Merry Christmas

And boy is it a merry one...for us anyway.

Which brings me to one of the reasons that today (a few days after Christmas) that I decided to finaly post.

Ever since bringing Payton home its been an incredible ride.  Its been so easy to forget what we faced, what we experienced because Payton is so stinking healthy.  She's gaining weight like a champ (moved from the 25th precentile for weight and height in Oct to the 85th percentile in December) and breathing and eating like a normal baby.  Even her hearing seems to be better since we've been working to talk to her a lot, have been taking her to the odd chiropractic appointment (which is touted to helping clear fluid from ears).

Even when I look at her scar its so hard to believe that this defect was so potentially devastating.  I find that I get complacent in my expectations of her and both girls slip into that 'ho hum' of everday life.  But I don't want the ho hum.  I want the appreciation, the moments, the wonder that is our lives and our children to always be there front and centre in my mind and heart.

I want to never under appreciate what we have been given especially in lieu of what we have lost.

Part in parcel is also keeping in our hearts those precious babies that have been so instrumental to our fight with CDH, those precious babies who fought along side of Payton though they lost their battle.  Leaving so many tears in their wake.  Remembering them, remembering our boys, helps me cherish and appreciate our girls.  If even for a second our experiences will allow another parent to hold their child just a little closer, to remind them of how lucky they are, then it makes my writing her worth it.

This Christmas this is what I did.  I appreciated my girls.  I appreciated my husband.  I appreciated my family.  I soaked up every moment of it and am going to cut this blog entry short because I still have a bit more soaking up to do this evening before we put the bug to sleep (its Christmas holidays so bed time is much more flexible here).

In signing here is a photo of us on Christmas morning in our holiday pj's:

A moment to remember

I sit here in Toronto and can't help but miss my girls (and Dwayne).  I love my new job, but like all other issues in my life since June, I'm resentful for anything that takes me away from them. 

But, because I know that being away from them keeps my time with them so incredibly precious, I allow for the distractions and committments... I try to enjoy each moment of those distractions to their fullest in their own way (knowing they pale in comparison to my family) but moments like this, the thoughts of the girls seep into my mind and I miss them dearly.

One thing  that keeps replaying over and over is the feeling both physically and emotionally of Payton when she wakes in the night to feed.  Honestly, while most mothers dread that late night feeding and are looking forward to a full night sleep, its my absolute favourite moment.  The moment when she's full up and I put her to my shoulder to pat her till she burps.  Her little body goes limp against my shoulder and she almosts melts into my arms...absolutely trusting me to hold her close as she drifts back into a deep sleep.  Knowing that I'm missing 2 nights of that causes me to tear up.

Livy too...I'm still a bit giddy that she wakes the odd night needing her mommy to come cuddle with her to put her back to sleep.  She's still facinated with my belly button (and she more often than not digs into it with her finger nail) but its her blankie right now.  A comfort to her and from what I can tell, I'm the only one who provides her that comfort (even if its because its all soft and squishy due to child birth).

I miss my babies and I'm very fortunate that I can capture this feeling (even just a little bit) on here so that one day, when they physically grow out of that baby status, I hope that reading this brings back that feeling I am right now missing and cherishing so much.

An update just because

Our house is crazy right now.  I can't think of how much more crazy we could make it.  Interestingly enough, its working and to be honest, I think Wilma is the glue that keeps it all together.

Two weeks ago I started a new job.  Its full time and I'm back to commuting into the city.  Not unlike the days I spent driving to and from the NICU, only this time its not to see a beautiful little baby.

So far I love the work and the company I'm working for and I know because I love it, that it will be worth it (ie the time away from my babies).

Livy continues to grow like a weed and as of yesterday she's already added 1 cm to her height from November 7th.    She's been bad and touched Opie again and thus, Opie took a bit of a break.

Fortunately, on Sunday we saw Santa (from afar) and Livy asked if he would give Opie her Christmas magic back.  On Monday we recieved a letter in the mail from Santa (no joking):

Opie then returned the next day and Livy has been behaving ever since.

On Sunday Dwayne left town for a week to London.  So many years I've wanted to travel and he chooses the 2nd week I go back to work full time with two small kids at home.  Yup, chaos is our life.

Yesterday the girls, Wilma and I decorated the Christmas tree and Monday we did our lights outside.  We'll wait till Dwayne comes home before we add our special ornaments.  For now the standard bulbs will have to do.

As for Payton, she's continuing to grow well though on Saturday we hit the ER in Squamish when she puked up some blood.  It was old blood and moslty mucusy bile mixed with milk, but it was a forceful puke with a lot of heaving and chocking so certainly not normal. 

Saturday also saw Payton roll over for the 1st (and 2nd and 3rd) time from her front to her back. I'm not sure if she's been doing it more often but we're pretty pleased with her progress.

For now here are some cute pictures of the girls.  We hope to actually sit on Santa's lap this weekend so hopefully there will be more in the near future.

Its beginning to look a lot like Christmas...

At least on our kitchen table anyway!

Opie got up to some serious play last night when she convinced Dinosaur Bob to come play in the snow.  The problem of course is that there is no snow inside.  So Bob and Opie improvised:

A snow man, a snow angel and best of all...A SNOW BALL FIGHT!!!

Here's a picture of what it looked like from Opie's point of view:

Livy has been great since Santa sent Opie back to us in that she hasn't touched Opie at all (the rest of the characters are not so safe and she quickly grabbed up as many snowballs as she could fit into her hands. I did clean a bit of it up (careful to leave Opie alone) and when I threw the Snowman in the garbage Livy promptly told me I couldn't do that and she fished him out (Dwayne made him so he'll be pleased).

Yesterday was a less stellar day for Opie and she only managed to get out a few mega blocks to play with. 

PS - yes our Christmas tree is up (though not decorated).  I'm gone this weekend and Dwayne is gone the next 2 and I need his help, so last weekend we made an effort to bring it up while there were 2 parents available and the time to do so.  Rest assured she won't be decorated till Dec.

Opie returns...

We had a couple of interesting (albiet photoless) days with Opie.  On day 2 in our house Livy touched Opie and Opie lost her Christmas magic.  She went back to the North Pole to Santa where she had to stay because without Christmas magic, she couldn't come back to watch over Livy and Payton.  So it was looking like we wouldn't have a Christmas elf this year. 

Fortunately, Livy and I wrote a letter to Santa asking if he could give Opie back her Christmas magic and Livy vowed to not touch Opie again.

The next morning (after a day hiatus) Opie returned with a little note to Olivia (and Payton) that Santa was giving us one more try. 

This morning we woke to Opie here:

Like Grandpa Dave Opie likes her solitare...but we also learned that Opie also likes to cheat...so there will be no playing Poker with her (we figure we now have a mulligan since Opie won't want us reporting this back to Santa).

