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.