Blood, Pus and Tears Goes a Long Way

So today wasn't one of my best days.  I finally hit my NICU Brick.

When I arrived this morning the doctors were on the end of their rounds for Payton.  So I got a little clip of what they were talking about, in particular that they were still waiting to hear back from Radiology (aka more waiting).

They did ask if I had anything to ask and I did ask about her infection which they simply replied that she's on antibiotics (forgot to mention yesterday that I noticed Payton's stomach had gotten quite red and looking pussy under her skin.  I brought it to the attention of the nurse who cleaned it and had a doc look at it.  He said he'd keep an eye on it and later that night the night nurse confirmed that they were going to start antibiotics and treat it like an infection since it looked like it was getting worse).

I still hadn't had a chance to talk to surgery but since the rounds team were all NICU people I knew my questions about feeding wouldn't/couldn't be answered.

I then went to Payton to see how she was doing and I pulled back her blanket to see her tummy.  It looked awful.  It was then that I started to cry and the tears wouldn't stop.

I had a hard time imagining how long she laid there till someone actually did something to help her.  How long she was in discomfort (and still obviously is).

While I sat there crying one of the nurses (a head nurse I think) came over and asked me if I was ok.  She then offered to get a meeting organized (some time that week) with everyone so that I could ask questions from all teams (not just one doc at a time getting different answers).  I agreed and proceeded to hold Payton all the while bawling.

It took about an hour to get surgery and NICU docs in one spot (amazing what a lot of tears can do in a short time).

Finally we had some answers. 

They have been holding off feeding Payton because they perferated her bowel during surgery.  The surgeon remaining said they felt it important to let it heal properly/fully before stressing her bowels.

I asked about a bit of feeds and was told that if Radiology couldn't take Payton today, that they would let her start on some small feeds. Radiology can't get her in till tomorrow so they started her on small 1ml/hr feeds (recall she was stopped last week on 24ml/hr so today's feed is very tiny in comparison).

There was some other discussions but ultimately the feeds were my biggest question.

Radiology will also be placing a PICC line (when they remove her NJ tube tomorrow) since Payton's other ones keep failing.  They believe letting Radiology place her PICC will result in a stronger line that hopefully won't fail.  They don't believe Payton will be increasing her feeds that quick and will need the PICC.

I still need to get an update on how her ECHO went yesterday - the results weren't back when we got there today.

I asked about the infection and how quickly it came on.  Apparently surgery did check the wound yesterday early morning and it was fine.  By late morning it was already red enough for me to notice.

Late in the day yesterday surgery came by again but was told that Payton had just settled and the nurse would keep an eye out for it (so surgery didn't look at it then).  At 9pm our nurse had requested antibiotics.

This morning I saw what you see below. The good thing is its gotten better from its worst point (you can see where they drew the line as to where the infection had spread).

If its not significantly better by tomorrow surgery may cut open her incision and pack it and leave it exposed to the air to let the infection heal that way.  I'm not sure what that equates to time wise or pain wise or holding Payton wise but its not a route we want to go.

I don't know when enough will be enough for this little one.  I just know that today was a rough day and I very much hope that tomorrow will be a better one for Payton. 

I also know that after our meeting, I was visited (patiently) by 2 more NICU doctors.  I think the rumour went around that Baby Brickner's mom had hit the NICU Brickwall and was having a meltdown.  Its ok, I'll do it again if it gets me answers.

Oh, and to top off our day, another baby in Payton's room has tested positive for staph infection.  Because everything before that just wasn't enough to deal with in one day.

Despite everything else we still managed a cuddle.

A close up of the tender, sore belly.

Slightly pained yet content look.

The Feeding Battle

I feel like its an 'us against them' type situation.

I'm not sure if its just because I'm so tired of the days with no progress, I'm worried we made the wrong decision, mother's intuition or that Payton is just sort of caught between two medical groups where no one of any authority is really looking at her situation and making an informed decision.

She's still not being fed.

It wouldn't be so bad but her IV's and her PICC lines keep failing. Without feeding her we rely on either method to get nutrition into her but she keeps getting pushed back on her feedings and no one is really giving us an answer as to why.

Today I have been challanging that decision and I think the surgical team is avoiding me or ignoring me...not sure what.

Basically her surgeon said 'a couple of days' after surgery for her to start feedings again. Sunday (from Friday) was a couple of days. On Sunday we were told Monday. On Monday we were told Tuesday (but also told that the surgical instructions from the surgery actually said to start feeds after the weekend so our 1st guestimate was off by one day).

Today they're saying tomorrow (Wednesday). So they have now pushed her feedings back 2 days. It wouldn't be so bad but now her head IV is failing and they are talking about another PICC (as mentioned yesterday). With Payton's issues, placing another PICC line requires a whole lot more poking and a whole lot more x-rays - not something I want to do if it can be avoided (and it possibly could have if we were able to start feeding yesterday).

So my question has been why the delay in feeding.

There are so many parameters surrounding this that its hard to keep them straight. I want to include it because another curious CDH parent may find it helpful but its so complex its actually hard for me to keep straight. If I can managed to outline it so that it makes sense I"ll include it.

Essentially, I haven't been given a logical answer to holding off feeds except that her stomach secretions are high.

In the meantime, here's a picture of Payton and her cousin Kristin (who just flew in today and is the 1st time she's seen Payton).

Monday, Monday

Its amazing how much a tiny little bundle can inspire.  After my conversation with the nurse last night I was almost in tears when I heard that she had a head IV.  Both because of the shaved head (not expecting it made it a bit of a shock after she was so good that morning) but also because of the fact that this poor little one has been poked so many times she's ran out of limbs that they had to use her head.

I was so rattled and had worked myself up by the time I got to the hospital this morning...and there she was, lying so quiet and calm and incredibly beautiful.  She settled me.  She is my rock through this all. 

If she can take everything that they're throwing at her so well, why the heck can't I??  And so I'm now taking my cues from her. 



Here she is, just like I saw her this morning.

As an update on what's new with Payton, she's gained the IV in her head but lost her PICC (which was leaking so thankfully they weren't giving her concentrated TPN - the PICC didn't hold). 

Her other IV's have all failed thus her hands and feet are free of IV's and she just has it in her head.  Which wouldn't be so bad but its on one side and her feeding tubes (with the connectors) are on the other side so holding her was awkward because it was either or pushing against her making her uncomfortable.  As you can see though, we found a position that worked.

Still no feeding and we think she's mostly unsettled because of the fact that she's freakin hungry.  She's used to having some food in her body and now she's only on IV.  I'm not sure if waiting this long is good or detrimental for her...I guess we'll know soon enough.