Livy has been so good by not touching Opie and this morning when she saw Opie playing cards she wanted to play cards with her.  Knowing she can't touch Opie she settled on playing cards beside her:



Look who's here to visit

Our elf from Santa has finally arrived.  This is the 1st year that the elf has made a debut and we're very excited to welcome her into our home as she watches both girls to make sure they are on their best behaviour for Santa and Christmas.

We woke yesterday morning to our new house guest as she made her way into our home via the fireplace. 

From there we tossed around a few names: Shimmy, Smokey...but we finally settled on Opie.

Its pronounced O-P (as in O for Olivia and P for Payton).

Opie has been well recieved by Olivia and we're looking forward to the antics that Opie will come up with over the next 5 weeks.

Drumroll please...

First off I want to say "Thank you" for the support and words that I have recieved over this.  Words of encouragement, positive thinking, experience...the works.  When times are tough its just nice knowing people care and often that's enough to get me through the day.

On another note, I want to emphasis a few things. 

#1.  This CDH thing sucks and I'm pissed off for Payton's sake that we ever heard about it.  I'm pissed off that she will have a scar (3 to be exact) on her forever marking this horrible defect.  I'm pissed off that for the first 8 weeks of her life her primary caregivers were virtual strangers.  I'm pissed off that I didn't get to choose her first (or second, or third) haircut.  I'm pissed off that she had to cry and look at the people around her for help when she went on the vent, on the cpap, when they drained her infected incision, every time they placed an IV, took blood, placed a PICC line and no one was able to help her because it was in her best interest that they didn't. I'm pissed off when she grimaces due to reflux, when she has stomach pains and I don't know if its 'normal' or CDH related.  I want to take it all away and give her normal and it pisses me off that normal will forever be redefined for her.

#2.  I'm incredibly thankful for the fact that I get to hold my daughter in my arms, thankful that her stay in the hospital was never frought with life teetering issues and that she kicked CDH's butt in the breathing department. I'm thankful that I get to watch her breath with no problems.I'm thankful for a primary nurse who took to heart her roll as Payton's advocate and not only cared for her but got her out of there faster than if we didn't have her as a Primary.  I'm thankful that I get to breastfeed Payton as much or as little as we want and that she's gaining weight like a champ on a totally oral diet. I'm thankful that she's tube and medication free. I'm thankful that our 3.5 month old is fitting into 6 month clothes, thankful that Christmas this year will see presents for two little girls under the tree, I'm thankful for the fact that Payton's hips turned out to be normal. I'm thankful for so much and not a day, hour or moment goes by that I don't look at her little face and am incredibly grateful for how lucky we truely are....but I'm still pissed all at the same time.

So after saying all the above I just want to say that in keeping with the theme I'm very pissed to say that Payton hasn't caught a break in the hearing department.  She has some hearing loss.  How much in a long term sense we don't know and monitoring her will be key to ensure that we catch it if it continues to deteriorate.

At this point this is what we do know.

She has fluid in her ears.  It could be that its responsible for the hearing loss but the audiologist doctor did give us a pep talk about her loss in the long term sense, letting us know that it 'shouldn't' affect her verbal development as long as we take steps to cater to her issue.

His description of her loss is like putting your fingers in your ears...that's what her hearings like.

She hears better on her left than her right.  Her left she has some loss on the mid level and lower level sounds while her right ear she has hearing loss in the mid and higher ranges.

We're told to talk to her often because she's going to miss a lot of what we say so the more we say the more she'll catch.  We're also told to hold her close when we talk to her since the vibrations of our voices will help her understand the sounds we make.

Payton will be checked briefly again mid December when we meet with the Neonatologist.  That won't be an indepth check but it will give us an idea of whether the fluid in her ears is still present.

If the fluid is still present its likely she will have tubes placed to help drain the fluid...it may (fingers crossed) help with her hearing (that isn't something that was fully explained due to a very hungry baby by that time).  The doc did caution that she's quite young to have the tubes placed and this will be something addressed in the future.

The doctor wasn't 100% sure whether her hearing would degenerate over time.  CDH babies who are on ECMO tend to be higher risk for hearing loss and a current study at the hospital is only looking at ECMO babies.  He did refer to the person in charge of this study and the odds of her CDH being the underlying cause of her hearing loss is 1 in 6 chance.  Not huge but not small either.

So CDH is still pissing me off...primarily because if Payton's hearing loss is permanent I worry about all the things she will miss out on, all the hurdles she will encounter and it breaks my heart when I look at her little face to imagine how much more we're going to ask of her. 

But, I'm still so incredibly thankful.  She is amazing and she will continue to teach me how much more amazing she has in her.

For now, we've dusted off the baby sign books and are committed to getting ahead of things.  To be prepared just in case.  So we're going to learn 1 new sign each day and commit to using it in our everyday lives.

Today, our 1st word is "Funny" because we're also committed to keep the laughter, above all else and I hope this word gets used a lot.

Hear Hear

Its important that I start this post off with a disclaimer that the below is all suspect and we don't know anything for sure...not till Tuesday when she will have a hearing test.  But till then, my mind, imagination and worries are ramping up a mile a minute fearing the worst.

One of the side effects (if it can be called a side effect) of CDH is hearing loss.  They don't know why it happens, just that until up to age 5 its a far too common issue with CDH babies.

Payton had a hearing test just before leaving the hospital on Sept 23rd.  She passed it with flying colours. 

When she came home we began the process of meeting with various medical staff here in Squamish to determine what resources we would need to utilize for Payton to ensure she has normal development (or as normal as possible).

One of the questions we were asked was whether she was making coo'ing noises.  It was something I didn't have an answer for since she was so 'new' to home.  From there I started watching for coo'ing noises.  After a few days both mom and I established that yes, she was coo'ing.  I became complaicent with this development and instead focused on areas where I knew Payton needed work (her tummy time and head stability).

About a week ago something made me revisit the coo'ing (or lack of).  Over the last week I've been trying to get Payton to coo.  I've also been realizing that she doesn't respond to gentle voices (she still hears loud noises).    And from what I've read, the lack of  coo'ing (or stopping this) in infants is most commonly caused by hearing loss.

Her lack of response to gentle sounds has made me worried about possiblities of her lying on the autism spectrum  (one study showed CDH babies have a 7% chance of autism) right through to hearing loss.

Rest assured we'll know for sure on Tuesday.  Until then I continue to worry and stress about Payton having another uphill battle in life to overcome.  I know that looking at her and knowing what she has overcome if this is her future, she will tackle this too.   She won't know anything different that what and who she is - and that person is and will always be just perfect.

Birthday Angels

Today we celebrated Dayne & Daniel's 4th Birthday. For anyone who doesn't know who they are, they are our oldest children, angels now. 

It was 4 years ago today that we said hello and goodbye to them.  4 years ago our lives changed forever as we became parents, a title that after 4 years has resulted in a lot of love, laughter, tears, grey hair and wrinkles.  All of which I wear proudly.

