Monday, April 7, 2014

RSV and Rhinosvirus.

It is hard to sit down and relive the emotion of what happened over the past nine days, but I want to remember the details, the kindness, the miracles and the tender mercies that we experienced.
Saturday night I hid in my room to watch the first ever General Woman's Meeting broadcast.  We had a big day with lots of family and cousins at our house.  I nursed Pete and rocked him to sleep while I listened.
Truman had given Gregg tickets to the BYU men's volleyball game {via uncle Chris, thank you!} for his birthday.  It just so happened that at the last second uncle Nate {who had flown in from Korea} got to go with them.
{I like aunt Tara's photo-bomb in this picture}

After everyone left our house for the day, and with Bodie fast asleep in his bed, Lauren and I sat down in my room to watch the volleyball game on TV and nurse our babies.  Pete slept on my chest while we watched the game and talked.

By 11 PM everyone was home and sleeping peacefully.  Gregg and I were talking about the day when I noticed that Pete was breathing funny.  I mentioned to Gregg that it seemed to me that Pete was holding his breath for longer then I was comfortable with.  Babies sometimes hold their breath for short amounts of time and they don't always breath regularly like an adult does.

Gregg timed Pete holding is breath, it seemed to be that he was holding it for 30 seconds and longer.  We talked about taking him into the InstaCare or ER but it seemed a little extreme for something simple and silly like Pete holding his breath.  I could get Pete to take a big breath and breath normal when I would give him a big pat on the back and call out his name.  Why do these things always happen late at night and on the weekend?

We decided to put Pete in bed between us for the night so we could keep an eye on him.  I remember falling asleep with my hand on his chest. 

In hindsight I think we are lucky we didn't lose Pete during the night, Gregg and I were both so tired that we slept most of the night.  I remember calling out Pete's name and jostling him a few times during to night when his breathing was not regular.  I had also tried to nurse him a few times in the early morning with no luck.

By Sunday morning Pete was pale and not very responsive.  I was busy trying to get some breakfast for my brother Nate and sister-in-law Lauren and get them out the door to church.  We were also busy making plans for the day - would they come home from church so I could leave Pete and go to Relief Society?  Who would watch Pete so we could attend our niece Evelyn and nephew Enders baby blessings?  Who would be home to watch our kids so we could attend the stake meeting to see what new ward we were being assigned too? etc. etc. etc.  It was a busy day for a Sunday.  Lots of Simons family in town for two baby blessings and everyone wondering what the new ward boundaries for our stake would be {something we have ALL been anticipating for 9+ months}.

With everyone out the door I sat in my room and gave all my attention to Pete who was looking more and more pale.  I tried valiantly to get him to nurse - by this time it had been 10+ hours since he had nursed, something I knew could not be a good sign.

We tried to get Pete to give us a good reaction, we tried to make him mad!  I did everything to him that he hates, no response, he just laid there, white as his blanket.  That is when we made the decision to take him in.  I texted my parents who were not far away in their sacrament meeting.  When they got to the house Gregg and I were already in the car waiting to drive away.

We first took Pete to the InstaCare at our hospital.  Luckily {first of many miracles} the doctor came right out to the waiting room {we were not first in line to see her, but she came to "take a peek"}.  She took one look at Pete, grabbed him from us and ran to the ER.  That is the first time my heart started to race.  Gregg and I followed behind her.

In the ER the doctor on call did a quick evaluation of Pete's vitals - everything checked out fine and Pete started to respond.  That is the moment you feel like and idiot for taking your child in at all.  Pete was mad, he immediately got his color back and wanted to nurse.  I remember thinking the entire "issue" was weird, and it landed us in the ER on a Sunday morning but at least Pete was over it and we could go home.

How are for the truth was that?

As quickly as Pete got mad and got his color back the opposite occurred, he held his breath, lost his color, went limp and his vitals started to plummet.  

From that point on I was less then happy with the care we received at that ER.  My baby was laying on the hospital bed looking dead and they were more worried about swiping my credit card and charging my insurance for the ER visit.

Because they could not see an obvious signs of anything wrong with Pete {other then him holding his breath for some unknown reason} the doctor got on the phone with the ER doctor at Primary Children's Hospital.  He wanted Pete immediately flown by LifeFlight to Salt Lake.  Luckily the weather was bad so we had to settle on an ambulance ride {I think LifeFlight might have been a bit extreme}.  The doctor at Primary Children's took over Pete's care at that time.  He had our hospital start Pete on oxygen, take a chest x-ray, draw blood, do a rapid RSV culture and put in an IV so Pete could start getting an antibiotic on his way to Salt Lake.  
I was able to nurse Pete for what would be the last time in a week right before he was taken.  My dad and brother Nate came to the hospital to give Pete a blessing before we left.

