Sisters

Livy got to meet Payton today.  While we can't say she's 'taken' yet with her sister, it was nice to have a chance to bring Livy to meet her before Payton goes in to her surgery tomorrow.

Here's a quick pic of Auntie and Livy with Payton. 

My time at home so far has been wonderful.  I can tell that Livy is excited to have me here as she is very attentive.  She takes my hand and walks me all around and wanted me to lie down with her (no need to fight to get her into bed...just to sleep :).

There's a bit of caution with the c-section incision and I've probably exerted myself to my maximum today but it was well worth it to just come home for a night and relax with Livy.  Man I miss her.

The nurse tonight said she's starting to see signs of Payton struggling in the way of needing additional bolus' to get her through as she's starting to desat too often (a bolus being an extra shot of morphine to keep her sedated).  That often equates to them having to jack up her oxygen a bit to get her through the rough patch so she's showing signs that waiting too long in the same condition under sedation isn't agreeing with her.  Whether its just her fighting through the seditives, being more flemmed up due to the vent (where fluid/mucus builds in the chest effecting breathing) or simply showing us that she can't remain in limbo forever who knows.  We just know that now is the time and we hope that the rest she's had over the last few days (since the shock of being born) is the perfect time to allow her to get through the next few days.

Tomorrow can't come soon enough (or slow enough) and while I very much look forward to Payton starting to 'get better' I worry too.  She's done so well that I'm waiting for the other shoe to drop.  We know that things go right in this world (we have Livy) but we also know that things can go very, very wrong (we have our little angel's Dayne and Daniel).   So we keep our guard up and remain cautiously optimistic that Payton has done so well and that she's well positioned to fight through the surgery and recovery beyond.

Surgery is Scheduled

Payton's surgery is scheduled for 10 am tomorrow morning (Aug. 1st).  We met with the surgeon who is going to be doing Payton's surgery (Dr. Blair) and he went though everything in detail and explained a number of things.

After hearing about the surgery/risks I would do anything to NOT want her to have the surgery we know very well that Payton needs this surgery to get better and while she's doing "great" right now, she's not getting better...she's simply in a holding pattern till we fix the problem.  And, Payton's "great" isn't great compared to a new born, its great compared to how very complicated her situation is. 

Payton is the only baby in the NICU who has her own room seperate from all the other babies and she's one of the few who has a nurse with her 24 hrs a day (initially 2 nurses but because she is doing 'great' they are confident that one is sufficient).

Another example of how sick Payton still is, is when we met with the surgeon today, he explained that Payton's lung size was that of a 25 week old baby.  And while those lungs are functioning 'great' they're still incredibly small and working hard to oxygenate a full term size baby and not the small size of a 25 week'r.

The surgeon explained that overall the risk of surgery brings with it an approximate 10-15% mortality rate.   He also explained that this risk is overall and that with Payton, she's doing so well that they believe she's on the lower end of that spectrum.  My interpretation is that means she lies closer to having a 10% chance of not making it through the surgery.  For a mom, that's still high enough to cause anxiety and fear but we're going to hold on to that 90% and try to focus on that (90% is better than the 70-80% given when we learned of her defect).  We know that nothing in life is guarenteed - for now we are so incredibly happy that we are where we are and that Payton is doing so well. 

We learned that the 1st 48 hours after the surgery are the riskiest so we'll be extra vigilent for that time and hopefully spending as much time with Payton as possible, trying to lend her extra strength to pull through the stress of the surgery with as little complications as possible.

The main issue involved is the pulmonary hypertension.  Earlier in our blog I explained with CDH babies there are two issues that are the life threatening issues.  One being Pulmondary hypoplasia (lung size and the docs were able to estimate this from Payton's ultrasounds and the size of her lungs were what placed her in the 70-80% survival range). 

The other being Pulminary Hypertension - effectively how well the lungs are able to transfer oxygen to the blood stream through the arteries.    Babies with pulminary hypertension have arteries that become 'twitchy' and restrictive thus preventing oxygen from getting to the blood stream.

This was not something that we were able to 'measure' before Payton was born and how well she's doing now is a testament to how well her pulminary hypertension is.  In fact, the surgeon today said Payton isn't showing any signs of pulminary hypertension which will hopefully work in her favour for surgery.  He explained that pulminary hypertension is the #1 risk of the surgery and though she's not out of the woods, its hopeful that she'll continue not showing signs of pulminary hypertension which will work in her favour of coming out of surgery with a good prognosis.

We were told we can breath our 1st sigh of relief 48 hours after surgery which we estimate will be around noon on Wednesday.

Tonight I'm heading home.  It will be the 1st time I've been home in over 8 weeks and I'm giddy with excitement to sleep in my own bed.  It will be the last time I'll be home until Payton is well out of the danger zone of both her surgery and her CDH.  Until then I'll be staying close to the hospital Easter Seals and hopefully we'll be able to have Livy and Wilma coming down to the city most days (even Livy some nights) so that I won't be so cut off from Livy like I have been the last 2 months.

Its going to be a juggling act between our two girls and I'm so incredibly thankful that both are in good hands no matter where I am. 

I once again want to thank everyone for reaching out and letting us know how much they care and that they are pulling for Payton.  She's pretty special to us so it means a lot to know that we have so much support and people thinking of us.

A Fine Morning in the NICU

Last night was hard for me.  It was my 1st night alone in the hospital and I had a few hiccups.  Seems they want me pumping every 3 hours and when your trying to roll out of bed with a c-section wound on your abdomen it can be difficult.  I believe my 1 am pumping was my hurdle point where the pain has been the worst yet, but from there it seems to be getting better.

This morning I feel pretty good and was able to walk the entire way to see Payton in the NICU and attend morning rounds (which is a great accomplishment considering I've been relying on wheelchair and others up till that point).

I arrived in Payton's room just as she was getting another x-ray.  It was interesting to watch them maneuver her around and how her stats jumped around on the monitor.  Still, she was very calm and we learned that it is due to the switch of her pain meds to Morphine which has longer staying power then Fentanyl which she was previously on.  The downside to the Morphine is that she's 'out of it' enough that she's no longer breathing over the vent but the upside is that she's much calmer and she isn't desatting as often as she was with the Fentanyl (which seems to be preferable to the neonatal team).

Rounds this morning continued along the positive in that Payton continues to hold her own.  She's not 'improving' per say but that's ok, because her stats are good enough that she's stable and 'fine' (the medical term used a lot in morning rounds).

