be a stronger word than that) to produce milk.  I was trucking along, getting a bit more each day and persevering and got so that I was able to produce up to 10 mls a feed (pumping that is) and now have gone back to N.O.T.H.I.N.G!  How is that even possible???  Have boobs, should be able to travel right?!  One would think....  I did have trouble with T and Ry as well but hey, there were 8 and 9 lb babies, not only 4 lbs at start.  How is it that one won't beat themselves up over not being able to feed their child?  The only thing that has changed is that I'm taking MORE motilium (domperidone) than I was and am now producing LESS.  It is somewhat frustrating as hell to drag one's butt out of bed in the middle of the night every two or three hours to pump and to not even produce enough to bottle (we are talking drops only last night) out of both breasts combined.  Yes, I'm trying to get sleep.  Yes, I am trying to remember to eat.  Yes, I am chugging water at every turn.  Yes, I am trying to keep my stress (HA HA HA) to a minimum.  No I can't take fenugreek as he is a preemie and yes, I might even be willing to try Sumyu's fish/mango soup combo for production at this point (still can't say it without grimacing though Sumyu!).  I am however more open to the Tiger Milk.  Obviously the saying 'it is only what is on the inside that counts applies here as well'.  So how, how, how does one make happier boobs??  I chatted with the 'queen of all things' (my name for her because she is the super queen of breast feeding and very kind and patient) Noreen, Head Lactation Consultant, at the NICU on Thurs when I noticed that things were still not really making stuff happen.  She gave me a few pointers like, keep pumping both at the same time (do you KNOW how much coordination that takes??? How's that for a visual you didn't need??), manually expressing (check), and when she took out her calculator to add up how much I was producing a day she shut it without inputting any numbers and said to increase my doses of motilium.  So increased the dose and now I am pumping even less!!!  WTH!  I wouldn't even bat an eye if he was born full term and my milk supply was less than stellar (as it was for T and Ry), I supplemented with formula with both T and Ry and they survived just fine (of course I struggled through feedings and pumpings and beat myself up for it...).  The biggest problem now is that I KNOW how important breast milk is to preemies and how formula should be avoided if possible.  Formula can lead to issues in the intestines and we don't need anymore issues!!!  I am just hoping so much that because he's functioned (pooping and all) with the little milk he has received from me that the formula will be okay.

Bottom line is that I feel just a tad bit of failure at this.  I know, don't be so hard on yourself, you are still healing yourself, once you feel better....yadda yadda.  I can't help but feel discouraged, one should be able to utilize one's prominent body parts for the appropriate use no?  I see women in the pump room with tiny boobs producing ounces and ounces of milk, not just mls.  I know it's not about size (what am I a man now?) it's how well they decide to behave.  So a-pumping I'll keep going and a-stressing I'll keep going, hopefully the pumping will win in the end.  I'll keep up my circus act (double pumping), drinking my tiger's milk, and try to stop bursting into tears and crying when the nurses tell me they are 'using formula for this feed when I talk to them'.  Double up girls, here we go!  I am Earth Mother hear me hum?  Ooohhmmm...(gak, does this mean no more Ativan or Huggies in my future?)

Friday, 18 November 2011

To be a Member and make comments

I've been asked by a few of you how you can comment on the blog postings.  As far as I know, you simply click on the link to become a member and log in using your gmail email account.  If you don't have a google email account, it only takes a minute to sign up at Google, click on gmail and sign up for a new account. 

I would love to hear from any of you here!  Your comments are always appreciated. 

I believe that once you are a member you'll can also sign up to become informed when a new post is posted.  So there ya go! :)

All Pooped Out

I always think that I'll do a quick post but it always seems to get away from me!  Genetics I think! :)

We had an okay day, to be honest, I was a bit of a wreck till I got to get a hand on Braeden this morning.  When Mom and I arrived this morning his curtain was drawn around his bed and it isn't a good sign generally.  I cautiously peeked in and saw a nurse and Dr. working on him.  They weren't doing a sterile procedure so I could go in.  What they were doing was trying to salvage the arterial line (direct line from which they can draw blood to test without poking him again), into his hand since not five minutes earlier he'd blown out the intravenous line into his foot!  Lil' Stinker!  He was making Nurse Dana work hard in her first hour with him, no doubt.