She had an ECHO today but we don't know the results.  She hasn't been on her Sedinafil (for her puliminary hypertension) since before the surgery and everyone assumes she'll be fine without putting her back on it. 

Tomorrow they'll do another x-ray to track her GJ tube (the one that's supposed to go further into her intestines). They'll  put a dye down it to see where it is and if its in a good place they'll put a wire down to hold it in place and then remove her NJ tube from her nose.

They are hoping to not have to place another PICC line to replace the one that they lost last night but its likely that we'll come tomorrow and she'll have her 4th PICC line.  This one will likely be inserted into her head - the other option was one of her legs but one leg was injured from 2 PICC's ago (the one that was infected) and the other leg is well bruised from her IV that was removed yesterday.  The nurse tonight cautioned that it'll likely be her head BUT she's also said that she's put out instructions that only one nurse is allowed to place any more IV's/PICC's on Payton. He's the best they have she assured me after saying that Payton has had so many placed that she's done being a pin cushion and they need to do what they can to minimize the number of pokes from now on.

While holding her she was wide eyed and bushy tailed.  She was simply a joy to hold today even though its awkward to hold such a 'hooked' up little girl.

1 Month Old

Today Payton is 1 month old. 

We celebrated earlier today with a bit of a cuddle though I was only at the hospital for a short time (its just me and Livy today since Dwayne is out of town so not much time to spend with Payton since Livy isn't compatible with the NICU). 

I was worried that she may be in too much pain but the nurse said that it would allow her the chance to change her linens.  She did well with the handling and by her body actions (despite squaking and crying a bit) were such that we knew she wasn't in pain (no tight fists etc).

Her day unfortunately didn't get better as it went on.

It may be that the pain from the surgery started to set in, or (as her nurse said tonight) that her 'maneouvered' bowels are starting to feel a bit discomfort, or her body is hungry as its no longer getting milk but IV nutrition.  Whatever it is, she's had a restless night.

From what I got from my conversation with her night nurse before going to bed is that Payton's been unsettled and has needed more Tylenol.

Also, her PICC line has become irritated again and been removed (this was her 3rd PICC poor girl) and they have had to place another IV.  Poor Payton has run out of limbs so they shaved a spot on her head (her 1st hair cut) and placed it there (I guess my post yesterday was wrong - they can find another place to put another tube/line).

Its a bit sad for me that I missed it.  Its also a bit ironic in that her 2 year old sister (who keeps being mistaken for a boy because her hair is so short) still hasn't needed a hair cut.

So at least Payton can say she's had a 1st before her big sister.

The wonderful thing is the NICU has saved her hair and we'll be able to keep it in a keepsake book for her.  As I always say whenever I make a drastic decision to cut my hair - it'll grow back.

I also learned that they are now saying that she won't feed till Tuesday.  I'm not sure of the reason's behind the additional delay but initially they said they would be looking to feed her today.  Its obvious Payton's stomach isn't handling things very well right now with her drainage so until that settles its a waiting game.

Tuesday is also the day they will again x-ray her tubes to see if they've managed to migrate down into her intestines to where they want them to be.

I got to say good night to Payton (the nurse put the phone to her ear) and it felt nice to do so. 

Tomorrow is another day.

"She's a Tough Little Baby"

Payton continues to do well.

As expected her x-ray today shows her GJ tube (into her intestines) is not as far down as it needs to be but it is in her intestines.  They will watch it and hope it goes far enough or they will try to feed her through it and she how she tolerates it.  Until then they'll keep her nose tube (NJ) in just in case (so we may not avoid a tube on her face for a couple more weeks).

Her MIC KEY tube is good and is already draining her stomach.

Right now Payton has 14 things attached or coming out of her (5 attached and 9 coming out of her).  The great news is we don't think they could possibly add anymore (the vent was the 1st to go last night) and from here she should be rapidly dropping things off.

1st should be her 2 extra IV's which will make holding at least one of her hands much easier.

The temp surgeon (to cover for the reg. surgeon's holidays) stopped by this morning to see Payton.  Here's their basic conversation to illustrate how well Payton's doing.

Nurse: Payton came off the vent last night at around 8:30pm and has been doing well since.
Surgeon: Came off the vent last night??  So how has her pain tolerance been??
Nurse: Good, she's had a few unsettled moments this morning but she calms down with her soother.  She's on Tylenol no need for morphine.
Surgeon: Wow,  she's a tough little baby.

She's less puffy today but they will still give her a bit of a diuretic.  They are also giving her another transfusion today because her hemoglobin is quite low.  Normally they want the babies to try to build up their own because its good for them to have to but they did say that for a Diaphragmatic Hernia baby (one who's lungs are still small for her size even if they're working well) and the fact that she's trying to heal from surgery is enough for her to be dealing with, why create another problem.

Payton Rocked the Surgery

She looks a bit puffy but that's not her fault since she was given a lot of fluids in the surgery.  They will let her de-puff a little on her own then tomorrow they'll consider a diruetic if she still needs it.

Her surgery didn't go fully to plan.  She didn't get the tubes placed laparoscopically as hoped but in the end it may be a bit of a good thing.

Her incision is a bit smaller (about 2 inches) and follows her old one so that is good.  Also, it should still be a bit numb so her pain level should stay minimal.

The reason they couldn't do it laparoscopically was because she had too much scar tissue which apparently inhibits vision with the scope.  So they had to open her up. 

It worked out because her stomach was a bit twisted and they were able to untwist it a bit so that will help her manage her feeds in the future.

There was a small (but unconcerning) complication or two.

The first being they were trying to manually follow her bowels for tube placement and when her bowel tracked to the back of her abdomen it became more difficult.  After a small puncture to her bowel (which was sewn up) they decided to insert the tube blindly.

The second complication was the blind tube insertion into her bowels.  They placed it as far as they know it 'should' be but they aren't sure it actually travelled through her bowel as far as it should be (or if it coil in one place).   They will do an x-ray tomorrow to confirm.

If it tracked where it should have then great, all systems are a go.

If it didn't they hope that after a couple of days, the direction of traffic in the bowel will pull it down and stretch it out.

Worst case scenerio is if it is coiled and it doesn't straighten out then Radiology will be able to straighten it with a wire - problem is they won't do it for 2 weeks (they don't want to work on freshly operated patients so they delay it for minimum 2 weeks).

Payton's drainage tube into her stomach went in with no problems.

The above picture shows how Payton will be fed for possibly the next 2-6 months. Its not pretty but I wanted to include it for any possible CDH parents to see what they may or may not be facing in the future. 