The biggest surprise (though expected I guess) is that the Neonatal Dr has cleared her for surgery.  Yup, if the surgical team is ok with it, she could have surgery as early as today. 

But, it was explained to me that often the surgical team has different parameters for when Payton is ready for surgery so it could well be that we continue to hold off for another couple of days.

One thing the Neonatal doctor cautioned after rounds is that often CDH babies come back from surgery sicker, some even really sick so we needed to be prepared for her to not handle surgery and the aftermath of surgery that well.  As much as I'd love to see her continue doing 'fine' where she is without increasing her risk, I know Payton needs to cross that next hurdle before she can come home to us. 

I was also told that there would be no harm if the surgical team opted to wait it out a few days.  The neonatal team believes she's ready now but that she will be just as ready even if they hold off till Tuesday.

So today we may learn more about her near future in regards to surgery. 

I also got to be present when they removed her catheter (which she was peeing around) so was able to help with a diaper change. 

So all in all, a 'fine' morning for both baby and I.

Day 2

I want to start off by saying that we learned today that a little CDH baby grew his wings today, one we had been following on our Blogs We Love.  Little baby Parker said both hello and goodbye today.  He has a special place in our thoughts and our hearts today.

In regards to Payton, she's had a good day thus far and has settled into life on the outside.  The nurses are learning her quirks and what her triggers are and trying to minimize those triggers.

I managed to listen in to this mornings rounds with the doctors as they had their 1st morning meeting regarding Payton.  They discussed everything with particular attention to her vent settings (set at 45 and room air), her NG tube and her sedation.  These were the items they were working to tweak today.

Her vent settings it was determined would be reduced to allow her to breath a bit on her own.  By the time I went to see her at 4:30 pm she was down to 40 (yesterday 50) and was breathing 43 (so a bit above the vent).  He CO2 levels were good, not great but good enough to continue letting her figure it out on her own at this point.

I know they did another x-ray to determine if her NG tube was placed right.  Though used for a number of things, this morning I learned that at this stage for Payton the NG tube is draining fluid from her stomach to keep it out of her bowels.  They want to ensure to keep her stomach and bowels depleted so they don't put added pressure on her lungs.

She's becoming more sensitive to sound, lights and touch so the concensus was to minimize those irritants in her environment to minimize her reaction to them (rather than up her sedation).  Still, when we went to see her at 4:30 pm she was fussy enough that they decided to up her sedation in order to keep her calm.  One thing they want to avoid is having her get too upset since babies will swallow air when upset which could put air in her stomach and bowels and put too much pressure on her heart and lungs.

Dwayne went to see Payton around 1pm today and got a treat.  He got to take part in some of her care, cleaning her eyes and mouth out with a gentle wet swab.  When I arrived at 4:30pm I too got to be a part of her care and did the same. 

She continues to do well and we're so very happy that she's holding on so strong.  Its likely she's past her Honeymoon stage so we're hopeful that this is an accurate reflection of her current situation and if things continue, Monday will look likely for her surgery.

I just learned that Grandma Val got to see her after they upped her sedation and Payton did well, tolerating touch and sound a bit better.  Even had her eyes open and was looking around so the higher sedation is complimenting her well.

I took a few photos of her today (even got an opportunity when her tanning booth lights were on to take one with a bit more light). 

These are ones where she's been intubated so this is what our precious little one looks like now and will likely look like until well after surgery.

Her spinnly little toes - looking like Grandpa Daves.

She's looking tired here with her bags under her eyes

 but we can see her whole head and face despite the vent.

Her cute little face and makeshift irritant suppressor to keep out light and sound.

Suntanning under the heat light - she's going to be a sun seeker like her mom.

Update - Day 1

First off I just want to say THANK YOU to everyone who has reached out to us here, on FB and everywhere else they've been able to do so.  We very much appreciate each and every effort even if its just to pop in and read on how Payton is doing.

There's not much to add to what I wrote earlier.  In the end, Payton lasted on her own for about 1.5 hrs.  By then she had tuckered herself out and was too tired to keep breathing on her own so her oxygen levels started dropping and that's when they hooked her up to the Ventilator. 

She's currently on a setting that would be considered moderate in so far as pressure is concerned but is still breathing room air quality (ie they aren't giving her any more oxygen that what is found in air).  She's doing about 30% of her own pressure while the vent is doing the rest.  They did say that they have given her a bit more help than she possibly needs but mostly so that she's not maxing her effort each moment and this hopefully will allow her to rest and build up her strength.

From what we've read each CDH baby goes through a 'Honeymoon' stage in the 1st day or so and this was reiterated to Dwayne by the doctors.  So the next couple of days will really let us know how she's handling things (today may be the best she is for the next few days).

They have said if all continues along this 'good' path then we could be looking at surgery as early as Monday but its possible it could be put off for up to 2 weeks.

Here are a few pictures and a video.  These are early pictures and we haven't gotten any yet of her hooked up to her vent...mostly because at this point she's becoming sensitive to external distractions so they have her room darkened and door closed to keep out light and sound (not the greatest for pictures).

Hopefully tomorrow I'll be much more mobile and I can spend extra time with her (rather than the quick bed fly by on my way from recovery and a quick trip down in a wheel chair at about 8:30pm tonight.

We are so incredibly proud of how well she's doing so far and so very thankful that she's meeting the hopeful expectations of her condition.  We know there are a number of hurdles ahead and we know that her recovery will be a rollercoaster for both her and us but we are so thankful that she's had such a promising start and we got to see so much of her from the get-go. 

Sitting back patiently and waiting to see how well she's breathing.

Daddy picking her up.

Its all coming back to Daddy - all new for Payton and she's letting everyone know.

Big protesting mouth like her sister had on her 1st day.

Mom, Dad and Payton photo op.

In the NICU still breathing on her own and still crying.

Tuckered out...still breathing but not long now till Vent is added.

A bit of video showing Payton after they removed her from the delivery room and into the NICU.  She's still breathing on her own here (did for ~1.5 hours) but soon tuckers out after all giving it her all.

She's Here

Payton arrived with a little cry and I got a quick peek of her over the curtain.

She was quiet for a time and we later learned that they tried to intubate her at that time. Apparently she had other plans because she wouldn't let them and started to kick up a fuss.

From there she was crying steadily and breathing room air.

I kept hearing one of the NICU Dr.'s repeat "She's doing remarkebly well".

Payton hung out in the delivery room for a good half an hour where we listened to her cry. Dwayne got to hold her and when they brought her to me she was still on only room air. One doctor said if they didn't know about the CDH they wouldn't have guessed with how she was acting.

