It seems like time is standing still

Its hard to believe its been 4 weeks since my ambulance ride to Vancouver (last time I saw home).  While it seems like we're moving forward, today it feels like' time is standing still.

After my 1st bleed the comment was made that instead of aiming for 38 weeks for a c-section we'd be looking at 37 weeks (the peri mentioned it may even be sooner).  So I've been counting down the days, weeks as we near that 37 week mark, knowing we'd be nearing a whole slew of problems, but also knowing it was one day closer to being with Livy and being home.

Today's doctor's visit they finally determined that its time to scheduled a c-section date.  What did they recommend??  38+ weeks. 

Just another example of discrepencies between doctors and lack of continuity.

There's a number of pros and cons associated with a 38+ section date and part of me wants to cry but also be relieved.

Pros:
Payton gets to stay in as long as possible thereby increasing her odds in her fight with her diaphragmatic hernia.
Putting off the fear thats looming as we near delivery.

Cons:
More time for another bleed (possibly resulting in so many bad things, the least being the remaining 4.5-5 weeks in hospital).
Increased risk of an emergency section (of which would not be to Payton's advantage).
More time away from home
More time that Payton is in my belly equates to more time other bad things can happen (lets face it, my body isn't exactly young nor is it doing a good job keeping her 100% safe like its supposed to).
More time at Easter Seals (out of pocket) which will equate to less time that Dwayne and I will be able to spend with Payton and Livy as we juggle work, spend quality NICU time and spend very important parenting time with Livy.
More time spent in the hospital if I have another bleed keeping me away from Livy.

On July 9th I'll move into Easter Seals (9 days) and at that point I'm going to do what I can to have Livy with me as much as possible.  At the very least if we do make it till 38+ weeks, I'll have her nearby to make the long days and worry less noticable and more bearable.

So that's my 'feel sorry for myself' rant of the day.  If all goes well Payton's Birthday will be somewhere between August 2nd-4th.

A bit delayed but site wasn't working last night

Today was our OB appointment. It was a rather uneventful appointment until my doctor pulled out the doppler. Heartbeat of 175. He went to grab the ultrasound machine. Heartbeat between 165-170. Tried the doppler again, heartbeat of 175.

OB wanted to send me for further monitoring just to be safe.
I wasn't worried knowing that the 175 was quite common in some of my previous NST tests. BUT, I was going to error on the side of caution and take any extra monitoring that was available.

He sent me to St. Paul's Hosptial for an non stress test (NST) where I sat for 4.5 hrs waiting for the doctor. Unfortunately there was an emergency c-section that took up much of her time.

After 2 NST tests I finally got a chance to see her (along with 2 other residents) and it was determined that all is well.

On another note, I had a friend come over and take a few pics of the belly. After we made such an effort with our maternity photos with Livy it seemed wrong to not have any of Payton. AND since there was a big enough risk of another bleed in the near future, I figured it was important to do them as soon as possible. Ideally I would have loved to have had Livy be part of it but I didn't want to run out of time and end up back in the hospital again.

We stuck to straight belly shots simply because I'm such a wreck I would negatively affect the photos for sure.

Here's one she took using my camera:

Vent - Dwayne Please Read and Fix!!

Ok, so today's update is a bit of a vent for my very well intended husband.

After adding another email to our blog account, it has rendered me unable to post comments on others blogs (which is frustrating the heck out of me).

So for those of you who normally hear from me (if your checking in here) please know that I'm still following you along and cheering you on, just silently for now.

So if anyone has a solution to the problem here it is.

Normally when I sign in to my blog I can write a new post and then when I view blog, at the bottom of my post there is a little edit icon if I need to further edit it.  Now, that icon is gone and it shows that I'm not signed in. 

If I try signing in, it goes automatically to my blog home page without prompting my sign in details.

If I click on another blog and try to comment, it asks for me to sign in and I do then it asks me to insert the code (the jarbled letters to prove I'm not a computer program/spammer).  Once I enter the code it requests that I sign in again and repeat...

I have cleared all my forms, passwords, cookies etc.  I have tried deleting the email Dwayne added (but is now the primary and won't let me delete it that I can see). 

So I'm stuck...if anyone has any insight I'd be forever grateful.

1st Home Care Visit

Today was our 1st home care visit and things went very well.  After a bit of sorting trying to figure out the best/most comfortable way to set things up (and searching for an unused plugin) we were up and functioning.

We watched Payton's heartbeat for about 20 minutes and though it was hard to get a base line, this is probably one of the things you want to have difficulty getting...essentially she was so active.  The nurse said, "this is not the heartbeat and activity of a stressed baby".

So that went well and we were able to adjust some of the home management activities that are now a nice fit in the middle of all the advice we have been given so far.  So we have taken the mixed information and now have one solid plan for home care.

Thanks everyone for checking in (and thanks Auntie Bev for your diligent monitoring and cheering :)).

Loving the Uneventful

Just a quick post to confirm we did indeed make it out of the hopsital last night.

So I'm settled back into my previous routine with a lot more lying around and taking it easy.

With Canada Day on Friday there's been a few adjustments to my monitoring this week which will included my at home daily phone calls from the Home Care Nurses, fetal monitoring on Tuesday/Friday, OB appointment on Wednesday and an ultrasound on Thursday measuring exactly what they measured yesterday - fluid and imbelical cord doppler flow.

Green Means Go

It took all day of patient waiting and we finally got into ultrasound just after 6pm.  Its just before 7 pm and all looks good.

As for things I wanted to keep an eye out for all I really got for info is the amount of fluid (while I am interested in her abdomen circumference it slipped my mind when writing about it this morning that they won't measure that till next Tuesday, July 5th at the earliest).

The fluid pockets added up to approximately 11.1 cm so we're holding our own in relation to the previous scan.

A quick peek at the placenta shows it low and thick near the cervix but no measurement of the cervix...perhaps next ultrasound.

The date to determine the next ultrasound hasn't been made yet but I'm going to go out on a limb and assume Thursday, June 30th (crazy that June is almost over).

33 weeks 1 day

Just a quick update and I'll update later on in the day with results.

I finally found out what the day will entail (again, differing information which has caused me to be a bit confused and wondering if they're getting their days mixed up or if I'm hearing the info incorrectly).

So I am NOT getting an ultrasound on Monday.  They are doing an ultrasound today prior to being discharged.  I'll also get a NST test before we go.

There are 3 things I'm going to watch for with my ultrasound.  No longer am I concerned with the Placenta Previa - that has dropped too far on our list of concerns (which is somewhat ironic since its what keeps me coming back to the hospital).

These are the things I'm looking for:

Amniotic fluid - they measure the 4 largest pockets (last time there were only 3 to measure) in the 4 'corners' of the uterus.  We want our amniotic fluid to be above 8 cm of combined fluid.  Last time we were between 11-12 (this was just from me watching the tech measure, no formal presentation of the numbers).

Abdominal Circumference - At 33 weeks the average AC is about 300 mm (or 30 cm).  The bottom of the curve is around 265mm (26.5 cm) so we want to be above 265.

and

Cervix Length:  Anything above 2.5 cm is considered good.  BUT I have always measured well above 4 cm.  The last ultrasound I measured 3.75 so I know its shortening (funneling I believe is the proper term). In part I'm assuming its because baby is bigger so the pressure will somewhat shorten the cervix BUT, last night I started some pretty frequent belly tightenings (all painless but constant starting when I was sitting up and then continuous when I would stand).  The hospital isn't concerned but I do recall when in labour with Livy that my (strong dialating) contractions would stop whenever I sat or laid down right up till I was 7 cm dialated (which is why we almost didn't make it to the hospital and then when there, almost got sent home - my contractions would stop when lying down or sitting).  And, without much for contractions I was 2 cm dialated when I was 1-2 weeks away from delivery date so I know dialation does happen without active labour.  Anyway, this will be on my radar though not sure if they will measure it during this ultrasound or not.

33 weeks

1st Big Milestone Achieved!!!  33 weeks is the gestation the NICU doctors gave me in as far as lung maturity.  So I'm incredibly happy to have reached this milestone, especially in lieu of all that has transpired in the last 3+ weeks.