Many days through the year I reflect on what our journey has brought us, the boys being very prominent in my thoughts.  I wonder how their little sisters will know them.  Will they question the emptyness they have left as much as I do.  Will they wonder what life would have been like if we had 4 little 4-year old feet running around our home. 

In my heart I want to believe had the boys lived we would still have Livy and Payton.  In a perfect world, all our children would be here filling our home with noise, chaos, laughter, stress and love. 

Today my thoughts are many...too many to put here on this page.  They are thoughts of what if's, why's, what is to come and more.

They are thoughts of anger, love, confussion and acceptance. 

Sometimes I want to close my eyes and imagine a life where I didn't have to carry the pain of a loss because they are here with us, sometimes I simply want to forget they ever existed, I wonder if I can will the memory of them away.  Without their memory that place in my heart wouldn't hurt so damn much. 

I'm incredibly thankful for Livy and Payton.  They don't take the hurt in my heart away, they simply mask it with so much goodness, the hurt is harder to feel. 

Like taking a loud noise in a quiet room...its hard to ignore.  Take that same loud noise and put it in a crowd of people, now you only hear it periodically.  That is what its like now.  Absorbed and living in harmony with the good parts of my life.

And now, another year has gone by.  Another year has seperated us from that beautiful but painful day.  Another year the crowd has gotten bigger and the painful 'sound' of that loss becomes harder to hear in the crowd. 

As we do every year, we measued how tall the girls are (Livy has grown 5 inches since last year) and we take a family snapshot (though this year we took it on Nov 6th because Nov 7th was calling for heavy rains).

Happy Halloween

Monday was a great treat in our home.  Of course its Payton's 1st Halloween and having her home to celebrate it with us is indeed a special treat.

That of course pales in comparison to the other upside this year brought. 

For the 1st time Livy was/is old enough to go Trick or Treating (and understand that with a few short words someone will give her candy).  That means its also the 1st year we were able to raid our kids Halloween stash (though today I'm feeling the suger hangover).

We managed a few pics early on when the excitement of what was to come hadn't taken hold. Once we got Livy on the ground running (literally) there was no time for pics as Livy fought each step to run wild through the streets going door to door and begging for candy.

I have photos but today of all days Dwayne snuck out of the house with the camera.

On other news/updates things with Payton are going well.

She's had her MIC KEY removed and I have photos of the before/after and now that I want to share for any parent who is in the midst of needing a surgically placed tube or are faced with it.  Its looking really good now and has stopped draining so we've stopped covering it.  It seems the granulation tissue is going to hopefully subside simply by 'drying up' as it appears to be doing and possibly coming off like a scab.

Payton has a few appointments this month including a hearing test as CDH babies are more likely to lose their hearing up till the age of 5 than other children.  They don't know why that is but she will be followed till then.  At this point I can safely say that she can hear (thanks to Livy for clarifying that for us on a daily basis).

Payton will also see someone about her physical development as she's obviously behind in that department.  Whether its because of her time in the NICU or because she will always be developmentally delayed due to her defect I don't know but we work hard with her with the exercises we do know and look forward to learing more to help her catch up if its in her to do so.

Last week we noticed that Payton has started smiling a lot. Especially when looking at us and when we talk/coo to her.  She's an incredibly happy baby and is easy to keep settled though more and more we're noticing that she's having her crying fits.  I'm not sure if its a baby thing or if its her digestive system backing up and giving her a tummy ache.  Farts and poops seem to help so its possibly due to her digestive system adjusting as she grows.

And growing she is.  This Thursday will be her next official weigh in but its so obvious now when I lift her that she's a heafty little girl.  We went to the doctor yesterday and our doc was amazed at how much she's grown.  She now has fat on her limbs (when she came home from the hospital she was pretty lean). 

She continues to eat like a champ and though she spits up, its not any more than what I remember Livy spiting up (though I do notice the odd reflux episode during the day - tell tale signs are grimicing and a sort of gagging).  These are few and far between and aren't always accompanied by puking.

As for Payton's doc appointment yesterday, about 10 days ago I noticed that Payton's hip was clicking when we would work out her legs (to help her tummy digest).  Dwayne and Wilma noticed it too.  So we booked an appointment and yesterday the doc wasn't able to duplicate the clicking but she did notice that the fat folds on Payton's legs were asymmetrical (a possible sign of hip issues) though everything else seemed normal.  But because of the early warning that we had from our NICU doctor, our family doc has put in a request for an ultrasound for Payton's hips.    Fortunately if there is something wrong its correctable (though a pain to do so) and that we caught it early as detecting later in life can result in life long issues.

That's it for now though I will have to follow up with photos once the camera is home.

Free Range

July 28, 2011 was the last time Payton had anything NOT attached to her.  Today, for the 1st time since then, Payton is free of any and all attachements including, but not limited to: wires, monitors, tubes, suctions, IV's, needles and MIC KEY's.

She loves it!! (which translates into "I love it").

Contrary to what we were told in the tube maintenance class, it could take up to 2 weeks for her tummy to heal/close (worst case scenerio it could require surgery to close) but because Payton's hole is so new (8 weeks compared to some people who have them for years) they are hopeful that she will seal the hole quickly (some as quickly as 6 hrs).

So for now she has a gauze pad over the hole to prevent leakage onto her clothes and she is officially Free Range.

On another note, Payton shined in her appointment yesterday.  Not only is she a CDH survivour (only 50% survive) but she is a CDH thriver.  The surgeons don't want her back till she's a year (unless there's reason for it, ie reherniation symptoms).

She also continues to gain weight.  2 weeks ago at our appointment with the Pedi Payton was in the 25-30th percentile for weight.  Today she weighed in at a whooping 5.61 kg. (12.lbs 5 oz).  That ramped her up into the 50th pecentile for weight.

There were no other issues surrounding Payton and she was suitably fawned over regarding how amazing she was with her breathing and now, after such a rough feeding start, how amazing she is with her oral feeds. 

We have been gently cautioned, that albiet her amazing prognosis, Payton still has small lungs and we need to be cautious and keep in mind that she is NOT a fully developed baby.  So while she surprises us and never gives any other signs that she's anything but 'normal' we do still need to take precautions with her exposure to virus', flus and colds this season.

We have heard back from the Pedi in that Payton will be recieving her RSV shots this winter to protect her from the worst of it (RSV is a mild virus to us healthy individuals but a potentially deadly virus to infants, especially those with comprimised lungs).  She'll get a series of shots throughout the winter so while she's past the stage of being hooked up to something, she still has to put up with needles for a little while longer.

I'll include a few photos of Payton's before and after shots of her tube site when I get a chance to take a picture without the gauze covering it.  Its a team effort to do that so I'll have to wait till I have some help but I do want to share so that anyone who's facing the tough decision to place a G-tube in their child can see the before and after shots and know what to expect.

Getting Closer...

