A new room

August 12, 2011

The doctors started having us feed Keean strictly by tube and only wanted us to give him 5-10ml's by mouth for comfort. 

A scary thing stopping a baby from eating by mouth is that they potentially could lose their ability to suck, which in turn could cause them to have to re-learn how to eat.  We didn't want this to happen, obviously, so we really forced the nuk on Keean as well as allowed him to eat some by mouth.

At this point, Keean had only thrown up once (instead of the numerous, can't even count it all on 2 hands kind of puking he was doing before).  Being the feeding tube was passing through his stomach and into his intestines, Keean did experience some cramping at first from the feeding tube, but that also seemed to be getting better.  He was getting outside and we were just waiting around monitoring his weight every morning and crossing our fingers we were on the right path. Keean was getting 24 calories/ounce at this point (again the standard is 20cal/ounce). 

Like I said before, we were doing pretty good.  It was day 8 in the hospital and we were told 5-7 more days just to keep an eye on things.  It wasn't going to be too bad.  I would be home by the time school started and could be there for Mason when he started 6th grade.  I was offered a position at the school working 4 hours a day as a para which would be perfect and I wouldn't even have to call and tell them I wouldn't be there!  Awesome!  Things were good.  And I was counting down those 5-7 days like a child does counting down for Christmas. 

We were also offered to move rooms.  We had been in the small room with no bathroom and barely any room for 3 people and a chair for 8 days.  When we had visitors we would go in the family lounge so everyone could fit. This room would have a bathroom and was about twice the size of the one we were in. They told us the only stipulation with the room is we wouldn't have a window.  WOOP-TE-DO.  I didn't care.  I would take no window over 3am walks down the long hallway to use a restroom and to have twice the space.  The window view from Children's Hospital in Minneapolis was nothing to brag about anyway.  Not sure if any of you have been there, but let's just say I'm not sure who thought up the location of a beautiful new Children's Hospital, but I would love to talk to him/her and hear the logic behind the place they decided to build.  It makes no sense. Let's just say I was scared to leave.  It was an ok thing that I couldn't see outside.

So, we moved to a bigger room and with this move came new nurses.  We were still in the Infant Care Center, but it was a completely different wing.  This was ok with me, but it is always a little scary letting new people learn Keean and us and our routine.  Now, I obviously know that I had nothing to worry about, but then it was just something else to stress over: new faces, new personalities, who I could trust, who I didn't want in our room and getting to know our "neighbors" and their stories.

We all moved, we settled in and we kept on counting 5-7 days and we could escape and start our life back home again!  I couldn't wait....

This picture was taken in the hall right outside our new room.  Keean and daddy were taking a walk while we were able to get out in the halls and go outside :)

The Ronald McDonald House

I figured I should take a break from Keean's story for a moment and talk about one of the BEST things we had offered to us at Children's Hospital in Minneapolis.......The Ronald McDonald House.

I had visions in my head of what the Ronald McDonald House was and looked like, but I never really understood it until I was there.  They offered me a room the very first night I was there.  Of course I refused.  I was the crazy mom who wouldn't leave her baby alone with those nurses who knew nothing. (of course I don't really feel this way now, but at the time no one knew anything about Keean besides me and his dad).

The Ronald McDonald House was new to the hospital.  Unlike other hospitals, this one was attached to Children's and you could access it from the 3rd floor of the hospital.  This was AWESOME because that's where Keean was.  The Infant Care Center (or ICC) was on the 3rd floor along with the NICU.  To be honest, I'm not sure how long it would have taken me to utilize the RMH if it weren't on the same floor as Keean.  But it was.  So, I was right there.  In case anything happened.  I didn't have to travel up elevators or stairs.  I could just walk down the hall.  I can't imagine how I would have handled it if I would have had to leave the hospital to stay.