His car seat was strapped onto the stretched, they covered him with warm blankets and they were on their way.

I could have ridden in the ambulance with him, but I didn't want Gregg to have to drive down to Salt Lake by himself so we followed close behind.

At this point the scariest part was the unknown.  We didn't know if Pete would make it, I wondered if I would be planing a funeral, we wondered if Pete had some genetic or lifelong illness, we wondered if they would even find a problem or diagnosis. 
Once at Primary Children's we were taken to the trauma unit.  There we started the story all over again, telling the nurses, doctor and respiratory therapist everything that had happened over the past 12 hours.

I remember when the picture above was taken I thought Pete looked so bad, now I look at it and think "he still looked so good" it was about to get a lot worse!

This picture was also the last time we saw Pete's eyes opened for almost four days.
We sat in the trauma unit for over an hour waiting for x-rays and blood work results.  Things progressively got worse.  Pete started holding his breath more and more and longer and longer.  Each time causing a huge commotion with the nurse as we tried to "get him back".  Final a nurse interrupted the doctor to let him know we needed to be seen next before something serious happened to our baby.

If you are wondering how much I cried, the Kleenex box at the top of this picture would be one indication.  I went through two entire boxes just on Sunday alone.
At first there were no answers, it felt like a race against time just to stabilize Pete.

As pictured above there were two nurses each keeping a separate pulse on Pete.  The lady {Brenda} in aqua scrubs was the respiratory therapist who was basically keeping Pete alive by forcing oxygen into his lungs on a regular basis with the bulb.  The man in gray was our doctor, looking kind of stumped.
Pete went from having regular oxygen in his nose to what they call 'high flow' oxygen.  After a very patient and valiant effort from the respiratory therapist to get Pete stable on the high flow oxygen she very humbly said to the doctor,

"Do you want my opinion?  He needs to be intubated."

That was really hard to hear.
For the next hour they worked to get Pete intubated {on life support}.  He had to be heavily sedated which was horrible to see.  They brought in tons of nurses, doctors, respiratory specialist, anesthesiologist, therapist and social workers.  Gregg and I sat in the corner of the trauma room watching and waited.

To get the breathing tube in the respiratory therapist had to stop her breathing repetitions with the bulb on Pete.  The head nurse would call our Pete's stats so the doctor and everyone could hear as they frantically tried to get the breathing tube in - because Pete's stats would plummet so quickly he usually only got one quick try before everyone had to resume their duties of breathing for Pete.  Everyone in the room was so calm working together, even speaking to one another in a whisper but despite that, it was still the most awful experience as a parent.

After several unsuccessful attempts by our doctor to get the breathing tube in the pediatric anesthesiologist was called down to assist.  He was able to insert Pete's breathing tube on the first attempt.  Apparently Pete's vocal cords are tilted forward just a bit and it made inserting the tube a little more difficult.
While we were in the corner of the room watching all of this happen we experienced another tender mercy.  Out of the blue my cousin Lindsey in Nevada texted me "How are you doing?"  It's not that weird that she would be texting me, we usually talk or text each other at least once a week - but it was random to hear from her during the middle of the day, on a Sunday and for her to say "how are you doing" right when we were experiencing all these crazy emotions, she had no idea any of this was going on.  I immediately felt like my Heavenly Father knew what we were feeling and that my cousin had listened to a small prompting.  It was exactly what we needed in that moment, we started texting her about what was going on and how we were waiting and watching as they tried to intubate Pete.  It was the perfect amount of distraction from what was happening in the room.

While Pete was heavily sedated from the intubation they decided to also do a spinal tap to rule out meningitis.  In the picture above Pete is on his side as they prepare his back for s spinal - that part I couldn't watch.
This is what Pete looked like once they got him stable.  This to me is still the most horrible picture of the entire ordeal - to see your baby like that is awful.  Just the fact that he didn't have any clothes on or a blanket around him was killing me.
Once Pete was stable they worked on getting us moved out of the trauma unit and up to the PICU {Pediatric Intensive Care Unit}.  We still didn't have any answers as to why Pete was having such a hard time breathing.  When he did breath all his vials were perfect, but the minute he would start to have an 'episode' his vitals would head south fast.  The chest x-ray looked fine and the rapid RSV test came back negative.  We were still waiting for the RSV culture from the Heber hospital {which was being driven up to Primary Children's}, and also the results from blood work.  They were checking for over 20 different infections, bacteria and viruses. 