I was sent over to recovery and they took Payton and Dwayne to the nursery. I'm not sure when but at one point she did start to struggle breathing and they then intubated her with the regular ventilator.

I got to see her again at around 2:15 in her room in the NICU where she was on a vent with a number of other lines attached to her.

At that point one of the Dr.'s directed that she needed an NG tube (STAT) so they hauled me out of there in my bed and took me up to the postpartum floor.

They had already done an x-ray and just a few minutes ago I learned they were also doing an untrasound. I'm not sure of the assessment of either test as Dwayne's been the one receiving the details (and his NICU learning curve is just beginning).

She's beautiful. Her hair is dark with a bit of wave. I have no idea of birth weight or exact timing of delivery but so far things are well and she's simply amazed us just by being her.
I'm doing well and thus far handling the post op well. No pain yet but have managed to keep my cookies down so far :)

Thanks everyone for your well wishes and thoughts. We are well aware of how incredibly lucky we are for what we have thus far been given and though we still have many obstacles to overcome, we are simply amazed by our new and precious little girl.

Almost time

Today is the last day I'll have this precious little bundle in my tummy.  I'm surprisingly calm for a number of reasons - far too many to explain. 

Here's a quick belly shot the last day pregnant with Payton

 (loving the white stockings that are a staple with long term pregnancy bedrest).

Today we met with one of the Peri's and a Resident to go over the c-section and the associated risks.  I have known from reading that one of the risks with placenta previa is a hysterectomy.    We discussed this and how much of an effort I wanted them to make to save my uterus in the event the placenta doesn't release from the uterus. 

It was a little bit weird (nostalgic) to say "This is my last pregnancy, please don't prioritize the uterus".  Its sad because in a heartbeat I would have more children (and we still may, just not from my uterus) - if pregnancy for me didn't come so often with heartbreak as well as the emotional and physical stress of IVF, bed rest and all the rest.  Seems weird to think that we'd be hit again with another rare issue in a subsequent pregnancy but I recognize my limitations - both physically and emotionally.

As rare as the risks are of a hysterectomy, both Dwayne and I have stopped being shocked about how many 'small' odds we continue to find ourselves in so we are not going to overlook another possible unlikely situation.  We need to be prepared.

Some have asked what time Payton is to be delivered tomorrow.  Her birth time/date is scheduled for:
July 28th at 11:00am.

We will try to update as we go but we'll be relying mostly on Dwayne and he could have his hands full with the activities surrounding Payton's 1st few hours.

In parting, here is the Blood Donation details near Children's Hospital for those who wish to donate blood:

37 weeks and 3 days (2 days till delivery)

Today is probably that last 'normal' day I'll have (and when I say normal I'm comparing it to the last 7.5 weeks that I've been living in limbo away from home).

Tomorrow is the eve before Payton's arrival and we have a flurry of activity going on from the arrival of my sister to a visit with Livy to booking us into Easter Seals accommodation.  I also have a 'dinner out-in'.  In that we're planning on bringing outside food 'in' so that I can enjoy a final meal before I'm starved for the c-section and recovery.  Very much looking forward to it.

So while tomorrow is the last day, we've filled it full enough that I'm hoping it destracts me from what lies ahead - the unknown.

I've had many thoughtful moments to reflect on how I was going to feel as delivery neared and of course how I'll emotionally deal once Payton is here.    I wasn't sure if the fear of the unknown was going to consume me or not. 

In the end, I can't help but be so incredibly relieved that we've made it this far.  If nothing else, knowing my body didn't totally give up and instead we've given Payton the very best opportunity to fight her battle with CDH brings unequivacal relief.

From there, it will be Payton's fight and I can only hope that we are there to surround her in as much love and appreciation as possible. 

A number of days ago I said I was going to share some of the expectations of the NICU and from there I failed to follow up on that promise.

Here's what we know/expect and are hoping for:

1. No gifts - Payton's space in the NICU is limited and we simply don't know how much she'll be moved from one area to the next.  Gifts, while extremely generious, can be difficult to juggle/utilize.  We're hoping to make sure Payton's area is 'her own' but want to ensure we do so in a manner that is suitable to her area in the NICU.  

2. If your interested in doing something that will make her feel loved (maybe not today but in years to come as she looks back on the 1st few months of her life) there is an email service offered by the hospital.  All you have to do is send an email to BCCHbestwishes@cw.bc.ca  including:
   Your email greeting (no confidential info)
   Patients full name - Payton Brickner-Kress (must include Brickner)
   Patients Location - NICU (we will update when/if she gets moved)
   Your full name
Your message will be printed for Payton on decorative material which we hope to be able to surround her with (on her bassinette etc).  It will also be a wonderful keep sake for her when she's older.

3. Limited guests - Dwayne and I have decided to limit guests to only include close family at this point.  The main purpose of course is to minimize Payton's exposure to too many noises, germs and disturbances.  Its likely that even once Payton comes home we'll have to limit her outings and exposure to others and often we hear that its recommended to limit this for up to the 1st year for CDH babies.  Depending on how Payton does will depend on how strict we are with her exposure and we thank everyone for being patient with us.

4.  Those guests who do come to see Payton.  Be prepared to donate blood.  We are asking everyone to either donate before they come or donate when they come to see Payton (we'll update any visitors as to where they will go to do so).   In our efforts to try to make the best of a situation we want something wonderful to come out of Payton's time in the hospital.  As a likely recipient of a blood transfusion, we felt it a fitting way to 'give back'.  Since our lives are touched by more than just CDH we felt blood transfusions were a good fit for donations...and its something that, for the most part, we can all afford.   This of course extends to anyone (even if they can't come for a visit) and we would love to know that Payton's presence has touched enough people to encourage them to go and save a life.

That's all for now.  We'll be sure to keep everyone updated even if in little bursts that orginate from our cell phones as we go.

Thank you to everyone who's been there to support Dwayne and I (and Livy).

Aches and Pains

I'm glad I made it through the weekend because Livy and Dwayne got a much deserved weekend alone (sort of) with no traveling obligations to come see me in the city.  But as of today I'm achey enough that I'm ready to go even if our 'plan' for Thursday gets foiled.

It never helps much when you sleep poorly and have a dancing munchikin in your belly aiding to the aches and pains.

Its funny, because Payton has become more active in the last few weeks so we know she still has a lot of room in there.

I was hoping to get a few more belly shots but as usual, all the good dancing shots occur before I can get the camera out...still, its a great little clip for us to have remembering the last few days when life wasn't such a fight for her.

