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. :)

Get me off this rollercoaster

Up and down. Up and down. Up and down.

Such is the life of a NICU parent.

One day is great, the next day is bad.

You take two steps forward then one step back.

Or one step forward and three steps back.

One day I'm loving life and feel like the luckiest mom in the world to be blessed with such a beautiful little boy...  Then the next day I wonder what in the crap I got myself into.  I have thoughts like, 

THIS is what I wanted?!  

I'm not cut out for this!  

WHY won't he stop crying?!  

WHAT IS WRONG WITH YOU SON?!!!!!!!!

... I now know why moms take naps.

I don't know how I'm going to do all of this on my own by the time Wyatt finally leaves the NICCU.  At least now I've got lots of hands at my disposal to help.  After I spend 8 straight hours trying to console an un-consolable child that won't stop crying, I can go home and try to rest up.

We had a good day yesterday.  Wyatt was happy and smiled a lot.  I held him for about an hour and a half and he slept in my arms like a little angel the whole time.  He was even good all night long and I was able to get 5 hours of sleep. 

Today was one of those days that I spent hours and hours and hours trying to get Wyatt to calm down.  He had a new nurse today, of course, and so on top of trying to make him happy, I had to teach her how to handle him and what works and what doesn't.  It seems like he always gets a new nurse on his bad days.  Such is my luck... I guess it's a good thing I'm not a gambling woman.  Anyway, I'm sure all moms could relate to me when I say that I wish I was telepathic and could hear all of Wyatt's thoughts.  I wish he had some way of telling me what's wrong and what I can do to make it all better.  I don't know if he was just grumpy today, if his skin hurt, if he was hungry, if his body didn't like that the dr.'s went down on the ventilator settings.  I don't know if he's having a hard time breathing, if his picc line is bothering him or if he itches everywhere from his skin trying to heal where it has sloughed off.  But there was literally no making him happy today.  I tried holding him for an hour, I practically bathed him in aquaphor every 30 minutes, I checked him for blisters and found none, I tried swaddling him.  Nothing would work for more than 2 minutes.  He kicked and screamed and thrashed around his bed like I've never seen before.  By the time we hit the 7 hour mark I just took a step back and let him just let it out.  I thought, maybe if I just leave him alone for a couple of minutes and let him scream he'll wear himself out.  Nope.  Sadly, with all of his tantrum throwing, his skin rubbed on itself and the sheet and he hurt himself even worse.  Yesterday his skin looked sooo good.  He hurt all of that progress and is now started to slough off all the skin on his hands, feet, arms, legs and belly.  AND all of the friction created a ton of blisters.

I hate this.

I don't like to use the word hate... but I really hate this.

There was a silver lining to the day though.  A followup echo was done and the tiny PDA that had re-opened in Wyatt's heart is now closed.  Also, an x-ray the other day showed he had irregular gas patterns in his bowels and as of this morning it looks normal.  The result of those two things equals Wyatt got to start feeds again today.  I got him to calm down enough to take a bottle!  Sort of.  This was his first time with a bottle and I don't think he knew quite what to make of it.  See, term babies have the suck, swallow and breathe thing down as a natural impulse...  but preemie babies that don't start feeds right away have to learn it.  I've been giving him a pacifier for about 4 weeks now so he can practice his sucking while breathing, but he's never had to incorporate swallowing with that.  It took about 30 minutes to get him to finish 3 cc's of breastmilk.  After the first half of it, he threw up, but the nurse thinks that is because he'd been screaming for 4 hours prior and had lots of gas in his belly.  He finished the rest of it and kept it down, but a couple of minutes later resumed throwing his fit.  I asked the nurse to give him his morphine early so that he could calm down, because exerting all of that energy is really bad for a tiny baby.  He needs to stay calm so his body can focus on growing and getting big and strong.  She gave morphine and a tylonel suppository at the same time in hopes that it would work better than his last dose of morphine did {the 10:30 dose only worked for about 40 minutes} and luckily it did.  I think the combination of the drugs and exhaustion made him pass out.  Because he was so worked up all day, his feeds have been discontinued until tomorrow.  They want to give him a break so he can rest up.  

When he fell asleep, I left the hospital and went home.  There is no part of me that feels like I'm ready to be a mom.  I really don't know how I'm going to do this on my own when Wyatt finally comes home.  I mean, I know I've got Jared to help me...  But he's at work all day and I'll be at home with Wyatt and when he has a day where he's on his 6th hour of crying... siggghhhhhhhhh... I just can't help but feel a little sorry for the pair of us.  We'll definitely be a sight for sore eyes on those days.

Hopefully I'll be able to learn a ton of handy stuff at this conference in 3 weeks.  I'm excited to meet all of the parents that I'll be able to relate to.  I'm excited to learn from them and from the experts.  I hope that I'll make lots of new friendships that will last for years to come.

