Withdrawal

Last Sunday {the day after Wyatt came home} Wyatt had one of his bad days. He cried a lot and was really irritable. After a little while of this I sent Jared to get some baby Tylenol because he appeared to be in some pain. It settled him enough that he was able to sleep for a little bit, but not long. Throughout the day he continued to be increasingly irritable. He was twitching a lot more than he usually does, had diarrhea, it was difficult getting him to focus on eating and was really upset while he was eating, and he was sneezing a lot which I thought was odd {I thought, maybe he's allergic to the cat?}. By nighttime Jared and I decided that this wasn't normal and decided to bring him to the ER by our house.

The dr. that looked at him there said that Wyatt did appear to have withdrawal symptoms and prescribed him more methadone. I don't remember what the dr. told me but I left with the impression that he was going to go through withdrawal from the methadone whenever he came off of it. That being said I thought to myself, okay, so he can either just go through this now, or in 4 days... I'm not delaying the inevitable. So I didn't fill the prescription.

Monday was a pretty hard day for Wyatt. It was still a challenge to get him to eat, but he did eat. He cried a butt ton, but he still took a nap here and there.

Monday night I slept on the couch next to him. The only way he would sleep was with skin to skin contact and he didn't sleep very well.. maybe 30 minutes every 3 hours, if that.

Tuesday Wyatt seemed to improve a little bit with his feeding. He still cried a lot and had lots of twitching, but it didn't seem to be quite as bad as it was the day before.

I spent the night on the couch with him again.

Wednesday was bad. His eating started to go down the crapper around 6 am. He wasn't interested in eating at all and was constantly crying. It took forEVER to console the little guy. Thank goodness my in-laws live next door! They came over and held him for awhile and tried to console him {which gave us a much needed break!} I decided that just Tylenol wasn't cutting it anymore and started giving him Tylenol and Ibuprofen around the clock.

By the time night came around Wyatt had been awake pretty much all day long crying. About 2 in the morning he was so wiped out that he finally fell asleep on my chest and he actually slept for about an hour and a half.

On Thursday Wyatt would only eat 9-20 mL of food each time I tried feeding him before he would freak out. There were times that we couldn't pick him up because it seemed to hurt him. By noon it appeared that the increased medication wasn't doing anything to help Wyatt. He had his followup appt that day so I told Jared that as soon as he got home we were going to go, I didn't care if we were early. Because he was eating so poorly, he wasn't peeing as much. He had a couple of dry diapers, and when I changed him at noon it looked like there was a tiny bit of blood in the diaper. {!!!}

Wyatt cried the whole way over and when we arrived at the appt an hour early, they took one look at Wyatt and we only had to wait about 10 minutes before we were in.

I told the dr. that I felt Wyatt needed to be re-admitted to the hospital for the methadone withdrawal. He wasn't eating well so I was worried about his health and the blood in his diaper also had me very concerned. Luckily I was smart enough to chart his eating ever since he had left the hospital so I was able to show her exactly when and how much he had been eating during the week, and I also wrote down every time I gave him medicine. After she assessed him and they tested his diaper for blood {which tested positive} she agreed with me that he needed to be back in the hospital.

She walked us over to the ER so that we could be admitted and after a few hours a room was finally ready for Wyatt. I requested that he be put in the same section he was in before since the nurses there were familiar with him and I'm grateful that they were able to comply with that request.

They gave him morphine to treat his withdrawal symptoms and after 12 hours of being awake, my little guy finally fell asleep.

He had one rough week. :(

They started him back on the methadone at 6 am Friday morning and he pretty much went back to his normal self... except he's eating way better. I think he's eating better because he knows what it feels like to be really hungry and now he's happy to eat.

I met with the pain team who is going to be following Wyatt while he is here and coming up with a new plan to get him off the methadone. I was able to show one of the dr.'s what Wyatt looked like while he was at home because I took a little video of him in case someone needed to see it after he had been put back on medicine. {I'm sooo glad I did that!}

Saturday day was also pretty good for Wyatt, but last night and this morning he went back to lots of crying and twitching and had to be given extra doses of morphine and Tylenol to manage the pain and make him comfortable again.