Peri visit post small bleed

Well we slipped through the cracks last night.  I just met with the daytime Peri and apparently my bleed last night wasn't reported by the nurses.  Which I guess could be considered a good thing.

The Peri said that we'll keep coasting but next fresh bleed its an automatic delivery no matter how much I'm bleeding (its safe to assume that had they been notified its likely we would have delivered last night).  The rational behind it is "Why wait for me to lose more blood thus possibly requiring a transfusion.  A few days early at this point isn't worth that risk".

So we get a bit of a heads up (which is good for Dwayne and mom and Livy since there will be some preparation needed if we need to get everyone down here asap).  We know the minute I start to bleed we need to get everyone prepared (last night I just put them on standby to wait to hear back from me) and the support crew on route.

The irony - the Twilight Series makes an impact

So I've obviously had a boring weekend so far...the weather's nice enough (finally) that most of my 'support' is enjoying a weekend at home soaking up the sun and warmth of possibly the 1st summer like day that we've had.

Thus, I'm locked away in my room keeping myself preoccupied (and doing a so-so job of it).

One of the desperate acts I've stooped to is watching the 2nd and 3rd movies in the Twilight Series.  How fitting since part way through the 2nd moving I started bleeding again...apparently just the sight of blood makes me 'sympathetic'.

It wasn't much of a bleed (I don't think the nurse even notified the docs on duty) and it stopped after a couple of hours.   I haven't seen the doc yet so not sure if this will impact anything as far as timing is concerned.   I hope not.  We have a plan in place and I'd like to utilize that plan if possible (for no other reason than feeling like we have some control in the whole scheme of things).

If we get thrown another curve ball we know we can adjust, we're getting good at adjusting.  The only thing I'm aiming for is to NOT deliver Payton today.  Our support team is bare bones today so today isn't a good day.

37 weeks!

Today we hit our 37 weeks gestation.  We are officially Full Term :).

Yesterday was a good day with just a little bit of excitement.

I got to see Livy for a bit but her visit ended on a low note as she was super tired and ended up tripping and hitting her face on the corner of my hospital bed.  It was good in a way because one of the things she does for comfort is 'belly time'.  So she laid her sore face on my bare belly and cried...its possibly the last time she'll be able to do that with the current comfort.  Right now my protruding belly is a perfect perch for a crying little girl but in a few days it won't be so easy for her to lay her head on it.  So for both me and her it was a good cuddle moment, one I haven't had in a long time.

I also had a friend (Megan) stop by and bring finger food for dinner.  No 5 star but it was a delicious break from the mundane hospital food.  Megan got dinner and a show as I started up with an uncomfortable contraction followed by frequent braxton hicks which they decided to put me on the monitor for.   

Its important to note that at this point in my pregnancy I 'should' be getting the odd uncomfortable contraction as my cervix begins to soften, shorten and then finally dialate in preparation for delivery.  Its absolutely normal.  But, we want to prevent the normal if we can because that normal could cause the placenta to pull away from where its attached to/near the cervix and trigger another bleed.  I think by now (at 37weeks) another bleed is an automatic delivery and its likely if it does happen they won't try to wait it out. 

I also got a wonderful and very thoughtful gift from Megan.  She bought me a beautiful bracelette that I very much look forward to wearing.  Its safely tucked away for me to wear after delivery since I'm not allowed jewellery while in surgery.  Thus, I opted not to wear it in the event I do bleed and have to take it off in an emergency situation.  The wonderful think is that it has no sharp edges and will be compatable to wearing while handling a baby (no worries about handling a newborne since we won't be for a little while yet).

Yesterday ended with me settling into bed with a couple more 'uncomfortable' contractions but they slowly eased during the night and this morning its back to my usual non-irritable uterus.

Another Day with The Bug

I'll be seeing Livy today!!!  It won't be for long but even an hour is much appreciated.  I'll be getting my IV out shortly so I'm even more excited that I can hold her properly (holding a 2 year old with an IV in your arm isn't the easiest thing - a very appealing contraption to the curious little mind).

Today is also Antepartum craft day.  Its seems silly but for those of us who are stuck in rooms all day with TV, internet and magazines its a wonderful way to have human interaction while doing things that are somewhat productive (last time I made a burp cloth and bib).

The material for the crafts are donated so I asked mom to buy some new patterns that we can donate since its been an activity while here that has been very well recieved by me.  Paying it forward :).

On another note, now that we're 14 hours away from 'full term' I've been able to once again focus on the survival numbers that the peri's have given Payton.  In a short time she'll no longer be considered preterm and we're WELL past the point of premature.  So I've been focusing on the 70-80% survival odds for her.

In trying to compare that to something I do know more about (and would possibly be of relevance to the average person), Payton has similar survival rates of a baby born at 25-26 weeks gestation (viability being 24 weeks).  Because her survival rates are a bit better at 39 weeks vs 37 (or 37w5d as we are hoping for) then its worth scaling back and saying that she'll have similar survival rates of a baby born at 25 weeks gestation.

The good news is if all goes well, her duration in the NICU will be MUCH shorter than a 25 week baby.  If she's doing well then we could be looking at just a month in the NICU (an average 25 week baby may see 3 months).  So while she'll be one of the sicker babies to start off her time in the NICU if all goes well she'll improve quickly (especially once she's out of the danger time frame following surgery).

I'll be filling our blog up this week with details on how we anticipate the time after delivery to go.  While Payton will be allowed visitors (with us as guides) for the first bit, especially while she's at her sickest, we'll be limiting visitors to those who are essential to the NICU.

I recently read about another CDH baby who, while very sick, was on the road to recovery and ended up growing his wings due to a Staph infection at 5 weeks old.  Its a stark reminder of how fragile these babies are and how its our responsibility as well to minimize any potential harmful infections/colds/virus not just for our baby, but for others in the NICU as well.  Thus, we'll sort of be playing it on a day by day basis on whether recreational visitors are a good idea or not.

7 down and 1 to go!!

Yup, we (Payton and I) have been in Vancouver for 7 weeks now and we're excited to say that we've only got one more week to go till Payton is born (hopefully 1 more week).

We got a visit from our fav Peri today when he came to discuss a few options.  I realized later that it was more him 'thinking out loud' and really, by the time he described the few options he had talked himself out of them :).

Still, I was very glad to hear how his thought process worked and even though the different options were introduced needlessly, I'd rather hear how it gets dismissed rather than hearing the option then a day later having it be something totally different (which has happened on a few occassions).