So far so good today.  Its been a busy morning and I've been trying to catch up on a little sleep but keep getting interrupted.

Tomorrow is looking good for discharge and I've been set up with the Antepartum Home Care Program.   The home care will include a nurse who will come by my new 'home' 2 times a week to do the Non-Stress Test there rather than me having to make a trip to the hospital to do so.  I'm still expected to get here for ultrasound (so not sure how much travel time it saves) but I guess I could consider it less time sitting in a hospital bed.

This home care is intended to address the IUGR as I was earlier told that my Placenta Previa didn't qualify me for home care once I had a bleed.  I guess the growth restriction allows me re-assessment.

I finally had my blood drawn today though I'm not sure how relevant it is, whether it will make a difference or not, I'm assuming not but its more a monitoring type of thing.  I'm not even 100% sure of the purpose behind the blood draw and since I'm sort of coasting and on care and maintenance right now at the hospital, I'm not sure if I'll see a doctor today to ask the question (so I doubt I'll have much more to update as the day goes on).

I'm expecting another visit from Dwayne and Livy today (this will be 3 days in a row - so happy about that).   This morning I was on the phone and Livy actaully talked to me. Up till now she's only listened to when I spoke (or anyone spoke) but today she was either repeating me or said a very special "I love you Mommy" (so wonderful).

As mentioned I said I would share my next milestone today.  I'm sure its easy to guess. 

35 weeks is our next goal.  This is the gestation that is required for Payton to be eligible for ECMO (the heart/lung bypass machine).

Now that the possible use of this machine is looming in our near future I'll give a bit of background on why its so crucial.

ECMO - ExtraCorporeal Membrane Oxygenation

ECMO is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severly diseased or damaged that they can no longer serve their function.

To be honest, we hope that the use of ECMO is NOT in Payton's future.  Essentially only the sickest CDH babies require ECMO.  But, if Payton is that sick, we do want to be in a position to utilize it if necessary.

When Payton is born the biggest concern will be her lung function and her ability to oxygenate her body.  Right now we know that Payton's lung size (Pulmonary Hypoplasia) is favourable.  What we don't know is how well those lung (s) are able to deliver oxygen to her body (Pulmonary Hypertension) and we'll only have an idea of her Pulminary Hypertension once she's born.

Payton is expected to be on a ventilator (normal or oscillating) in order to push her little lungs into delivering the adequate oxygen her body needs.  The vent works to push the oxygen into her lungs, essentially forcibly breathing for her.  Depending on how much pressure is needed to provide adequate oxygen to her lungs, the vent can cause damage to the delicate lung tissue, even more delicate in a new born baby.

If the baby simply isn't able to sustain the impact of the vent, often, the baby simply needs a break to rest and allow the lungs to recover (and perhaps grow just a little bit more).  Thus, ECMO is used to bypass the heart and lungs and instead oxygenate the blood outside the body and return the oxygenated blood to the vital organs.   Often times this may be up to two weeks allowing the lungs to recover and grow with hopefully enough time to work on their own.

There are risks with ECMO and long term side effects, thus, ideally relying on ECMO isn't ideal.  But, in some situations its a life saver.

Of those babies who require ECMO, only 10% survive (from one study I read).  Thus, for that 10% its a crucial survival tool.

Again, we hope that ECMO isn't in Payton's future, but we do hope that her future holds the option to rely on ECMO.  So 35 weeks it is.

32 weeks 6 days

As promised I said I would start updating daily (though today we do have a bit more info to share).

I want to start by thanking those who came to see me today (Megan and her mom) and Daniela who hasn't arrived yet but is expected to arrive in an hour armed with Greek food - mmm, so looking forward to it.

Best of all (not to minimize the other visitors) but I had a surprise visit from Dwayne and Livy.  What a huge surprise it was.  I'm still smiling though the visit did involve a few belly shots/nips by a somewhat overtired little girl.

On another note I again saw a peri today (as he made his rounds through the antepartum ward) and it was our friend (and so far fave peri) Dr. Butler.

Now, I believe I've mentioned this but it seems each time we have a discussion with a doctor, certain topics include differing opinions (ie the previa will correct itself, it won't correct itself).

Today was no exception for differing opinions though I kind of like the latter opinion we recieved today (like an athlete, your only as good as your last game).

We discussed possible early delivery due to the IUGR (since I had a few extra questions since reviewing some things).  Turns out that delivery WON'T depend on baby's growth.  It will depend on her twice a week ultrasounds (next one on Monday).  As long as her doppler scans and fluid remain normal then we'll keep going irrespective of her growth or lack of.

That's a huge comfort as we've dropped so quickly off her growth curve in 2 weeks, it seems likely she'll keep dropping.  So knowing that issues that have remained strong and healthy are the determining factors gives me a bit more confidence that we can coast for a little while now.

We've extended the next goal of 35 weeks to 37 :).

Another discrepency is my possible discharge date.   Yesterday I was told 48 hours after I stopped bleeding (which was Wednesday evening) but in the same conversation I was told Saturday or Sunday (since 48 hrs was Friday, I aimed for the middle and thought Saturday).

Today, Dr. Butler said he would like to see a week here which would be Monday and so he threw out Sunday or Monday.   I said I didn't care as long as we knew with a little bit of notice so we could plan transport.

The nurse came in today and told me its looking like Sunday.

Before signing off I wanted to share a picture Dwayne sent courtesy of Miss Olivia.  She's really into her bum cream (diaper cream) and apparently today she figured 'Baby Nee' needed to have bum cream on.  Apparently Dwayne only left her alone for 1 fraction of a second today and it just happened to be the most crucial second of the day.  The great thing is I don't have to clean it up :)

Three posts in one day - but I had to share

Here's a great little video of how things are going at home.  When Dwayne sent me this clip (thinking it would be good watching while I'm hanging out with no Livy) I knew I needed to add a bit to narrate it a bit better.

I hope you enjoy watching it as much as I enjoyed editing it.

Doctor's Update

The ultrasound looked good, so for now, we're keeping this baby in.

Our next one will be Monday.

At this point I've stopped bleeding and if all stays quiet I could possibly be discharged on Saturday or Sunday.

For now, I'm looking forward to my student massage this morning (students come here to practice their massage techniques on eager and desperate women - possibly because even a bad massage is a good one after being in bed for so many days).

Ultrasound #1 - Doppler and Fluid Check - 32w 5d

So yesterday I laughed, today was the day for tears. 

Its been a hard day for me (probably due to lack of sleep - afterall, these hospital beds are no substitute for a real bed) and sitting here with so much time to think can have detrimental results (having a computer with a direct line to Dr. Google doesn't help either).

Today the fear and panic has settled in. We're back where we were 3.5 years ago, possibly making a decison between bad or worse as to what to do with this pregnancy.  The 1st time around it was the wrong decision (not saying there was a right one, just that the one we chose was the wrong one).

With Payton, up until yesterday it was clear that the safest place for her was in my belly.  Today, that's not so clear.  In fact, being inside me may be the worst thing for her.  But delivering Payton now isn't good either.

Prematurity coupled with a Diaphragmatic Hernia significantly reduces the survival rates.  One study I found shows that survival rates for full term infants with CDH are 73.1%.  Survival for preterm infants (less than 37 weeks) is 53.5%.  That's an almost 20% gap.

If we take that average (knowing Payton's 33 week status is probably a bit on the early side) we've been bumped from 70-80% survial to 50-60% survival (though admittedly the drop wouldn't be linear but its all I have to wrap my analytical thought process around).

Lower survival rates also increases long term disability rates.  Of course the biggest concern is that Payton won't be able to get enough oxygen to her brain and in turn may suffer various affects of brain damage.

Its also likely that the lesser complications (like hearing loss) are more likely (so those who want to be part of our lives better start brushing up on their sign language :)).

We had our 1st of frequent ultrasounds today that only measure amniotic fluid and blood flow (doppler).  No consult with the doctors yet but from what I can see, the amniotic fluid appears normal (good sign) and my previous assessment of the Placenta Previa was incorrect. Its completely overlying the cervix still by a few cm's (apparently I have no idea where the cervix sits relative to the placental).  It hasn't made any positive progress as I previously thought (either that or it keeps moving around to screw with my mind).