He'd had a calm night after his three runs, but I think that had to do with the sheer exhaustion that must have overcome his poor, worn out body.  He looked less swollen this morning again, which is great, but he also looked worn out to me.  The HUGE news of the day (yes, it requires cap letters!) is that he pooped!  Yippee!  See Dana was busy!  The pooping is a great sign because they had to stop feeding him the night before due to asperitions (sp? not digesting) and if he doesn't have food he can't have his heart meds, if he can't have his heart meds...well you get it.  They also doubled his dose of Propranol (heart med equivalent to what I was taken for him when I was pregnant) but it takes a bit to build in his system (five days to build in mine initially).  He stayed pretty out of it during the whole visit due to the extra boluses (doses) of Fentanol while they were working on the lines.

I called again to check on him at 1 pm and he was doing well, no runs to note.  Michael and I went up at 5 pm tonight to find that he'd been making them work hard again, this time for Nurse Jackie who'd just come on her shift.  He had runs pretty much back to back for 1/2 hour straight, Jackie was counting it as one prolonged run.  They had to shoot him 5 times with Aldenazine (rapid to the heart drug) in that 1/2 hour...ugh.  Thankfully, we timed our arrival with the shift change of Dr's and they were doing rounds.  We got a chance to chat with Dr. Amin who is the Neonatologist that was the head Dr there for Braeden at delivery and who has been caring for him since.  He is a fantastic Dr that is certainly working in the right field as he just has a quiet and calm way about him (even under pressure) that all spastic parents need.  It turns out that Dr. Amin is not as nearly concerned with the latest runs that we are (he is the expert after all) as Braeden is more active and still losing fluid.  He didn't have the actual report from the Cardiologist for the echo they did this afternoon but from what he saw there was nothing new to report.  His blood pressure is remaining stable to the point that they will try to take him off his bp med again tomorrow and hopefully it will stick this time.  I was asking about the 5 shots of Aldenazine and the toll of his body but Dr. Amin again reassured me that the effects of the drug is only in his body for 10 seconds (which is why it needs to be forced immediately into the heart).  So, I'm still freaking out about the new series of runs but am certainly not going to lay awake again all night tonight thanks to Dr. Amin.

The other good news is that he has continued to drop weight (who would have thought you'd want your preemie to shrink??).  He's dropped a total amount just shy of two pounds now, so only another pound and a bit to go of this damn water and swelling.  How I wish it was the same for me!  If it was still close to Halloween I would post pics of my feet, stretch marks and all just to freak people out!  The nurses were excited today that they could put the arterial line into his head now that they can see the veins finally.  Not for the queasy to see that is for sure, but a whole lot less likely he'll pull those out.

Braeden is trying hard to crack open those eyes as well.  He has luck with only one eye at once due to which side of his head is raised and where the water pools.  It is getting closer though and that is pretty cool. 

My 'big' boys are feeling a bit spoiled and extra loved this week too due to three packages arriving in the mail for them.  A huge thank you to my Dad for the books sent out to 'two special boys' from their 'favourite Grandpa' and another huge thank you to Great Auntie Maureen for the 'awesome, awesome' (Rylan's quote) car race set.  Unfortunately I didn't get to see Grandma Hurray assemble it with the boys, it would have been fun to watch Ry boss her for a change! :)

So not a great day but not a horrible one either and yes, I did finally get some sleep after seeing Braeden this morning and am heading there (to bed that is) again after calling the nurses just one more time...

Thursday, 17 November 2011

Burning the midnight oil

Everyone keeps telling me I need sleep, my body keeps telling me I need sleep (although it is happy to wake my constantly as well), and I know I need sleep but here I am once again burning the midnight oil (does it still count if it is 1 am??).  Can't say I'm in the best frame of mind writing at this time of day, so bear with me here.  I just need to get some of this out so I can possibly sleep, at times one just needs to write out the voices in one's head.

Braeden had a good day, a pretty calm great day actually so we decided to take the boys up again tonight.  They were both very excited to see him again I was happy that they would see him looking 'better'.  Torin and I went in first and Braeden was quite active, having a little dance actually.  T got to touch his head for the first time, so that was super special.  Braeden's swelling was even more reduced today and I was even able to cup his head in my palm as he tried to peek out of one eye at me.  T went out and Michael brought Ry in with him.  He (being Rylie) was fascinated with everything once again and was impressing Nurse Jackie (who is beyond fantastic and we've asked her to be Braeden's primary nurse), with his questions.  Rylan is certainly smitten with his little brother and even more so by his 'big' brother status!