I will never be able to describe exactly what this place was like, but it was beautiful.  If they were trying to make a "at home" atmosphere, they completely out did themselves.  It was perfect.  The pantry was open to all, there was a huge kitchen, nice comfy furniture, an exercise room, a patio so you could sit outside and a big screen television.  This part of the RMH was accessible to families and friends every day until 10pm. The rooms were behind a door you needed a key for.  In the morning you sign up to be on a list to get a room.  The rooms are first available for the emergencies and the parents that have critical babies.  If they aren't used up by these parents, then you are notified that you get a room to stay in for the night.  You would go check in and get your key. Check out was by 10am the next morning.  You would then be put on the list again and await the day hoping to get a room for the next night.  It was not an option to just get a room for the entire time, so every night you would check in and every morning you would check out.   I wish I had taken a picture inside one of the bedrooms, but I did get a picture of the living area.  The rooms had a nice queen size bed, a tv, and a beautiful bathroom with a shower.  It was awesome to go somewhere away from the beeps, the chatter, the machines and the lights of the ICC and to feel a little normal.  There were showers in the hospital restrooms, but it was more like a locker room shower.  At the RMH it felt more like home.  It was refreshing and relaxing.

There were people who volunteered their time to come serve a meal for supper.  Sometimes these people had never set foot on Children's campus, while others had spend months there with their children and wanted to give back.  It was amazing to see all the volunteers come feed complete strangers going through a tough time.  We have talked to our kids and want to go back and do the volunteer thing and give back like so many others do.

I am so very thankful for the RMH.  And so very thankful it was right inside the hospital so I didn't have to take a bus or a cab to sleep.  It was right there. Right down the hall from my baby.  And that was the only way I would leave.

Here is one of the only pictures I got of the RMH.  This is the view from the patio side looking toward the living room and dining room.  The girl in the picture is standing partially in the kitchen.

After given permission to take Keean out of his room, we thought it would be fun to sit with him at the RMH and watch some television.  Little did we know that this was not allowed.  OOPS.  The person from the front desk felt horrible, but asked us to leave and use the family room that was within the hospital.  The family room was right around the corning from the RMH and had couches, toys, a television and a kitchen.  We spend lots of time in there when we could.  BUT, our time with Keean being out and about outside his room didn't last too long.

One more week

It was now August 11, 2011.  One week after we had been admitted to the hospital.  We had packed up to leave twice and had our hopes up that after this feeding tube we would get to go home.  

I'm not sure if everyone is familiar with how Children's Hospital works, but they have Dr's who round for up to 1 week and then they rotate out and a new doctor would come in for anywhere from 3-7 days.  So, the doctor we had when we were admitted was not the doctor we had 2 days after we got there because we came in the middle of the rotation.  This is true with the pediatricians, the hospitalists, the GI doctors, etc.  

The pediatrician we had during the week of August 11 was one of our favorites.  When she came in to talk to us the morning of August 11 she was very comforting and talked about numerous things going on.  She said she noticed that Keean was really good at starting strong with something new and then he starts to show similar symptoms he was experiencing when he was admitted.  Because of this, she asked that we strictly tube feed him for 24 hours and only feed him by mouth for comfort.  She believed that Keean had begun associating food with pain and because of this was lacking nutrition to grow and feel better.  

At this point, the tests that were run had all came back negative.  His diagnosis was a "super-fluxer", Failure to Thrive and a stomach that was slow to empty.  Keean was puking up to 2-3 hours after he ate.  This was frustrating and discouraging.  Just when we thought we had gotten him to keep a bottle down, he would throw it up.  

Because of this, the doctor said she wanted us to stay for 5-7 more days to see how he did.  Our plan was to add back more through his bottle little by little with hopes to keep it down to grow and gain weight so he could strengthen the muscle that kept his formula down.  

At this point, we had adjusted to the idea of staying in the hospital.  We were in a routine.  We would take turns getting a good nights sleep in the Ronald McDonald House while the other stayed with Keean. Up to this point, we were not allowed to leave the room with Keean, so when we would go eat or anything we had to leave him alone.  When the pediatrician spoke with us, she said we had permission to leave with him!  This was so exciting!  To think that something so little as leaving the hospital room WITH my boy could make me so extremely happy. They only asked that we come back every 4 hours for vitals and to change out the feeding bag. Life was good.  Keean was happy.  We got to walk out of the hospitals 4 walls and take him outside.  And in our minds the end of our hospital stay would be over in 5-7 short days!!!!  The only thing missing was having our big kids with us.

The first feeding tube

I am using my caring bridge site as a reference to write some of these posts.  I don't want to forget any crucial information that may help someone else out and I want to make sure I include as much of his story as I can.

