Back to square one

On Tuesday the 15th, Wyatt turned one month old.

Unfortunately we didn't really get to celebrate

When I came in Tuesday morning, Wyatt's tummy was hard and swollen and his entire body was bright red.  When his tummy was touched, Wyatt would wince and cry.  The nurse spoke to the dr.'s about it at 11:00, then 1:00 and each time they just said to keep an eye on it.  Finally at 3ish they decided to take it more seriously because Wyatt was in obvious discomfort and his tummy wasn't getting any softer.  They told me that they thought it might be necrotizing enterocolitis {nec}, stopped his feeds and started him on 4 different antibiotics.  They also decided that he needed a blood transfusion.  Since his legs were still trashed from an IV from last week, they attempted one in his hand.  It blew out so they had to put the IV in his head.

As the day progressed Wyatt started sloughing a lot of the skin on his chest. 

He seemed to be getting more puffy and then he started having a lot of de-sats and apnea spells.  In my opinion, it was because his tummy was swollen, I think it was pushing against his diaphragm making it hard for him to breathe, so he would hold his breathe, then do a couple of catch up breaths and then breathe shallow for a bit... then he would hold his breathe... it was just a continual cycle.  His de-sats were going down into the 50's and it was taking awhile for him to recover {and most of the time they needed to give him a breath}.  The attending that night told me that if he continued breathing like this that he was going to need to be intubated so that he didn't damage himself from lack of oxygen.  At 11 pm {about an hour later} they began intubating.  They had a little bit of a hard time intubating and securing it to his skin so it took them over an hour before they were done.  He was given morphine to manage his pain and it is now given to him every 4 hours.  They also decided they wanted a culture of his pic line to see if there was any sign of infection.

I think Tuesday was my breaking point.  Actually... Tuesday surpassed my breaking point.  It's like there wasn't anything left in me.  I couldn't be strong anymore.  When I came in and saw him like I did I cried.  When he needed blood drawn I cried.  When they put the IV in his head I cried.  When we talked about intubating I cried.  When we had to leave so he could be intubated I cried.  I swear, if someone LOOKED at me I cried.  It was absolutely ridiculous.  By the end of the day, I was sitting on a chair in his room and I looked at Jared and said, I just don't care anymore, I don't care who sees me cry, and I cried.  I was the worlds biggest boob.  It's so hard to see your baby in pain and know that there's not a damn thing you can do to make him feel any better.  The only thing I can do is stand next to this box he's in and let him hold my finger.  I wish I could just pick him up whenever I wanted.

When I came in Wednesday morning this little note was on the window in Wyatt's room

"Hi Mom & Dad! Just wanted to say I love you! Love, Wyatt"
His night nurse knew that I had my fill the night before and left this sweet little note "from Wyatt". :)

My poor little guy was still very swollen on Wed.  His skin didn't look any better either, but he appeared to be comfortable since he was all drugged up on morphine.
Dermatology came in around noon and checked his skin out.  I asked them if we could start using a topical antibiotic on his open areas to hold prevent infection.  They said they were fine with that, put in an order for it and swabbed his skin to check for infection. 
At 3:00 he started getting fussy so I told the nurse I was going to change his diaper.  She told me that it had been dry at the 12:00 assessment and so it was probably in need of a change.  When I got him all opened up the diaper was bone dry.  This is totally unlike Wyatt.  He usually pees his diaper early and now it's been 7 hours since he peed last.  I asked her to call a dr. and let them know what was going on.  I'll admit... I started to freak out a little.  Were his kidney's failing?!  Why wasn't he peeing?  Why did he have such bad edema?  What the crap is going on?!!!!  The doctors decided to wait and see if he would pee by the 4:00 assessment so we had to wait one more hour.  After the hour was up he still hadn't peed, so the nurse put in a catheter and his bladder drained out over the next hour {It was a small catheter so the pee was just dripping out of the tube.}  Every diaper since then has been filled almost beyond capacity with pee, so I guess his body just needed to be reminded what to do.

Thursday Wyatt's skin looked a ton better but he was still super swollen.  Luckily nothing eventful happened that day.

On Sunday the pic line came out.  Not intentionally though.  The nurses were doing a dressing change and it just sort of "popped out".  So they put an IV in so that they could have access until they figured out what to do.  We told the attending that we wouldn't agree to a Broviac, so we compromised on doing another pic line.  They started the pic at 1:00 am Monday morning and worked on him for the next six hours.  The first attempt was on his left arm, but they couldn't get it central, so they put one in his right leg.  He looks like he got beat up.

All day Monday day and night Wyatt was in a drug induced sleep.

Early Tuesday morning, he woke up and he was pissed.  There was absolutely no consoling this boy.  I stood by his incubator for 3 hours with my hands at his head and feet and if I took them away he would immediately freak out.  We think he was in pain because his arm and leg were pretty torn up from the pic line procedure.  His dr.'s increased his morphine dose and he's been pretty comfortable ever since.  I'm pretty sure he's mad that he's still intubated too.


The past week has left me feeling kind of empty inside.  I had a huge internal battle with myself after Wyatt's really bad day last Tuesday... and I truly felt like the worst mom in the world for it.  I was terrified that Wyatt had NEC and that he wasn't going to make it.  My natural defense mechanism when I'm in any type of emotional turmoil is to push away.  If I can disconnect myself from a situation, then it won't hurt as bad.  But disconnecting from THIS situation meant pushing my son away.  I had to force myself to stay involved and to keep my cool.  It was hard to be strong for Wyatt when I wasn't even being strong for myself.  It's hard for me to accept the face that he had been doing so well, and now in the span of one week, all that progress is gone.  In fact, all the progress is gone, plus some.  He's in worse shape right now than he was over 5 weeks ago at his birth.  It's not fair to him.  It's not fair that he's been working so hard to get better and it was all taken away.
One of the attendings told me on Monday that he really was sick.  His blood cultures never grew anything, but the skin culture grew MSSA, which is a type of staf infection.
It's not fair to Wyatt that's he's going to have to fight things like this for his whole life... I guess there are a lot of things that aren't fair and that's why people say that life isn't fair.  Well you know what, it isn't fair... but I need to get off that train and figure out how to get over it.  Sure, none of this is fair to Wyatt, but at least he was lucky enough to be born into a family that will do anything for him.  Not only Jared and I, but his grandparents as well.  Especially his Grandpa Pope.  I think it's possible that my dad has done more research on EHK than I have, which is a ton.  And as an extra bonus, he's a doctor and his medical knowledge has helped me immensely with all of this NICCU stuff.
I'm over how I was feeling now... I think.  But it definitely helps me feel a lot better when he has good days.  Thank goodness today is a good day.  Wyatt still has a couple of days of antibiotics left and when he is finished with those I think they will start him on feeds again.  They're also weening him off the ventilator so maybe he'll be extubated sometime within the next week.

Sorry for taking so long for this update, there were a lot of different emotions that I had to deal with before I could write this all out.

On a happy closing note, I made Wyatt an appointment with a pediatric dermatologist.  Her name is Dr. Stefani Takahashi and she is actually familiar with EHK! :)  I made the appointment at the end of August so that we had plenty of time to get Wyatt home and settled first.