We have seen so many CDH babies prior to our time in the NICU that we've been very well prepared on what to expect.  What I didn't do was much research into CDH babies and feeding issues.  So to be honest, this has been the most 'unexpected' thing Payton has undergone.  It really has made me realize how very important sharing information has been, no matter how difficult.

Its also made me realize what a beautiful gift it has been when parents have shared photos of their little ones going through this process.  So for all you parents who have watched their child go through a difficult proceedure and have posted it on the internet for other parents to see (and be prepared for what is in store for them) THANK YOU.  Thank you for the very difficult and selfless gesture of sharing such a difficult moment with those of us who will follow.

In closing, I just called the NICU.  Payton is still 'out' from her surgery but is doing well, though still vented.  They will wait till she's fully awake to determine how much morphine she needs.  If she needs a lot they'll keep her vented (since morphine slows her breathing).  If she's handling the pain well they will extubater her (hopefully for the last time ever!!)

In Surgery Now

We're just waiting for Payton to come out of surgery now.  We left her shortly after 1 and we're now waiting for the approximate 1 hr surgery (with prep ect its estimated 1.5-2hr).  It will also depend on what they see when they go in (laproscopically).

Round 2

Payton's second surgery is scheduled for 12:30pm tomorrow.

She's the 3rd in line for surgery so it could be earlier or it could be later depending on how the 1st two go.

Either way, we'll be hanging out at the NICU around that time.

There are a few hurdles we will be aiming for after her surgery.  Because she's on sedation and so forth she will be intubated again and on the vent.  It won't be until she's once again on low morphine that they'll extubate her again so we hope that her body tolerates the surgery well.  Hopefully since they're using the same scar it won't be as sore since through experience, my section scar still has a lot of numbness - hopefully her CDH scar does too.

I'm not sure how long they'll wait to start feeding her, they mentioned the next day (which would be Saturday) and I'm not sure if it'll be small feeds again working our way up to full feeds.

Another CDH angel mom was ever so kind to offer a comment on an issue called Pyloric Stenosis and I put it in my blackberry to remember to ask about it but I forgot. The surgeons said they will be around in the morning for any more questions I do have so I'll try to ask about it then since this would be my only opportunity to do so.

Payton has been so great to hold lately.  She's been easy to manouver around and we will play (well I play and she lies there) while I move her legs and pull on her arms.  Work to do a bit of tummy time on my chest/shoulder and move my head from side to side while she tracks me with her eyes.

It may be a few days before I get to hold her and interact with her so much again and I'm going to miss that.

I'll sign off with a few extra pics of Payton.  Here's a pic of her belly button.  The 1st day after her nub finally fell off.

Here's another where she's looking so cute with the soother concoction the nurses devised since she loves sucking on her soother so much.  She's very loud too and can be heard either sucking or snoring from the other side of the room.

Ok, Back to it being Surgery Again

Well, that's what I get for trying to put a happy spin on a not so happy prospect.  It changes.

I learned today that Radiology wouldn't be able to place Payton's tube for 3 weeks.  AND, to make it worse, they met with the surgeons and after reviewing Payton's file have determined that, given that Payton has unique anatomy, they aren't even 100% sure that placing the tube radiologically would be successful.

So, we have been given the choice.  Place the tube Friday via the surgeons or wait 3 weeks to place it radiologically and run the risk that it doesn't work.

In the meantime surgery has requested OR time on Friday to do the proceedure.

There are pros and cons to both but the clincher is with the actual surgery, Payton could be home as early as a week from Friday.  With relying on radiology she's in the NICU for at least another month.

So while we haven't signed the consents yet, I think we'll be relying on the surgeons to place her new feeding tubes.

The surgery involves cutting into her abdominal wall and into her intestine.  They will then place 2 tubes (one for drainage one for feeding) and then tie the tubes to her stomach and then her stomach is tied to her abdominal wall (to keep everything in place and from moving around).

The thought is that with everything tied, the likely hood of the tube coming 'loose' is low and it keeps things secure.

There are good and bad things about this route.

The Good:

They will place 2 tubes - one drainage and one feeding tube.  Payton will have NO tubes on her face (or tickling the back of her throat).
Its happening sooner so Payton should be home much sooner (we're still on her schedule but it looks good if she tolerates things well) and she'll have things out of her mouth/nose sooner (we may even do oral feeds very soon though likely her drainage tube will simply drain it, she'll still be getting the taste and sensation of feeding).

The Bad:

- Payton will go back on the vent.  Apparently she needs to be back on the vent for the surgery.  Its part of the process when the babies undergo anesthesia and it also relaxes her abdominal muscles that is essential for the surgery.
- Payton will be 'cut' open.  They will use the same scar as her diaphragm surgery so she won't have any more scars (not that its a huge thing for us) but that means that she may bleed a bit more (apparently new scar tissue has lots of blood vessels that can bleed more) so she will also be on standby for another transfusion.
- There are risks (like any surgery) so we'll be approaching this like all the invasive proceedures Payton's had, with caution, hope and faith in the medical team.

Calling it a New Name

After talking to the head surgeon today I've decided we're going to give Payton's feeding tubes a new description.  We're no longer referring to them as 'surgery'.

The description given as to how they place the adominal feeding tubes include a needle that goes into the stomach and then into the intestines.  The hole is then stretched and a coiled tube is then fed down into the small intestines for placing.

I've decided that this doesn't sound like surgery at all so we're not going to label it as such.  I don't have a name for it but if anyone has any suggestions I'm all ears.

Payton was a dream today.  Her feedings have been slowed as she gets closer to her full continuous feeds.  She has also gained a bit of weight (yesterday she had lost a bit but I contributed it to her stomach bleed and temporary halted feedings).

Still, I was very surprised to see that she weight over 8 lbs now (8 lbs 2 oz to be exact - recall she weighed 6 lbs 13 oz at birth).  As a baby who's been mostly fed via IV (and hasn't yet hit her full feeds yet with a stomach that is expelling most of those feeds) we're pretty happy about her gain. 

While holding her she did fuss a bit and it was nice to think that as a healthy baby she would fuss also.  So I ensured that her tubes/lines weren't pulling and that her PICC hand wasn't bent funny and then I just did typical baby soothing gestures to calm her.  These seemed to work just fine.  She didn't have any gagging so I was content to let her fuss just a little because babies do fuss and as a baby, she should be allowed to fuss.

Grandma Val was there and held her for a bit.  It was the 1st time I was able to interact with her on that level (rather than her propped up in her crib).  I was able to put my face in front of hers and she could track my movements back and forth.  I played with her hands and moved them in front of her face so she could feel the sensations while looking at them. 

