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.
Wednesday, October 19, 2011
Friday, October 14, 2011
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).
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
Thursday, October 6, 2011
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.
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.
Saturday, October 1, 2011
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.
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.
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