I took the picture above from just outside the room.  At one point, once Pete was stable, I couldn't be in the room anymore - it felt to overwhelming.  The doctor had told us "welcome, get comfortable, you will be our guest for a while" which meant we weren't going home anytime soon.  I was so overwhelmed I couldn't even process what he was trying to say.

Another tender mercy was that my brother Nate and his wife Lauren had come to stay for the weekend at our house.  They live in San Francisco but had been in Utah for a couple of weeks.  They have a two month old baby boy and Nate just happened to take the week off work for paternity leave {which he had planned months ago}.  I don't think it was a coincidence at all that he and Lauren had planned to be at our house this week.  Heavenly Father, who knows all, knew that this was going to happen and that we would need help with Truman and Bodie and keeping the house running.

Nate and Lauren and baby Tagg ended up staying at our house the entire week taking care of our kids.  It was such a blessing to not worry about Truman and Bodie, infact, they thought it was great getting all that attention from their aunt and uncle!  Because RSV is so contagious Lauren cleaned and sanitized our house from top to bottom including washing all the towels and lines.  She is amazing and I joke that if Tagg ends up being an only child it will be our fault!  She went from taking care of their studio apartment and her own new born to taking care of two additional energy filled toddlers and our 6,000+ square foot house.  We never once worried about Truman and Bodie and could never thank Nate and Lauren enough.

My dad also took the week off work, he didn't fly back to Indiana for the week, that way he and my mom could also be around to help with the kids, and support us and Pete.

Once Pete was stable and sedated the doctor started to run through some possible diagnosis with us, Pete's apnea episodes could have been caused by a number of illnesses.  That is when as a parent your mind starts to wonder.  We were kind of sad that the rapid RSV test came back negative because as bad as RSV is, it was kind of our best-case scenario.  
By 6:00 PM on Sunday night we were just getting settled into the PICU at Primary Children's Hospital.  The picture above is of Pete in his new room with all the doctors and nurses getting an update from the staff from the trauma department that had been working with Pete all afternoon.
Gregg and I were both in a state of shock.
Right about the time things started to settle down in the PICU we got a call from the lab letting us know that Pete had tested positive for RSV {human respiratory syncytial virus} and rhinosvirus.  It was actually a huge relief to hear.
In the picture above you can see my finger in the top left pointing to the gray lines which represent Pete breathing on his own and the black lines showing the breaths the ventilator was doing for him.

Shortly after we receive the diagnosis Tiffany and Aaron brought food and came to see us.  I had no appetite what so ever but  I knew I needed to eat to keep my milk supply up.  We found an empty conference room just outside the PICU where we sat and ate.  It was kind of nice to step away from the situation, breath, laugh and be with family.  At 8:00 PM we were aloud back in the room to be with Pete.  Tiff and Aaron came in to see him for a minute, then Lynn and Bob showed up with some Cafe Rio {which makes everything feel better}.  They also took a turn to see Pete {only two visitors at a time were aloud back in the room}.

Lynn and Bob had already had a big day despite all that was happening with Pete.  They had all the Simons family in town for two of their grandchildren's baby blessings.  Before they headed down to see us they had stopped by our house to grab some of our essentials for the night.  While at our house they had a big family prayer with both sides of our family.

We found out that only one parent could stay the night in the room with the child so we decided it was best if Gregg went back home with his parents to get some sleep.  Before Lynn and Bob left we found a quite room {a.k.a. the large family bathroom} where Bob and Gregg gave me a blessings.

Although I was left alone with Pete for the night, it felt like the right choice.  It didn't make sense for one of us to sit in the waiting room all night, we needed to take care of ourselves as well.  

Sunday night on our families Google hangout my family asked how I was doing, this was my response,

"I am am emotional wreck! Trying to figure out how we are going to survive with Pete in the hospital all week :(
I feel a little better now that we know what it is.It's so hard not being able to hold him or feed him.  That will really play with a new moms emotions!"