We're getting closer to a lot of things right now. Its typically not my favourite time of year.   Contrary to most who love the colours of Fall I always relate this time of year with dying.  The dying of the leaves, flowers etc.  I instead thrive on life and as such spring is always my favourite time even early spring when its brown and there's no leaves on the trees.  The promise of what's to come is what I love.

But I regress.  Its Fall and 'its' getting closer.

'Its' of course is:

The removal of Payton's tube: Set for this coming Wednesday
Halloween: in 16 days
Christmas: I can't count that high so I don't know how many more days...just that the spirit will be in the air soon.

Oh, I guess its worth mentioning mine and Dwayne's 6th year Anniversary is also coming - tomorrow to be exact.  Fitting enough, its also Pregnancy and Infant Loss day. So with that day of celebration it also comes with sorrow as many family (ours included) light candles for our little ones in their memory.

Just to back it up a bit, I did mention that Halloween is coming.  And as is our tradition, we went to do our Annual Stanley Park Ghost Train ride.  We had to convince Livy to put on her SuperGirl costume but once she started getting all the attention she LOVED IT!!

Here's a few pics of our evening (Note poor Payton is already wearing hand-me-downs).

The recycled little girafe.  Looking just as cute the second time around.

Faster than a Speeding Bullet (thank goodness for her super strength since she kept tripping on the pavement from running so fast)

Face Painting

Our new best friends - Staph and Yeast

We've actually had a peaceful week so far despite the title of today's post. 

It's best to go back to the beginning of the week.

On Monday we were set to see Dr. Reilly but that was last minute postponed till Wednesday.  No biggie, we kept Payton on her antibiotics (which we noticed a big improvement with her MIC KEY discharge) and her granulation tissue seemed to have tappered in its growth.

Instead, we saw our new, local doctor on Tuesday.  It was a very positive appointment - where the doctor placed her hand over Payton's scar/MIC KEY and said, if it wasn't for this I'd think she's a perfectly healthy baby.  Payton got weighed and measured.

Wednesday we saw Dr. Reilly and while it was a good appointment we learned that our time with Dr. Reilly will/should be limited.  Once Payton's G-tube is removed and if her feeding keeps trending in the general direction that it currently is we won't need him anymore (since he specializes in children with feeding issues).  He did review her swabs from the NICU (2nd last day when they swabed her incision/stitches) and from our Emergency Room visit. Both tested positive for Staph infection.

The good news is she's handling the infection well but there are still 2 pus pockets with her incision where there are 2 dissolvable stitches that haven't managed to dissolve.

On another note, the antibiotics Payton's on has given her poor little bum a yeast infection. So we have cream for both the staph and the yeast infection.  Hopefully both are a thing of the past soon enough.

Payton was also weighed and measured and her stats are as follows:
Head Circumference: 50% (same as Livy was - that's where the resemblance ends).
Length: 25%
Weight: 25-30%

So she's doing very well all things considered.

Today Payton had her 1st set of immunization, something very crucial to a baby with small lungs.  Again she was weighed and measured and I figured it made sense to share her most recent measurements.

Here's where we stand:
Head Circumference: 39 cm
Length: 56 cm
Weight: 4.8 kg (10lbs 9 oz)

So in all, Payton has gained 1 lb, 12 oz since leaving the hospital...she's gaining almost as fast as Livy did when she came home from the hospital. 

Its also worth mentioning that we continue to work on strengthening Payton's muscles since she's missed so much tummy time etc while in the hospital.  She's now holding up her head though she only lasts a few minutes before she starts doing the bobble head.  Still, each day we can see a huge improvement.

Livy is still loving her little sister and only once now has she wanted to 'send her back to the hospital'.  I think that's pretty good so far.  I'm also being asked by Livy for more hugs and cuddles as the low level jealousy seeps in...I'm pretty ok with that since we don't get enough from the little bug.

Update

Its pretty safe to say that our updates on Payton will likely become further and further apart as she settles into being a 'normal' baby at home.

The last few days have been pretty uneventful aside from a quick trip to Children's Hospital to have the doctors look at her granulation tissue (when I say quick I mean not so quick since we were there for 3 hours - eternity when your juggling Livy too).

Payton came home on some antibiotics not because of her granulation tissue (which is growing rapidly) but because of the significant discharge from her tube/granulation tissue.

We see our new Pediatrician on Monday who happens to be an expert on these things so we'll have a concrete answer then as to how she's handling the G-tube and whether the growing tissue is a concern.

We also took Payton in for another weighing at the Community Health Centre and she still continues to gain weight.  In total, for the 1st week home she's gained 426g (or 0.937 lbs).

As for Livy, she's adapting very well and for the most part she loves her Payton.  Only once has she said we should take her back to the hospital.  Aside from wanting on my lap a bit more (something I'm not going to complain about because I don't get enough cuddle time from Livy) she's pretty content to have a little sister.

How Sweet It Is

Payton and I spent some one-on-one time today and here's what we ended up with.  Its not professional and not as good as some of our other photos of us and Livy but the last few months of drama has left us relying on a few more Do-It-Yourself projects.

With such a cute subject I could hardly go wrong.  Now I just need to figure out how to get Livy in there without risking Payton's safety.

Gaining like a Champ

Payton's been home for 3 days and today we went in to the Health Centre to meet with one of the community health nurses. 

Payton was weighed and is weighing in at a whooping 4280g (she was discharged from the hospital at 4100g) so Payton has gained 180g in 3 days - 0.4 lbs in 3 days (and this after 2 pee's).

So its safe to say that breastfeeding is working well with her.

On another note, Payton reacted to her weigh in by peeing everywhere.  I'm not the sharpest knife in the drawer as I only brought 2 blankets (no extra clothes) with me.  She proceeded to pee on the blanket we used on the scale then peed on her clothes and other blanket. 

Thank goodness for the nurse from BC Childrens when we left she took two blankets and rolled them for support in Payton's carseat.  So, this is how Payton came home from her weigh-in.

On the negative side, we're dealing with some granulation tissue around Payton's MIK KEY (G-tube) that we're keeping an eye on.  It seems to be getting bigger so we'll possibly take her in sooner than later.   It'll be such a relief when we finally free this little one from all her attachments.

Captain's Log - Day 1 (at home that is)

It was a good, albiet short, night.

To back up a bit, Payton has only been on full feeds for a very short time in her life (maybe 1 week out of 8 sporadically spaced out over her 8 weeks).

Yesterday at the hospital we thought we'd give breastfeeding a try before leaving...she was fussing a lot between feeds and the nurse thought she was hungry.

It took a few minutes.  On one hand I 'knew not to get discouraged (afterall, feeding in itself was new for her let alone a different type of feeding) on the other hand, I also knew because it was a new thing I needed to be patient and let her figure it out.

Once she did it was full speed ahead.  We haven't gone back to the bottle yet.

Admittedly she's still going through a few bumps with it as I don't think she's getting enough in one sitting (so she often feeds within 1.5-2 hrs) and she has to work a bit (huffing and puffing) to feed so I think she swallows a fare bit of air.  She tends to spit up after a feed but so too did Livy and if I recall, Livy nursed the same way.