August 9 they told us that up to this point Keean's only diagnosis (which isn't really a diagnosis) was failure to thrive due to severe acid reflux and protein intolerance.  I was to the point where I really didn't care what you call it, I just wanted him fixed.  I wanted him to thrive, I wanted him to feel good and not be in pain, I wanted him to quit puking and I wanted to get out of that hospital. 

I remember when they first talked to us about a feeding tube.  They explained that it was a tube that would go up his nose, down his throat, past his stomach and into his intestines.  They wanted to surpass his stomach to avoid any reflux.  They told us it would be temporary.  Probably 3-4 weeks just to get him caught up and then they could take it out.  We didn't have to worry if he pulled it out because it wouldn't hurt him and it was easy to put back in. 

I remember clearly how excited I was for this.  Keean was going to have an upper GI done and then have a feeding tube put in. This tube was going to help his severe reflux and was going to help him gain weight and we were going to get outta that place!!!!  WOHOO!!  The procedure was at 3 and I think I was pretty much packed and ready to go home because I thought it was the answer to all the problems.  He just needed a little boost!!!

The above picture is Keean's daddy taking Keean down to his Upper GI and feeding tube placement.  Love that sweet face!!!  Below is after the procedure.  The tube is actually taped to his face so he couldn't pull it off.  It was hard to see all that tape on him covering up his cuteness, but if it helped I was ok with it!!!  He was exhausted!!!! 

Trevor and I got to be in the room with Keean through the whole procedure.  Everything on the Upper GI looked normal the tube went in perfectly!!!!  The whole procedure took about 20 minutes. The doctors started him out slowly getting feeds, but increased him to an ounce an hour.  We were told to bottle feed him during the day and tube feed him at night.

We were also told to give him a bottle when he acted hungry.  The first night he did not keep his bottles down.  The Dr. came to talk to us the next morning and said being he was still throwing up she would like us to stay at the hospital.  I was ok with that because when I went home I wanted to stay there, I did NOT want to turn around and go right back.  So, we planned to stay another night to keep an eye on his feedings, to make the doctor happy and to just be sure!

Looking back at my 2nd caringbridge entry I had to laugh.  Not because it was funny, but because of what I said.  It was August 9, 2011 and my post said, "If all goes well we should be out of here by tomorrow" referring to Children's Hospital.  BAHAHAHAHA!  If only I knew then what I know now!  I will just clarify....we did not get out of the hospital August 10. 

The first weekend

My husband had left the hospital to go back home the first night we were there.  I remember crying a lot and not knowing what to do with myself.  I was surrounded by strangers.  People looking in our room as they walked by, people walking by crying because of their situation and people who would just stop in and ask our story.  I remember being scared to leave Keean alone in the room to go to the cafeteria to eat.  The nurses ensured me he was fine, but what did they know.  I didn't know them and they certainly had no clue how to take care of MY baby.  Sure, they took care of super sick babies all day every day, but I wasn't going to trust complete strangers to take care of my child.  I literally left the room to go to the bathroom and that was about it.  They encouraged me to get some food or to check in at the Ronald McDonald House to get some sleep, but I refused.  I wasn't leaving until my husband got there.

I will share a story. It's actually kind of embarrassing and a little pathetic, but I will share it to give you all an idea of where my mind was the first weekend at the hosptial.

When my husband came back that Saturday he asked my sister who lives in the cities to come and get me.  He knew it was healthy for me to get out of not only Keean's room but the entire building.  He told her to bring me to get a massage and out to eat.  It was his anniversary present to me and it was a surprise.  Well, I'm not going to lie.  When my sister showed up to steal me away I completely lost it.  At first I completely refused to go.  I recall saying things like, "This is stupid"  "Why do you want me to leave when you know I can't" and "This is the dumbest idea you've ever had".  Yep, super cool.  I was a freak show.  I couldn't understand why my husband wanted me to leave the hospital when clearly no one else in the entire world could take care of our baby.  HA!  Well, against my will, I went.  I cried until we got to Panera Bread where I could hardly eat my sandwich and then we found a place to get a massage.  My stubbornness would not allow me to admit that I needed to leave.  BUT, I did.  The hubby was right (don't tell him I said that) and it was probably one of the healthiest things I could do.  So, please....if you are in my situation EVER, get out of the hospital.  The people there know what they're doing and you need to have some time away.