We were just chatting and Braeden seemed calm when I noticed his blood pressure had jumped up a bit and looked higher to see his heart rate at 200.  Trying not to panic too much, I pointed it out to Jackie who immediately checked him over.  She wasn't panicking so I was just hanging back letting her do her thing.  She held him still for a bit with her hand on his head and over his hands.  He seemed content with this but the heart rate didn't really drop.  She gave him about 1/2 hr before checking him over again, since his rate wasn't over 220 he technically wasn't in a tachy mode.  Braeden had been a bit raspy earlier and she'd pulled out some nice (sorry for the squeamish) mucus out of his little nose.  It seemed that she had to suction him again and found his little nose needed more as well as his mouth.  His heart rate stayed right at the 200 level, dropping to 193 at times but not lower.  She rolled him on his side a bit and he seemed content with this.  We (sadly) had to head home and get the boys to bed as we'd stayed longer than we'd already anticipated and we had two tired little boys at this point.  I told Jackie I would call back around 10 before I went to sleep knowing she was off shift at 11pm.

I called around 10:20 and the nurse that answered told me Jackie was preoccupied (which is NEVER what a Mom wants to hear) but then told me she was coming to the phone.  Jackie informed me that after staying at the 200 rate for 2 hours they decided to try to shock him out of it with the ice.  Unfortunately that didn't work so they had to use the drug into the heart on him (I cannot remember the name).  He did come out of it at this point but then proceeded to go into a full tachy mode only 5 mins later shooting his heart rate up to 299.  He was given a second shot which again brought him down thankfully.  Jackie then told me that they were in the middle of administering a third shot as he'd started up back into 299 only 5 mins before I'd called.  All of this in the hour and a half since we'd left, my poor sweet boy.  They had discussed bringing the cardiologist in with the second occurrence and Jackie was pretty sure that he/she'd be called in now.  Braeden already has another echo cardiogram scheduled for tomorrow so that is a relief.  The good news is that his blood pressure and oxygen both remained within stable limits while the attacks were happening.  That gives a bit of relief, albeit small.

The hardest part that I am having is that I let myself have that slight touch of hope and then it gets taken again.  I know, I know, grasp the positives, and what do you have if you don't have hope?  I'm trying but this baby is struggling and there is nothing I can do.  Before all of this tonight Jackie was telling me that we were certainly getting closer to holding him, my ultimate dream at this point.  We had almost two good days and then two steps back.  I am trying to be patient, I KNOW they are doing everything and running every test they can, but it is still unknown why this is happening, even how it is happening.  It could still be days or even weeks till we have our answers and in the meantime we are just able to stand by.

I'm frustrated, I'm tired (big shocker there, I know) but I'm also allowing myself to admit I'm also feeling scared.  I've not let myself really explore this, and I won't go deeper than that but I am truly hating the unknown.  It is what, like less than 40 days till Christmas?  When it is said that seems a mere second in time but when you are living each day at a time it is an eon away.  Where is that damn crystal ball??



SO, here is what I am going to do for all of you wonderfully, over-protective Moms (and husband) out there.  I'm going to put my overtired butt into bed, I'm not going to call the NICU for another two hours and I'm not going to continue to panic (back away from the Ativan!).  Tomorrow (which I suppose is actually today) is coming rapidly and I'm not going to be any good to my other two children with getting them off to school and myself off to the NICU without any sleep.  If all else fails, my Mother of the Year (actually Lifetime would be more accurate), is standing by to drive her youngest to the NICU if need be. 

Have they moved past cloning sheep yet??

Tuesday, 15 November 2011

Rollercoaster

At some point in life you inevitably find out that nothing in life is a guarantee but, that in no way prepares you for this roller coaster that we all ride of life. 