Monday, March 31

Sunday night went really well, nothing changed with Pete's condition and I actually slept okay.  The worst part was the "room" we where sharing which had a curtain on both sides of us.  I discovered that out of all the rooms in the PICU we were in the worst one.  On one side of us there was a rather large and very strong black teenage boy who was caged in his bed and often spoiled his sheets which then had to be changed {like at 4 AM} and on the other side of us was a little boy who wailed in pain and wanted to be held {and I have no idea where his parents were} it totally broke my heart.
During the night {really there is not such thing as night around a hospital} the nurse put a feeding tube in Pete's nose directly into his intestines so he could start getting my breast milk.  They didn't put it in his stomach because they wanted to keep that empty - they didn't want him throwing up and aspirating.

Another miracle is that I had been pumping about a bottle a day of milk since Pete was born and freezing it.  I didn't know why, what a tender mercy.  I talked to the lactation specialist and learned all about how to keep my milk up and pump while at the hospital {which I was really nervous about loosing my milk supply}.  They had Pete on a rotation between the colostrum that I had pumped and frozen when he was a new born and fresh milk that I pumped all week while at the hospital.  The colostrum helped Pete have regular bowl movements and was full of vitamins and minerals while the fresh breast milk provided more fat.
Monday my mom spend almost the entire day in the room with me and Pete.  Gregg stayed in Midway to get some pressing work done {why is work always so busy at the most inconvenient times?}  Pete responded amazingly well to people talking to him or touching him.  It made me never want to leave his side.  They kept him heavily sedated so that all his energy could go toward recovering.
I can not even begin to describe how hard it is to see your sick baby laying there and there is nothing you can do for them.  All those 'motherly' instincts and you can't act on them.  I cried every time I had the urge to hold him or snuggle him.  I kept tucking his blankets up around him because it was the only thing I could do.  I couldn't even begin to think about not nursing him, it was almost like I went through a little mourning.

Monday we also found out that he tested negative for the 20+ other viruses and bacterias they were worried about.  Now we were focused on getting Pete strong and heathy and breathing on his own.  The trend with RSV is that it does get worse around day 4-5 before it gets better so they expected that Pete might get worse before we were through with all this.  

It kind of felt like a catch 22 - the goal was to get him off the ventilator and breathing on his own, but we also were anticipating that by around Thursday his condition could get worse.  

There is really no way of knowing where Pete got RSV, probable from Truman or Bodie.  When we asked the doctors if we should keep our kids home from church or school they said no.  RSV is everywhere, you just have to be diligent about washing your hands.  They were adamant about us still living our lives.
Primary Children's hospital really is an amazing place.  It's not somewhere you ever want to find yourself, but if you do, you are in the best care and you truly see how amazing people are.  

Monday while my mom was watching {and talking to, and singing to} Pete, I went to lay down and try to rest.  After about an hour nap I went back into Pete's room to find this cute stuffed Snoopy animal that the hospital had brought to him.  There was a tag on it explaining that it came as a donation through a KSL fundraiser.  As simple as this generosity was, it meant the world to us.  Someone who I will probable never meet made a donation which bought the stuffed animal which was then given to Pete while in the hospital, which put a smile on our faces.  It made us feel loved and it made me realize how good people really are {and I sent these kind people in Tremonton and note letting them know that}.
Monday night we found out that parents in the PICU can request a "sleeping room" pictured above.  One parent can stay in there while the other is in the room with the child.  Because things calmed down {not very many kids in the PICU} we were able to get one of these sleeping rooms for the next several nights.
Gregg and I both really liked our nighttime nurse Ian.  He and his wife were expecting their third boy any day so he could relate to us and our three boys.  The first thing he did Monday night when he started his shift was give Pete a bath and I got to help!
Even though Pete was completely sedated and intubated I still liked giving him a bath and knowing he was all clean and fresh {he did throw up a bit that night}.  It was so hard not to be able to hold him, comfort him, or nurse him.  
This was pretty much the scene around the clock.  We constantly talked to and touched Pete so he knew we were there and so he would remember to breath!
I though Pete's foot sticking out from the blankets all lit-up from the blood oxygen cuff was funny - I took this picture in the middle of the night.

When we started the day the ventilator was giving Pete 34 mandatory breaths a minute, we ended the day at 22 which was really good progress.  He was down as low as 14 but after an hour they felt like he was working to hard so they slowly turned it back up and finally felt comfortable back at 22.  The goal is obviously to wean him off it all together - the plan was to try again at 4 AM in the morning.  

Monday night as things were winding down for the day we got a call from our doctor back in Heber, Dr. Haderlie.  He had gotten a report from Primary Children's saying that Pete was in the PICU so he called to see what was going on.  We told him everything we had been through and what the diagnosis was.  It really meant alot to us that he could take the time to call and check on us and Pete.  