The option presented was to possibly do an amnio on the baby's amniotic fluid as they can determine lung maturity through an amnio.  If the baby's lungs were mature then we could deliver as soon as tomorrow.   If they weren't it may give us an indication as to whether the lungs would likely be mature by next week when delivery is scheduled for.

I liked that idea and agreed if the lungs weren't mature by next Thrusday that I'd be willing to wait it out a bit. 

But then the doc mentioned that even if mature now, it would serve baby well to put on a few more hundred ounces by waiting to the scheduled delivery date.

I think the only upside would be if I had another major bleed whether it would make sense to wait (if lungs are not matured) or if it would make sense to deliver (if lungs were matured).

Alas, he talked himself into just waiting...so we're waiting.  Still, I very much appreciated being part of the process and better understanding how important things like a little extra weight and a little bit extra lung maturity really are.

Still Coasting

We're still coasting and thus still pregnant!!

Bleeding seems to have eased and I can hopefully settle down for 8 days of breakfast in bed :).

Walking on Eggshells

Just a quick update as I sit in my hospital bed.  This morning has seen additional bleeding (each bleed previously has been isolated so this is new). 

Its not much compared to the previous 3 but it is the 1st time the intial bleed has continued onto smaller bleedings.

I'm not sure what this means but for now I'm hurriedly emailing to tie off as many work loose ends as possible (yes, I'm still working :).

Hopefully things settle soon and if I'm still in the antepartum ward later today I will update (if I'm in L&D I'm stuck unable to provide much of an update - maybe I'll take this time to learn how to update using my phone :).

Ta

Best Laid Plans

On a daily basis I'm reminded of the fact that the control we have in life is minimal and sometimes the Best Laid Plans are just that, plans.

This morning I woke again to bleeding.  My first bleed in 4 weeks (almost to the hour) and when I arrived at the hospital for the first time there were whispers of a c-section.  But I'm getting ahead of myself...

I woke this morning at 2 to another bleed.  Worse than the first but not as much as the second.  I was alone at the condo I was staying at so it was a simple deduction that I needed to call 911.

First Question - Ambulance, Fire or Police?  I answered Ambulance and proceeded to describe my dilemna.

I heard the sirens as I started to pull a few things together (phone, book, wallet with care card) and cringed as I realized they were for me.

I buzzed up the Ambulance attendances and waited at the front door to ride down with them (no stretcher thank goodness).  In the lobby I realized that not only had the Ambulance attended but so had the Fire Department.  How they felt they were going to be of service to a woman possibly in labour still eludes me but I'd be tickled pink to find out.  Rest assured they were quickly waved away by the Ambulance attendant.  I suppose rather than be perplexed I should simply remain grateful that if the Ambulance had flatted on the way to the call, the Fire Department would have been able to get me to my destination just as easily.

I arrived at Women's (again) and sat in the L&C ASS room for about 2.5 hours.  Back and forth with doctors and nurses with comments regarding delivery that day despite me questioning the upside with a sick baby who we've been told is better to hold off as long as possible.

I was then shipped over to Labour and Delivery 'labour' section where I sat for another 12 hours starving and waiting hour by hour for the medical staff to determine that the bleeding had slowed enough to let me keep the baby in even if for another few days.  Days that were explained are still so very important to her overall health and survival. 

It was mentioned a number of times that I sat on the fence...delivery was debated amongst a few doctors and the NICU until it was determined that letting this bleed coast was worth a shot.

BUT - I'm now in the hospital for the duration.  Fortunately the duration is only 8.5 more days. 

I've also been made well aware that each day that 'fence sitting' leans a little more and more towards delivery thus my Best Laid Plans may be up in smoke and I'll have to settle for plans made by the seat of our pants.

10 days and counting

I can tell emotionally that the looming delivery date is starting to worry me.

The last 2 nights I've been having nightmares about babies having surgery and an emergency delivery (followed by a baby in the NICU).

I can also feel my anxiety in my chest when I really think about everything that is going to start to take place once July 28th gets here. 

Regardless, there's still a little ray of sunshine that continues to brighten my days even if only sporadically.  Olivia :).

Over the weekend I got to spend much of Saturday and Sunday with Livy and Dwayne.  I can't believe how quickly she's growing.  There's an ol' wives tale that says if you measure a child at 2 years of age and double their height that's how tall they will be as an adult.

We'll Livy still has 4 weeks to go till her 2nd birthday but I measured her yesterday and she's 1/4 of an inch below 3ft.  If the ol' wives tale holds true, she'll be just shy of 6ft as an adult. 

She's also blowing my mind on how much she's learned.  For quite a while now she's been able to sing her full ABCD's (as she says it, the over achiever who has to add the D).  And she can count up to 13 (no longer skipping the #3).  She tries to go higher but her numbers start jumping around.

She's also understanding the concept of counting objects (as long as they are limited in number) and if asked 'how many blocks?' she'll count each block and stop when she's done (where as about 3 weeks ago she'd count 2 blocks over and over as high as she knew her numbers).

Oh, and the Parrot Stage!  Love it (and hate it because living away from her these last 7 weeks my vocabulary isn't all that 'clean').  She repeats everything you say and its at times hilarious to have a conversation with her as she repeats every word/phrase.

Oh, and our new car - she loves that too.  There are times when I'll put her in on the opposite side of her car seat and about 2 weeks ago she would just climb into her car seat....now its a game of cat and mouse with her climbing all over the car to avoid whatever door your opening to try to grab her.  The 1st time it happened to me we were in a rush and I just thought she was being ansty.  It took me a while to figure out what exactly she was doing.  Once I realized it was a game of cat and mouse I had to laugh...it was so stinking funny watching her have so much fun being chased by mommy...and the little stinker is good at it too.  If she's in the front seat and you open the door, she's already half way to the back, but the second you go to close the door, she's already backtracking her way back into the front.

Its moments like these I'm so thankful for because they fill my mind when I'm missing her and immediately they put a smile on my face...but its also these moments that make me miss her so much more.

I'm hopeful that in 2 weeks I'll be sleeping in my own bed, even if its just for 1 night.  There's a lot of things that need to happen 1st (Payton needs to be doing well in NICU and I need to be recovered enough to be comfortable doing a long drive to and from the city) but I'm hoping that all things go well and that goal can be achieved.

36 weeks 1 day

Well, I fell off the blogging wagon.  I promised daily updates so that there was no questions as to whether I was in hospital again or not and yesteday simply got away from me.

A bit YAY!! in that we're less than 1 week off of Full term :)

Today is a day of thanks (not to be confused with a day of venting since my thanks revolves around a few examples that may be precieved as a vent).