Once to sleep last night she was so content that she slept through her feed and went 4.5 hrs (and I had to wake her up for it).  After a feed and a poop she went right back to sleep for another 3 hours.

So other than being a bit tired (all in I think I got 6 hrs) it was a great 1st night.

Livy likes having her around but I realize that this new love is quite possibly for a limited time only.

No Exchanges or Returns

We got her and we ain't giving her back. 

I'm typing this with one hand and holding her in the other so I'm keeping this short and sweet.

Life is good right now!!! 

I'll give an update as to how we survived the night in the morning.

We're buying her the Red Slippers as we Speak

Yes, there is a very good chance that Payton will...

Ok, I'm not going to jinx it by saying it out loud.

Today I was running off my feet getting the equipment and medication we need to have Payton... (ohhh, you thought I was going to type it didn't you).

Payton was up to full feeds this morning and is doing great (just 2 small spit ups - just what you'd expect from a normal baby AND she's in a flat lying bed).

A few more little hiccups Payton Style have followed us but honestly we'd be worried if we had a hiccup free day with things are going so well.

Payton had her IV removed this morning and Radiology came to meet with me in the am.  He determined that if Surgery was in agreement they would just remove the misplaced GJ tube rather than trying to replace it.  There are downside to this (if Payton doesn't tolerate feeds well she'll be back on IV for a number of weeks to suppliment her feeds till they can replace the tube) but the upside is that we can avoid another proceedure by pulling it out especially since she seems to be rocking her feeds right now.

When I came back from lunch her GJ had been pulled - HURRAY!!!  Payton is now down to just her MIC KEY and her monitors.  Such a surreal experience to pick her up and only worry about one thing on her body. 

Even better is that her MIC KEY is just an ornament at this time (they won't pull it till the 8 week post surgery mark to insure her stomach is fused with her adominal wall to avoid leakage of stomach content into her adomen).

On the downside, Payton has(had) another abcess along her surgical incision.  It seems her inside (dissolvable) stitches are infected.  Some were poking through and the Pediatrician came over to try to cut them out (apparently this isn't that rare - for people to react like this to the dissolvable stitches).  While trying to cut a couple out she worked on the pus pocket a bit and a lot of pus ended up draining out of Payton.  They cultured it so we'll know in a couple of days if its an infection we need to worry about (or a good type that will clear now that the would is exposed to air).

We also got the green light to try breastfeeding today.  I was too tight for time running around getting things ready for... HA (almost said it).

So, on another note, I'm hoping tomorrow is a lucky day for us.  So lucky in fact that I went out and bought a Lotto Max ticket for tomorrows draw.

Payton's Billboard - notice her well earned Bluebird on the far right!

Even the NICU is Sick of Her Antics

Well, the good news is she's still fast tracked to come home.  The bad news is we're now waiting on surgery to address her current situation and they're not the fastest team in the corral.

Despite surgery's tardiness the NICU is getting us ready to go.  Apparently Friday is a 'closed' day for much of the services so they're preparing her as if she is ready to go home any day.  We're going to do the carseat test, hearing test and get all our equipment and perscriptions ready so if she's good to go by Friday, Sat or Sun we don't have to wait until Monday till various offices open.

So I'm pretty much convinced that even the NICU just wants her gone before she defies some other type of reason (apparently bringing her GJ tube up into her throat is rare.  Go Figure!!)

This morning surgery did come by and pulled out her GJ tube a bit hoping it would pull down into her stomach.  But since it coils a bit before going up into her esophagus the x-ray shows that its still sitting in her esophagus.  So they've re-called surgery and we're waiting for them to once again pull her tube so that we can start feeding her again.

The good news is that likely her puking yesterday was due to a tube up her throat and that there's a very good chance that she'll tolerate higher volumes of BM.

The not great news is because she's not feeding Payton had a rough night (crying in hunger) and is still on IV.  This morning she blew out another IV and her poor little arm is swollen from the fluid being dumped into it.  So, she got a new IV and it only needs to last 36 hrs this time and hopefully that will be the last IV she'll need in a long time.

I may be getting ahead of myself by posting so early in the day because like yesterday, anything can happen...but thought with everything going on yesterday it was a good time to update.

She will come home, she will come home, she will come home...

If I keep saying it then it will eventually come true...right?

The Saga of Payton continues.

Tonight we called the NICU on our nightly 'goodnight' phone call and got the latest update on Payton.

Its important that I back up a bit and give a little bit more info from earlier in the day.

While in Radiology this morning (after the tube blow out) the Radiologist attempted to insert a wire into Payton's GJ tube to unblock it.  While working the wire through the tube pulled out of her stomach/jejunum about 4 inches...quite a bit in my books.  When he noticed it he pushed it back in.  From what I could see on the x-ray the tube looked to go back to where it belonged (and I'm assuming he saw the same thing).  Payton was finished with Radiology before 11 am.

At 12pm we fed her her 40ml feed.  She slept and between Grandma and I we held her and rocked her (and burped her and played with her).

At 2:45pm we started her next feed of 45ml.  She gobbled it up and I burped her.  Just as I was about to put her in bed she started gagging and a little bit (a mouth full) of puke came up.  Just the one.

Mom and I left around 3:30pm.

At her 6pm feed the nurse noticed that her GJ tube was coming up her throat.  Yup, the end that was supposed to be in her jejunum (her bowels) was now situated in her throat.  An x-ray confirmed this.

So they stopped her oral feeds and called surgery (not happy that they didn't call us but admittedly we're probably on the bottom of the totem pole for medically related phone calls).

Her feeds are now halted until they decide what to do (tomorrow) and the two possible scenerios are:

1. Re-insert the tube via surgery and once the tube is out of her throat continue working on getting her to full feeds.

2. Remove the tube and work on getting her to full feeds.  If she doesn't tolerate full feeds it'll take another 6 weeks before they'll be able to insert a new tube so if she can't get to full feeds she'll remain in the hospital on a combination of IV (or another PICC) nutrition and oral breast milk.

I understand option 2.  It makes sense and I can envision the process.

I don't understand option 1.  I thought her tube was blocked and not unblockable by radiology.  What will re-inserting it help?  I know Radiology mentioned they can use the old tube to insert a new one (possibly follow a new tube down the old one like they did with her NJ) but with the old one up her throat there's no old tube to follow.

So I'm stumped...I guess we'll learn more tomorrow.  For now, with this possible new setback looming before us the only thing I can do is assure myself that "she will come home" eventually.  They have assured me that no one has ever walked out of the NICU so we're pretty sure that at some point she will come home - with this latest event, it just could take a little longer than we thought.

*** Its important that I mention that I firmly believe that her puke after her 3pm (45ml) feed today was partly due to her GJ tube working its way up her throat.  I'm keeping the faith that she's handling her oral feeds and that this set back with the feeding tube is just a small hiccup and her attempt to rid her body of the contraptions that she doesn't really need.