Finally we did some leg movements.  One of the things that's been in the back of my mind is that Payton's digestive track is really scrambled.  Even a healthy non CDH baby has bowel issues and gassy tummies and when they do, relief can be had by moving their little legs up and down.  I was curious with the fact that with Payton, she never has that because she's always in her crib (or held very tenaciously with copious wires/tubes coming out of her) that she doesn't get 'played with'. 

So today I moved her legs up and down, back and forth and let her push off of my hands if she wanted to.  I think she liked it. It's going to be our exercises every day now even if I don't have a helper to hold her for me so I can be on the same level as her (she sits high in her crib so I'm always looking sideways at her).

On another note, her foot IV is gone (yay, one less wire).  That was the line they put in after she had her stomach bleed and now they're giving her the medicine for her tummy orally so the line came out.  Yesterday I counted 12 tubes/lines into her but today, while driving home I could only remember 9 of them off the top of my head... so I'm sure I'm missing something but for now I like the idea of only 9 to go so we'll rely on that for now.

Oh, and before I forget.  Meeting with the head surgeon, he mentioned her feeding tubes could be placed as early as Thursday but they would let me know.  He also mentioned (contrary to what the surgeon said yesterday) that they would only insert one tube into her intestines and they would move the drainage tube into her nose (so not clearing her face and back of the throat like the other surgeon said).

So there you have it, even this far out with Payton's care we're still recieving mixed information but we still have a plan and it seems like a decent one.

Here's a couple photos of Payton...her hat today that I finally had a chance to try putting on (didn't work too well but better than trying while she's in her crib).

I had to include a comparison between Payton and Olivia and how similar they look.  Here is a picture of Olivia at 3 weeks (close to the age Payton is now).

Cozy cuddling with mom.

Wide Eyed.

Here's a hat I've been just waiting and waiting to put on.

Still Doing Great Even if We're Taking a Different Path

This is a hard update to explain.  We continue to experience a very 'on the fence' type of feeling when it comes to Payton and her CDH (and recovery).

As parents, we die a little inside watching our child go through this process.  Watching her go through surgery, cry in pain, not move her arm/foot because it hurts too much from all the wires that are going into her, watch her dry heave over and over as her little stomach fights to keep the bile down but her body rejecting it.

Or, leaving your child every day (or not seeing her at all some days) in the care of strangers (albiet highly competent strangers) for 18 hours a day because your 3-4 hour commute, job and other child require the remaining time. 

Its hard and it wears on you. 

But on the flip side, Payton is doing well all things considered.  She has exceeded all expectations with her breathing and that it isn't even a concern any more while she's in the NICU is nothing short of amazing for us. 

She's alive and it looks very good for us having many years ahead of us to enjoy who she is and who she will be one day.  As parents who know how very important that is, we also remind ourselves daily/hourly how very lucky we are.

Still, hearing the news today that Payton will be having surgery again was hard.  Its the 1st time I shed tears since they wheeled her away for her diaphragm surgery.  I didn't want to cry.  I tried to hold back my tears, because if someone had told me on July 27th that Payton would have virtually no problems getting on track with her breathing but her feeding would lead to another surgery I would have laughed with joy and excitement because I was so afraid back then with what our future held.

So, it appears that Payton will have another surgery.  This is from my conversation with one of the surgical team members today.  She did say that they still needed confirmation from Dr. Blair (chief surgeon) but that its at the point where its time we change things up for Payton.

The surgeon made the comment "how long do we continue making her uncomfortable with the nasal and mouth tubes? "  This comment was enough to get me appreciating the fact that this next step in Payton's journey has its 'good points' despite the fact that surgery is always a risk.

They will place 2 tubes through Payton's adominal wall with one feeding tube going into her intestines and the other going into her stomach for drainage.

The downsides:
- Another surgery: more pain for Payton and it brings an increased risk (as all surgery is risky) but I understand its a fairly simple surgery (much simplier than the hernia repair).

The upsides:

- Payton will no longer have a tube down her nose and mouth (both tickling the back of her throat which likely aids in her gag reflux and admittedly must cause her discomfort).
-  Payton will be able to come home with both tubes and we'll have more time to hold her, less time with her stuck in a bed with strangers caring for her.  She'll soon be surrounded by the familar sounds of 'home' and around those who love her - way better than a hospital.
- We'll learn a new skill (feeding through a tube).
- Livy will get to be the big sister finally. 

So in summary, the title of this blog entry really sums it all up for us.  When all is said and done, tears or not, we're still doing GREAT even if we're taking a different path.

Slow Day (but we like slow days now)

Today is sort of a slow day for Payton.  Not really any progress, just getting back to where she was 2 days ago. 

They got her back up to 12 ml/hr of feeds by the time we got to the NICU and she's off the IV meds they were giving her for the stomach bleed (but leaving the IV in her foot in just in case).

BUT, when I was holding her today she started with some blood in her drainage tube again. The nurse was pretty nonchalant about it so I'm going to take her cue and assume that its expected and not worry too much about it.  She did say it could be the tube rubbing and Payton did a bit of gagging after we moved her from her crib onto my chest.

They have slowed her feeds again from increasing every 4 hours to every 6 so hopefully that day break was enough to let things get caught up and she handles it well.  She had another poop this morning so that continues to 'work' like it should despite the other little issues she's having.

Here's a couple of pictures.  One's of Payton's crib with her new friend.  She's no longer wearing clothes (partly because of the PICC which is in her arm and partly because of the fact that she pukes so much) so we decided now was a good time to spice up her crib.  To give her some individuality but also because she's doing so well that a friend hanging out with her won't cause too much trouble.



Here's a quick shot of Livy today since she looked so cute in one of her new birthday presents - mental note "no more size 3 clothes since they barely fit".

And a picture of the girls soon-to-be play room.  We're painting a mural on the wall and this is the early (1st 2 hrs) stages of painting.



Stomach Update

They did an x-ray and ultrasound on Payton's stomach and upper gastric system today but could find no reason for the bleed.

When we went to see her today she was lying fairly flat in her bed (normally she's inclined to keep her upright and limit vomitting).  I asked the nurse if this was a new position and the nurse said that Payton puked so much that she soiled every one of the slings they had so they had to lay her much flatter so she wouldn't slump to the bottom of her crib.  Despite being so flat her stomach and reflux is doing very well.

Her stomach's settled down and Payton actually had a good morning (after her rough night).