I want to simply send out a HUGE thank you to everyone who has gone out of their way to offer me/us support.

Its important to point out that there are people in my life who I 'thought' would be the ones who would be there in tough times (even just a little bit) but ironically, many who I thought would be supportive I've barely heard from (some I haven't heard from at all).

I'm generally one keep my expectations low but its hard when there are some who have be absolutely INCREDIBLE in their support - many, I have only recently 'met' since learning we had a sick baby.  Others I would consider friends, but not 'close' friends.

I have been simply amazed at how incredibly supportive and giving some people have...with their time, energy and most importantly kind words.

So, for those of you who have gone out of their way to help (with words of encouragement, playdates with Livy, coming to visit me, putting me up in their homes, emails, telephone calls, dinners brought, chats, walks, photos) I can't begin to thank you enough. 

Even more noteworthy are those who are also suffering or struggling who have taken the time to reach out and let us know they are thinking of us - an incredible example of 'good people'.

It really does show an amazing side of generosity and for some they may think that its not much but I have to say, that you are an exception and your efforts should not ever go without acknowledgement and appreciation.

So, Thank You!!

Odds and Sods

Today is filled with a few odds and sods.

1st off, today is the 1st time I got to see Livy this week. Its been a week since I saw her last so I was missing her extra today.  We had a few bumpy roads with trying to get down at nap time.  She's changed so much and I've essentially missed it all thus after an hour of trying to put her to bed we gave up once both of us were crying (her in frustration and me just because I missed her so much and she's grown up and changed so much).

Livy and I sort of met up with Grandma Val, Auntie and 3 cousins at the Acquarium but it dídn't work out too well since I'm still overly weak from the various bedrest and lack of activity.  That coupled with an over tired little girl made for some interesting moments.  The most interesting was when she decided to take off on me in the gift store (at the exit).  Just imagine an 8.5 month pregnant woman with a bit diaper bag on her shoulder trying to weave in and out of dozens of people stuffed in a gift shop full of breakables and shelves of displayed tiny things...not a great combination.  I did get to a panicked point when I pushed another woman out of the way since Livy was bee-lining to wide open spaces.  Yes, I've become that mother who can't handle her child - the one everyone is wondering why she's having another one.

To top off a great day I recieved word that a job I've applied for has asked me for an interview.  They are scheduled for next week.  Ha, you say?!?!  I agree...an 8.5 month pregnant woman applying for a job.  Yes, I'll definitely have to do some fancy footwork in my interview so that they won't notice the baby bump. 

Oh, and some of you may not know why I'm looking for another job.  The company I'm currently working for is in a takeover bid.  As of Sept its likely I won't have a job...unfortunately we simply can't afford for me not to work and while we possibly could have afforded a bit of a break (say 2-3 months before I needed to find something) this could be a very good opportunity for me career wise so its something I want to jump on.

That's pretty much it.  Hoping to see Livy and Dwayne tomorrow. It'll be nice to have the whole family together.

2 weeks to go - the pieces of the puzzle are falling into place

As long as this little bear continues to cooperate we have a well placed game plan that seems like its coming together.

My sister is flying home from her 3 month vacation for the birth (thank you) and as a c-section vet I'm hoping to utilize her as much as I can.

I was able to bump up our Easter Seals reservation to July 27th so I'll be heading to Easter Seals the day before and overnighting hopefully with my mother.

Birth Plan:

I'm hoping to have the following support for the day of delivery.

Dwayne - present in the delivery room during the section (with a camera and my fingers crossed hoping he doesn't pass out and in fact can take lots of photos and video once Payton's born).  He's expected to stick to Payton like glue and keep as close to her as the team will allow.

My mom - unable to be in the delivery room but hopeful that she'll be able to go to the NICU after Payton is born and at a minimum report back to me on how things are going (though I've been reassured that the nurses are very good at doing so).  Still, its important to me since i can't be there that Payton have as many people looking over her as possible (recall she also has her 2 older brothers as guardian angels looking over her so hopefully with everyone in place she'll be well looked after).

My sister - the c-section vet.  I'm going to make her work.  Hopefully they'll let someone sit with me while I'm in recovery and beyond.   I'm going to play the sympathy card (sick baby/stressed mom) and maybe they will relax some guidlines. I'm not sure of the hospital's policy of someone in the recovery room with me but I know some hospitals you are alone.  Knowing Payton will be struggling I do fear being alone with my thoughts for too long.

Its also very important to give recognition to those who will be behind the scenes watching out for us and helping us in other very important ways.  Of course Livy's best friend and care giver Wilma will be keeping the little Bug well entertained during the day.  My other sister will be standing by and taking Livy for the next few nights (she'll have a house full of kids but that will work in her benefit I'm sure).   I'm hoping to see Livy a few times after the birth and siblings are allowed in the NICU (as long as they're healthy) so Livy will be able to meet her sister (with her 'Big Sister' T-shirt) as soon as Dwayne and I are comfortable allowing her to do so.

So there it is...my 1st ever birth plan (despite it being my 3rd birth experience). 

Now all we have to do is cross our fingers and hope that Payton stays put where she belongs for 2 more weeks or else this whole plan will be thrown out the window :).

On another note (which I think is important to point out) today is my Mom's & her twin's (Auntie Bev's) 60th Birthday.

Happy 60th Birthday!!!

For what its worth, Auntie Beverly has been my biggest blog supporter/comment'r so I know she reads it religiously.  Thank you Auntie Bev and Happy Birthday!!

OB Appointment - 35 weeks 4 days

Today was our OB appointment and it pretty much went 'status quo'.

It was determined that my doctor is on call during our scheduled c-section date and he heavily hinted that if we see if we can push it back a day then he'll be able to make it out.

We would love to have him.  He's one of those guys who cares about the end result and he confirmed that he uses plastic surgery sutures for closing up when he does a c-section.  He said one of his patients this morning had a previous c-section (via him) and this morning they couldn't even find the old scar to use for the subsequent section.

So, I'll ask but I have no expectations.  I'm hopeful for an easy delivery and quick recovery the most, I just figured if I could also get away scar free than it would be another positive in the whole scheme of things.

We have a date!!!

July 28th, 2011 is the scheduled birth date for Payton.

We were just a bit shocked that its almost a full week ahead of what we were expecting and while we did question some of the decisions behind the bumped up week (we know that getting to 38 w and beyond is best for CDH babies), the various factors behind our situation (ie Previa) certainly create additional unwanted risks the longer we wait.  So from the Peri's point of view, 37 weeks and 4 days vs 38 weeks and 3 days is close enough if we can avoid an emergency section due to another possible bleed.