Holy Sh!t, They Almost Killed Her

Ok, maybe a bit of an exageration but then again maybe not.

When I arrived this morning Payton was getting prepped to go to Radiology to have them try to open her GJ tube.  The idea was to put a wire down her tube to see if they could open it that way.

We arrived in Radiology and they asked if we (Grandma Val and I) wanted to stay.  Of course we said yes.

The Radiologist explained that he had gone to her bedside and tried flushing the feeding tube with high pressure using a syringe with no luck.  He said he would try again and then try with the wire but he didn't have high hopes.

He filled a syringe with sterile water and tried flushing her tube...if I recall correctly he mentioned that the syringe he had used previously was small so this one was a bit bigger.  Well, he certainly succeeded in applying more pressure to 'flush' her tube.

He proceeded to blow her GJ tube apart...THANK GOD the blowout happened on the outside of her body.  We (well, myself and mom) stared in shock, dripping with sterile water.

Now, its possible that this wouldn't have killed her had it occurred in her jejunum but I wonder if using the x-ray only would he have known that he blew out her feeding tube and if there's a possiblity that it would/could have peferated her bowel unknownly.  I don't have the answers and quite frankly, I'm glad I don't (meaning it didn't happen).

As a result her GJ (feeding) tube is toast and we're back to plan A - getting her up to full oral feeds asap. Only what I thought was the original schedule yesterday isn't what they are doing...they're ramping every feed up by 5ml.

So, today at noon I just fed her 40 ml.  Her next feed at 3pm will be 45 ml.  By midnight she'll be at full feeds.

So far (fingers crossed) she's handling her increased feeds very well.  No puking and no gagging (this is where she takes after me...stomach of steel).  I think if she gets to 50ml before puking she's doing very well...afterall, normal babies puke with full feeds so at some point Payton will puke...the 'when' is the big question at this time.

Otherwise, she's doing fantastic.  Another bath today and she hated it just as much as the 1st.  I can't tell you how wonderful it is to listen to that baby scream her little heart out.  It brings a huge smile to my face.

When we arrived today we had a Blue Bird (photo to follow). A sign that Payton's time in the NICU is in its final leg.

If we can get Payton to full feeds we're well on our way home (and not upstairs especially since upstairs is full).    With full feeds they will be able to pull both her feeding tubes out though they will wait till she's 6 weeks post op due to the risk of her stomach seperating from her admonial wall...something that could result in stomach content leakage which would be 'very bad' (the official medical term used to explain it to us).  After 6 weeks they determine that the risk of leakage is not an issue.

So maybe a bad situation will have a good results...Payton orally feeding (#1) and Payton coming home (#2).  Even if its just one of the two its a huge step forward.

Uggh

Well, I thought we were on the home stretch with no more drama but Baby Payton continues to prove more and more that she's just like her Dad.

Today we arrived to find Payton hooked up again to an IV.  I first thought that she had another infection but it turns out that her GJ (feeding) tube is blocked.  I asked what would cause a blockage and the answer was breastmilk.  This obviously was not a scenerio they discussed with us.

So Payton is back on an IV for nutrition and they are now going to do what they can to get her to full oral feeds sooner than later (apparently my requests to be a bit quicker on oral feeds earlier wasn't enough).  So now we're going to really push Payton and see what that little tummy (which has never been full so I imagine is shrunk smaller than normal) can do.

Tomorrow should be an interesting day for Payton.

The feeding schedule is 10ml every 4 hours with a 5ml increase every second feed.  So we anticipate that by tomorrow she'll be at half feeds and by Wednesday evening (if all is tracking well) she'll be near full feeds.

Oral Feeding on the Rise and One Step Closer to Leaving the NICU

There's becoming less and less to report on Patyon.  That in itself is a very good thing. 

Here are a few new things in Patyon's life:

1. Oral feeds are increasing. She's now the happy recipient of 4 x 10ml oral feeds per day.  So much in fact that they are decreasing her tube feeds to counter balance her oral ones (this started this morning so we'll see how she fares with more milk in her tummy).

2. She's scheduled to be moved out of the NICU on Monday/Tuesday.  She'll be moved up to the surgical unit as surgery still wants to follow her for a little while more before sending her home.  Its a big move for us, she'll be watched a little less closely and unfortunately Dwayne nor I are set up to be able to move in with her (as the children's surgical unit is designed for).  If we knew it was only for a couple of days we'd possibly be able to juggle it but it could be for another week or so, and that sort of time committment away from other areas of our lives is next to impossible right now.

On all other fronts Payton is doing well. 

Here's a quick picture of our day yesterday - a short but fun trip to the NICU.

Today we also bathed Payton for the 1st time. She screamed like she's supposed to and we assured her that she would one day learn to like her baths.

Her cousin Kristin got to visit with her and hold her as well...just another cuddle buddy to hold the little girl who has a lot of cuddles to make up for.

The Doc's are Finally Talking About Home

This morning was the 1st morning that the NICU doctors have started talking about going home.

I've met with the discharge nurse 2 times now and she's getting us a list of the equipment we'll need for Payton when we leave. It may take a while to arrange things so the sooner the better.

I'm not sure what time yesterday they removed Payton's PICC line but today (hopefully for the last time ever) Payton is PICC free.

She's also on day 4 of having her G-tube clamped and I'm hoping that means we can start giving her more breastmilk orally. We're waiting on surgery for that one.

The other thing we're waiting for surgery is to see if we can give Payton a bath. The healing from her incision may prevent it still even though its been 3 weeks since her surgery there's still a lot of granulation tissue present so it may be that we have to wait a bit more.

In other news Payton hasn't puked since I held her 2 days ago (yay Payton) so there's no doubt she's tolerating the clamped tube and the very small amounts of breastmilk she is getting. I think its time we start challenging that little one with her feeds.

It would be nice for her if she could take more milk orally since she hasn't had much for tasting things on her tongue. She loves the small amounts she does get so we know so far she won't have oral adversions (right now its just stomach adversions).

Much like Dwayne has me on an exercise boot camp, I've put Payton on one (we don't have to worry about Livy, she does her own boot camp). Payton and I have been working on her neck muscles now that her incision is better. She's about as strong as a newborn (not a 7 week old baby) and admittely its weird because she looks like a big strong baby, she just isn't. Livy at 6 weeks had really good control of her head and neck so Payton is a little bit behind the curve.

As for weight gain, Payton's sitting at about 8lbs 10 oz (about what Livy weighed when born). Hopefully upping her oral treats through the day will be enough to start packing the weight on this little one. The fact that Payton has poops to rival her Dad shows that her bowels are working just fine thus adding a bit more nutrition (even in her tender little tummy) should go over well.