She also had a poop in the night so that's 3 nights in a row - :D

They have cut her feeds in half to help settle her but now she's doing so well she's on a fast track to get her back to where she was before her bleed.  She's being upped 1ml/hr every 4 hours so by tomorrow she'll be back to where she was yesterday.

I overheard the nurse talking to the doctor that she had checked one of the babies stomach secretions and they were very low...so low that she thought there may be a blockage in the drainage so she cleared the tube but there was no blockage....she then went on to say that her stomach secretions are way down.   There's only 6 babies in this section of the NICU (and our nurse only has 2 to oversee) so I'm going to assume that she was talking about Payton (I didn't want to clarify because I liked the assessment enough to run with it as a positive instead of the slim chance she was talking about another baby).

So I don't know what to make of this but from the brown discharge she's been having for the last couple of days its likly that she's had some bleeding (old blood) for a little while now and perhaps its finally just cleared.  Cleared enough that her current secretions (which I did see) are almost colourless and the volume is low.

She is in some pain and they did have to put another IV into her to give her meds to help with the stomach bleed.  So now she has her PICC line in her hand (which she doesn't move so I'm assuming its too sore) and the IV in her foot plus the inflammed old PICC spot in her other foot which is looking great but we've been told its possibly still tender since it was so recent that the line came out.

Still, she's doing great today despite the early morning phone call letting us know that she had a rough night.

Hopefully she bounces back quickly from her stomach bleed like she did with her lung bleed.

Bad Night for Payton

Payton had a rough night last night.  She had stomach bleeding and was very upset.

I'm pretty sure my oral feeding idea wasn't the cause (goodness I hope not) because the brown drainage from her stomach may have been old blood but through the night she had fresh bleeding as well as the old stuff.

I'll know more when I get there today but for now, feedings have been halted again.  I'm feeling very sorry for the little trooper today and all we are expecting of her and putting her little body through.

One less PICC

Her foot PICC line is out!!

It came out sometime during the night when one of our new favourite nurses was caring for Payton.  I'm not sure if she got it out but we're giving her all the credit anyway (Thank you Allison!!!)

Our good night chat with Allison last night also resulted in us learning that Payton had a poop at one point (the night before but the day nurse wasn't very forth coming with that info). 

Today when we were in the NICU I changed Payton's diaper and saw some yellow (sorry TMI :)) poop smeared on her diaper so I'm doing a bit of a happy dance.  Yellow poop is from breast milk so its somewhat making its way down her intestines :D.

We made it in for rounds today and got to listen to the NICU team go over her care.  If I understood correctly they are looking to give her another week (so week after next) to figure out feeds before looking at a surgically placed feeding tube so maybe we have a bigger grace period to let her intestines figure things out.

They have also increased her feeding frequencies.  So now she's being upped 1ml/hr every 6 hours.  So she's now at 12 ml/hr which is just over half feeds (continuous). In 2 days she should be at full feeds and maybe, if things are absorbing we'll be that much closer to getting her final PICC line out of her.

Also related to feedings, I have had feedback from other CDH mom's and from that feedback I have learned about some of the reasons behind oral adversions in CDH babies.  One being where a baby doesn't do well with milk after learning to orally feed because they aren't used to the feeling of milk hitting the back of their throat.

So at rounds I asked if we could start giving Payton some milk in a bottle nipple (not enough to use the actual bottle) so she gets used to milk in her mouth, the taste and the feeling of it in her throat.  The Neonatologist thought it was a grand idea so we're giving Payton 5ml per shift of breast milk orally.  It gets drained out of her tummy by her drainage tube so its not adding anything to her calorie wise but it will hopefully help prevent too much oral adversion later on when she can start stomaching feeds.

On another note, the drainage from her stomach went from a greeny colour to now a brown colour.  The surgeons even asked to confirm what colour feeds she was getting (because apparently there's brown breast milk?? joking).  I'm not sure if that means her intestines are backing up even more than before (perhaps with the increase in the feeds??) but they are keeping an eye on it.  From the little bit of breast milk I fed her orally it turned the drainage fluids orangy (so no keeping the milk down quite yet) so hopefully that will go back to green even with the increase in feeding again.

Payton is looking so great, its hard to think that she's still needs to be in the hospital.    Looking at her I can't stop believing how lucky we have been with everything. 

Another Change of Scenery

Payton's been moved again!!  She's still in the NICU but in a room that's for more stable babies.  So we're very happy for that.

Everything else is pretty much as it was yesterday.  Her old PICC line is still stuck in her foot.  She's still got a very red and sore leg from that PICC line and her stomach drainage is still working to prevent her from reflux (thereby confirming that her intestines still aren't working).

I did get a chance to ask one of the surgeons at what point they will decide to do something about it.  The surgeon said they will give her till next week but that they are pretty sure she's going to need a tube surgically inserted into her abdomen and into her intestinal wall.

So I think we're down to really low odds that Payton will 'figure it out' but I want to point out how many other low odds we keep hitting.

Chance of CDH in a baby:
1:2500 (at least, some studies show 1:4000)

Placenta Previa:
1:100

Chance of a PICC line becoming infected:
1: ~100 (doc said she's put in hundreds and has only seen it one other time)

Chance of a PICC line becoming stuck (Dr. said she's never seen it but has heard of it).
1:??? 500???  (best guestimate :D )

So if Payton has a 1% chance (no idea but figured that's a pretty low odds) than really, in the realm of her beating the odds she has a chance for her belly to figure it out by next week :)

Ahh, the rambling thoughts of a diillusioned mother.

Its not Bad News Yet

We still don't have concrete answers but things aren't looking as wonderful for Payton as they did in the early days.

Its important to mention that she's still doing extremely well with her breathing and that in itself is one of the biggest hurdles of a CDH baby and we're very fortunate that its no longer an issue with Payton.

Its the 'other stuff' that's proving to be her nemesis.

Her PICC line in her foot definitely 'looks' infected (here's a video of Payton in my arms with a quick peek at her leg) and her leg is very sore.  Payton doesn't cry often but everytime we moved her she cried in pain so her leg is very sore.  They started her on antibiotics so hopefully in a day or 2 she'll be feeling better.  Infections scare us.  Its what caused the loss of our twin boys so we're very weary of infections and we'll be keeping a close eye on this little bundle (and questioning everything along the way - I'm sure the nurse was a bit annoyed with my 20 questions today regarding everything :)

They put in another "PICC" line in her other arm (recall her 1st PICC line initially went into her arm) and after the earlier post they did another 5 x-rays (a total of 9) to try getting it into the right place.  They never told me that she had that many, I overheard a guy from Radiology commenting about it and later hearing him on the phone with the doctor asking why one of the babies had had 9 x-rays...apparently that's a lot because he did mention that she shouldn't have any more. 