The remaining mystery therefore is the blood flow in the cord/placenta.  They especially focused on blood flow around the cervix assuming Paytons possible IUGR is due to the placenta tearing away from the bottom of the uterus during the last couple of bleeds.  

Since we're now dealing with so many factors that at any moment could result in a unscheduled delivery, I promised a few people that I would update daily, even if its just a confirmation of a very mundane and boring day.  That way, if you don't hear from us, it means something has happened (not necessarily birth) but something, even just another bleed as another bleed would send me down to Labour and Delivery for copious hours of monitoring with no computer access for updates. 

I'm hoping that Dwayne will help out on those days since he's managed to perfect the mobile uploads via his phone.

I'll be providing a further update today when we hear what the doctors have to report with our lastest ultrasound.

I spoke too soon

Today is a day that I just had to laugh.  Despite the seriousness of the situation, and that fact that our child's life hangs in balance, I simply don't know what else to do.  So, I laugh. I think if I started to cry, I simply wouldn't stop.

Today one of the MFM doctors (whom I met with yesterday) came in to discuss the pregnancy with me (their rounds as you would call it).

She went over a few things regarding some of the things we discussed yesterday. It doesn't look like my membrane ruptured (water broke) as I first thought as a possiblity since the bleed was watery looking to me (I expressed my concern when I arrived at the hospital).  All good on that front.

We quickly discussed my current hosptial stay, bleed free for 48 hrs and I can leave again (but cautioned that 3 strike rule applies and next bleed I'm here for the duration).  That said, its looking like the duration may not be far in the future.

The ultrasound yesterday suggested that we may be dealing with another complication (seriously folks, I'm not making this up...this is all truely happening to one baby within one pregnancy).

Today's 'soup de jour' is IUGR or InterUterine Growth Restriction.

Now, its not confirmed, simply suspected at this time.  Up till now Payton has been doing well with her growth and one isolated ultrasound measurement isn't enough to raise too much concern.  It could simply be a 'mistake' or we could have fallen on the wrong side of the margin of error or poor positioning of the baby (though one would assume that measurements due to position would error on the side of too big).

Regardless, its too soon to freak out.

To give a bit of background on how they determine IUGR:

They measure the circumference of the abdomen. They measure this because when IUGR presents itself (ie lack of enough nutrients for proper baby growth) the baby's body automatically re-routes what nutrients are available up to the most important place, the head.  So including the measurement of the head wouldn't present an accurate picture.  By the time the head begins to be affected in growth due to IUGR its severe.  After the head its the rest of the body that recieves the nutrients, so measurement of the legs are equally ineffective for comparison.  The abdomen is the 1st body part affected and developmentally restricted due to IUGR.

Now, like me you may say "wait, with CDH wouldn't her abdomen measure small anyway??" Apparently, they do, just a little but properly developed CDH babies hold their own in abdomenal circumference. Payton herself was measuring just fine up till her last growth scan (yesterdays).  Thus, she severely fell off the growth curve with her abdominal circumference thus triggering the IUGR alarm.

Yesterday's measurement put Payton in the 4th percentile for abdominal growth.  Up till then I believe just sat just under the 50th percentile (she was always a couple days behind).  Anything that drops below the 10th percentile is classified as mild IUGR.  Below the 5th percentile its classified as moderate and below the 1 percentile its severe.  So while we still sit at the 4th percentile, we don't know if its inaccurate (and she's higher) or whether she's on her way down to below the 1st percentile and we just caught a window of time where she was in the 4th.

Now, I'm sure your asking what that means in the whole scheme of things (ie management)...because yes, this is another pregnancy complication that isn't overly common.  But, it is another severe complication that requires drastic measures if indeed it is an issue (and not simply an ultrasound mistake). 

As far as management is concerned, we'll have ultrasounds and Non-Stress Tests (NST) 2 times a week.  Since they are unsure what could be causing the restricted growth, they'll measure things that may raise a red flag causing the need for instant delivery. 

These frequent ultrasounds will measure the blood flow in the cord and placenta making sure that the blood is flowing appropriately.  They will also measure the amniotic fluid.   All this time we've been worried about too much fluid, but now with IUGR, too little fluid is a huge concern.

Since they don't know if the suspected IUGR is due to the placenta previa (common with PP since the placenta sits on the bottom of the uterus, where its not supposed to be, and because its much thinner at the bottom, it may not draw enough nutrients to the baby), or the 1st bleed (a partial abruption where the torn away placenta bled but also resulted in not enough nutrients being carried to the baby) OR it could be due to the CDH (baby's internal organs are pretty jarbled thus her kidneys may not be properly working).

On some degree, it doesn't matter the why's, it simply matters with the results.  If one of the frequent ultrasounds shows that the blood flow is affected, or the fluid becomes dangerioulsy low, then they may make a discision to deliver asap.

With the NST - they want to make sure baby's heart is beating strongly (IUGR can affect that and may present itself during a NST where the heartbeat severly drops).

At the 2 week mark from yesterday (when we had the measurements done) they will once again measure Payton's growth.  If she's showing improvement in her growth we'll keep trucking. If indeed its deemed she's being affected by IUGR we likely will deliver at that point (estimated as 34 weeks 3 days). 

Babies who are expressing IUGR (and it goes untreated via delivery) too often end up born still.  Its worth noting that the risk of stillbirth with IUGR will definitely outweigh the risk of death caused by Paytons diaphragmatic hernia thus, for me, its a wake up call as to how precarious a line we may be walking with this new develpment.

I'm hoping if it looks like we need to deliver due to IUGR that the situation isn't too severe and they allow us to get to 35 weeks gestation, since that's the gestation we need to get to in order for Payton to be a candidate for ECMO (especially when dealing with prematurity in conjunction with CDH).

For now we wait and we once again take stock in how lucky we still are.  We still have a baby who has a chance to fight and that's all we're asking for.

Back in the Saddle Again (the Saddle being the Hosptial)

Well, a couple of days of  'no news is good news' and our luck ran out (sort of because we're still pregnant!!).

Today, I was scheduled for an ultrasound, Non Stress Test and a follow up with our MFM team.

I woke at about 5:30am to bleeding.  I called the hospital and (fortunately) was able to simply ride to the hospital like a normal person, as a passenger in a vehicle (not an ambulance).

First off, a huge thank you to Pauline (my flat buddy) for the ride and most importantly for staying with me in the ASS room (Assessment room in Labour and Delivery) so I wouldn't be alone while waiting to find out how 'exciting' our near future was going to be.

We went through much of the same processes as last time we were here only this time the Anesthesiologist came in to introduce herself and explain the proceedure that's to be expected with a c-section (and scarred the crap out of me).

Alas, it looks like I won't see her for a little while yet.

I'm currently checked back to my favourite place (Evergreen ward) and I've settled in with my laptop and expect to be here about as long as I was last time.

The good news is, we did keep our ultrasound today and it looks like the placenta is moving in the right direction.  Another perinatologist mimic'd what my OB said and its possible that the bleeds are simply the placenta tearing away as it pulls up from the cervix.

While we're still classified as placenta previa, it looks like the placenta has moved about 1 cm in the right direction.  Its possible (and looking likely) that in another 2 weeks we may be cleared of the cervix and only be dealing with marginal placenta previa (still a risk of bleeding but less concerning).

So I'm keeping my legs and fingers crossed that things continue to move in the right direction and little Payton stays put for another 4+ weeks.

A few things to update

Today is a mixed bag of things to write about.

Today, one of the CDH babies that we have included in our "Blogs We Love" is expected to arrive tomorrow (or at a minimum in the next day or so).  Baby Sophia is scheduled to arrive tomorrow via induction and will begin her fight against CDH. 

Its worth noting that I 'met' Sophia's mom on a CDH support site.  So while any CDH baby is of particular interest to me, baby Sophia will be the 1st CDH baby I'll be following since we learned about Payton's own defect.
Baby Sophia is only a few days shy of 40 weeks gestation and her LHR (recall below 0.9 is poor and above 1.4 is great) is only 0.38 (though her liver is down).  Thus, its wondeful that she's gotten as close to 40 weeks as considered safely possible therefore increasing her odds to the maximum.  Still, its amazing how well some of these babies do and its been explained again and again that there are so many variables that they can't measure (or tell) until babies are born. So all too often you see little miracles (hopefully like Sophia) do well and babies who have an excellent prognosis not do well.

