Payton's Argentine Shuffle

Payton's last few days haven't been stellar.  BUT before I get too ahead of myself, its important to say that Payton has NOT had a bad day in so far as a baby dealing with CDH is concerned.

She's had some really stellar days, but the last 2 haven't been great.  So Payton has learned how to dance the Argentine shuffle - a few steps forward and maybe one small step back (or laterally as we like to think at this point).

So to clarify a few things from yesterday. The doctors kindly dummied down a few things for me which ended up confusing me more.  They had explained what Pulminary Hypertension was (and that Payton hadn't suffered from it) and then yesterday they told me that one side of Payton's heart was showing signs of high blood pressure.  I'm not smart enough to have put two and two together until later yesterday when I asked if the heart pressure was signs of Pulminary Hypertension - it is.

So that was our 1st step in the wrong direction (foward being the right one).  Her pulminary hypertension was mild enough that they weren't sure whether to treat it or wait it out (thinking time following her surgery may help just as well).

Yesterday afternoon they decided to start Payton on Nitic Oxide to help with the pulminary hypertension and that seems to be helping keep her blood pressure down.  They started her on 20 (not sure of the units) and they then lowered her to 10 and later 5 - so she's coming down on it already.

They will be doing an ECHO today and coupling that ECHO with a futher ween to see how her heart does.  From listening to them talk at rounds this morning, this ECHO/ween trial and error is more for an educational point of view since they said its a perfect opportunity to study the effects on a baby's pulminary hypertension in conjunction with her nitric oxide weening.  Possibly because her pulminary hypertension is so mild she can afford a bit of experimenting for them to see any possible effects.

On another note...Payton's feeding didn't go well.  They tried, 12 noon yesterday was her 1st and by 4am they decided to stop trying to feed her.  She's been bringing it back up (I believe all of it) and though it shows some signs of digestion they felt it was important to let her poor stomach rest a bit before trying again.  So tomorrow they will try again.

Her lack of feeding sort of ties into her other issues right now.  That being she's slightly Alkaline right now (her blood draws).  They started her on a diuretic to help her drain the fluids from her body (from the surgery, both the intrustion and the void left in her chest that her body is working to make fluid to fill).   The diuretic they're using can cause her to be a bit Alkaline.

The other guess was that they had been draining her stomach so much (using an NG tube to suction it prior to feeding) and then her reflux the last day when she was being fed that they wonder if the removal of her stomach acid for so long has been enough to off set her pH levels to be a bit Alkaline.

The concern of her being too Alkaline is that it can eventually affect her respiratory functions so its important that they better determine now why her pH levels are a bit off (either her diuretic or the suctioning of her stomach acids).

Its something they will be watching and addressing.

On the more positive side, they will work at dropping her vent rate again (1st time since surgery).  Right now she's still on room air (21% oxygen) with her PEEP at 6 but her rate is at 55 (prior to surgery she was down at 40).

The comment today was that the higher rate setting made it difficult for her to out breath the vent which is important because we want her to have to work a little bit to breath so her body remembers to do so (rather than relying too much on the vent have having to relearn it later).

So they will wait till after the ECHO (so as to not change any settings before they can do that test) and then they will look at dropping the vent a bit.

The next step will be the morphine.  Its sort of a chicken and egg sort of thing. They must drop her morphine before dropping her vent too much because she's so sedated it takes away from her natural instinct to breath...but if they drop the morphine too much she fights the vent (trying to pull it out) and desatts more often because she gets easily aggitated.

So there will be a careful little dance involved where they will start tweeking things to get her working a bit more.  

Its important to stress that though today was a bit more lateral in her recovery, its still a very good day.

Oh, and important to also share that she had a bit of a poop last night and another little bit today. So these have been her 1st self generated poops - very little but still very exciting that her bowels are working in the right direction.

As for the rest of the family - it seems we've been having a bit of an Argentine shuffle as well.  Livy I think has come to the end of her rope with me being gone.  I saw her last night at friends for dinner and when it was time to go I said to her "Come on Livy, its time to go see Daddy".  Her response was "Mommy see Daddy too??" When I said no she started to cry and apparently on the trip home she was asking about me saying she missed me.