The attending thinks that there is more going on here than just withdrawal symptoms, he thinks that Wyatt is experiencing pain as well {and I agree}. They're going to be doing an x-ray to see if there's maybe a hairline fracture in one of his bones, then they're going to check his eyes to see if there's a scratch on his cornea, they'll possibly treat him with antibiotics in case he has an infection and then go from there.

We all feel that Wyatt's threshold for pain has been lowered with him being on pain meds for so long. Once we find a happy place for him to be in with the meds, they will be weened over a really long time so that he not only doesn't experience withdrawal symptoms again, but so he can slowly get used to what his skin feels like.

I'm not sure how long he'll be in the hospital this go round, but it looks like it'll be at least a week. I don't care how long he needs to be here... I just don't want him to hurt anymore.

Graduation Day

On July 21st, after 97 days spent in the hospital, our little man Wyatt Reid FINALLY got to come home!

We loved the 3 primary nurses that we had the privilege of working with as well as almost every other person that we came in contact with during Wyatts stay.
His primaries were; Marissa {aminophelin}, {Aunt} Lisa and Claudine... I don't know how I would have survived my time in the NICU without these three wonderful women. They were all amazing advocates for Wyatt and knew him just as well as I did. I knew that if I couldn't be there with Wyatt and one of them was, that he would be taken care of the right way. :) Seeing them as often as I did, I came to think of them not so much as Wyatt's nurses, but as friends, and I hope that we all stay in contact as Wyatt grows up. {and I hope I'm not a super nerd for feeling that way.}
Here is my little man in his coming home outfit.

And in his car seat ready to leave his room

Goodbye room!

In the car on the way home

Welcome home Wyatt!

 In his crib for the very first time

It felt so good to finally have our whole little family under our own roof.  And it felt weird.  I've had a baby for 14 weeks and my routine with him doesn't include being at home.

We set up all of his diaper changing table with all the stuff that he'll need at home... the aquaphor, the antibiotic ointments, thermometer, and disposable gloves for Jared and I. {I tried doing the aquaphor without gloves and I swear the stuff doesn't wash off.  I left a grease trail with everything I touched for the remainder of the day, so when he gets aquaphor'd up, I use gloves.}

The first night with a baby in the house was definitely a long one as I expected it would be and it was wonderful. :) Tiring, but wonderful.

On Sunday Wyatt started being really irritable and having one of his "bad days" as I like to call them, which he usually has after his meds are weened {and they had been the day before from twice a day to just once a day}.

Sunday was the start of five of the longest days in my life {and Wyatt's life} which I'll write about in my next post.

Best binky ever

These sweet little babies were a gift sent to Wyatt from his Uncle Jason.

They are amazing.

That is all.

Well I feel dumb...

 So last night Wyatt was crying and crying and crying and crying... off and on from 5:30-10.  I fed him at 5:30 and he was fussy for the whole feed and threw up at the end of it.  Oy.  I think he's been getting gassy so I took a long time burping him to try and get it all out and he farted a lot.  He settled a bit after a good aquaphor and diaper change but then he started freaking out again.  I was pumping, so the nurses aid came in to help and decided to try and give him a little more food.  He did eat a little more but was still pretty upset.  He ate again at 8:30   Then he started to freak out again.  I was worried that maybe this was a side effect of him being weened off of his pain medication.  

From 9-9:45 I just rocked him and tried to get him to calm down.  He was rooting a lot but I had just fed him and he hadn't finished the last little bit so I didn't think he was hungry, plus he wouldn't take his binky.  He was all aquaphor'd up and had a clean diaper on.  I did NOT know what else to do so I had the nurse page the dr.  The dr. came down within 15 minutes and checked Wyatt out.  He listened to him and looked him over to see if there were any new denuded areas.  He told me that he didn't think he was having a reaction to being weened off of the pain meds and then he asked if I had tried feeding him.  

Well... no, because he had just eaten.

The dr. had the nurse get a bottle and as soon as that thing was in his mouth, Wyatt gulped it all down.  I felt so dumb.