Regardless, baby Sophia and her family will begin their fight and I encourage anyone reading this to send a prayer, positive vibe, well wishes towards this family.  Like us, the are not only dealing with the fight against CDH but are also dealing with the juggling of uprooting family and relying so much on others to make it work to provide the best survival possible for baby Sophia.

If you want to follow baby Sophia's journey, please click on the link to the right under "Blogs We Love".

On another note, today is the Test of Metal.  Possibly the biggest (and best known) cross country bike race in BC, taking place in Squamish. 

I've participated in the race 3 times.  Dwayne on the other hand, has participated (except for our 1st year) in the race every year since we've lived in Squamish (and a few times before we moved there during his racing days).  Around 1,000 riders, its a race that's exceptional to watch and even more exceptional (nerve wracking) to race.

Dwayne's best performance at the race has been 5th place (overall, not just in his category) and each year he's held strong (even against the new youngsters who have cropped up).  I know it would have been extra special for him to have raced this year, on the year he turned 40.  In part to prove to himself that 40 isn't old...its just another decade. But also, because fitness is so important to him to keep the increasing years at bay.

Alas, Dwayne and Livy are heading to Vancouver to spend the day with me.  Always a very special treat, and even more of a treat since Dwayne has been out of town for the most part over the last 10 days (and is scheduled to be out of town for many more days through July).  So a rare treat to have the whole family together.

I must sign off so that I can shower and get ready for them (est time of arrival is 50 minutes).

Again, please keep baby Sophia and her family in your thoughts.

Just in Time for a Wonderful Birthday Present

Well, the Bug went to sleep after a battle (over an hour to get her sleeping - grrr...apparently her new night time routine has been adjusted) but I managed to get her down and put together a clip of our 3D/4D ultrasound for Daddy's Birthday.
So, here it is:

Happy Birthday Dwayne!!

Today I'm posting a bit earlier than I normally would have if given the choice.  But, I wanted to post because I didn't want to 'run out of time' later today and not post at all...especially since this is an extra special day.

Happy 40th Birthday Dwayne!!

As you can see its an extra special birthday too.  A big milestone that unfortunatly will go relatively uncelebrated by Dwayne as he's out in the field working until tomorrow.

Still, we're going to do what we can to make it special - even if he can't be here to celebrate it with us.

On our list of 'special' events today is a sleep over with Livy.  I'm so excited (but scared at the same time) that I can hardly wait.  I know in the last 2 weeks she's developed some bad habits in part from me being gone, but also in part from those caring for her not being consistent in managing the typical behaviour of an almost 2 year old.

So, tonight will be interesting to see how many tantrums she has and how many time outs she has.  Still, tantrum or not, I'm so excited to just hang out with her.

On another note, late this afternoon we head out for our 3D ultrasound.  Last time around we had to cancel due to my hospital stay.  After cancelling, today was their 1st available time slot and though I could have postponed it another 2 days for when Dwayne gets here, I didn't risk putting it off in the event I ended up back at the hospital.  So 1st come 1st serve.

The good news is we'll get a video of the entire session that we'll be able to share (and birthday boy will be able to see it even though he'll miss it in person).

I expect to put the video up by tomorrow since today may be such a busy day with Livy.

In the meantime here are some pics that Auntie Kayreen, Uncle John and Livy took and sent so they could wish Dwayne (Daddy) a very Happy Birthday.

Good lesson learned in sportsmanship

Tonight has seen the end of a really sad series between Vancouver and Boston.  Not because Vancouver lost, I can accept losing.  Its even sad that the loss was so anticlimatic - I mean, a loss of 2-1 would have made for a much more exciting game.  I remember when Montreal won in '93 I was so upset they won with such a big margin.  Never fun to win like that (though I guess better than losing like that).

What I'm very disappointed in has been the poor sportsmanship shown by both sides.  The Bruins have been poor winners (Tim Thomas, as amazing as a goalie as he is, has shown he's simply not a nice guy.  Too bad because when he plays he's amazing to watch, his behaviour outside of the mask leaves much to be desired.  And retaliation for the comments from Luongo doesn't cut it because if you look at the entire interview where they clipped it, Luongo actually praised Thomas and his goal tending). 

Injuries (from hits with intent to hurt from both teams) leave a poor taste in even the biggest sports fan's mouth.

Then of course there's the incredibly disappointing behaviour of the crowds.  Neither city has handled this well.  Vancouver fans threatened in Boston (even after a Boston win) and now tonight, the riots and damage being done.  And the straw that broke the camel's back for me, Vancouver clad individuals (they don't deserve the right to call themselves fans) beating on a Boston fan. 

So incredibly sad and I for one an not proud of this series, and honestly, I don't think any one from either of these cities should be either. 

That said, it is worth a congratulations to Boston for the win.  They undoubtedly deserved the win base on play (though its worth noting only one player on the team is American - still proud to be Canadian even if I'm not that proud right now as a Canuck fan).

OB Appointment

 I love my OB!!  I love that he's practicable and matter of fact.  Just what I need in a situation created even more confusing by multiple doctor's opinions, differing information and guesses. 

First off its important to point out the hierarchy of my maternal care:

I have a Family doctor who (if my pg were normal) would have followed me for this pregnancy.  Due to the use of heparin and our previous complications, my Family Doc felt it was important to be followed by a OB (someone of course who ONLY deals with preg).  Had I only had the Placental Previa to contend with, I, like many other women, would have simply remained with my OB for the pregnancy and delivery (in other words, my OB has lots of previa experience).

Because of Payton's birth defect, we were then transfered over to BC Women's hospital (the only BC hospital equipt to deliver her) and from there we started seeing a team of perinatologists.

Our immediate concerns with this pregnancy is of course the placental previa and the possible impact that may have on me and timing of delivery.

Since the peri's tend to not oversee patients with previa, I have been recieving a number of different opinions on what to expect.

With today's appointment I was so looking forward to hearing what my OB had to say with previa and his input not only supported much of the research I've done, but it also was delivered in an informed manner - much appreciated by someone who's spent so much time researching.

He said bleeding is common and that its likely I'll have another one BUT (exactly like one article I came across) when its the edge of the placenta covering the cervix, the bleeding often stops and an emergency c-section is less likely (ie. compared to when the middle of the placenta covers the cervix.

He also said that the bleeding may be a good sign in that the placenta is starting to pull away from the cervix. He said its likely (especially if its still complete previa at 32w) that I'll still need a c-section (least of my worries) but that any bleeding at this point will likely NOT result in an emergency one.

I'm on a modified bedrest/light activities and he's agreed its a good comprimise especially since I'm now off the heparin. So mild activity is safer in regards to any potential clotting issues.

He once again stated he'd like to come attend the c-section and asked if I had a date yet. I'm guessing we may set one next week if the previa is still an issue. I thought that was cool  but realized that it probably has nothing to do with me and more the novelty of the situation.  Still, I'll take what I can get.

Playdate

Today was another special treat consisting of a playdate with Livy.  Its amazing how much she's grown in 2 weeks.  She's starting to become a little parrot and repeating full sentences "Livy, do you want to go play in the car" - "Livy, do you want to go play in the car".

One of the things I have that puts a smile on my face is a ring tone we recorded about a month ago when Dwayne was out of town.  It started out with an "I love you Daddy" but then I thought I should record an "I love you Mommy".  Its been on my phone since I've been away from her.

Today when visiting my phone rang a couple of times and she was tickled pink about hearing herself, she even understood what she was saying (and repeated it a few times while here).

So, I figured, while here I may as well get her on video, a much better way for me to see her/hear her when I miss her.

So here's her video (short but ohhh so sweet):

Tomorrow we have an OB appointment so while there won't be much in the way of additional CDH information, I will be asking him questions regarding my previa and what the chances are of a repeat bleed (or whether we can hope to make it to the end without another incident).  After the many conflicting opinions from the doctors at BC Women's I have come to rely on my OB who has the experience of following patients from the beginning to the end (unlike the peri's who 'share' patients so may not have the luxury of consistent patient management).