Tuesday, April 1
I knew it was April fools day but it still took me a minute to get this picture!  The children's advocacy people came in and took a picture of Pete and then hung up this Christmas card as a joke.  I thought it was cute that every day they did something for the babies in the PICU.
He opened his eyes for the first time on Tuesday since getting to Primary Children's on Sunday.  It was only for a split second - he kind of looked like he has been through a war.  They also slowly started to wean him off the sedation medicine.

A missionary companion of mine, Sister Breinholt {now VanAllen} came to visit on Tuesday and make me laugh, which she is great at.  She lives in my sisters ward so my sister told her what was going on and told her I needed a good laugh {it really was the best medicine}.  The best part was when Ashlee got to the hospital she lied to the front desk and told them that she was my sister so that they would let her in - I got a text saying
"I'm your sister ... tell them to let me in.  It's not a total lie, we were sista's in the field once upon a time."
At first I didn't even know who it was because I don't know her as Ashlee, I don't even know her as sister VanAllen.  To me she is 'Breinholt' and that is what I still call her - and in return she calls me 'Quinn'.  It's to weird {even after 11 years} to call each other by our first names!

She sat and we talked and laughed together for almost two hours.  I really appreciated the visit and the laughs, and the candy she brought!  Somethings never change!

Tuesday we also received a care package from a friend we had been in the same ward as us.  She has been in and out of Primary Children's with her own son trying to find a diagnose for some complications he is having so she knows what it is like.  We were only in the same ward for a short amount of time, but she knows what it is like to be at the hospital and sent us the kindest care package with the best essentials for an extended hospital stay.   Our testimonies have definitely been strengthened by the goodness of others.

At 4 they turned off the ventilator and let Pete breath on his own for an hour - he did it, but was working really hard.  I think I burned 10,000 calories just watching and worrying. 
This is what it looked like when the doctors, nurses and respiratory therapist came in {twice during the day and twice durning the night} to evaluate Pete.  They decided to let him do another one hour trial breathing on his own in the afternoon.  
I didn't get a picture of it, but on Tuesday afternoon a good family friend of ours, Aaron Lovell came to visit.  His younger sister was one of my roommates at Rick's college and his family is long time friends of my bother-in-law Aaron's family from back in the day when they lived in Oklahoma.  He is as good as family and we really appreciated his visit.

In the afternoon they wanted to try again and see how Pete did breathing on his own.  The hand on the monitor in the top right is the respiratory therapist turing the machine off so Pete could do another trial breathing on his own.
We all watched and waited as Pete breathed on his own.  23 minutes into his hour long trial he started to hold his breath and his stats started to plummet - heart rate went way down and so did his Co2 levels.  They immediately turned the ventilator back on. 
Such a bummer.
That was the moment I felt like we were never going to get out of that place.  I felt frustrated with Pete that he would not breath on his own, I felt hopeless, and I wanted more then anything to hold him. 
All I could do was go out in the hall and cry.
I was mad at myself for crying and I was mad at myself for being so impatient with Pete.  The staff could all see how upset I was {I really was trying to keep it under control} and how hard it was for me not to hold him.  After a few minutes our nurse demanded,
"This ma'ma needs to hold her baby, let's get him stable and let her hold him".
I could not believe it.  
I know this picture is not glamours, non of them are!  And they were all taken with our cell phones.  But, it shows the raw emotional state I was in.  I finally got to hold my baby and I bawled as they put him in my arms.  
I sat there for over 2 hours.  

When our nighttime nurse came on shift and saw that they were letting me hold Pete he gave us the biggest smile, it always felt good to know the nurses cared so much too!  I had to set Pete down so they could do a check up and change shifts but everyone promised I could hold him again.  Our nurse Ian encouraged us to shower {ha, ha, take a hint! I am sure is what he was thinking} and to go out on a "date" to dinner, so we did.  I think those nurses must have some secret training in psychology and how to deal with the parents.   He said he would be the best babysitter Pete ever had - and it's true.
We went down the road to Chili's and had a late dinner.
Most expensive date EVER.  It wasn't the food, it was the babysitters!  But Pete was in the best hands at Primary Children's PICU.  We smuggled some food back into the hospital for the nighttime nurses as a little thank you {they wanted chips and salsa}!
When we got back to the room Dallin and Becca where there to see Pete.  We had a great time talking and laughing.  Laughing really is the best medicine, we were always looking for a good reason to laugh :)