Here's a picture of Payton when I arrived yesterday hanging in a bouncy vibrating chair listening to the soothing sounds of the ocean - I don't know why we thought to get her used to soothing sounds...when she comes home she'll have to get used to 2 dogs, Livy and Dwayne and I...more like a raging hurricane :)  All good, she's a Kress/Brickner - she'll be able to handle anything we throw at her.

So Close We Can Almost Taste It

Tomorrow we will get 1 more line (or 2 to be exact since they are 2 in 1) removed from Payton.  A very important one...her PICC line.  She's almost at full feeds (they sped her up for the last 24 hrs to facilitate it) and it means that she will have 1 less line.  The big one to be exact because its the only one left that prevents Payton from coming home.

There are still a number of hurdles we'll need to overcome in the next little while but this is officially the biggest hurdle.  Everything else can stay with her and there's no rush to get anything else off of her.

As far as Payton is concerned, yesterday they closed off her drainage from her stomach and we got to see today how well her stomach is dealing with just processing her own bile.  So far she's done well (plus 3-5ml feeds in the mix) and though she did aspirate 2 times, she's doing so much better than I would have ever expected.

We're still on the 1.5-2 week time frame but its finally becoming more of a reality than a dream.

Odds and Sods

1st a quick update on Payton today. Her skin surrounding her MicKey is looking red and inflamed.  The surgeon doesn't believe its infected (since they almost never get infected) but it is sore and inflammed and they will keep an eye on it and work to keep it dry. 

They have clamped off Payton's drainage tube to see how she tolerates the excess fluid in her stomach - I'll try to update later when we know how she's doing.

There was also a bit of a ray of sunshine.  They are now saying its possible that she could be home in 1.5-2 weeks.  They'll start organizing things we'll need to care for her at home so that we can be good and ready when she is.

In the meantime here are some photos from over the weekend.

Here's what Payton's new scar is looking like.  It looks amazing to how it looked 10 days ago.

A new cuddle position (for the day since Monday we were back on our backs)

The other precious little one after a busy day in the hospital and a special treat from Dad, her two current favourite cartoon characters, Ruby and Max (aside from the Cat in the Hat).

The play room mural - thanks to the VanBibber clan (and Grandma Val) for giving it a fantastic start.  Still needs some work.

Payton's OK

That's what our Primary nurse always says 1st when she calls us to update (and we thank her for it to relieve our worry when we see that the hospital is calling).

Anyway, I've gotten a bit of flack for slacking off on updates of Payton. Not my intention but rest assured its because Payton is ok and things have settled into a slow progressive pattern.

They continue to increase her feeds slowly and she's now at 16 ml/hr.

The great news is her G-tube output has significantly decreased thus her feeds look to be absorbed 100%. We think its likely from the 2nd surgery where they untwisted her stomach along with placing her G-tube and JG-tube.

In other news, the reason we've gotten so behind is because our schedule has gotten busy with activities that take us away from the computer (ie this blog post is via Dwayne's phone).

We've both been cycling, hiking and I'm going to soon start adding running (something I can do with Livy in a short period of time).

Livy continues to advance and we continue to be in awe of how smart she is. If she didn't look like Dwayne I'd question whether the lab made a mistake.

I have a few pictures I want to add but there not on Dwayne's phone so I'll add them later. Rest assured we're keeping busy and trying to sort out a schedule that will hopefully be well established by the time Payton gets home (nurse today said 4 weeks but we're optimistic).
Sent on the TELUS Mobility network with BlackBerry

Open eyes and Fryer Tuck hair cut

There are rules starting today.  No more Fryer Tuck or Klingon jokes (after my title that is)!!!

She's very sensitive about her hair.  I can't believe they didn't just shave her completely and I did have to express my curiousity about why they would choose this particular hair cut - a mullet in the making??  It does sort of suit Dwayne and my life stye (more Dwayne than me but that's another blog post :D).

Alas, I hope unlike her sister her hair grows fast.  By the time she comes home we may reconsider cutting it all - we have a bit of time to make that decision.  Its still nice to have some downey soft locks in the back to touch (nothing softer than new born baby hair).

Payton continues to do well and its been confirmed that we're taking it slow this time.  Her PICC needed to be adjusted just a bit from yesterday but its doing well.

Her feeds have been increased in frequency to every 12 hours (instead of 24) and today I got to do her 3rd oral feed...breastmilk from a bottle which she LOVED and would jerk forward for more every time I moved the bottle away from her (so she could swallow - something she hasn't had much experience doing). 

Its weird to see the milk come up her feeding tube almost immediately but I'm more concerned/glad that she's orally feeding than how much she's processing.

They're going to wait 24 more hours then start giving her milk more frequently via mouth through out the day so still cautiously slow but progress none the less.

Oral Feeds Started Today!!

Payton is a big girl today - she's once again starting oral feeds.  Now, just like before its only 5ml per 12 hours and it'll get drained out of her stomach about as fast as she'll drink it but its great for her learning and stimulating oral feeding for that day down the road when her digestive system can handle eating like a normal baby.

Here she is before she was sent to Radiology this morning.  Very content even with the nose tube.

Here is the dreaded walk - thankfully this one wasn't to surgery and again, hopefully for the last time.

Some much needed cuddle time with a (almost) bare faced baby.  She still has clear tape on her face but she doesn't even notice it (and its hard to see it).

Ok, one nostril is bigger than the other from all the time with a tube in it (as her tough love Daddy said, since she's already signed up for plastic surgery later on, we'll just roll that in as well).

Big stretch and getting comfortable. You can see her PICC line in her bicep on her right. 

New PICC and No NJ Tube as of Today!

I'll just give a quick update.  We missed posting yesterday because we missed Payton.  With the roads being so busy from the long weekend we didn't make it in (though I did venture out onto the highway twice to try but turned around due to the sheer volume). 

Alas, it was a nice chance to enjoy some of the warm weather and hang with Livy and Dwayne at Alice Lake (where it looks like Livy may be a bit of a water bug like her mom - no fear of the water means I have to get back to teaching her how to swim).

I wasn't sure how fast Radiology would be able to take Payton to place her PICC and remove her NJ tube and was surprised this morning to find out it could happen as early as 10 am today (which it did).

I wheeled her down the hall again with the help of the medical team (hopefully for the last time) and said a quick goodbye.

They said the proceedure would take an hour and for once they were wrong not because it took too long but because it took less time than expected - YAY!!  I think this means we're making progress right??

Her PICC is bleeding a bit more than they like to see but they are keeping a close eye on it. Otherwise Payton's face has no more tubes and for that I'm incredibly happy. 

I think its safe to say that she has her daddy's (and sister's) eyes, her mommy's nose and maybe the mailman's mouth (because I'm not sure where that came from).

They are also planning to re-start oral stimulation again using a bit of milk in a bottle nipple. 

Today I couldn't be happier with her (though admittedly I'll be much happier when she's home). 

Now all we need to do is get her feeding up to full feeds and we can finally ditch this place (the hospital that is).