I'll be sure to update tomorrow.

Meeting with the Surgeon

Today we met with the last of the specialists that will be involved in Payton's care - 1 of  the 4 surgeons that are qualified to do Diaphragmatic Hernia surgery.

The meeting was fairly quick and mostly he answered questions with a little bit of additional information for our general knowledge.

One of the things that resonated with us was his comment on CDH in general.  He said that out of all birth defects a baby can have, Diaphragmatic Hernia has the highest death rate.  Its a stark reminder of how little this condition is understood or appreciated.  As I've mentioned in the past, we breathed a huge sigh of relief when we first heard our baby had a birth defect that it wasn't something 'serious' like a heart defect.  How incredibly wrong we were and our meeting today really confirmed how much we simply don't know in regards to how well Payton will do when she's born.

That said, he did answer some questions we had that will allow us much more insight into what she will (hopefully) be going through once born.

With CDH repair they hope that the hole in the diaphragm is small and they can simply close it up with stitches.  That is the best case scenerio in regards to the hernia repair.  Re-herniation is less likely and the diaphragm then grows with the child, hopefully with no further complications.

Often times the hole in the hernia is quite large and there isn't enough diaphragm present to pull it closed, thus they have to use a patch (our doctor today uses gortex).  The patch is ok, but not ideal for no other reason than its less pliable than skin, thus as the child grows, the patch doesn't and often (40% of the time) re-herniation is likely thus requiring additional surgery as the child gets older.

There's also the risk of Scoliosis.  Its when the spine has a curve to it and it can be caused by a too tight diaphragm.  If a gortex patch is used and there's not enough natural diaphragm left to grow enough to compensate for the missing area, then it can pull on the childs spine causing a curvature in the spine of the child. 

It was confirmed that the surgery (in an ideal situation) will occur on or around day 4-5 after Payton's born.  They have found that waiting till the baby stabilizes with his/her breathing for a few days equates to much better handling of the stress of the surgery.

We've been told that its common (90%) to have to have a blood transfusion (not just for surgery reasons) so we know that likey its in her future.  We have asked about whether we would qualify to donate blood for her but have been told that the time to process the blood would possibly take too long and while its possible, donating blood to her could result in her sometime in the future building up antibodies to our blood therefore not allowing us to donate later (or if she ever needs an organ donor we may eliminate oursevles as a possiblity).

I'm pretty sure I'm missing other points that were discussed but for now this pretty much covers the gist of some of our questions and expectations.

The Argentine Shuffle

Many years ago I went to Argentina to work.  It was an eye opening experience and I learned very quickly how different things ran in other parts of the world.  It taught me patience and to never do business in a country that I'm not fluent in the language (and that being kicked out of a country isn't really that bad).

One of the things we joked about was often how much effort you made just to go back two steps after advancing one.  The Argentine Shuffle we used to call it.

It became a bit of a running joke in our lives at time.  You work so hard to move forward only to realize that your no further ahead (or behind) than you were after all that effort.

That's sort of what I feel like today - that I've done a little jig of the Argentine Shuffle.

After moving over to my sister in law's place yesterday, this morning I made the decision to move back to the location I was in following leaving the hospital.

Last night I closed all the windows in her condo (downtown living is too noisy for a small town person) and I woke up to what I believed to be notable cigarette smell.  I had forgotten what it was like living in a condo building - often smelling scents from other tennants, both good and bad.

As someone not used to it, it was noticable indeed.  I later learned that sister in law only sleeps with her windows open (loves the fresh air and the noises doing bother her) thus its a situation that would in all likelyhood have alluded her.

Thus, I'm back where I started...seemingly a lot of effort only to end up in the same place I started in.

This latest hiccup is just another reminder of how much I'm imposing on others hospitality and kindness.  Even if the fit isn't ideal, I'm so very fortunate that I have others willing to put up with me (warts and all) and I'm so very appreciative of all efforts that have been made to accommodate me.

Its important to also mention friends who have opened their home to me but were considered by the doctors to be too far away (and in a different municipality) from the hospital.  They too have opened their home and have made me feel incredibly welcome (and again, I so appreciate their generousity) even though circumstances have meant that I haven't been able to take advantage of their offers.

So, for everyone who has opened their home (whether I'm there or not), acknolegement and a great big Thank You are the least I can do.

What's for dinner dear?

So today I moved into my sister-in-laws apartment (the strep throat victim).  I'm very fortunate that she lives downtown so well within my limits to the hospital.

To make things even better, she's gone (nothing personal) and the fact that she's gone means that on Monday, when Wilma starts working again, we're going to bring Wilma and Livy down to stay in Vancouver for 3 days/2nights.  So not only am I no longer putting someone out (at this immediate point), I'm going to be able to spend some time with Liv (especially since I hear she's developing some bad habits since I've been gone - biting and pulling hair.  Hurting others is simply not acceptable and we want it to stop asap).

So my recent move has a few upsides.  The downside, is sister-in-law works hard and with 2 dogs doesn't have a lot of time for domestic duties.  Often this includes shopping (bare fridge), cooking or cleaning.  So I had to do a bit of house cleaning (not that I mind, that's not the reason I'm sharing this on today's blog - infact, I'm relieved to be of some help rather than simply a burden).

We hit Costco for some food to stock the fridge and while looking for room I noticed 3 dairy cartons (2 milk, 1 cream) of which 2 expired back in January and one in February - yikes.

Of particular interest was a caserole dish.  I knew there was a chance I wasn't going to like what was inside, but never in a million years did I expect this:

Suffice to say, my sister-in-law needs me - and I need her.  We're pretty much stuck with each other for the next 4 weeks so we may as well get comfortable - sort of like an old married couple.

Canucks!!

I figured we'll be reading back on this blog (and hopefully Payton will too) and thus its important to report on the experience of being right near the stadium with a Canuck's win.

Its great to envision the possiblity of the Canucks winning the Stanley Cup (it would be the 1st time ever) the year that Payton is born.  If all goes well, we'll (well Dwayne) be telling the story about the Canuck's win for years to come.

It was great listening to the crowds and cheering (distally) with them.

Go Canucks Go!!!

Another boring day

Not much to share today. Its just another boring blog day (which personally I like).  On a personal level though, I got to see Livy for a bit today, my second time since I headed to the hospital.

She was shy, so that means she's starting to forget who I am (the one person she doesn't need to be shy with) but I'm hoping to spend the full day with her tomorrow and on Monday, Wilma and Livy are expected to spend 3 full days in Vancouver with me so I'll have 3 full days of her. 

From there we'll have a few days break and then hopefully next Saturday (the day the Test of Metal is scheduled for) Dwayne has committed to a family day.  So he's going to bring Livy and the dogs and we'll head to Spanish banks and hang out on the water.  Sounds glorious.

So, the last week was a tough one for Livy withdrawl but I'm optimistic that the next 2 weeks will be saturated with the little bug.

Our New Normal - for now

Yesterday was a stressful day.  Not for medical reasons, but for emotional/juggling support reasons.

Dwayne and I are learning (and partly reliving) the need to rely on others for support and help.  Its hard.  Its hard to ask for help (especially when we're both in a position where we've asked for help from the other persons family) and when our journey ahead of us has no obvious end in sight, its hard to know when you need the help the most (and when you really need to push those around you to step up) or whether you can simply juggle things yourself and make do (even though the concept of making do for 4 months seems daunting).

Alas, last night when I was lying in bed I realized that this up-rooted limbo stage is for now our new normal.  We simply need to get used to it.

We have seen some wonderful gifts of generousity and without these incredibly selfless gifts we would be forced into a postion where we would be putting Payton's life in jeopardy.  Its a delicate balance of not wanting to impose but yet knowing we're imposing and trying to find a happy medium where we don't feel like we have to beg for the help that we do truely need (but at times feel too uncomfortable to ask for).

Alas, we'll get it (I hope) because we need to get it.  We can't do this alone - we need to rely on others and for some small steps in our journey, we need to ask others take the burden - even if its uncomfortable for us to do so.

For now, I'm going to leave you with a photo of where I'm staying.  I have been blessed by those around me who have made me feel so incredibly welcome despite knowing I'm uprooting their lives.  Dwayne of course has his own challenges and I've been trying to help, but on some level, he needs to resign himself to the same fate as I have - begging :).