They didn't get the PICC line in properly.  Apparently Payton has weird anatomy (like we didn't know) and her veins branch funny so that the PICC line kept veering off course.  Thus, they didn't get it placed where they wanted it but they're hoping it holds for as long as they need it. 

They aren't really calling it a PICC line since its not placed properly so they're calling it a long line or something like that.  She's still able to get her TPN and nutrients with it (and now antibiotics) so hopefully it'll suffice.

On another note, I found out the reason for the dye test request and the reason it wasn't done.  Apparently they suspect a blockage in Payton's bowels.  Thus, surgery wanted to do a dye test on her intestines to map them out to see if they could identify a blockage.  They put the request in and radiology this morning reported back that the test they wanted to do wouldn't provide them with that info (as per the nurse).

Surgery was by her bed later in the day and they didn't mention the test but did mention that they were going to watch her a couple more days and hope that the drainage from her stomach would lessen.  The one surgeon said it could happen on a dime so they would give it a bit more to settle down. 

Again, our nurse shared that they have been making noise about the potential for a blockage and are getting impatient waiting for her stomach to start working.  So it may be that we need to start preparing ourselves for another surgery.  We hope not but we know that if there's a problem, fixing it sooner than later is best for Payton.

On a good note, Payton is now up to 6 ml / hr on her breast milk feeds.  She hasn't pooped in 2 days (but not uncommon for breast fed babies to wait a bit) but still, her feeds are going up so there should be some poop in there somewhere.

Still, she's doing well with not bringing up breast milk (the OJ tube in her stomach is just bringing up bile, but a lot of bile which is why they're concerned her intestines have a blockage) and they are now increasing her feeds but another 1 ml an hour every 8 hours.

So by tomorrow sometime she'll be officially at 1/2 feeds (1/2 being 10ml/hr). Again, its continuous feeds so the next step would be getting it all down at once rather than continuous.

I asked today about when they would start mouth feeding and the doctor said once Payton's at full feeds they may start introducing feeds orally.  So maybe in a couple of days we'll be able to start giving her some milk via a bottle.  I think to some degree it'll depend on how her stomach is working (or not working).

So that in a nut shell was our day.  Here's a few pics from today to show that it wasn't all bad and that despite Payton's busy day we did have some peaceful moments (and Dwayne got in on the cuddle action after I left so she did get some good cuddling today which she more than earned).

A PICC Hiccup

Well we escaped one issue today only to run head first into another.

I received an early call this morning from Payton's nurse (first assuring me everything was fine with Payton - bless her heart) letting me know that she wouldn't be undergoing the dye test with Radiology (here's another example of differing opinions conflicting). They determined that it wouldn't affect her current feeding regime so maybe a good thing.

At 11am I received a call from one of the NICU doctors that they suspect an infection with Payton's PICC line (the one that was put in her foot a few days ago). They aren't sure if it is an infection (or just irritated) but they are treating it as an infection.

They are currently working on putting another PICC into Payton's other foot but are having some difficulties (recall once in they work the line up her veins close to her heart). She's had a number of X-rays already (4 I think she said) and the doctor said they'll try one more before leaving it for a bit.

I'm currently sitting in Starbucks waiting to hear that they are done - I'm not allowed to be there since its considered a sterile procedure. Honestly I'd rather not be any further of a distraction.

The little bear is currently hyped up on a bit of morphine to keep her calm (something I could use right now :) ).

For now that's all we know so I'll be sure to update as we learn more.

The Feeding Hurdle

I'm not sure how to explain this next step in Payton's development because honestly, I was too tired to ask.  It sounds terrible but I was just too tired today to ask only to stress about something else.  Instead, I wanted a peaceful day with Payton and we had just that.  No 'worries' to think about while Payton and I cuddled for a couple of hours today.  We let our problems sit for a day and just focused on cuddle time.

The next hurdle is going to include Radiology but I'm not 100% sure what they're looking for (or if they know what they're looking for) but I do know they intend to do a dye test on her digestive system to see what it looks like.  The dye will run through her stomach and intestines and they'll be able to map it all. 

Perhaps they're looking for a blockage (I think other CDH parents would be able to chime in on this) or perhaps they're looking for an appropriate place to put a feeding tube in surgically (since this has now been brought up to us 2 days in a row).

Whatever the reason we should find out tomorrow as that's when they expect the test to be done.

On a good note, the NICU doctor today said she checked Payton's hips and today they showed no abnormality.  So they'll continue to monitor it and keep fingers crossed that they were just a bit overcautious and all is fine.

Payton Update

I missed Payton yesterday since we spent the entire day with Livy for her Birthday.  As a result today was mixed with a bit of tears as I didn't realize how much I missed the little one until I laid eyes on her.  It seems incredibly wrong to have left her for for so long but I also know how much it meant to all of us to just have one day away enjoying the day and enjoying Livy.

Payton has made some progress on her feedings.  She is now taking 2 ml of breast milk per hour (straight to her intestines) and her stomach suction is gone replaced by a simply stomach drain.

The idea is they will up her feeds every 12 hours by 1 ml per hour.  So by tomorrow (Aug 16th) she'll be taking 4 ml per hour of continuous feeds.  Once she's up to ~20 ml per hour she'll be at full feeds...then the next step will be 60 ml in one feeding (since we can't attach her to my breast for continuous feedings once we get home :).

We also have to get her milk into her stomach if possible.  So thats another hurdle and I'm not sure when they'll want to start introducing a little bit to her stomach.

Here's a few pictures of my little Patty Cake.

Snug as a bug in her little crib.

Showing off her name!!

Her current set up.  Rumour has it she may be transferred to the intermediate nursery soon :)

I have a picture of Auntie Deanna holding the little one as well but for some reason it won't save from my Blackberry.  Auntie D acted as surrogate parents for Payton on Livy's birthday as she went to the hopsital to hold her for a time so she was held by someone she loved that day.

Happy Birthday Livy!!

Today was a whirlwind of activity as we got ready for Livy's 2nd Birthday. 

It was a day I've been wishing would stay away for a long time - the day my baby girl turns 2.  Its only 2 years but man, its so true what they say that time really does fly.

The Luau party was great but time consuming.  It was such a fun day that Livy didn't get her nap but it worked out because we got her back onto her sleeping schedule again (ya for 8:30 bedtimes).

Here's a few pictures of Livy's Party (and gift opening that had to happen the next night since she was too grumpy on Birthday Day).  Thank you to everyone who came and enjoyed the day with us (or dropped of a little something).