So there you have it, I was anticipating another 3+ weeks to go and now we're down to 2 weeks and 2 days.

On another note (and Dwayne thinks I'm a nut in my thinking policy), July 28th is absolutely perfect.

The boys were born on the 7th, Olivia born on the 14th and Payton is scheduled to be born on the 28th (see the pattern??).

For Dwayne I think its an easy trick to remember dates, for me, its another number to add to our Lotto 649 numbers (that we managed to play about twice a year :)).  This week its 40 mil so maybe its a good time to try out that # 28.

Forward Progress - Sort of

We still don't have a section date but today I finally recieved my updated appointment schedule.  Knowing it was likely that we'd be scheduled for Tuesday appointments I've tried to keep a clean slate...which is good because that's exactly what we have (not sure if I should feel offended by the complete disregard of my schedule - after all, I do still have a life despite it being just a wee bit pathetic now adays). 

Tomorrow I'll have another NST test, quick ultrasound and a follow up appointment with the Peri.  I am HOPING that they actually have an answer for me regarding a delivery date tomorrow. 

Meanwhile, I continue to put my daily notch on the prison wall counting down the days.  Its down to 3.5 weeks now (if not less) so even though it seems like I have been waiting forever, eventually it will come.

Another quiet day

Just a quick post to confirm that we're still clicking along and today was another boring day (except for the peanut butter chocolate chip cookies that we baked tonight).

I'm trying to plan the next day with Livy and from my conversation with Dwayne tonight it sounds like he's having so much fun with her that he's going to hog her to himself as much as possible.

Tonight was a 1st for Livy and for us as parents (well Dwayne anyway since I'm MIA).  Livy pooped in the bathtub.  Apparently she tried telling Daddy a few times that she had a "Yucky Bum" and it only took 2-3 times before he thought it may be a good idea to check. 

Its quite something that we actually almost made it to the 2 year mark before this happened.  As much as I miss her, I'm just glad it happened with Daddy.

35 Weeks

Yay to another milestone and to our biggest one yet!! 

Its 35 weeks.  If Payton was born today (and not saying we want her to be) but she would be a candidate for ECMO.  I like to believe that being a candidate also means good things in her gestational development so all around I'm taking this to be a good thing.

I also had a few other great moments today that I'm incredibly thankful for.

I got to see my brother today (who I don't get a chance to see that often) and I got to see my Father again which is also a rare occurrence (he was talked into going down to Florida for the last shuttle launch).

Another special treat is meeting up with a friend who made a big effort to come see me (not just me but her day did entail a lot of travel so I'm incredibly grateful nonetheless). 

If Taryn does get a chance to read this I hope she understands that I talked her ear off ONLY because of how cooped up I am and what a special treat it is to chat with someone who shares so many similar experieces.

So all in all a good day.  The only thing that would make it 100% complete is if it had a little bit of Dwayne and Livy in it but I'll take my good fortune for what it is and save moments with those two for another time.

This picture of Livy is a bit old but I wanted to share it anyway because I think its so cute and such a reflection of how mischivious she has gotten:

34 weeks, 6 days

I'm down to the last 2 hrs and 15 minutes of hitting my next milestone - 35 weeks.

Honestly, if you had told me at 29weeks, 5 days when I was riding in the ambulance to Women's the 1st time that I was going to stay pregnant another 5+ weeks I wouldn't have believed you but I would have cried tears of joy.

I still can't believe that I have made this milestone after the bleeding I've had with the previa.

On another note, my phone call from the nurse didn't come today as promised.  So (you guessed it) I'm still in limbo for a c-section date.

Can't say I should be surprised, nothing seems to be going as scheduled with this pregnancy in the last 15+ weeks...heaven forbid if something actually went according to plan.

Still, I'll take disorganized and multiple changes to plans as long as I stay pregnant as long as possible.

Another 'Uneventful' Day

Another uneventful day in pregnancy land though a very good day for me.

Today I got to spend most of my day with Livy and right now she's snuggled in my bed so I'll get to wake up to her too. 

I can't believe how much she's growing and how much her talking improves by leaps and bounds.  She has her ABC's down pat and she counts up to 10 easily with 11, 12 and beyond doing 'ok'.

Her biting and pinching are getting ahead of her too so that's something that we need to work on.  I think on one hand its a stage but the other it her acting out because her life continues to be in a bit of turmoil bouncing back and forth between people with no consistency.  Today after pinching she even said to me "Livy time out??"    Unfortunately we weren't in a position to give the time out but it sad that she knows there's consequences and she still is doing it.    Not even 2 yet...sigh.

On another note, we bought a new car today.  Unfortunately its not necessarily a 'good' thing.  We really can't afford it but our other vehicle is 10+ years old and really badly smells of fuel and burning oil.  Its absolutely not something we can have with Payton and NOT something that I want to be driving with Livy. 

The debate between used and new occurred and because Dwayne and I just aren't mechanically inclined, we needed something that we could rely on for at least 4 years.  Its also a diesel so the commut will be much easier on the pocket book - especially since it looks like I'll be back commuting again myself shortly after we bring Payton home as the company I work for is being taken over and the new company won't need a Canadian office :(.  Sad - end of an era.

Today is also 5 weeks since my 1st bleed.  5 weeks of living in Vancouver and 5 weeks of not being home with my family.   If all goes well it'll be another 4.5 weeks before I'm back home again.    Still, as long as it sounds, I'm so glad we're over the hump (halfway point).

Waiting is my middle name

We're still waiting to hear about our scheduled c-section date. I heard from the nurse yesterday who's booking it and she said that she needs to coordinate the date with the surgical unit and to expect to hear from her by the end of the week. 

I'm going to assume that we waited too long and that the window they want us to deliver in is full.  Thus, I'm also assuming that I may be bumping someone. 

It seems wrong to bump someone who's already wrapped their mind around the date they can expect their little one to arrive but it's been stressed to us how important it is to catch that perfect window.  Too early we risk Payton having to struggle just a little bit more and too late we risk an emergency section due to bleeding.

Me, I have no expectations.  As usual, once I do things always seem to change.

Growth Scan Results

Great news!!

Today's ultrasound showed that Payton is well on track for her abdominal circumference.  In fact, we got just a little bit more info from the ultrasound technician as they were measuring her abdomen and we relalized how arbitrary the area they choose to measure is ESPECIALLY with a diaphramatic hernia baby.