So a wonderful suggestion to anyone who's reading.  If you know someone going through a hard time, don't say to them "let me know if you need anything" (because guarenteed they do, but its simply too hard to ask) instead say "what can I do for you" and if the answer's nothing...perhaps an ear to listen to, a box of chocolates (I like truffles), a word of support or a home cooked meal, without them asking. Guarenteed it would go along way and would be the type of kindness never forgotten. 

You'd be surprised by how many are there who do need something but just don't feel comfortable enough to ask for it.

Jail Break

So, I made it out of the hospital.  Almost didn't, not because of any medical reason but because my immediate housing plans feel through due to strep throat (or viral infection not sure which).

Regardless, I started phoning everyone I know frantically looking for a free bed (even though the hospital was perfectly happy to keep me).

So I'm free. 1st thing on the list was a pedicure to trim down my out of control toe nails (fully approved by the docs).

And like any escaped convict, the next stop was Starbucks :).

So today has been a bit of catch up work wise as I'm finally able to sign in to my work server.  No emergencies but still, stuff that needs to be done.

This morning my sister was in town and they picked me up for a Costco trip.  Since I was told walking through the Vancouver Aquarium was too much walking I knew Costco would be too.  Fortunately, Costco (from prior experience) has wheelchairs so as long as I had someone to push me I was good to go.

Even better when we got there and they didn't have wheelchairs, but rather motorized carts/chairs (not sure what they're called) that I could put stuff in the basket and propel myself around.  Down side is they travel SOOOO SLOOOWWW.  Still, the back up beeper was fun and made for an interesting Costco trip.  Being so close it may become my regular activity.

Its been a number of days since I've seen Livy (almost a week now and I've seen her for an hour) and its been hard.  I never knew it could be this hard.  I've never needed/wanted a break from her (though I have been away for a few days due to work) and thus I have a hard time finding a silver lining in it all OTHER than the fact that this sacrifice is for our next little bundle.

I know Dwayne's taken extended leaves for work from home and while his usually has a 10 day'ish end in sight (not 8 weeks) I'm starting to realize how hard it has been for him in the past.

I'm hoping Saturday will be a big day with Livy.  I'm committed to hanging with her and as such, we'll tackle the Aquarium and find a wheelchair if need be.  Or, I'll go, and sit and let her explore and come back to visit me on my perch over and over...that way I can rest and see her throughout the day - sounds like a wonderful plan to me :).

NICU & Ultrasound details

So our last day in the hospital consisted of both a full measurement ultrasound, followed by a meeting with the NICU.

Recall that the NICU doctors wanted to know the size of the baby before speaking with us so we had to wait for the ultrasound 1st, then wait for the NICU docs.

The ultrasound went well.  Payton's fluid in her chest seems to have disappeared (or is really small) and that may well be because the lungs have grown enough to fill any unfilled voids.  It could also mean more abdominal contents in her chest but I like the 1st reason better.

As previously mentioned the placenta still lies over the cervix so obvioulsy our option to go back home was not there.  To be honest, I could go it I wanted to, but the consequences (even if unlikely) just aren't worth it and its not just my life I'm gambling with so we make the sacrifices to stay close and inconvinience as many people as we know.

Payton is growing well.  Not as well as Olivia or the boys did (she's a few days behind her gestation) but a few days keeps her well within in the normal range and there is absolutely NO issue there.

We were told she's approximately 3.5 lbs so we're pretty happy about that (and expected to gain about a 1/2 lb a week from here on in).

Our meeting with the NICU didn't provide us with the crystal ball I was hoping (not expecting but hoping) it would.  But it did answer a lot of unknowns in relation to the unknown.

My questions weren't so much "what will happen" because we know CDH babies are so incredibly unpredictable, but rather they were "will we know if the worst happens and we need to let go? or if bad things happen, that we need to keep fighting??"  That answer was mostly yes.  Though there is a grey area (and its the grey area that scares me), that grey area is small.  We will likely know either way whether Payton has the fight in her to make it through, or whether we're fighting a losing battle.  For that we are so very greatful.

While the two NICU docs weren't quite as optimistic as the first one we saw back at 24weeks, we were happy we got to meet them as all involved in the NICU will be part of Payton's care and when we go there the 1st time with her, it will be nice to have met some of the team ahead of time.

The only negative I took away from that meeting was from the female NICU doc.  And while I know she meant well with her comment and concern, it wasn't necessarily what I wanted to hear.

She told me to take off the scientific hat and simply wear my mother hat.  If only she knew how wrong that statement is.  Doesn't she get that the only thing I have in my control is knowledge and questions?  Doesn't she know that part of my concept of being a mother is being prepared and making sure I'm the best I can be to tackle any situation that may or may not be presented to us in regards to baby Payton's care?

In my mind, a mother doesn't idly sit by and let others care for her child.  Even if she knows that for a short while it needs to be others who do care for her child, she doesn't just sit back and twiddle her thumbs, especially when, if worst comes to worst, I'm going to be 1/2 a decision of a very crucial one - the consequences are mine, even if the glory of the fight isn't. 

So in order to wear any consequences comfortably, I need to be prepared.  I need to know, that when Payton needs me the most, I'll be ready for her.

New Video for Mommy - Hallo Ben

This video is for Mommy as she misses the little Bug.

j

A few Hiccups in the Road to being Released

So today is calendar day 5 in the hospital.  If you had told me on Thursday I would have been here till Tuesday (tomorrow) I probably would have cried.  I guess its a good thing then that things have unfolded slowly, without too much warning.

As of this morning today was looking like a 70% chance of going 'home' (and when I say home, I mean leaving the hospital).  There was (in my mind anyway) even a good chance I may get to go home to Squamish (recall I was hopeful that our previa had cleared).

So finally around 11:30 am they finally got me down for an ultrasound.  My mom was down today visiting with me so that was good timing.  We expected our scheduled ultrasound (tomorrow) to be bumped up a day and the baby would go through the typical gauntlet of measurements so that we could avoid another ultrasound tomorrow (because we expected to be discharged to day and it would save a trip).

When we met with the ultrasound technician she mentioned "this will be a quick one since we're only measuring fluid".   Huh??  Yes, I wondered what fluid had to do with my bleed and previa.  But hey, excess fluid can be a concern and maybe there's something I don't know about that needs addressing.

So when lying there we told the technician that we were most curious about the placenta since it would determine whether we got to leave Vancouver or not (not just the hospital).  She did a quick look and said, nope, placenta's still there on the cervix.  ***sigh***

Then a quick ultrasound of the fluid (all ok and measuring EXACTLY 30 weeks, 2 days - can't get more exact than that).  The technician was wonderful in showing us a foot (big like Livy's), a hand, a clef chin (yes that worries me), her face and her little nose.

The poor unsuspecting technician didn't know about the diaphragmatic hernia and had to diplomatically ask if there were any other pregnancy complications currently under review - she was relieved knowing we already knew about the diaphragmatic hernia.

Alas, when we came back to my room (and after a walk around the hospital) the MFM doctor came to talk to us explaining that there had been a hiccup in putting the request in for a complete ultrasound for today (allowing us to skip and cancel tomorrow's).  The request to cancel tomorrow's ultrasound was followed, but the other half wasn't.  Thus, we waited the rest of the afternoon hoping to be squeezed in again only to learn that we have to hang tight one more day for tomorrow (and we don't get our old scheduled appointment, nope, we're being squeezed in again though I'm now considered a rush in order to free up a bed - so good news there).

Thus, the previa is still there.  Its possible that it may now but up to 8 weeks of not seeing home - which is ok, not the end of the world, just surreal.

On another note, we're still waiting to see the NICU doc in regards to questions about Payton and what we can expect if she's delivered too early.  When can we start to breath a sigh of relief, how will she be managed differently or how can we expect her to handle prematurity in addition to the CDH.

We put the request in a few days ago but unknown to us, they NICU have been waiting on ultrasound measurements of the baby to get an idea of how much she weights as that will have a big impact on how she can be treated.

So another night, another chance to read all about my adventures here as I sit in boredom typing away.  If I start describing wall paper patterns you know I'm near my breaking point.

