One big baby step

A lot has gone on in the past week!  Actually, a little over a week huh?  Wow, it's been awhile since I've posted.

I last wrote about how Wyatt's feeds were starting for the 2nd time and I'll continue from there. 

So after hours and hours and hours of him crying I went home and passed out for a few hours.  Since he threw up during his feed on Wednesday they decided to DC them for 24 hours.  When I spoke to his night nurse I expressed my concern with him taking a bottle.  I told her that I didn't think he was old enough yet bc it had taken him nearly 30 minutes to take 3 cc's of breast milk and would it be possible for him to just stick to the NG tube for now.  She agreed that was way too long and said she would bring it up during rounds.  Wyatt slept all night Wednesday and into the day Thursday.  I got there bright and early Thursday morning bc I wanted to be there when the dr's rounded.  When they came over to Wyatt's room, the attending stepped in the room and told me that she wanted to talk to me privately first.  She then continued on to tell me that "orders that are put in the computer are in there for a reason and they need to be followed" and how Wyatt was supposed to be fed with an NG tube yesterday NOT a bottle because he isn't developed enough yet.  Then she did that pause where you think a person is done talking, but they're not... so I started to defend myself {because DUH I WASN'T pushing him taking a bottle, in fact, I was doing the exact opposite} and as soon as I started talking she totally snapped at me "Let me finish".  Okaaayyyyyyy... whatever.  She finished reaming me in the nicest way possible as I sat there completely dumbfounded trying to figure out what the heck was going on.  She finished by adding on that sometimes parents have good ideas and so I can always share them whenever I want and walked out.  They talked about their plans for Wyatt for the day and then she looked at me and said "are you okay with that?" as if my opinion even mattered at that point.  I was so mad and still trying to figure out what had just happened with her {one sided} conversation with me that I just said yes and went back into Wyatt's room.  And as I sat there and played back the last few minutes in my mind it suddenly clicked.  She was blaming me for Wyatt getting fed with a bottle yesterday.  Somehow and someway things had been miscommunicated so badly that she had been told I pushed for him to have a bottle.  That was the dumbest thing ever.  And now I'm convinced that she doesn't like me.

Anyway

They tried feeding him again on Thursday and he threw up after about 1 cc.  He threw up a lot more than what he took in so the nurse stopped the feeds and the dr.'s decided to wait another 24 hours. :(  But he was in a really great mood. 

And I got to hold him!  I LOVE holding my guy. :)

The rest of the day was uneventful.  When we put him back in the isolate he fell asleep and he pretty much stayed asleep until Friday night.

On Friday, feeds were once again started, but this time they decided to try continuous feeds and put him on an antacid.  He would be fed 3 cc's over the course of 3 hours to see how his tummy would tolerate it.  Every time they checked his tummy it looked great and he wasn't throwing up at all. :)

 At one point during the day I was looking at Wyatt and trying to see if he looked like me at all.  Jared had showed me one of his baby pictures the night before and he and Wyatt seriously look like they could be brothers.  It's a little ridiculous.  Just saying.  So I asked my sister to send me some pictures of me as a baby.  And... well... it's official.  The Barney genes 100% dominated this baby.

Here are the three of us as babies

Me with my mom and with my dad

me a few months old

{I wish I could put a few more of Jared as a baby, but there was a fire in his parents house years ago and I think most of them were burned.}

 So yeah, definitely his fathers son :)

When Jared and I came in on Saturday the skin all over Wyatt's body was sloughing off. 

The dr.'s suspected another infection so the feeds were stopped and they did a skin culture, urine culture, and blood culture.  They went ahead and started him on 3 different antibiotics, just in case, and they took an x-ray of his bowels/tummy area.  The x-ray showed a shadow in the lower left quadrant and so they ordered an ultrasound to get a better picture of what it could be.  They told me that it could be nothing but they were concerned it might be a fungal ball.

The dr.'s also decided to bring in the pain management team to help manage his pain better.  Thank. Goodness.  I'm so glad that this was done!!!  I talked with the pain mgt. team about my goals for Wyatt.  At that point he was on morphine 4x a day with morphine PRN's (as needed) so if he really needed it, he could get morphine every 2 hours.  My goal for him was to get him off of the morphine.  Morphine is addictive and I was afraid of his body becoming dependent on the drug.  I told them that I would like for him to be weened off of that and to be on a different pain medication and eventually get him on something that I could give him at home if he needed it.  All of us were pretty much on the same page and they said they wanted to ween him off the morphine by about 10% a day and evaluate every day to make sure he was tolerating it.

Wyatt slept most of Saturday and Sunday, but would randomly move a little and make sad, I don't feel good, baby noises.  His skin looked about the same the next day, no real improvement, but a little more skin sloughing off.  The final report from the ultrasound came back, and it showed that everything was good, no fungal ball! Yay! :)

From my experience with his previous sloughs, all the areas on his body that are white, is skin that will eventually slough off within a few days.  Poor thing really did just shed everything this time.