We went from feeling somewhat hopeless/helpless (yesterday) with an omg, my baby's heart isn't working how it should, to an 'ahhhhh' angels singing (today) to a good response to meds and 'wow' onto a new ventilator!  We had a 'no good, very bad' start to the day yesterday with Braeden going into two additional tachy's (7 in total in just over 24 hrs), that were both needing extreme interventions.  In the initial episodes they were able to snap him out of it by using the shock of an ice pack to his face.  This was enough to startle him out of the tachy mode and back into a normal-ish sinus rhythm.  They actually will put the ice pack over the baby's mouth and nose to make them grab a huge breath if they are not intubated...I know right??  Luckily with the earlier episodes, the ice on his head was enough cause ya can't really block off a ventilator.  The two episodes yesterday morning however got progressively worse and they had to intervene with medication that goes into an IV followed by a rapid push of saline to get it to the heart ASAP.  He was in the tachy modes for 4-5 mins each time which may not seem like a long time but when his blood pressure bottoms out at the same time it would be more of an eternity (thank goodness I was not present during either episode or I might be in a padded room tonight).  The Dr explained to us last night that there are kids that stay stable during an episode and they will let them go for 15 mins before trying to intervene but then they have the 'unstable' cases (ie my sweet boy) in which his body goes into a critical state when the oxygen intake and the blood pressure both drop dramatically.  THANKFULLY they started him on the baby version of the heart meds that I was taking for him while pregnant and they seem to be working. 

We've now gone over 24 hrs without another episode (fingers crossed so tight they are falling asleep).  Now add crazy, post-baby hormones on top of this and this would make the great mixture of one stressed-out-Momma.  The wonderful thing is that I got to spend some time with just Braeden and I as his nurse went on break (there is always another 5 steps away), and we got to just chill.  My hand on his head with my other on his feet and we just got to 'be'.  The amazing part through all of this is that he really does seem to know when Michael or I are 'holding' him and they can always turn down his need for oxygen when we are with him.  Yup, he's a genius.  I feel so calm when I'm with him, he soothes me in a way that can't be explained (other then when they are poking and prodding him and I have to leave the room).  I am struggling constantly with the guilt that I'm not spending enough time with him and it doesn't matter how many times I'm told 'take care of yourself first', because what Mom in her right mind does that right?? ;)

T and Ry are still struggling as well, there are emotions that come out of seemingly nowhere, (like "I am crying because I couldn't hang up my coat properly").  I know that they are also requiring extra reassurance that I will come home each time I leave.  T panics when I say I'm going to the hospital and insists he needs to come each time.  This too will get better, I know but it is still hard to know that they are feeling insecure about Mommy's whereabouts and stability in the home.

SO!  We had a pretty good day today aside from the fact that there were no more tachy episodes.  They knew Braeden had a leak in the ventilator in his throat because when he cried we could hear him 'squeaking'.  They had him on an oscillating ventilator which, to my simple understanding, pushed air in and vibrated his body non-stop to help the stretching of the lung tissue and spread out the oxygen through them.  He could still 'breathe' on his own but essentially the machine did it for him, and forced him to take the breaths.  They figured since they had to change out his tube anyhow (as the leak was in by his vocal cords), that they would try him out on a typical ventilator first then put him back on the oscillator if needed.  The amazing thing is that he took to the new one quite brilliantly!  The new ventilator makes sure he takes breaths 40xs a minute but also if he wants to breathe on his own (which he seems to be doing a bit more of) it doesn't force the air in for him, it allows him to take that breath himself. (I mentioned genius, no?)  This ventilator also allows more freedom in his positioning as it isn't nearly as stiff and unmoving as the last was.  He is still quite sedated as he needs to be with all the lines going into him, but he was 'stuck' in certain positions with the old one that he won't need to be now.

The other good news is that they've managed to wean him off another of his heart drugs and he seems to be handling it quite well.  It is nice to see another 'floor' of the 'tower' going dark.  I had to laugh tonight when Karen came into see him (the huge benefit to wearing scrubs and working across the hall, and yes, she's allowed to brag as she is one of the very few people that will get to meet him before he is released).  She commented that she didn't think it was a literal 'tower' of drugs when in fact it is a stack of different meds (each in a syringe mounted on a small computer), one on top of the other, that are programed to release a dose at the proper intervals.  Pretty freakin space aged actually.  In fact his whole set up is pretty damn impressive, I can't imagine having to face this even 5 yrs ago.