I can't believe it's already just 3 weeks from tomorrow that we leave.  Actually, I can't believe a lot of number things.  Like, Wyatt is already 6 weeks and 4 days old.  How did that happen?  And as of last night he weighs 4 lbs. 4 oz.  FOUR POUNDS!!!  He's put on almost 2 pounds in 6.5 weeks.  That just blows my mind.  He's such a little chunkster now. :)

Since he's 6 weeks old, that means I had him 6 weeks ago {duh, I know} which means I can officially start working out again.  My c-section scar is really healing "beautifully" as a doctor would say.  So yesterday I "worked out" for the first time since last September.  2 months of IVF stuff plus 6 months being prego, plus 6 weeks of Wyatt's life equals it's been forever since I've used my body.  I went out for about 2 miles, jogged about a quarter mile and walked the rest of it, and man oh man am I feeling it in my legs today.  It's absolutely pathetic.  But I guess I have to start somewhere right?  I'm determined to run a half marathon next year so at least I've got some time.  I'm also determined to be as skinny as I was in highschool.  So game on body, I've got 20 pounds of you that's going bye bye.

Anyway, I'm sending good ju-ju to all the NICU parents in the world.  I hope your babies get better soon and that you will have all the strength you need to be able to endure your own little rollercoaster.

<3

On the road again

"Love is that condition in which the happiness of another person is essential to your own."  -Robert A. Heinlein

 

I get quotes like this emailed to me daily from Real Simple and the one above was sent to me the day Wyatt turned one month old.  How perfect is that?  As I read it I just thought to myself how very true this statement is.  The past couple of weeks have been hard for me because, and only because, Wyatt has been having a tough time.  When he is happy, I am on the moon and when he is sad I get really depressed.  I've heard it said that you are only as happy as your most unhappy child, but I never realized just how true that statement could be.

Luckily the past couple of days have been good days.  On Friday night Wyatt was wide awake and happy.  Jared and I played with him for about an hour and a half before he acted tired enough to go back to sleep.  I used my finger to draw on his face, something that my dad used to do when I was a little girl.  I remember loving it because it tickled just the right amount plus it meant I was getting his attention which every little girl loves.  Wyatt was cracking me up because I would touch his nose and then move upwards between his eyes to his forehead and he would go cross-eyed and try to look up as he followed my finger.  I read him 3 different books, Harold and the Purple Crayon, Corduroy, and The Giving Tree, and he loved it.  He watched me the whole time I read and he smiled a lot. :)

It was fun to be able to play with him and feel somewhat normal for a little while. 

Wyatt's bed got changed out of Friday night as well, so I got to hold him while the beds were switched.  It had been about a week and a half since I had last held him.  Since he was out, our nurse was awesome and took a little family picture :)

I seriously have the best little family ever <3

Saturday was also a great day because Wyatt was extubated!!!  {Hopefully for the last time}

Since Wyatt is extubated, that means I get to hold him again! So, of course, I held him right away and he slept in my arms the whole time. :)

Wyatt is also learning this new trick and thinks it's really funny to kick his diaper off as much as humanly possible.  I think I might be raising a nudist, haha.

It doesn't count as nudity if it's a baby right?

I'm glad that we're finally back on the road to making some progress.  I'm totally okay with it going really slow, just as long as we keep heading in the right direction.

Amazed

The day after Wyatt was born, my sister in law came down to the Children's Hospital and donated blood for him to use if he needed it.  We also had some close friends help with getting a couple of other people to come down and donate.  Ever since that blood was donated, Wyatt has needed to have 5 blood transfusions.

Last week when Wyatt recieved a blood transfusion, he used the last of the blood that had been directly donated to him.  Our friends arranged for another person to come donate, and the timing would have worked perfectly, but her blood wasn't compatible with Wyatt's.  We needed to get someone else down here to donate for Wyatt.  So we decided to put a post on facebook to see if any of our friends had O- blood, and if they did, would they be willing to come down and donate for our son.  I said:

"The blood that was generously donated for Wyatt on Monday isn't compatible with his blood and he used the last of the good donated blood yesterday. If anyone in the LA area has O- and is willing to donate, please contact me ASAP by message or text (626-641-****) thanks!!!"

Eleven of my friends reposted my plea for help, or wrote one of their own to see if they had any friends around here that could donate.  And a friend of Wyatt's Godmother is a teacher and sent out a mass email to all of her co-workers to see if any of them could donate AND she told her students.

The response that I recieved was almost unbelievable.

11 people that I did not know, texted me about wanting to donate for him and about 5 people called me.
The thing about it that was pretty amazing to me... I only knew 1 of these individuals.
These were mostly friends of friends, willing to help a complete and total stranger.
How cool is that?!

On Friday, 4 people came to the Children's Hospital and donated for Wyatt, and on Saturday I got a random text from someone I didn't know telling me that she had just donated for Wyatt and if we needed more, that when she was eligable to donate again she would come back down.  The remaining people that offered to donate, we have asked to wait until the middle of June to do so, so that his blood supply can last for as long as possible.
{The blood donated directly for Wyatt is only good for him to use for 30 days.  They will then release it for anyone in need to go ahead and use it so that it doesn't go bad.  So, even if the blood isn't compatible for him, or if he doesn't use it, it's still a win-win because it still goes to a child in need}

Today Wyatt needs another blood transfusion because his hemoglobin levels are low once again and it's awesome to know that because of these caring people that I will probably never meet, he has direct donor blood that he can use.

So now I'm going to do a little pitch.
If it's been awhile since you donated blood, or if you've never in your life donated blood and you are able to do so, PLEASE go donate.  The Red Cross's blood supply is low and they are in serious need of donors.  Or if you have a Children's Hospital near you, they are always in need of donors.  You don't need to know your own blood type in order to donate.  Donating blood helps save lives and I promise you will feel awesome for doing it. :)

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.