A Good Day All Around

Its been a good day all around.  While we didn't spend that much time at the hospital today we did get to see Payton and we left her in good hands with our favourite nurse - Allison.

She continues to progress slowly and well with her feeds and is up to 5ml/hr today.  Her incision looked great (we got a quick peek at it as they unstuffed the wound to let it heal more open assuming the chance of it closing and creating another abcess is gone.  The wound will heal 'open' so we assume Payton will have a bit of a divet in her belly for a while.

The rest of the day was Legendary with Dwayne, Livy and I hitting the Aquarium to visit with Dwayne's old roommates from his Victoria days and their two children. 

We then tackled and conquered the Grouse Grind but with evening plans for dinner in the works we ran out of Beer and Nacho time.  Its almost enough of a reason to return to do it again but it knocked the snot out of me so I may need a bit more of a 'base' before doing it again.

Dwayne and Livy left me in their dust and even when Dwayne let Livy walk most of the last 1/4 "all by self" I still couldn't keep up.  I think in the end my climb time was about an hour and 5 minutes which is a realization in itself of how out of shape I am in...I think my fastest is 48 minutes so I have a bit of work to do.

We then joined friends for dinner and spent the evening relaxing and letting Livy burn up some more energy.

In the end it was a good day and we fear it may be one of our last "summer" days and so we're very grateful that we had a chance to soak it all in.

On another note, we learned today that there is a CDH baby in the BC Children's NICU who is struggling.  He/she has been there for 2 weeks now and we want to keep the little one in our thoughts as they tough out the hardest part - lung stability.

The Trend Continues

Payton continues to have another good day.

She's slowly (and I mean slowly) increasing her feeds and is currently at 3ml/hr of continuous feeds.  She continues to poop and we're happy that it means her digestive system is moving properly.

Dwayne and I went in today to see her though we opted to keep it a short visit (aka no cuddle time) since we have Livy in tow.

As it was we spent about 2 hours at the hospital so that we could be there for her incision bandage changing.

Today Dwayne took the helm since he's missed so much and calmed her while they changed the wound packing.  From what he said its looking really good and she didn't cry too much (about as much as she does with a diaper change).

I'm hopeful that any pain she has with the wound will start to get much better starting tomorrow (day 4 after opening it up).

We didn't get the blood cultures back to determine if she's once again a candidate for her PICC line and GJ contrast test but since its the long weekend we don't expect anything until at least Tuesday (likely Wednesday).

By then we hope to be close to half feeds though if they continue to increase her feeds at 1ml/hr per 24 hours then we'll only be on 6ml/hr.  Hopefully she continues to hold steady with her output so that they start to increase the frequency of increases.

Otherwise she's doing very well and while visiting today I got to see her wide awake.  Today was the 1st time ever she looked like a real baby.  Kicking and waving her arms just like a baby is expected to do (albiet with a few wires and tubes).  It reminded me of how much she's been through and how proud I am of her and her achievements. 

On another note, Dwayne and I have noticed how difficult this entire process has been on us and between lack of sleep, juggling work, hospital time, Livy time and the few other events thrown in there we've negleted to do much for 'us' time.  So we've made a concerted effort to be an 'us' for a while.  We have stepped back and begun doing things we always loved to do but life hasn't left much time for.

We've hiked the chief a couple of times now (with Livy but she slows Dwayne down so I have a hope in h3ll of catching up - no luck so far but I'll rebound quick I promise) and we're looking forward to do some activities that we used to do many years ago.

This weekend may even see us enjoying a beer and plate of nachos on top of the Grouse Grind (as many of you know this is the starting point of where Dwayne and I met though courtesy of Dwayne the beer was free).  I think Dwayne may forgo the flippies while hiking this time but who knows, maybe nostalgia will prevail.

As always, Livy continues to keep a smile on our face through this all and I have a video in the making that I want to get up...I just need to find a little bit of time in all this chaos :).

The Road to Recovery Starts Today

What a difference today was from yesterday.

Payton has been sleeping almost constantly.  She's so calm that the nurses almost get worried and come by to check on her.  She's had very little Tylenol (unlike yesterday) and has been sleeping like a baby should.

Today we arrived for cuddles and she essentially slept through all the handling.

We were there for rounds and Payton's doing very well especially in lieu of what her last few days have been.

Her stomach (G-tube) drainage has been very good and in 12 hours was only 7 ml (down from 35ml the previous 12 hrs.  It did go up in the afternoon but because of the fussyness during the wound packing and other stuff (to follow).

Surgery was by and they sort of checked the incision (left the bandages on for the nurse to change) and they have approved increase in feeds.  She's only on an extra 1 ml/hr (for the next 24 hours) but we'll take any progress we can get.

Then the NICU team came by for rounds.  There were no issues and they were glad to hear of increased feeds and the low stomach drainage.

Payton's two IV's continue to hold so her IV feed/meds have been split between the two making a replacement less likely (hopefully they will hold till her PICC is placed).

We were also there for the dressing removal (where they also removed the gauze they stuffed into the wound yesterday).  They cleaned and restuffed gauze into the wound.  The purpose is to keep it open so that it doesn't close shut thereby traping more bacteria and possibly causing another abcess. Its not pretty and it'll leave a good sized scar.

I did take a picture of it but Dwayne and I decided not to share. Its a particularily nasty picture and I only took it for Payton...so she can see (if she chooses) how strong she was and how much she accomplished for when she's older.   We recognized that so many pictures of Payton are not great ones (despite this being her life right now) and we thought that it was time since she's doing so good, to not share something not so nice looking.

I did take another photo (close up) for the doctors/nurses so they have a comparison picture (they were looking but couldn't find the camera to take one while it was exposed).  So tomorrow they'll have today's photo to see if there's any improvement or not.

We still haven't gotten her ECHO results but I'm going to assume its because there was nothing to report.  So for now, we're assuming (and treating her like) Payton no longer has any signs of pulminary hypertension.

As mentioned earlier, her drainage was great for the first 12 hours of the day. During the cleaning of her incision Payton hardly moved...she did squirm a bit but no crying and she was so easy to handle (shows how much that abcess hurt). 

Later before we left we changed her very full diaper (she blew it out with poop) so we're happy to report that her bowels are working well. She had a huge diaper!!

We hope that continues on with the increased feeds and is positive enough to urge the surgeons on to letting her feed more in quickly intervals.  But again, I'll take forward motion, however small, as long as we have the worst behind us.

We gave Blood!! Today - In honour of Payton - Our Hero!!

Yes, these fine folks have bragging rights today!!

What a wonderful email to come home to today after the long drive (made even longer because of the long weekend) from the NICU.

I can only recognize three people in these pictures:

- In the purple shirt my Auntie Beverly (Payton’s Great Aunt).

- In the blue jacket/black shirt with curly hair my Aunt Laurie (Payton’s Great Aunt).

And

- A photo of Payton :)

I’m guessing that the remaining crew are from their place of work and even though we have never met, we are eternally thankful for your effort and generosity.