This morning for the first time she woke up and was asking about me and crying for me.  So I think, like me, her emotions are starting to get the better of her.  I'm going to have her in with me tonight and I'll juggle her tomorrow since I'm hoping tomorrow will be a good day pain wise for Payton (day 4 post surgery) and that she'll have a fairly restfull day that I can spend a bit more time with Livy.

I woke this morning feeling very inadequate as a parent and feeling very stretched thin.  It feels like no matter what I do its not enough so hopefully tonight is the turning point to being there for Livy a bit more and even though it may mean a bit less time here with Payton, I'm hoping that the time here with Payton will soon be better quality - that instead of simply looking at her and touching the odd toe, I'll be able to hold her.

Preparing for that Big Sigh of Relief

I know they said 48 hours before our 1st big sigh of relief after surgery but I can't help but feel incredibly relieved this morning.

While Payton is still hooked up to all of her tubes (a few more added pre-surgery) we're on her 7th day of her "doing really well", compliments of the NICU team.

This morning I caught morning rounds and her only small issue today is a slight heart pressure discrepency.  One side of her heart is slightly pressurize.  The current solution for this isn't clear.  They're not sure if they should treat it with blood pressure medicine since they admit that she's doing so well and thus far the slightly higher pressure on the one side of her heart hasn't affected the rest of her.   So she'll be getting a ECHO today from the cardiac team and the decision from there will lie in the cardiac team's hands.

The best thing is we'll actually lose a tube today (rather replace one for a better one).  I was there for the surgical team visit and its been confirmed that her NG tube will come out today.  One thing they look for once surgery is complete is non-coffee ground like secretions from the stomach.  Its caused because of all the bowel and stomach manipulation that occurs during surgery and repositioning her abdominal organs.  Last night and today that coffee ground fluid is no longer present so the NG tube can come out.

That means they will try to give Payton a little bit of food for her tummy today - I'm excited about this as it of course is one step closer to her recovery and while she'll have a feeding tube its a step forward.

Oh, and while we're on the topic of food (and all that it leads to) its worth noting that Payton passed poop :).  It wasn't self generated but after surgery the surgeon manipulated her colon and she passed most of her poop (meconium).  Without her eating (all her nutrition thus far is through IV) she won't make any poop so today's possible feeding will be the 1st step to getting her newly placed digestive system working properly.

This morning I also got to be present during an x-ray.  I believe this is Payton's 3rd x-ray post surgery and I'm very keen to see what if any changes are starting to occur.  Yesterday we learned that the 'air' pocket left from surgery had filled with fluid which was expected and welcomed.   The key of course is that her body will manage that fluid so that it doesn't build up too much and put pressure on her lungs/heart.  Hence the frequent x-rays. 

The good news is Payton hasn't really puffed up from her surgery.  She's looking good other than being a bit pale (admitted by the NICU team that its due to all her blood draws so she's obviously a bit low on blood - this being the #1 reason of a blood transfusion if she needs it).

The nurse with Payton today is very sweet.  She's been positioning Payton's head so that we don't see elongation of the face often seen with babies on a vent (because they lie their faces against blankets).  She's been giving me tips on how to prevent it/correct it when we get home. 

Home - a big word that we're not focusing on quite yet but the odd comment that includes it gives us a warm fuzzy feeling.

We are the Luckiest Parents!!

Payton had a very good night post surgery. We can't help but feel incredibly lucky to have such a little fighter on our hands and a CDH situation that has seen more good moments than bad.

Our nurses this morning even commented on how well she's done considering her situation.

They have mentioned that if things continue on the same trend they may start feeding her real breastmilk as early as tomorrow.

For now, we simply are focusing on now and how lucky we are.

Its worth noting of course that as much as Payton has amazed us all, her medical staff has also been incredibly amazing and we have so much to be thankful for. Both their ability and their compassion and care for Payton and us as we progress.

Payton's out of Surgery

She's still being hooked up in her room and we're waiting to see her.

They were able to close her diaphragm without a patch.

Intestines, stomach and spleen have all been re-located to where they belong.

First sigh of relief and now we wait to see how her little body handles the post op.

Surgery is Underway

After a bit of delay Dwayne and I walked Payton (and the medical staff) down to surgery at 12:15 pm.

With tears that would rival any Livy could produce we kissed her Good Luck.