I told the dr. that I hadn't even thought of that bc 1. he had just eaten about an hour before and 2. he's not a 'normal' baby... the dr. stopped me right there and said, "but he is.  He IS a normal baby.  If you can't calm them down by blah blah blah {he gave several examples of how to calm babies}  you try feeding them.  If that doesn't calm him down then you know something else is going on, but usually babies just get hungry anywhere from 1.5-3 hours."

dur dur dur

In my defense... Wyatt has only had the ng tube out for a couple of weeks and he's still establishing his eating routine.  However, I'm glad that I learned this while he is still in the hospital.  How would that be to take a screaming infant to the ER just to find out that, oh, they're just hungry.

I'm just a dumb first time mom, haha.

This pic was from earlier on in the day.  My cute boy smiled for our picture!

I love him.

Disneyland

When babies get to go home here, the nurses say they are going to Disneyland.  You can't use the 'H' word or else you jinx it.  Fellow NICU moms will be able to relate to how supersticious nurses are, haha.

Anyway, since my last update, Wyatts ng tube has been removed.  The dr.'s decided to not put the tube in the next time it came out and to feed him ad lib.  Since then he has been taking his bottle pretty well.  Rather than feeding him 55 mL of breastmilk fortified to 24 kcal/ounce every 3 hours and forcing feeding whatever he doesn't take by mouth, he's being fed 40-45 mL of breastmilk fortified to 27 kcal/ounce every 2 - 2 1/2.  He did so so good for the first few days.  He was eating anywhere from 40-50 mL each feed and gained weight for several days in a row.  Yesterday and today he hasn't really been interested in eating and last night he lost weight. :(  He was really fussy and gassy so I'm hoping that it was just a bad day.

Before he started eating poopy yesterday I spoke with the attending that is in charge of Wyatt's care.  He agreed with me that there isn't anything that they are doing there that I can't do for him at home.  He said that if between now and Friday he ate all his food and gained weight that they would plan on discharging him on Friday. :) :) :)  I was super excited and didn't tell a soul because I was afraid of jinxing it again.  But then Wyatt ate stupid so now I don't know that they'll let him leave by Friday.  BUT I'm not totally down in the dumps, because he really is very close.  He's right there on the edge of being where he needs to be.. I think he just wants to flirt with these pretty nurses a little longer.  They all smile at him and tell him how cute he is.  What guy wouldn't like that? 

So hopefully he gains weight tonight and tomorrow I'm going to make sure i'm there bright and early so I'm there when the attending stops by Wyatt's room.  Who knows... maybe the scale weighed wrong yesterday and he didn't really lose weight and he'll still get to go to Disneyland.  But either way, I want to know what the updated plan will be.

We're so close I can feel it!

Wyatts nursery

 I'm completely opposed to themed nurseries... in my opinion, most of them turn our really tacky.  I wanted to design a nursery that was a fusion of different things that I like for baby boys.  Lions are the king of the jungle, mustaches are a little silly, but in my mind also symbolize manhood and brightly colored paper lanterns represent light and happy feelings.  I was always read to as a child and I feel that it really helps to enrich lives so I wanted to have an area for Wyatts books.

I'm not gonna lie.. I'm pretty dang proud of myself right now. Wyatt's nursery is, in my opinion, A-mazing and I'm very pleased with how it turned out.

So here is the room!

I still need to print a picture of Wyatt to put in the center frame.

Brag moment... my super cool husband came up with the idea for and made the shelving that goes behind and over the bedroom door.  Such a good use of dead space!

I also had a couple of things made to commemorate our two boys.

I absolutely love how they turned out <3

PBK better keep making these for a long time because I want to have one made for each of our future children!

Anyway, hopefully Wyatt will be out of the hospital soon so he can enjoy his way cool room...

 and so we can take naps together <3

40 Weeks

Today is Wyatt's due date.

I would have been 40 weeks pregnant today, but instead I have a beautiful baby boy that I've gotten to know outside of the womb for 13 weeks and 1 day.

Today marks day 92 of being in the hospital.

I'm ready for you to come home now baby!