Anyway,

I ended my last post that I had some hope.  Hope that we had fixed Mr. Keean by changing the calorie content of his new formula.  I can still picture my conversation with the pediatrician that came in to talk to us.  We had been in the hospital since August 4th, a Thursday.  It was now August 7, which was actually our 1st wedding anniversary.  I thought it would be awesome to go home and start our new "normal" life on such a big day.  Well, my hopes and dreams of discharge were shot down quickly when the pediatrician came in the room.

We had been told that we could go home if Keean gained weight.  Well the morning of August 6th he had gained 1/2 an ounce so we were positive we were on to something.  When the pediatrician came to see us on August 7th, my husband was actually packing up the car.  She had to wait for him to get back from loading the first load before we could chat.  She said she wanted to weigh Keean one more time before we left as she had heard that he had thrown up and had some watery stool.  Ok, fine I guess.  You can weigh him, but then we need to get outta this place.

They took the scale in the room.  I was confident that he had either stayed the same weight or gained a little from the morning before.  BUT, I was wrong.  an OUNCE is what he lost.  One ounce down. :(  I wanted to scream.  The pediatrician said....and mark my words, "Against my better judgement I can send you home, but you will be back."  Sweet!  That is just the best news EVER.  So, the hubby went back down to the car to unpack what we had packed and I immediately started crying.  I have someone at home who also needs me and I don't know what to do.  I knew deep down the pediatrician was right.  What was going on with Keean was deeper than a formula change or a calorie change.  We just needed to figure out what.  So, we unpacked our stuff, got settled in once again and waited for more tests.

On our way to Children's

So, we were discharged from the hospital in Willmar on a Sunday.  It was July 31.  We went home with high hopes that things would get better with this extremely hypoallergenic formula.  Unfortunately, things started to take a turn again and we were headed right back where we started.

On Wednesday, August 3, 2011, we went back to our pediatrician because Keean was puking again and not gaining weight.  I will never forget the feelings I had.  Exhaustion, frustration, anger, sadness, guilt, desperation, etc. etc., it was tough to go back once again after thinking we had him figured out.  But, the biggest feeling I had out of the ones I mentioned was desperation.  I wasn't going to wait it out to see if things would get better.  I wasn't going to spend another night wondering if something horrible was wrong, I needed to find answers and I wanted them NOW.

So, we traveled to Willmar to our local pediatrician.  She looked at my husband and I and asked us what we wanted to do.  She asked, "What does your gut tell you?" And then said, "You can go to Children's where you have a team of experts to surround him, run tests, work together and try and figure out a plan, or we can wait it out here and see if things get better."  Well.....I wasn't waiting.  We went home and packed our bags.  We were heading to Children's in Minneapolis.

August 4, 2011 we packed up our car and drove the 2 hours to the hospital.  So many things were running through my mind.  I had to leave my 11 year old back home, I was really sad about this.  He was such a trooper and I know he was just fine staying with grandma, but it was hard for me to leave him.  I felt so torn. I wanted everything to just be normal.

I remember the trip well.  I cried.  A lot.  I remember telling my husband how scared I was to go back to work and how scared I was to find out what was going on with my baby.  All the "what-if's" ran through my mind.  Fear and anxiety had taken over.  Why can't I be as calm and collected as my husband?  Why can't I just wait for answers before I start worrying about the "what-ifs"?  I wanted to scream.  My mind was driving me crazy.

We were given instructions to go straight to the ER and they would start there.  We were admitted into the ER where I think we sat for 3 hours before anyone came in to see us. They knew it wasn't a crazy emergency so they took care of those before they came in to see us.

We finally got admitted to our room which was a tiny room in the Infant Care Center Unit.  This unit is typically for babies who have graduated from the NICU who no longer need the intense care, but still need more intense care than the pediatric unit.  It was specifically for babies and the majority were still working on growing in their incubators.  The fun part of being in this unit versus pediatrics is Keean was one of the biggest babies there (which was unheard of back home).  He was a giant compared to some 2 month olds on that floor.  We could handle that.  Keean was the biggest 2 month old on the floor :)  YAY!

I would be lying if I said it wasn't a huge slap in the face to walk through the halls of the ICC unit.  I can't imagine what it's like in the NICU if these babies had graduated from there.  It was tough.  They were tiny.  They had tubes coming from everywhere and there were machines that took up their rooms.  A lot of their parents had to get back to work just to make ends meet so they were alone.  Some of them couldn't be held even if their parents were there because they were too fragile.  I thought to myself how selfish I was to be so angry and upset that my baby was so sick.  Looking at these babies put things into perspective.  It could be worse.  Yes, it could.  But that didn't make it easy.