Wednesday, April 2

We didn't end up doing a trial breathing session Tuesday evening but we did try again early in the morning on Wednesday.  Our nurse woke me up so I could watch, we all sat there, in the dark, watching.  He only made it 10 minutes.  He was taking 80 breaths a minute when it should be 50-60 and his heart rate dropped to around 105 when it should be 120-160.  So out of all three tries, he had progressively gotten worse.
After talking to the doctors {this is one of them who broke his foot climbing so I took this picture for Becca}, we decided to let Pete "rest" for 24 hours.  Theoretically RSV peeks on day 5 and technically today would have been day 5 so we decided to let all his energy go toward fighting.  When I held him the night before he started to get a fever so they gave him Tylenol and they had to give him more through the night.  Their best guess was hat his fever was caused by his body fighting off the viruses.  
I was known as the 'blanket master' among our nurses.
Apparently without even realizing it I as always tucking Pete's blankets up around him tightly.  I guess it was a mother's instinct since I couldn't do anything else!  Finally one of the nurses kindly told me that they were regulating Pete's body temperature and that I kept throwing it off by adding blankets.  They tucked his blankets nicely behind him to try and satisfy me.  I felt so bad!  I didn't even realize it, but every time I walked into the room I was putting his blanket on him, when the nurse came in she would take it off, then I would put it back on, back and forth all day!

Pictured above his arms are wrapped in the blanket to keep him from trying to pull out his tubes - and he is unsaddled because they are were trying to cool him off from his temperature {and my extra blankets} Oops!
Wednesday afternoon was filled with lots of holding time before I left Pete to go home and shower and snuggle the other kids.  I was in a good place emotionally and needed to escape the hospital for a little bit.
Family picture in the hospital!
Pete was no longer sedated so he started opening his eyes more and more.  The sad thing is that he couldn't use his vocal cords because of the breathing tube - so you could tell he was crying based on his movements and his face, but nothing would coming out, it was so sad to see.
Wednesday night Gregg sent me this 'selfie' holding Pete.  The nurses and Gregg were really trying to encourage me to stay home and get a good night sleep but you have this weird 'guilt' knowing that your baby is in the intensive care unit.  While at home my dad handed me a pill and told me to take it, so I did.  I told him I was feeling dizzy so he told me to go lay down - I woke up 10 hours later!  I still had my coat on, glasses on and my cell phone in my hand.  He had given me an Ambien.  Apparently I needed some sleep.

While I was at home asleep Nate went to see Gregg and the baby and I hear they also went out on the town for some dinner together.  Thank you Nate.

Thursday, April 3

At 4 AM they let Pete try to breath on his own and he did for the entire hour!
He never held his breath and his stats never dropped.
You can see in the monitor above that the gray lines were him breathing on his own and the black were the ventilator, but keep in mind that the ventilator is doing mandatory breaths that is why there were still some black lines.
Because of all the tubes and wires and stuff they would come in and turn Pete's head every few hours, it was so sad that he couldn't do it on his own.
At about 2 PM Thursday afternoon this was the scene as they extubated and Pete was suddenly breathing on his own again.  What a great feeling!
He was put on high flow oxygen, he hated it and I don't blame him!  The nurse said it would be like sticking your head out the window while driving down the freeway and trying to breath!  I would hate it to.
We named him "The Lorax"
We got this picture text from back home that said, "in honor of baby Pete we are reading The Lorax tonight for a bedtime story"
The nurses gave him some tylenol to help him be more comfortable.
Our friend Aaron Lovell came again to visit Pete and we teased Tiff and Aaron that Pete was going to call Aaron Lovell uncle Aaron instead of his real uncle Aaron.  We really appreciated his visit - even if it was in proxy.
My friend Tami also stopped by to see Pete on her way to work and brought these yummy treats.
Our nurse asked if we cared if Pete had a binkie and I must say I have never been more happy to give my kid a binkie.  I was so curious to see if he would take it or remember how to suck or even want to suck.  He took it like a champ and I was SO happy.  And it also helped him to breath more rhythmically.
And there was more holding time which really was amazing {I know that sounds cheesy, but when you haven't been able to hold your newborn or nurse it kills you}.  It did wonders for my spirits.  