To Much Info (TMI) Blog Entry

You can't say I didn't warn you ahead of time (about what you are about to read) and for the record, this part of our journey is pretty centred around pregnancy and childbirth, so there are going to be some things written (because they do have such an impact) that may not be suited for dinner conversations.   So if you have an adversion to stories containing TMI, then I recommend you skip today's post.

Last night (around 10 pm) I passed a fairly good sized clot.  It was circular (not sure if it was spherical) but bigger than a toonie (a reference possibly only appreciated by our CDN readers) but smaller than a golf ball.

Definitely not a normal occurrance in pregnancy (unless I've alread delivered) but in this instance, I'm taking it as a good sign for 2 reasons (in my usual non-medical opinion).

The 1st reason being, ever since the fresh bleed on Thursday night I've been passing older blood, sometimes in small pockets, other times a bit more.  Certainly not the amount that I passed Thursday night, but enough that I was still actively bleeding (though the blood wasn't freshly pouring blood like Thursday night).  Often, when the uterus has a foreign object in it, it will continue to bleed (and cramp) in order to push out those foreign objects.  While my (very well behaved) uterus wasn't cramping, it definitely was still bleeding (I believe) trying to push out that foreign object (our toonie sized clot).  Since passing that clot the bleeding seems to have slowed and I'm hopeful it may soon stop all together (mind you I have basically been sleeping since then so not much time to test my theory). 

The 2nd reason (and most promising in my once again non medical opinion) is that I passed a pretty good size clot.  It could be that the placenta is still overlying the cervix and this clot originated between the placenta and cervix, but I'm optimistic that passing this size of a clot actually means that the placenta has moved out of the way of the cervix, thereby allowing this little (or not so little in clot land) object free and clear exit from my uterus.

I'm still hopeful that the initial bleed on Thursday was simply the placenta 'tearing' away from the cervix.  The Maternal Fetal Medicine doctor on Saturday night said it was unlikely (since I was still bleeding) but I'm going with option B (or maybe its option C or D) either way, I'm thinking happy thoughts and allowing myself wishful thinking that the previa has cleared and I may get the green light to return home (rather than having to hang out in the city).

Ohh, to sleep in my own bed again with the Little Bug curled up in my arms - what a present that would be.

Mundane Hospital Life

Yesterday I had a rare and very special treat.  Dwayne (and uncle Mike) brought Livy by while they were in town. 

She was sufficiently tired that she was calm and just curled up beside me with her head against me repeating "Mommy" over and over.  It was wonderful and so bittersweet all at the same time.  I couldn't get enough of her.  They visited for about an hour and when it was time to go Dwayne picked her up, where she curled into his chest and went to leave the room.  Last second she turned to me and said "Mommy, come??".  We had to tell her no, Mommy had to stay and then she started to cry.

She's a trooper, we were able to distract her pretty quickly but even now, thinking about how much I miss her, and the fact that she misses me and doesn't understand why is hard and it breaks my heart to even think for a second that she's hurting.

I learned today that she had a hard night last night, waking up frequently crying so maybe the visit (or more so the goodbye) was harder on her than we thought.

Still, I wouldn't trade that hour yesterday for anything in the world.

Today, we have a game plan.

I'm still seeing just a bit of blood but its eased up enough that its not a real concern. 

We have a scheduled ultrasound for Tuesday but they're going to see if it can be pushed up to tomorrow.

In addition to that, they've lifted my Level 2 bedrest to Level 3 allowing me a bit more activity.  They said if all goes well with increased activity (ie no more bleeding) and things look good with the ultrasound I can check out of the hospital.

But, I will be moving to Vancouver just a bit earlier (upon hospital check out) - either until the placental previa clears up (still a possiblity) or till I deliver.  Which ever comes 1st.

Essentially, I could go back to Squamish but the Peri said that once you bleed with placental previa, until it moves away from the cervix, bleeding tends to repeat.  Since there is such a high risk of hemmoraging with previa related bleeding, being in Squamish may result in an emergency c-section, in a facility that's not designed to do c-sections, in order to get baby out and clamp off the embilical cord (the only way to stop a hemmoraging placenta).  If hemmoraging occurs, there wouldn't be enough time to get to an equipted hopsital - even via air.

Delivering Payton in Squamish (even full term) is about as bad as it can get.  With the very basic and minimal ventilation support, Payton's survival rate would severaly drop - deliverying as early as 30 weeks (or anytime before 37) would be a death sentence for her.  So move it is.

Dwayne's sister, Deanna, has graciously allowed me to stay with her (at least until we start our Easter Seals on July 9th) and I have to say this is a real testament to her resolve because she's scheduled to move at the end of the month.  The good news is she now has help...with me being an added inconvinience we'll definitely be doing all we can to minimize any negative impact my staying with her will have.

Hopefully, if the previa isn't seen to have improved on tomorrow's/Tuesday's ultrasound, it will have within a week or so and I can move back home with peace of mind.

Its too bad though, staying with Deanna that alcohol is out.  It would have made for a much quicker, funner time if we had the option to crack a few open each night to handle each others company.

So there it is - another mundane day in the hospital but with a goal/plan and a little bit of hope that things will smooth out in the next couple of weeks.

That said, while missing Olivia after her visit last night I was flipping through my videos/pictures of her - missing her.

Here are some pictures we took after going to her cousin, Kurtis', graduation celebration.  Livy was all decked out so we had to take a few pics.  I've posted a few because its such a hoot to see how her little mind thinks (and I know Grandma will love seeing a few more pictures of the Little Bug).

Just seeing these puts a huge smile on my face :)  We really are so incredibly lucky.

Blogs we love

As some have notice I have begun incorporating CDH blog links to our own blog.    You'll notice that for now, these blogs heavily focus on CDH and though CDH is really only part of our Journey so far, it is currently a huge part and since I only learned to link blogs a few weeks ago, for now its the only thing I'm focusing on for links.

That's not to say that we don't love other blogs (un CDH related) and in time (when Dwayne learns how to do this) I'm confident you'll start to see other topics appear on our blog.

I've tried to keep the CDH blogs to ones that are a bit more relevent to our story (with an exception of baby Mattiaus - he's near and dear to my heart being one of the 1st CDH babies I learned about, very honoured that his mother was willing to share his story with us and offer us so much hope for Payton's future). 

Otherwise, we've tried to confine it to babies that are still in utero or babies that are fighting in the NICU.  It allows me to focus on other's journey's but still remain in the realm of what is consuming me, the latter part of my pregnancy (as we officially hit our 30 weeks and beyond today!!!), delivery and the looming and very intimidating NICU.  There are so many amazing CDH stories out there (and so much heartache) and its important to know, that despite the small list of stories on our blog, our list is just a small reflection of endless hope, success, triumph over the odds, heartwrenching loss and love. 

Thus, for those who are reading and are interested in learning about other scenerios (because each CDH baby/pregnancy is so very different) its a great, easy way at a click to read about others (and hopefully lend any support you can to those struggling whether its positive vibes, prayers, thoughts, or words of support).

Its also a great way to get an idea of what we have in store for us (for those who are interested in Payton on a more personal level).

Just Keep Swimming

Have you ever had a theme song for a particular moment in life??  Well today, this is mine.  Though admittedly its not much of a song, and the lyrics are just a bit monotonous it does rise to the occassion as being both appropriate and about as boring as I would like the situation to refect.

Poor little fish Dora (from the movie Finding Nemo).  Swimming in oblivion but ohh what wonderful oblivion that is that I too would like to have amnesia for just 7-8 more weeks only to come to my senses just in time to reap the rewards - the safe and LATE delivery of baby Payton.

Today's going to be 1 part whine (and only a short one I promise) and 2-3 parts pg update.

I'm still at BC's Women's hospital.  Today is day 3 on the calendar (but still less than 48 hours) and I'm not 100% sure what the goal is for my stay and the anticipated discharge.  I do know that they want to make sure that this bleeding episode is finished. 

'They' know (with placental previa or not) that another bleeding episode is possible (and with the PP probable) and I believe it will be one of those "cross that bridge when we get there" but in the short term (a few days) we do what we can to tackle the problem close at hand.  One step at a time.