The visit that Michael and I had tonight was quite wonderful, he was snuggled into his new non-vibrating bed and seemed quite peaceful.  I would think that I'd be enjoying the non-shaking bed too!  He almost seems like he might be able to open his eyes soon as long as the swelling keeps going down.  I was showing Jenn M. pics today of him and was quite surprised myself at the physical change in him in the past week.  I can see that the swelling is receeding and that is so encouraging. With the addition of putting him on the new ventilator we are one, albeit small, step closer to holding out sweet, sweet boy.  And THAT makes one stressed-out-Momma wanna sing!!

Monday, 14 November 2011

For the Superior Dads



One of the things I've noticed with spending time at the NICU is that you see a lot of the same people there day to day (no big surprise there).  What I love to see and watch are the Dads.  I've spent some time in the family lounge and when the Moms meet they great each other like the common warrior they are and ask, 'how many weeks were you?'.  We don't need much more info than that, we know that we are all in the similar boat and there is no need to see if 'my kid is sicker than your kid'.  We all feel that we are all in it together and as result there is an unspoken acknowledgement of respect and commonality.


It's the men however that fascinate me!  I love to sit in the parent lounge with a few of the men (as their wives are pumping).  I love to hear their stories (of how they got to the NICU) and they talk about life as an achievement, they are not sad to be there, they are so proud.  They have managed to keep their wives and their babies alive, it is time to celebrate.  They tell their stories proudly and unabashedly about the survival of the two most central people in their lives.  What better start to Fatherhood could you get?  Talk about fully engaged and involved!


A good deal of this journey feels like it is about Braeden and I, and it certainly is but I just want to take a moment to realize and thank Michael for being such and awesome Dad to all three boys.  I think of the generation of boys that we are raising and I think "wow" think of what great fathers OUR boys will be!


The big news is that Braeden did get a chance to meet his brothers yesterday, so that was certainly a special moment. In true Ry style, I said, "oh honey, isn't he just beautiful?" and Ry responded with, "ya Mom, and he's just super cute too!". Sigh, I'll keep that 5 yr old awhile longer!  They took it well, (all three that is), and we did our best to prep them before taking them in.  They did see a picture before hand of him and we explained all of the tubes and machines.  It is quite something else to see them all front and centre though.  I am really proud at how well both boys did, it would be a lot for an adult to take in let alone a 5 or 6 yr old.  Mike and I did hear from one of the charge nurses the other day that Braeden does in fact have the most complex tubing system on the entire NICU right now.  It is truly space age, and would explain why we constantly have nurses come by and 'check him out'.

 

Braeden is doing better in many regards, his fluid levels have finally started to drop (he might be able to open his eyes one day!), and he is tolerating coming off of his blood pressure meds.  I struggle so much when I visit him because they always are having to run some tests, move him, or assess him and I try to watch.  I try, but I can't stand seeing his little face scrunched up, just knowing he is screaming and no one is listening.  I finally left the room today and went to sit down because me having an anxiety attack at his bedside wouldn't prove helpful to anyone.  The upside is that they are having to drug him less and less as a preventative measure against these 'tests'.  When the nurse came to get me, and I'm sure to make sure I hadn't passed out, he had calmed down nicely (without extra sedation) and was holding Mike's finger.  It is hard to have any quality time in a short visit when he and I are both keyed up.


Part of the downside to Braeden doing better is the weaning of medications (which is supposed to be good right?).  The more they take him off one of his 'tower' of drugs, the more they expect that his body will take over for him.  Which for the most part is working as planned but what I didn't take into account is the drugs that I had been taking for him (beta blockers and such for the heart) is that they are now coming out of his system as well.  It came as such a shock to me (why I don't know) when his nurse informed me when I called this morning that he'd had two episodes of SVT (tachycardia) overnight.  To have your baby in-utero go from a heart rate of 110 up to 280 is one thing, he is still inside and somewhat protected but having his heart rate shoot up to 300 for no plausible reason is shocking.  I wasn't able to process that he is no longer supported by the heart meds that I was on, it does make sense however that now would be the time that we would start seeing these runs again.  The question is over the next few days, as the last of the meds come out of his system, what will happen.  We are literally getting to the heart of the matter now, and that is certainly stressful.  What this does also mean is that by the end of this week we might just have some answers to the 'why' and 'how' of all of this.