Feeds

Written on 7/11...

The only thing keeping Wyatt in the hospital... Feeds.

It's almost annoying.

He's not here because of anything to do with his skin.  It's just a preemie issue.

He is quite possibly the most inconsistent eater I've seen in my entire life.  He'll go from drinking the whole bottle (55 cc's) one time to only drinking 15 cc's the next.  Sometimes he dribbles a ton, other times he doesn't.  I really question whether or not he's actually hungry when it comes to feeding time.  He doesn't get to pick when he's hungry.  He's just fed 55 cc's every 3 hours whether he wants it or not.  Whatever he doesn't take by mouth is force fed down the ng tube.  What if he's just one of those babies that wants to eat every 4 hours instead of 3. 

All babies aren't created equal you know.  They all eat different amounts at different times of the day and they don't always do it in 30 minutes or less.  In addition to him eating inconsistently, there's the issue of the ng tube.  The tape keeps coming off quickly and usually takes a layer of skin with it so yesterday they put a head band thing on him to keep the tube in place.  The band that they were using put too much pressure on his head though so that hurt him too, so now they're trying a different thing on his head to keep the tube in place.  Since it's being such a hassle, the next time the tube comes out, they're going to leave it out for 24-48 hours to see how he does.  They're going to only feed him what he can eat to see how he does. Secretly, I hope the tube comes out soon so that he can try doing all the feeds on his own and he can establish his own schedule.  {Actually... I guess that's not much of a secret anymore} 

I hope hope hope this is the right card to play.  I hope it gives him that little push he needs to start doing all of this on his own.  I want this to all click for him so that he can finally come home with us.

He'll be 3 months old on Sunday.  3 months.  I've had to learn an immense amount of patience this year.  With myself, other people and with Wyatt.  I've also had to really put things into perspective.  I try to see things from other peoples point of view.  But dang it sometimes it's hard.  For example, when a pregnant friend complains about her pregnancy and how she's sick of it, I have to really bite my tongue.  I much rather would have spent the past 3 months being pregnant instead of at the hospital. 

I actually really miss being pregnant.  Right after I had Wyatt I think I had empty nest syndrome.  I wasn't pregnant anymore, but I didn't have a baby at home.  I think about a month into all of this I asked Jared when he thought we could start another round of IVF.  He was all, "ARE YOU CRAZY?!  We have a baby in the hospital and you want to talk about having another one?"

...yes?

He was like, um no.  We can have this conversation in a year.  Maybe.

It's a good thing that when one of us loses our head, the other one can be rational.  Otherwise there is a good possibility that I would be pregnant again right now haha.

I can't help it!  All I've ever wanted was to be a mom and it feels like the universe is against me.  But Wyatt will be home soon and then I can really start feeling like a mom... if that's even possible.  When does a person even start feeling like a parent?

Babies are time consuming!

The month of June proved to be both a very productive month, but also a very busy month.

Last I wrote, Wyatt had been completely taken off of the nasal cannula and was progressing with his feeds.  Well, within a day or two of saying that, the little stinker decided that breathing was just too much work to do all on his own and began having frequent de-sats.  So they put the nasal cannula back on him for about a week after which it was removed again and has been off ever since.  Yay!  He's been breathing all on his own for about a month!  Such a big boy. :)  As far as his feeds have gone, he's taking bottles now.

Two Saturdays ago he ripped his ng tube out... again... and the nurse decided to just feed him first then put it in to finish giving him what he didn't take by mouth.  Well, he drank the whole thing up.  And he took full feeds by mouth for almost a week.  I had never been prouder of another person in my entire life..  No wonder parents like to brag about their kids!

A couple of weeks ago I asked his nurse straight up, if he hit every marker they wanted him to hit from here on out, what would be a realistic time frame to expect him to be coming home by.... they all said 3-4 weeks.  But then he decided to just start taking his bottles so they were thinking he could be home within the next week!... and then he stopped drinking it all.  He keeps getting really sleepy and not wanting to work so hard to eat... so we'll see what happens.  This is all on his time.