Normally they use plane level to the stomach and the left portal vein at the umbilical region.  Without the stomach in her abdomen for further guidence the plane used for measurements has a bit more room for error.  Thus, its not 100% sure whether the technicial was measuring too high in her abdomen today or too low 2 weeks ago.

Regardless, we're very happy that she's showing good growth and that things (ie doppler and fluid) are supporting the fact that Payton's growth is normal.

There was no cervix measurement today but the placenta still covers the cervix and is still classified as Complete Previa.  We were told to expect a c-section date this afternoon. 

Growth Scan Today - and a few more things

Before I provide much info on the growth scan I want to clarify a few things because I realized after a few comments with friends that I'm confusing things  (sorry, it all makes sense in my brain).

There are two families I'm thinking about today:

Mom: Lisa
Baby: Maddie

Maddie is due to arrive via c-section at 10am PST today.  We wish them well and that the next few weeks see more joy and hope than fear and stress.

Mom: Maggie
Baby: Elisea

Baby Elisea was born early last week and put on ECMO after a few days.  Right at the point where they thought to take her off ECMO (because she was doing so well) she developed a bleed into her lung.  As of last night they were on an hourly watch not knowning if Elisea would make it off ECMO alive.  I haven't seen an update on Elisea yet this morning but we keep her in our thoughts and wish her family only the very best.  Anything less then that at this point is not on our radar and we'll deal with that if it happens (which of course we're hoping with all our hearts it does not).

As for us, today we learn how Payton is doing in her more detailed growth scan.  The last 2 weeks she's been doing well with her fluid and doppler scans as well as performing like a champ on her non stress tests.

We're a few hours away to finding out how these equate to her abdominal growth.  Recall Payton dropped to the 4th percentile and I later learned that her abdominal circumference was 261 cm.  In order to stay on that 4th percentile curve, we need her abdominal circumference to be at a minimum 278 cm.  We're hoping for more.

We're also hoping that my cervix stays long and closed and that our amniotic fluid is plenty.

Last night I started having very rare somewhat painful contractions.  I did notice the correlation between a full bladder and these very few contractions and I do very much remember these from when pregnant with Livy.  They were NOT labour contractions, just practice ones though it does potentially signify that changes in my cervix may be happening (again, totally normal but may possibly have an impact on bleeding) so we'll be looking at our scan to see what, if any cervix changes are noted.

I'll ensure to update later today when we have results.

On another note, I have had one friend comment on a blog I have removed from our list of Other Blogs we Love. I did send a request to each family before adding their blog to our list of blogs to respect their privacy and desire to be added.  While, no one objected not everyone replied with a direct yes.  About a week ago one family posted that their blog was private and while they never directly made any request, I felt strongly about ensuring that their blog remained private.  Thus, while we still keep them in our thoughts we also respect that this is a difficult road and sometimes it can feel like your a trainwreck that others are 'rubber necking' thus we will do what we can to make their road easier and if its simply keeping their request for privacy then that's what we'll do.    We do continue to wish the family the very best.

A CDH baby in Need

Today I learned about another little girl, Elisea, who was born on June 26th and was hooked up to ECMO on June 28.  Elisea was doing very well on ECMO and the doctors were thinking about taking her off ECMO only to have her unexpectedly start bleeding into one of her lungs.  One of the risks of ECMO is the fact that babies are on blood thinners so bleeds such as this are common and extremely risky.

Maggie, Elisea's mom, doesn't have a blog but I 'met' Maggie on Facebook through the CHERUB Facebook page.

We haven't ask much from friends and family, but we are asking that you send this family your thoughts and prayers (if that suits your beliefs) and most importantly your prayers for this beautiful little baby girl.

If you are interested in learning more about Elisea and her fight you can find the CHERUB's page on Facebook and read more about her there.  She is quite simply, so precious.

34 weeks, 2 days

Today's been another uneventful day but with some other excitement to keep me busy.

I met my sister downtown with her 2 children and my other niece and nephew that I haven't seen for 9 months.  It was great to get out and see them even for just a little bit.  They've been given the task of keeping Livy busy so she's not missing me so much (and not missing her other little cousins so much).

I also snuck in a Costco trip which was another break in my day.

The Home Care Nurse also paid a visit this morning and Payton once again performed exactly like she was supposed to so one more day with things looking good.

On another note, one pregnancy related symptom that I finally noticed is the presence of my Linea Nigra - just a faint line noticed on Saturday evening and I anticipate it'll darken over the next few weeks quite a bit.

With the boys my linea nigra appeared after I delivered them at 24 weeks and with Livy it appeared at 28w, so its odd for me to have gone so long this time (exactly 34 weeks).

Again, no idea what its for but its here.

So Maggie's due to arrive at 10 am tomorrow morning.  If I recall correctly, Maggie and her mom will be delivering in Seattle so only a small jump from where we are located in Vancouver.  We'll be keeping them in our thoughts and cheering them on as they begin their CDH fight.

Thoughts for Maddie

Today is the eve of Maddie's date she's due to arrive - though I'm not 100% if tomorrow will simply be a date of induction (and with that we're never 100% sure of the date she'll arrive) but it could also be a c-section date.

My thoughts today are with Maddie's family.  The day before they begin final steps to welcome Maddie (and welcome the very unknown her fight with CDH will bring) must be a frightening though exciting time for Maddie's family.  The calm before the storm so to say.

I can only imagine the fear they are experincing yet the joy they are feeling as they eagerly anticipate the welcome of a little girl who has already touched so many.

I wish the family peace because even in the best of situations, their road ahead will be both emotionally and physically difficult.

Tomorrow we will think of Maddie, for today we think of Maddie's family.

PS - I'm still very upset that I cannot send direct support to Maddie's family via blog comments so I very much hope that my thoughts and well wishes (even if silent to the family) do find their way.

Visit with Livy

Today was a day I got to spend with Livy.  It was both wonderful and sad.

She just left a few minutes ago and already the room feels empty.

I know I can do 4+ more weeks like this, I just really, really don't want to.

Not much else going on and things continue to remain uneventful.

Happy Canada Day

Today was a pretty uneventful day other than a movie and dinner with sister-in-law Deanna.  So kind of her to keep a slow moving object company.

Today's at home Nurse Care went well and Payton's heartbeat was considered "perfect".

Tonight we wait for the fireworks and from our vantage point on the 26th floor overlooking English Bay should be perfect.

Tomorrow is a day with Livy and Dwayne and I'm so looking forward to it.