Monday was about the same, slept all day, skin looked about the same.  The cultures were all pretty normal.  Blood culture showed nothing, urine, nothing, and the skin culture showed staff orius, which is everyones skin so they weren't worried about it.

On Tuesday his skin had a lot more pink in it.  And once again, he just slept all day.

When I called early Wednesday morning to see how Wyatt was doing, his nurse told me that his picc line had slipped.  They took an x-ray and the line was no longer central.  She told me that they would be discussing a broviac again during rounds that morning.  I got there around 7:30 and his skin looked amazing.  He was sleeping on his tummy and his butt and back looked so good!  When he woke up he was happy and smiling and acting like Wyatt again. :) 

At rounds, the nurse asked the dr.'s if Wyatt could get switched from the nasal cannula IMV to a regular nasal cannula or have it DC'd all together since he was just pulling it off anyway. The attending wanted him to still have some support, so they switched him to a high flow nasal cannula. :)  In regards to the picc line slipping, the attending said that she was going to consult surgery and have them place a broviac and then they could talk about possibly starting his feeds again on Saturday.  She didn't ask me my opinion on the broviac, and I wanted to hear the surgeon's opinion, so I didn't say anything.  But Jared and I still don't want to do it.  Why cut into him if they can just do another picc line?

The attending had a surgeon come by and look at Wyatt so that the procedure could get scheduled for he next day.  The surgeon was telling me about the plans and so I told her that I wasn't interested in doing a broviac.  That I felt it was best to avoid it if we could and to leave it as a last option.  After she and I talked for several minutes and I explained why I felt the way I felt, she told me that, personally, she agreed with me, but if we did opt to do the surgery that he would be a good candidate for it.  She left to call the attending and tell her that we would not be going forward with the procedure but came back like a minute later and told me that the attending would be coming over to talk to me about it.  Apparently she felt strongly that he should have this done.

Here we go again.  Same rodeo, different day.

I wasn't too thrilled to talk to the attending about anything because this was the same dr. that blamed me for the bottle incident.  She isn't very nice to me and is very condescending.

I let her explain why it is sooo imperative that we do the broviac and then told her I didn't want to do it.  I told her I wanted to avoid doing surgery on him as long as we can and that I really just wanted to have another picc line put in.  We went back and forth for while and finally she sort of scoffed at me and said, "Well you sound well versed in what you're saying" and that she would see if there was anyone that would even be willing to attempt a picc.  Gee thanks doc.  Glad we're on the same team here.  I swear that woman hates me.

For the rest of the day we played with Wyatt.  The little stinker was back to his old tricks, pulling the nasal cannula out every chance he got. I may or may not have intentionally not told the nurse when it was out. He was breathing great with it out and wasn't having any desats or anything. 

He had some fun sucking on my finger, until he figured out nothing was coming out of it and he didn't want it anymore.

And Wyatt and daddy had some bonding time

Thursday morning about 3 am the picc procedure began.  I asked his nurse, Marissa {she's one of his primary nurses and we LOVE her} if she would please call us and let us know whether or not the procedure was successful.  About 4:51 am, Marissa called and told me they were able to get a picc in! :)  The only really good vein left was in his head, so that's where it had to go and they got it first try.  They had to shave part of his head in order to get the dressings to stick and she told me that she saved the hair for me since it's technically his first hair cut. 

I'm so happy that I followed my gut instinct and had them do another picc.  Hopefully this one lasts a lot longer than 3 or 4 weeks so that we don't ever have to visit this situation again.  3rd time is the charm right?

At rounds on Thursday they decided to ween his nasal cannula again and went from the high flow to a regular flow.  I'm so proud of my little man for breathing so well!

 Dad- now you can gage how big he looks in the isolate.  Still pretty teeny but a TON bigger than when he first joined the world.

On Friday Wyatt was the happiest little boy in the whole NICCU because he was taken off the nasal cannula!  AND they DC'd the aminophylline {the drug that helps him remember to breathe}.  He is now 100% breathing on his own. :) Yay!!!!  My little boy is really growing up!

We had some bonding time and did kangaroo care for 2 hours.  It was awesome.

It'll be awesome when it isn't such a production every time I want to hold him, but I'm very glad that I do at least get to hold him now. :)

Another fun thing, Wyatt found his thumb.  He didn't suck on it for very long, but it was super cute to watch him suck it for a few minutes.

On Saturday, the dr.'s decided to continue Wyatt's antibiotics for 10 more days just to play it safe.  They also started his feeds back up!  He's on continuous feeds and getting 1 cc over an hour.  He's still breathing great on his own and his blood gas looked good so they changed his labs from every day to twice a week.

Jared held Wyatt for a couple of hours and I read them a story.  Sam and the Firefly :)

And we're pretty sure Wyatt's eyes are starting to turn green.

He is such a beautiful boy! <3

Yesterday was a great finish to the week. :)