Luau Land

Party Games = messy

Luau Cake

Birthday Girl!

Ópening Presents with the cousins.

Out of Solitary Confinement and into General Population

Payton has been upgraded (or downgraded, depending on your point of view).

For the last several days she's been deemed well enough to join the general population of babies in the NICU.  We've been expecting the move especially since her board now shows a yellow magnet instead of a red but today was the first official day of her being out of the solitary room where they put her because she was initially so sick and sensitive.

She's been 'ok' with the move.  The nurse today said she was a bit fussy and its not sure if its due to the increase in noise/light etc or whether she's having some delayed withdrawal from the morphine that they stopped yesterday morning (the nurse said it could be either).  Personally, I think its the noise but I'm very glad she's been moved.  She's doing so well she needs to start living life outside the bubble (or square room, but you get what I mean).

Her feeding is still a challenge.  They stopped her feeds yesterday but started them again today this time doing something a bit different.  They now have a feeding tube down her nose (which goes into her intestines) and a suction tube in her mouth that goes into her stomach. 

Essentially, they're feeding her (albiet very small amounts, 1/2 cc of milk every 3 hrs) but suctioning any back up bile in her stomach to prevent her from vomitting.  So I think the amount of nutrients she's getting are about the same as if she was puking it all back up, but this way her body isn't chucking all the time.  It hopefully will help her stomach/intestines digest some milk but not get upset to vomit thus not teaching her body to have that reflux action all the time. 

Time will tell if this is a workable plan.  Here's hoping because right now Payton's feeding is what is keeping her in the hospital and is what is expected to keep her there for such a long time.

Bragging Rights - Well Earned

As promised you send us your pictures donating blood and we'll happily brag about you.

Here's Payton's Uncle John donating.  Apparently they took more than just blood from him.  He was well utilized in that they got both blood and platelets.

Yay Uncle John!!!

Forgot to add...

that Payton is fully off the morphine now.  She did go through a bit of withdrawal the first time they tried taking her off completely (Wed night) but this morning they cut her off and she showed no ill effects. In fact she just slept all day!!!

New Tube = Feeding??

Payton got her new tube today.  Its still a bit coiled in her stomach but it is down into her intestines...now its just a wait and see to see how well that goes.  When I was there today she had 2 spit ups so hopefully that's just from the dye they used in radiology to get the tube in the right place.

One of the NICU doctors discussed the next steps and what we can expect.  Its a lot of wait and see's and they believe she could be in the NICU for up to another 4 weeks.  While it seems like a long time, we're still so incredibly happy that her breathing is no longer an issue (they are only doing blood gasses once a week and that's only with other blood work so they think she's totally out of the woods on her lung issues).

Still, we do very much look forward to the day that we get to bring her home.  We just need to learn patience and like all things, time will solve the next hurdle.

There is a mild concern right now with Payton's one hip.  There is a potential for Payton to have Developmental Dysplasia of the Hip.  They aren't 100% sure but they have identified a potential 'weakness' or anomoly of one of Payton's hip (not all the time just some of the time) and so they're going to keep an eye out for it.  The good thing is if she has it, they caught it in time to correct it (if uncorrected it will lead to life long walking issues).  The key to correcting it (if she has it) is a brace around 6 months age.

The good thing is she has time in the NICU for it to be observed and if they continue to notice it then they will have the bone doctors (their name not mine which I'm guessing isn't correct :)) take a look at her before she's discharged.

On another note, Payton had clothes on when I arrived today.  It was soo sweet and Chantal (one of our favourite nurses) felt she needed to sport some clothes so there she was dressed in pink.  By the time I left we were thinking about her 3rd change of clothes but opted to leave her rest in peace in the event she chucked again (its a bit of a production changing her clothes which the jostling may lend to further stomach upset).

Tomorrow we'll know how she's doing on her new tube and fingers crossed she gets her feeds up to a point where we can take out her PICC line.

Full Frontal

I'm updating this fairly late tonight but partly because of the news we learned earlier and just digesting it.

As far as Payton is concerned we're still doing well and today was a treat to arrive in the NICU.

This is the 1st thing I saw today - A very bare face!!

I held her as long as I could looking at her and loving the fact that she's doing so well.  Tomorrow won't be the same as she'll have a feeding tube back in again.  Her feeds were halted at 6 am today (again) because her belly isn't tolerating it still.  So they thought to give her very upset tummy time to settle before they try putting another tube down (again trying to place it in the intestines). 

The next time they try it will be with the help of radiology (and multiple x-rays) as they try to manipulate it where it needs to be.  Apparently this is difficult with CDH babies as the opening to the intestines isn't where it is on a normal baby.  So it'll be a bit of a trial and error proceedure and they want her tummy to be well rested for the little ordeal.

On another note I got another wonderful surprise in the NICU this morning.  Each day I look at the board to see where Payton is.  Beside her name is always a red dot.  The red dot beside her name indicates she's a sick little girl.  I've been hinting the last few days that maybe its time to down grade her magnet.

Today when I arrived this is what the board looked like beside Payton's name.

So Payton's officially been delisted out of the Red zone and we're now Yellow.  Next step is Green and I imagine once she's feeding better (or at all) we may be candidates for Green.

Here's a picture of Grandma Val holding Payton.  Now that she's doing so well we're letting others hold her.  She now tolerates touch very well and just loves been cuddled.

Angel Grace

I learned tonight that another one of our watched Cherub's has grown her wings - Angel Grace.

This beautiful little CDH baby fought so hard and was an incredible inspiration all the while that we followed her journey. 

On August 9th, Grace grew her wings.

What a heartbreaking week it has been for the CDH community and it brings tears of sorrow to my heart to know so many have had to say goodbye to their sweet little cherubs.

We continue to hold Payton tight and are reminded that life is so incredibly precious and fragile.

Many hugs to Grace's family as they navigate these very difficult days/weeks/months as they come to terms and say goodbye to their little angel.

Is this the Sound the Other Shoe makes when it drops?

Payton's progress has been so steady and wonderful I keep thinking the other shoe is going to drop.  And while Payton continues to do very well (aside from the feeding) last night we got our very first real hiccup in our time at the NICU.

There has been a case of staph infection reported in one of the babies in Payton's area of the NICU so the NICU is on 'lock down' (or their version of it).

No new babies in and no babies out for 2 weeks.

Payton's had her own room since she arrived in the NICU and has a constant nurse through her day (other than the relief nurse her nurse is her's alone) so there's a very small risk to Payton with cross contamination.  Still, there is some risk.