I missed my 11 year old, I was sad for my 2 month old and I was scared and uncomfortable.

We saw a few specialists the night we got admitted.  The GI doc we had traveled to see in St.Paul in July came to see us and so did an immunologist and a pediatrician. They took blood, pricked his heels, hooked him up to an IV, asked us a million questions and brought us our blankets and pillows to fold down their awesome couch for some sleep.

Above is a picture of the first room we had while staying at childrens.

Sleeping was tough.  It was cold, it was uncomfortable, it was loud and there were nurses coming in all hours of the night.  They wanted us to wake Keean up every 2-3 hours to feed him. The pediatrican who came in asked us to start mixing his formula back to the 20 cal/ounce becuase sometimes the 27 cal/ounce is too much for them.  So, we were mixing the 20 cal/ounce mixture and things seemed to be going well.  We thought MAYBE just MAYBE we had the right formula but we were mixing it wrong.  We thought that could be the simple fix.  I was scared to be hopeful, but I had some excitement that this was the fix and we would soon be going home.

Our first hospital stay

July 29, 2011.  It was a Friday and the first time my baby was admitted to the hospital.  We went to the doctor that morning because the puking and the diarrhea had not been getting any better and Keean was looking pretty sick.  We had lab work done and some tests run and our pediatrician told me that he was pretty dehydrated.  She allowed me to go home and pack a bag before coming back to be admitted.  We were admitted to Rice Hospital in Willmar on the peds floor.  The immediately hooked him up to IV fluids and started asking questions about his feeding schedule.  This made me kind of chuckle.....

A feeding schedule???? HAHAHAHAHAHA.  What's that? 

This is foreign to me.  Yes, I have heard of other moms saying their baby eats every 4 hours on the nose or know when their baby is hungry or just tired, but me? Nope. This had been awhile.  My first born was an awesome eater, but this had been 11 years ago.  Keean had no schedule.  We fed him when he acted hungry and when he didn't. We fed him what seemed to be all the time because we were desperate.  We wanted him to gain weight and we wanted him healthy. 

Keean was not only malnourished, he had low muscle tone so it was hard for him to lift his head or even grab on to my hand like most babies.  He kind of just laid there breathing, and lifeless.  His eyes were sunken in and dark and his ribs stuck out like he hadn't eaten since the day he was born. 

Our pediatrician came up to the hospital to make a plan.  She knew we had tried feeding every 3-4 hours and we had exhausted all of the other "plans" the GI doctor from St.Paul had come up with to this point.  She had knowledge of another formula that I had mentioned before.  It has the proteins completely broken down so Keean's GI tract didn't have to break them down at all.  It's a hypoallergenic formula.  She said we should try it.  If it didn't work, we would worry about that then, but she wanted him on it soon.

Well, if you are familiar with Rice Hospital, you know it isn't a big hospital and it's in the small town of Willmar, MN.  When our pediatrician told them the formula she wanted him on, they had to actually call around to see if there was any near by to get it.  Children's hospitals and other big hospitals typically have it on hand, but not our small town hospital.  We had to track some down.  I almost felt like we were doing something illegal.  Calling for hook-ups!  It was interesting.

Well we finally found the jack pot.  We located a case of Elecare.  The only problem was........it was 2 hours away :)  SUPER! 

Well, as luck should have it, our nurse's husband worked in the cities and was willing to pick it up for us and deliver.  AWESOME!!!!  Praise the Lord! We don't have to drive 2 hours to find food for my baby!!!! Thank you nurses husband!

We got the formula delivery and we started right away.  At this point we were up to giving Keean 26 calories/ounce of formula.  The normal concentration is 20 calories an ounce.  We were trying to come up with any way possible to get more calories in him. 

The formula seemed to be doing something good.  Keean was interested in eating again.  He had gained a little weight (if I remember right it was an ounce in 2 days) and he wasn't projectile vomiting or crying when he pooped. 

We were going home.  It was Sunday.  We had only spent the weekend in the hospital and we had high hopes.  Keean was tolerating his feeds and was happy and hydrated.  Our pediatrician was excited she "fixed the baby" and things were good!  But just like before.......they weren't good for long!