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.