I'm very fortunate that Payton's been kept isolated from the other babies and I can't imagine the fear that other parents are going through who's babies were in the main area.  I'm not sure how many have had surgery but even the PICC lines that go in for feeding/medications introduce a risk.

On another note, Payton's feedings have been suspended again (at 6 am this morning) until we can get her to radiology to properly place her feeding tube into her intestines.

It could be that her vomiting is in conjunction with her morphine withdrawal (she's back on a small amount after they stopped it last night at 9 pm) and hopefully if that's the case it'll ease soon.

Still, all things considered she's doing wonderful and despite the 'new drama' in the NICU we're very pleased with her progress.

One down and one to go

This is Payton's new look.

She is still waiting for her ECHO and cardio to see how her pulminary hypertension is doing but she's doing well so for now they're relying on what the baby is saying and not the tests.

Her feedings are another story andd aren't great. They're thinking of moving the tube lower in her digestive system (intestines) to bypass the stomach so they can get her nutrition from milk and not the IV.

Still, so happy for where we are today.

Have I mentioned how incredibly lucky we are???

Just a few hours after posting this morning I went back into Payton's room to see this:

Such a beautiful little face with very little on it.  Even better was when I got to hold this:

She's only on the nasal prongs due to her pulminary hypertension and her ECHO tomorrow will determine if we can go down from there.    No hurry because even now she's a much happier camper.

Later in the day they tried feeding again.  The 1st feed went well but an hour and a half after the second feed she was spitting it back up and her tummy was very unsettled.  We tried some kangeroo care (holding her upright) and after about 20 minutes or so her tummy settled and she feel asleep.  It was so very nice to see how content she is in my arms and it makes me want her home so much more (so we can do that whenever we want).

I'm home tonight with Livy and tomorrow we're giving up our room at Easter Seals.  We know that its a special place reserved for families of very sick children and Payton has told us that we need to free up our room for another family. 

We can't believe how well she's doing - our little superstar.  Now all she needs to do is keep her food down in her belly.



I got to hold her

Last night I came back to the hospital after saying goodbye to Livy around 6:30pm (just before rounds) to see how Payton was doing especially since she had been fighting the CPAP since they put it in at 2pm.

Sure enough she continued to fight the CPAP.   She would settle for 5 minutes then cry for 5...repeat.

I slipped out during shift change and when I returned after the nurse hinted they may remove the umbilical lines soon and if so I could hold her.  So from 7:30 and on I hovered by her bedside comforting her every 5-10 minutes and holding her down when she tried pulling out her tubes.

By 10pm the doctor finally came in and they removed her lines from her belly button - the only thing holding her back from being held.

I then held her for about an hour (until I started almost falling asleep).  The entire time she was in my arms she was wide awake looking around.  Not once did she fight the CPAP nasal prongs and her oxygen levels stayed at 100% the majority of the time. 

The nurse asked if I had a camera for a picture (which I did in my locker) but I told her I didn't need a picture - that I would remember this moment for the rest of my life.

This morning Payton seems rested and isn't fighting the nasal prongs as much.  If it wasn't for her need of nitric oxide they would consider giving her a break from the CPAP (as they did this morning when moving her around and changing her bedding).

Payton has another ECHO this morning to see how her pulminary hypertension is doing (recall its the reason she's on the nitric).  I'm catching up on a bit of work and then going to settle in to hold her again.

Here's a video of Payton sucking on her pacifier.  Its wonderful that she's taken to sucking since she'll need that when we do start to finally feed her.  Last night she didn't care much for it (though took it here and there) but today she looks like a pro.

The debate about feeding is on again with possiblities of trying again today or tomorrow.  The good news is it looks like she's gained a little bit of weight with her IV nutrition so at a minimum she's being fed from somewhere.

Payton Update

It saddens me that such a positive day in Payton's world is surrounded by so much loss with other families.  Not because we worry that our progress is shadowed, but more because we know the pain two families are dealing with and as someone who's living this journey, your only wish is that all these precious little ones could do so well.

We have been humbled many times in our journey and the last few days continue to keep us that way and remind us how incredibly precious life is.  For those of you not touched by tragedy or the fear of losing a loved one too early, we only ask that you hold your loved ones close and enjoy each moment life has to offer.

As for Payton, she's had an amazing 2 days (so far).  Yesterday they decided that her limbo stage was at an end.  Back to the chickent and egg problem, Payton was so flemmy yesterday that she needed to be suctioned often (the vent makes her flemmy).  The flem and suctioning was enough to keep her restless and grabbing at her tubes so they kept her morphine fairly high. 

The morphine of course is the root of some of her problems (too much prevents her from breathing on her own, too little she desats too easily).  Also, the morphine slows her digestive system therefore hindering her feeds as well. 

Her stomach continues to back up (and her reflux was working over time) and they put a thickner tube back in and suction.

Finally it was determined that they needed to reduce her morphine and try to extubate.  

So yesterday they started cutting her morphine and today, based on various tests we were waiting for the news whether they would try extubation.  When I arrived this morning she was on room air with a vent rate of 20 and breathing at a rate of 45-55 (thus 25-35 breaths a minute are all on her own).

___________________________________________________________

Ok, so its taken me a while to finish this post.  I got interrupted with a few things today - the BIG one being Payton is extubated!!

Shortly after lunch she was extubated and I almost missed it thinking I had plenty of time to take a work related call.


So now she's got this wonderful contraption on her nose with relatively little nose prongs (not like the vent on her mouth and down her throat) - called a Bubble CPAP.

Her feeding tube is now down her throat so we haven't really 'lost' any tubes but they are different and they are a huge step forward (and though the vent is still on standby in the room we're having a mini celebration regardless).

She fought the change...in fact she downright hates it so far. She hasn't complained like this since she was born.  Her tiny hoarse little cries are a wonderful and welcome sound which will get louder and louder as her throat gets better from the extubation.  She does desat when she cries so I hope that she does get used to it soon.

I'm just hoping she can remain calm enough for her blood gas that they'll take to ensure she's getting enough oxygen on the CPAP.

We'll also know more as the day progresses to ensure she's not getting too tired breathing so much on her own.  I hope she's ready for this next step. 

AND if all goes well they'll be removing her lines from her belly button.  We've been told this is what is limiting us from holding her so it could be that we're holding her in the not too distant future.  But for now we're just going to focus on her breathing and hope that she tackles this challenge with as little issues as possible.

Here's a picture of her new look.  As Dwayne mentioned, someone needs to tell her that "less is more".  No pressure though...

Here is a rare treat - a bare face.

A full body shot.

The new look!