So for the record, this bleeding episode seems to have finished.  My belly remains tender but I'm confident that its because of the newly acquired position I've been forced into - bedrest. 

For the record, bedrest is hard. Physically its painful both on the buttocks and my sides/back which then radiates into my belly.  The best thing for our bodies is movement and with the lack of movement I can start to feel things tighten and seize up.

So back to my 1st hurdle - the recent bleeding episode.  There's been talk of me having an ultrasound.  Talk by the nurses, not yet by the doctors. So in my (very non medical) opinion there are a few options that may be staring us in the face and without an ultrasound to prove/disprove it, for now its just a best guess estimate.

1. I still have complete Placental Previa and the recent bleeding episode is from that, and subsequent bleeding episodes are likely.  The bleed was from the uterus streching so much at this crucial point in the pregnancy (when the bottom of the uterus stretches so much).  The PP is still there and another episode is likely.

2.  I still have complete Placental Previa and my cervix is starting to change as the pregnancy progresses.  This is something I knew to be aware of, but was hoping that it wouldn't be an issue until at least 36 weeks or so.  Again, as the cervix continues to change (and the PP continues to overlie it) another bleeding episode is likely.

3. I do not have complete Placental Previa and the bleed is from another part of the uterus (still undergoing tons of stretching) where the placenta has pulled away a bit.  Another bleeding episode is likely.  The reason I assume (if bleeding is from another part of the placenta) that my PP is only partial (and not complete) is because the blood would have to have a means of escaping the uterus.  With complete PP it would be trapped in the uterus, so there must be an opening where the placenta isn't covering the cervix which is allowing blood out.  Again, not complete PP (which is an improvement) but still, another bleeding episode possible as the uterus contines to grow.

4.  I did have complete Placental Previa and the bleed is from the uterus expanding enough that it has pulled the lobe of placental off the cervix (thus the bleeding) and the placenta no longer fully covers the cervix.  Another bleeding episode possible, but the risk is severly diminished (I like this option).

For what its worth, in my non medical opinion, I'm not sure if knowledge of which possible scenerio it is would matter in the big picture.  The placenta is still sure to be low lying thus still a good probability of further bleeding so our diligence still remains.  Management of the pregnancy may not change no matter where we sit with the placenta's position.  Thus, an ultrasound may be simply redundant (especially since I'm scheduled to have one on Tuesday anyway and they'll know a lot more then after giving things just a few more days to settle).

An earlier ultrasound may give me peace of mind a few days early, or allow me to continue being ever viligent (and stressed) for another 3 days (probably not their biggest concern so my feelings are irrelevant).  OR, (and this is where I worry) they are planning on keeping me here till Tueday's scheduled ultrasound - yikes.

Still, our trip here has had some useful medical interactions in the event that we do have another bleeding episode, the next being a bit more severe than this one.

The evening I arrived at BC Women's, they gave me a shot of steriods (betamethasone) the help mature Payton's lungs in the (UNLIKELY right??) event that she is born prematurely.  Typically 4 days after the administration of the 1st injection (a total of 2 injections 24 hrs apart) is when you start to see maximum benefits of the steriods and studies show that these benefits last up to 2 weeks.

Studies also suggest that steriods after 34 weeks aren't effective so we're right in the right ball park to utilize these steriods in the unlikley (right??) event that Payton arrives too early.  While the steriods certainly won't cure her lung problem, it would definitly be an improvement on the lungs she does have compared to if we didn't get the steriods.

The other upside of us being here is we're now going to be a familar face :).  We've started what will (hopefully) be many days (meaning Payton will survive) at BC Women's & Childrens and what better time to start endearing the hospital staff with my wit and charms then now, when stress levels aren't too high and I'm not having to focus on other tasks at hand.  It also allows us to be better known for later, when delivery becomes more likely so that we can be a bit more streamlined in the process (both in Squamish and here).

In Squamish, where we initiated our medical journey, it was a bit like pulling teeth trying to get the nurses to understand the dire need to get me processed and down to Women's hospital.  CDH (even spelling it out 'Diaphragmatic Hernia') doesn't compute with a lot of people, even medical ones, and it wasn't until they were on the phone with the peri from Women's that they started to get their butts in gear to get me transported.  Apparently a "we need her here asap" from a Peri is enough to get the ball rolling and there was talk about an air transport but I think the fact that the bleeding had already slowed was enough to justify the ground transport with sirens blaring.

I would have been happy (stressed but happy) to have by-passed Squamish's hospital all together and just driven down, but we were given explicite instructions from Women's hospital to NOT do that - many warnings in fact. 

So alas, we went the proper channels, knowing that there would be a few hiccups in the road and just happy and relieve that it appears like this experience has allowed for more of a dry run.

The other upside is that I may have found a good fit doctor in Squamish.  A husband and wife set of doctors who told us that IVF babies are near and dear to their hearts and I was invited (hernia and all) to look into utilizing them as a family doctor.  As much as I love my family doctor in Vancouver, with Payton's future and medical reliance uncertain, its clear we need a family doctor close to home and one that (if we end up in the ER in Squamish) knows her history (and her records are local) instead of the blank stares of the unknown severity that CDH too often brings.

Alas, many positives to this recent event though I have to admit, I'm at the point where I want/need to come home. 

Here's my whine:

I miss Olivia.  I have banned her from the hospital this time around because we're at such a crucial stage of wanting to keep Payton safe, and lets face it, Olivia is rough on my belly.  Her precious little mind has no concept of how fragile this pregnancy is (both the CDH and PP) and when she tries to kneed my belly (hey, maybe she'll be a baker growing up) because its fun and it feels neat, she has no idea that its not a good thing.  At this point, I feel its important to let my belly rest as much as possible to allow any tears to heal properly before they're subjected to her strong little arms again (even being as diligent as possible she has the ability to catch me off guard, kneeding away).

I can't envision Olivia in the hospital NOT crawling on me..so we're treating it as if Mommy has taken a few days out of town (true) where we're not accessible to each other (not so true).  Still, I miss her and I've known ever since we learned about CDH, that Olivia was going to be my emotional lifeline in many of the struggles we're facing.  Not having access to that lifeline is tough - such a precious little girl to have so much power over making me feel wonderful.

So, in a nut shell, here I sit, at 4:45 am (I actually got a decent sleep last night) wondering if I'll be checking out today, or if today will be another repeat of yesterday, just hanging around waiting.  Waiting for doctors who have no intention (because there is no need) of doing anything, waiting for more bleeding, or waiting for the mundane to happen (or not happen??).

So we do what we tell ourselves to do:  "Just keep swimming...".

Smooth Sailing

I got fed!!!!

Sounds like a minor thing but that tells me that a c-section is NOT in our immediate future.

We will hang out in the hospital for a few days taking it easy but we're hopeful that there has been no major abruption of the placenta (and all signs say no) and that this will be a thing of the past and just a dramatic excuse to ride in the truck with the big siren and flashing lights. Livy will be solo jealous when I tell her mommy got to ride in the ambulance.

Room with a view

Ok, so there is no "view" because there is no window, BUT it is a change of scenery.

Last night after hoisting Livy out of the bath I had a bleeding episode due to the placental previa. After a few frantic calls to a number of people (no answer) I started to worry as I had a naked 1 year old running around free range while I sat on the throne wondering what my next move would be.

Rest assured one of our back up plans did answer and came to the rescue right about the time that everyone else arrived to save the day.

After a quick stop at our local hospital Payton and I got to ride in style with lights and sirens blazing to BC Women's hospital.

After a few checks to see if baby is ok and putting me on an IV saline drip I'm happy to say that things (bleeding) has calmed down to an almost non existent faint roar and now it's just the risk of dying from uncomfortable bedsores and boredom (since there are so many more hours in a day when you can't sleep.

Alas, i'm semi prepped for a possible c-section with no fluids or foods and baby Payton has has steroids for her lung(s) (and monitoring of her heart every 2 hours).

Not sure how long we'll be here (not long I hope since I have a pedicure booked for Tuesday) but hoping all goes well till at least 32weeks (the so far earliest CDH survival story I've found).

When given the chance I'll try to get our mini video of our adventure racing to get here up. Warning though, I look a bit rough so don't look too closely at me :).