Friday, 11 November 2011

A Day of Remembrance and New Names

I guess if I had to choose a day to leave the hospital then today would be not a bad choice, a day of Remembrance and a day to be thankful for what we have.  (Also a day of birthday happiness to one of my life's greatest supporters, Lorna)

I am so thankful and relieved to be finally home and can see the relief in the boys eyes tonight as I tucked them into bed.  They were so shocked and happy to see me when Mike drove up today that it brought tears to my eyes.  They have been through so much as well in these past 16 days that I forget how much their lives will be shaped by this experience as well.  I had been promising them a 'snuggle-fest' upon my return home (not knowing when it was going to be) and Torin took me at my word.  Among all the hugs and kisses he immediately asked if he could move all of his 'loveys' (stuffed animals) into my bed and then promptly informed Michael that he would need to sleep on the couch tonight.  How sweet can one little 6 yr old be??  Needless to say we did have a good snuggle but it is hard when Mommy is still so very sore and it's not so comfy to be laying with two small but active boys.

I am also so far past utter exhaustion at this point that I can't sleep.  Yes, can't.  I can lay down but as soon as I drift off I can't breathe because my body goes into panic.  I know it is anxiety and oddly enough I remember the exact same reaction the day I came home from the hospital with Rylan 5 yrs ago.  I am going to crash, I know it, I just need my brain to stop in order to do that.  It is hard when you have an actual physical reaction, not just that my head won't turn off.

I'm not by nature an overly anxious person but I know that I am in for a test over the next few days.  Leaving the hospital was a HUGE undertaking for me as everything in my Mom-being was screaming that it was wrong to leave the baby behind or not be staying with him.  I know that other parents obviously have done this and survived but it is just so horrible not being a short walk (any hour of the day) to his bedside.  I am also now under the strain of needing to be driven to the hospital, I can't just get up at 3am and go to him if I need to.  I'm sure my over-worked and exhausted Mom would drive me at 3am if I so felt the need but it won't do any of us any good in the end.

I don't think that it helped at all that Baby had a rough day today.  He had a hard time settling through most of the day and each time I went to him they were giving him more meds to settle him.  The new addition today was the UV light for jaundice (which we were expecting at some point with being a preemie).  It is hard to say if it was the extra heat (as everything is SO hyper sensitive on his body) or the fact that they had put on eye covers to block the light.  Who knows, he just is very clear in the fact that he does NOT like to be touched and moved and unfortunately it has to be part of his process each day, the constant monitoring and checking vitals.  The great news is that they have come down on one of the blood pressure meds and are working on the next one.  They are hoping that his heart will pick up the job and carry on without the meds.  I got to speak with his Neonatologist yesterday and he was commenting that he is happy with the progress, so that is certainly reassuring.  As much as Baby doesn't want to be touched he is very attached to holding my pinkie finger and will give me quite the squeezes.  Michael actually got a chance to 'hold his hand' yesterday as well and I think that was a special moment for them both.

So, now onto the next stage of being home and going back and forth to visit.  This is going to take some adjusting, that is for sure.  I'm going to have to plan around my need to be 'chaufered' and the needs of everyone else in the house.  The question also arises on when to introduce T and Ry to their brother.  Baby is stable but the thought of bringing in any germs to the NICU freaks me out.  I am also under the battle of how much do we expose the boys to?  Baby doesn't look like a 'regular' baby, he looks ill to say the least (although so very beautiful).  Is it going to do the boys good to meet him and grasp an understanding of the fact that his brother is quite ill or do we wait until some of the swelling goes down when in fact it could take weeks?  Ry was a bit distressed when he realized that we'd left his brother behind at the hospital but he does get it (as best as a 5 yr old can) that he needs the constant Dr care.  Life has already changed so much in the past few weeks and then we added breast pumping 101 in my bedroom tonight...that is good for a few laughs knowing that Ry will be chatting about it to anyone who will listen I'm sure.  Good thing that I'm not shy!

So the biggest positive of the day (actually last night but who's counting?) is that Baby was named.  We'd like to introduce you all to Braeden.  Wasn't that nice of me to make you wait till the end?  I will try to upload a pic this weekend but the quality isn't the greatest and it's not like we can get right in the poor kids face! Michael chose the name and I feel like it is certainly a good fit.  It felt 'right' when I tried it out on him.  So Braeden it is, and he seemed to be okay with it as well.