Thursday afternoon a very dear friend of our family, Mary Cook stopped by.  Her and her husband were my neighbors in Park City growing up.  Richard was our home teacher for a lot of years.  They have been like second parents to all of us kids, in fact I think Richard has sealed all of us!  They own another home not far from the hospital, when they heard we would be in the hospital for an extended amount of time they gave us the keys to their house and said we could stay there.  Mary had stocked the house with food and clean sheets.  I am telling you, people are so generous and kind.
Thursday night we were moved to a much more spacious and more "private" room.  I thought it was funny when the nurse said,  "your baby now qualities to be in a room with another child with the same virus." Awesome.  So we care share viruses and never get better?!
It was a much bigger room in a much better {very quiet} location in the PICU and our "roommates" was a 2-month old girl with RSV.
Thursday night I had a really special visit from a college friend, Andrae.   We were in the Interior Design program together at Rick's and I always looked up to her, she is an incredible talented designer.

Her and her two girls and husband had already come up to visit us on Monday night.  We met them in the ICU waiting room where they gave us loads of great stuff to use while in the hospital including a CD player and CD to play in Pete's room and leg warmers for Pete {his feet were always cold}.

Thursday night Andrae came by herself to visit and this time she came back in the PICU to Pete's room and sat next to his bed with me for several hours where we ate orange and red slushies with vanilla ice cream in them {!}, and talked, and cried.  

The reason it was such a special visit is because 18-months ago she was in the PICU with her four-and-half year old son who had had a terrible accident.  He didn't make it, and it was in the PICU not far from our room where she last held him before his spirit went on to do greater things.  When she first heard that we were in the PICU with Pete she immediately gathered things we might need and brought them to us - she had told me she wouldn't be able to go back into the PICU and see Pete but that she wanted to meet us in the waiting room.  The day after that visit she texted me and said she wanted to come back - and see Pete - and be in the PICU, she said she felt ready.  I felt kind of honored in a way that I got to be there with her for the first time since Miles passing.  To say our time together on Thursday night at Pete's bedside talking was spiritual would be an under statement.  It might very well be the reason that Pete got sick and that Gregg and I had to go through all of this and the reason that Andrae and I have become so close since Mile's passing.  I will never ever forget our talk and the way I felt and the things we shared.

She is an amazing person and I am thankful for the things that she has taught me, and shared with me.
She writes an amazing blog which can be found HERE.
She also wrote more details about our visit together in the PICU which can be read HERE.
This was my dinner Thursday night at midnight down in the hospital cafeteria, by myself.

Friday, April 4

While we were in the hospital I had to start pumping so that I wouldn't lose my milk and so that Pete could get it threw his eating tube in his nose.

The first morning in the hospital I met with a lactation specialist who gave me some great tips.  I have NEVER been great at pumping so I was kind of upset when this whole thing happened and I quickly realized I would not be nursing my baby anytime soon.   

The lactation people wanted me to be pumping 30 ounces a day!  Whole cow ... literally!  I don't think I have ever made that much milk in one day in my entire life.  But I took their request seriously and I tried some of the tips they shared with me and I started pumping, often!

I kind of feel like I turned into a cow!  Ha.  Really, it was a good thing!  I was able to pump and keep up with the demands of Pete which I consider a miracle and tender mercy.  We all know mom's milk is best and Pete never once got anything other then my milk AND I went home with TONS of extra milk!
This was the stash in the freezer after 5 days.
And this was the milk in the fridge ready for Pete to get.

Another tender mercy was that since Pete was born I had been pumping about a bottle a day and putting it in my freezer at home.  I didn't know why {other then it is nice to have a little stock pile for when you want to go somewhere}.  When we were in the ER on Sunday the doctor had asked me about nursing and pumping and such, when I told him I had colostrum and milk in my freezer at home he asked if someone could bring it to the hospital right away {which my mom did the next morning}.  They rotated between the colostrum and my fresh milk the entire time we were at the hospital.  The colostrum was full for vitamin and minerals and it helped Pete have more regular bowel movements and my fresh milk was more fatty.  It was a perfect combo and now I know why I was pumping and freezing milk at home.  I consider it all a blessing.
They would put it in these syringes and hook it up to a machine {pictured below} that would feed it to Pete on a set schedule.  He was getting 2/3 of an ounce every hour.
Pete did not like the high flow oxygen one bit.  He would wiggle his hands out of the blanket and pull the oxygen out of his nose.  They started to bundle him tighter and somehow he would still manage to wiggle the oxygen out of his nose.  Stinker.  They did turn it down to an 8 and are going to continue to lower it as he can tolerate the Co2 on his own.

