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.

 

Payton is my Hero

I very much hope that today we summited our last hard day and from here (even if slow) the drama at the NICU is behind us.

It was a hard day for Payton today and she handled it well.  All things considered I think, despite the scars that will remain, she's a much happier baby because of it too.

When I got to the NICU this morning I was hoping to catch the docs on rounds.  I missed them and we hung with Payton and got updated by her nurse.

Of course Payton was still on minimal 1ml/hr feeds but we learned that her IV in her head got removed and her IV in her hand was failing (I've lost count of how many IV's she's had).  The concern was that she didn't have many good veins left and we still needed at least one for her PICC when she was ready.   They tried to place two IV's (and draw blood) on two different locations before we arrived and failed.  They then decided to leave her until the NICU's best nurse could give it a try.

She also tested postive for an infection (duh) but that meant that Radiology wouldn't be putting in a PICC line today after all (since it would likely just get infected as well).  Until she tested negative for cultures she had to wait for a PICC line.  So today (after 2 days of antibiotics) they wanted to test her blood again for the infection.  Problem is they were having problems drawing blood (they had tried on her other hand and her foot that morning and failed).  There was talk of using an artery to get her blood (and then a 2 day wait to culture so sooner than later perferable).

So we were waiting for Charlie, the best nurse in the ward to place the IV. 

While waiting the surgeon arrived and she checked the incision (albiet behind surgery tape) and the infection.  She commented that redness was much better. She lifted a bit of the surgery tape and then it happend...a whole lot of puss came pouring out of her incision and that was the beginning of a very surreal and tough experience for Payton - thankfully she won't remember it.

While I held her hands and tried to sooth her the surgeon continued to push out the puss.  It was decided very quickly that they needed to open her incision and pack the wound.  So the surgeon proceeded to cut open her incision and then prodded and probed to make sure all the puss was gone.  She then stuffed gauze into the wound where they will leave it to heal like that.  I did ask if we could give her pain relief after it was determined that they would need to open the wound.  No time to let it take affect so they didn't bother.  Payton cried like I've never seen her cry while they did this. 

Suffice to say Payton will have a very nasty looking scar there.  We figure we may be some of the few parents who will support our 16 year old daughter in getting a tatoo (though plastic surgery may be an option later we'll let her decide).

The great news is that there is no doubt that Payton much more comfortable now that the abcess is gone.  She quickly calmed down and shortly after I held her...she hardly moved she was so comfortable.

While holding her we notice how much more settled she was even from before draining the abcess and much better than yesterday.

After a while Charlie finally arrived to place her new IV.

He tried hard.  He tried her foot but failed.  Then he asked how attached I was to her hair.  At the time since only Payton was attached to her hair I felt it ok...that she would thank me if she had one less poke. In total, today it took 4 IV attemps before sucessfully placing her IV.

So we (Charlie) shaved another spot on her head and with Payton kicking and screaming we placed her IV in her head.

On other news they are now giving Payton 1ml/hr through her GJ tube (the one surgically placed) so we'll see how she handles feeds through that tube. 

She also had her OG tube removed and now her mouth is totally free.  She sucks a bit better on her soother so I think she's pretty happy about that.

Here's a few pictures of the little one and her new look.  I'm hopefull that this new IV will last at least until she gets her PICC.

They are saying we can expect Radiology to take her by Monday so until then we'll have her nose tube and she'll just be getting feeds via her IV and the little bit through her GJ tube.

Oh, and its important to share that she pooped a yellowish poop today!!  Yay for breastmilk making its way down into the poop :)