That little reality check we had a week ago made us really realize that we need to get the rest of the important things done so we're all ready for Wyatt to come home.

There are just a couple of things left to do in order for everything to be perfect for him. Jared was and still is in overdrive getting big things done around the house.  Last Saturday he built a bookcase/shelf in Wyatt's room, last Sunday he built a dvd case so that we can get all of our dvd's out of Wyatt's closet, and last Monday and Tuesday he moved the water heater and got everything ready to install the water softener that we're putting in {compliments of my awesome in-laws}.  We're putting in a water softener because the soft water is supposed to be oh so much nicer on Wyatt's skin.
Finally, last Thursday, Jared installed a double laundry sink {so I can prewash and soak all of Wyatt's aquaphor soaked blankets and clothes so they don't destroy my washing machine}.  There are still some baby items that we need to pick up from the store, although we did stop by and pick up a swing the other day.  Oh yeah, and I need to deep clean my house.  Man, babies are a lot of work before they come home.  Especially ones with special needs.  Good thing they're worth it! ;)

So here's a sneak peak at a couple of my favorite things in Wyatt's room
Here are his little bookshelves {made from ikea spiceracks, thankyou pinerest}

 And I adore his Lion rug from PBK

I'll get up some more pictures when the room is complete.

Anyway, back to Wyatt... Two Sundays ago he graduated from his isolete to a big boy crib and he wore clothes for the very first time.

last Friday the picc line was removed from his head

and on Saturday he was moved out of the NICCU to the floor. 
Wyatt is no longer in need of the critical care that the NICCU provides.
We were really sad to leave the NICCU even though it means we're a step closer to home.  We miss the familiar environment, but we mostly miss the nurses there.  They were all amazing.  ESPECIALLY Wyatt's primary nurses. :)  We've really appreciated them for who they are and for all they did for Wyatt.  They were all really great advocates for him and most importantly, they were all on the same page as me when it came to what we wanted for his care.  I knew that if I wasn't there for morning rounds that the nurses weren't going to let the dr.'s do something unnecessary. {like give him morphine when he really doesn't need it, or try to put him back in his isolete... oh yeah... that was some stupid drama right there.}  I know his nurses were his nurses, but I've spent so much time up here with them that I've really come to think of them as my friends.  I hope that's not lame.  But they're all such sweet girls!  They really helped me get through the last 12 weeks we were in the NICCU.

So before we were moved to the 5th floor, I really had to push for Wyatt to still get his own room.  They were going to just transfer him up here and stick him in whatever room with whoever, but I told the dr.'s that it is absolutely imperative that he has his own room.  He's had MSSA twice since he's been here, and yeah he's healthy right now, but that's because he's been in reverse isolation his entire hospital stay and we need to maintain that environment.  They told me that they couldn't gaurentee he had his own room but that they would try and I told them that if they couldn't provide that for him, we would take him to a different hospital.  Needless to say, he got his isolation room.  From everything that I've read about this skin condition, it's really important to protect these kids from everyone else.  I've recently made a friends whose son has EHK and she told me that for the first year of his life, they were in the hospital every other week for some type of infection.  I want to try and avoid that as much as I possibly can.  And if he gets another infection while he's here, they'll just stop his feeds until the antibiotics are through and then we'll have to start all over again.  I don't want that!
Wyatt looks so tiny in the crib that they put him in.

 And his first day in here, his eyes were wide open and looking around at everything.  He definitely knew he was in a different place.

Here on the floor, we get to pretty much do everything for Wyatt when we're here.  The nurses just poke their heads in, ask if we need anything and give us the bottle to feed him every 3 hours.  It's definitely some good preparation for what things will be like at home.  This kid is definitely a time sucker.  Between his 15 min. baths {water is amazing for his skin} his feeds, diaper changes and aquphoring, by the time I've gotten him to sleep, I barely have time to pump before it all starts again. 
Welcome to motherhood.
So we're on the home stretch now.  It looks like we've got 2 weeks tops {hopefully, fingers crossed, knock on wood} before Wyatt gets to go to Disneyland {according to the nurses, we can't say the "h" word or we'll jinx ourselves again}.