I wanted to write a little bit about how amazing the Ronald McDonald foundation is.  So many people at Primary Children's come from all over the United States and they often find themselves in Salt Lake for extender periods of time.  The Ronald McDonald house {near the hospital} is a place where those families can stay.  In the hospital is the Ronald McDonald Family Room where families can go during the day while at the hospital.
The best was to describe it is it's like going into a nice Marriott Courtyard hotel - but in a hospital.  You can relax, watch TV or movies, use the computers or business center, do laundry, take showers or cook.
Gregg and I would sometimes go there for a minute to have some food or take a shower and get a mental break from the hospital room. 

The kitchen is stocked by donations from local companies and people.
Gregg asked if I was taking a picture of the dinner calendar so I would now what was being served all month!  No, I wanted to remember how good and kind people are.  There is this huge chalk board calendar filled up with names of people and businesses who provide a warm dinner for families in the hospital.  We were both amazed at the kindness of complete strangers.
Stampin' Up is also a huge contributor to the Ronald McDonald house.  I found this basket of cards that were all donated that families can use to send to people.

Saturday, April 5
Saturday was a great day full of progress for Pete.  He was weaned down to a 4 on the high flow oxygen.  Yahoo!  That means he is getting stronger and stronger.
When my aunt Joan found out Monday morning what had happened with Pete and that we were in the hospital, she knit this cute lemon hat and sent to Pete.  It helped keep all the wires and oxygen in place since Pete was constantly trying to pull it out.
The Lemon Head Lorax!

By Saturday Pete had had an IV in both hands and both feet :(  I felt so bad.
Gregg took over the nurses station and made it into his work station.  He was SO busy with work while we were in the hospital - he listed two house and sold two.  Luckily we can work from pretty much anywhere and we can be kind of flexible.
We listened to General Conference from our hospital room while watching over Pete.  It was a great conference.  I teared up several times while listening to the talks, especially this one, because that was us - the ones in need who were on the receiving end.

Here is my favorite part of that talk which now has new meaning to me, 

"Often we are given the opportunity to help others in their time of need. As members of the Church, we each have the sacred responsibility “to bear one another’s burdens, that they may be light,”8 “to mourn with those that mourn,”9 and to “lift up the hands which hang down, and strengthen the feeble knees.”10
Brothers and sisters, how grateful the Lord is for each and every one of you, for the countless hours and acts of service, whether large or small, you so generously and graciously give each day.
King Benjamin taught in the Book of Mormon, “When ye are in the service of your fellow beings ye are only in the service of your God.”11
Focusing on serving our brothers and sisters can guide us to make divine decisions in our daily lives and prepares us to value and love what the Lord loves. In so doing, we witness by our very lives that we are His disciples. When we are engaged in His work, we feel His Spirit with us. We grow in testimony, faith, trust, and love."
Elder Ronald A. Rasband
Pete made such great progress that at about 5 PM they let me nurse him.
I cried.
After a week of not nursing he nursed like a champ, just like nothing had ever happened.
That was another blessing.  Because he could now eat on his own they decided to move us out of the PICU to the normal hospital.
Sunday, April 6

During the middle of the night they moved us up to the fourth floor to the children's pediatrics section of the hospital.
Once we got there they took Pete off the high flow and put him on regular oxygen, like an old man.
They started him at 10 milliliters a minute and were able to quickly ween him down to 1/4 of a milliliters a minute.  
Luckily we only had to stay one night in the regular hospital because the sleeping arrangements were horrible.  We didn't get settled into our new room until 3 AM.  Everyone kept telling us that there was room for both Gregg and I to sleep in the room so we both stayed at the hospital.  There was this little pull out chair {which was actually similar to what I had been sleeping on} but they expected us BOTH to sleep on it.  Thanks to Gregg for taking this super glamours picture of me sleeping!  That is what a week of sleep in a hospital will do to you.
By Sunday evening we had completed all the necessary paperwork to check out of the hospital.  Pete had been eating on his own for 24 hours and having regular bowel movements.  His blood oxygen levels on room air where in the mid to high 80's so they felt more comfortable sending us home with oxygen.
 When we got home Intermountain Home Health met us to set up this huge oxygen tank and a 50 foot tube for Pete.  We also have a small tank when we need to take him places.
We will start seeing Dr. Haderlie now for check ups and to determine when Pete can come off the oxygen.  We will also be taking Pete to the hospital twice a day to get his boogers sucked out so he can breath and heal faster.
 It feels so good to have our baby back and looking more healthy.
I immediately snapped these pictures when we got home.
 Here he is checking out his new accessory!
And we got, what looks like, his first smile Sunday night.
He is happy to be home too!