I Know... there are A LOT of pictures, but there is updates after them all!

FINALLY HOME! Both slept amazing! Harmonee
loving being back in her own bed was snoring,
giggling and talking in her sleep. Layla slept
great knowing that sis was just feet away! They
both slept in the next morning! THANK YOU!

Daddy, trying to get Harm to fall asleep,
another day, another NPO order, another
delay, another UPSET baby!

Not wanting to give his little angel up
after she had finally gotten to sleep!

Layla was showing me how to play with
this fun little toy while waiting for Harmonee
"Look mommy," she would say, "Like this."

Passing more time, it seemed like hours.
Daddy and Layla coloring pictures.

After Harmonee went back to get her PICC,
Layla decided to pretend she was Harmonee
by putting her binki in her mouth and
sitting in her place. Silly.

Our new nightly routine... take a few... add a lot!

Our full nightly routine!

Waiting for Dr. Book to come tell us we can go home!

Talking to London and Liz! Look at those cheeks!

Home at last! Time to sleep!

This was a picture that Liz gave me.
Christ is in the surgery room helping the surgeons.
I loved it!

We didn't get admitted! By the looks of her you wouldn't be surprised that we didn't. She looks good with her tiny tummy, even her yellow skin looks somewhat good today! While walking up to liver clinic a lady commented on how bright her eyes were. Thinking she was meaning the blue AND yellow, I agreed. After a minute or so of looking at her walking and talking she commented, "she has a great tan, its so pretty. Was she born with it?" A little surprised that she would think it was a tan, especially how white I am, I just smiled and nodded.

I also got to see Liz and London. Talking to Liz is always a great help, especially how open she is and how willing to help she is when talking about the ups and downs of waiting for a liver. I could talk to her for hours. I watched London walk around while waiting for the doctors to come see us both, I could only imagine Harmonee doing that in a few months. London looks great, happy and healthy one year old! Everything that I want Harmonee to be in October.

We got Harmonee's PICC fixed on Saturday and since then we have been getting use to doing it ourselves. We need a little practice, but we aren't half bad if I do say so myself. Of course we are a little more... maybe a lot more, paranoid then we were with her NG tube, but with it being a sterile procedure and it being a little more risky if you mess up, it only obvious why.

Harmonee's stool is also so green it is almost black. The nurse told me her son had biliary atresia when he was born as well. We both thought it funny how little things like dark stool color catches our eye. All in all Harm is doing great! Still stable, still waiting for a liver, and still gaining the weight!

Day 15... Going home?

Good Morning!!
So... I decided this bow reminds me of something
off of Horton Hears a Who.

"Mom, what are we waiting for?
Its time to go home!"

Saying bye-bye to the nurses!

Giving loves!

Sis helped me bounce....

Tired now... to much bouncing

And I am good!

15 days, a new PICC, a new NG, a few different meds, few infections later, and some more tune ups and... We are home!... until Monday? No. Until when? Until now. Shouldn't this be a record? 8 hours after being discharged from the hospital and we are on our way back? Yeah, I say this is a record... if not just for Harmonee but for a lot of people. I about died when I found out that we had to be back at PCMC tonight, already!

We are hoping this is just an over night stay. Tonight when the at home care nurse came to teach us how to do her TPN and lipids, Harmonee's PICC broke.
Just our luck. I know. If it wasn't enough that I forgot the meds at the hospital today in all of the excitement to leave that we had to go back tomorrow anyway, and back Monday. But its okay, if it keeps Harmonee out of more harms way, so be it, we'll make a few back to the hospital.

Today has been a good day other then her PICC breaking and forgetting the meds. She has only thrown up once and has kept everything else down pretty well. Sis and daddy were happy to see Harmonee and have her home.

Harmonee said bye-bye to all of the nurses and to her liver friends, grabbed her moose and headed for the door. After being home about 5 minutes she was already reaquainted with her bouncer, play mat, and swing. She had to dodge sis's sticky hands a few time from grabbing at her NG and PICC line. After a while Layla realized she shouldn't be playing with these things and made sure to be careful around her after that. But getting antsy again she pulled the NG and PICC out of her new "Harmonee baby" that the hospital gave her so she wouldn't mess with the real Harmonee baby's. But like always Layla couldn't stay away from her new and improved (for the time being) little sis.

Harmonee has slept a lot too. The comforts of her own home has really affected her and made her one happy little girl! Of course, like any little girl, Harmonee would fall asleep for the minute and then be wide awake making sure she didn't miss anything. And she didn't. At dinner she made the rounds from daddy to mommy, making sure to sit on our laps, making silly faces, laughing and smiling with sis. It was a great family reunion. Tomorrow sis will come to the hospital while they replace her PICC, and play in the "forever young play zone" and maybe depending on the events of tomorrow, me and Brandon will take her to see the baby animals at the Heritage Park for a little R & R time.

Week 2...

Today was not the best of all days. Harmonee, being the kind of girl she is, stayed up all night watching TV.Though she didn't whine (unless the TV was turned off) and was happily content all night she didn't have the best of all days. On top of being so tired that she couldn't sleep, her gums have swelled getting her ready to start teething. You can imagine how our day went with that.

Along with tired teething she still hasn't been able to keep anything down. Her day was also spent throwing up formula, meds, and stomach acid. The normal for her. Only this time it brought a fever along for the long ride.

After a long debate before coming into Harmonee's room weather or not for her to go home, Dr. Book wanting to give Harmonee a few more tune ups before going home, and the resident arguing "she can't live here". They finally came to the agreement that maybe they should let Harmonee go home for a few days, and they meant a few days. The plan as of now (no promises or expectations) go home tomorrow, then come back on Monday to liver clinic at 9:20 a.m. Dr. Book reminding me to bring an over night bag. Of course there was a twist. How could there not be. She has to have gained weight and no fever. This might jinx us. I have to admit, at least they did give me a 'few' days.

Right now Harmonee is asleep finally. I guess she didn't feel like staying up and watching TV all night again. I guess that is what I get for letting the girls listen to lullaby's when they are drifting to sleep. Now they can't sleep with out noise.

Harmonee and I got blessed tonight. Our newest liver mom lent us her daddy and brother to give them to us. They were so touching, and such a reassurance that how ever Harmonee's fairy tale (if you can call it that) ends, it will be a happy ending and our family can make it through it. It is sad and odd to think that if Harmonee had gone home just one day sooner, or their little Jordan would have gotten diagnosed later or sooner, that we would not have met. Things work in amazing ways.

Day 13...

Checking out all of her new cords

Mom... Whats this one go too?

New toys! For me! Okay!

Harmonee has been in a good mood all day! She spent most of her day playing in her bumbo with all of her new tubes, or toys as she prefers. The doctors didn't anything to say about her today, except "We'll see about you going home tomorrow," pause, "but don't plan on it" and we wont. Our past experience has cured us of expectations. Our future is full of waiting in many different ways.

Her liver call still hasn't come. Obviously. But we are getting closer. Dr. Book started her request to get her more points and a higher spot on the transplant list. and as everyone says about everything here... "hopefully soon!"

Brandon leaves in July for his summer training in California for a month. Thenleaves again a month or so after that for two more months of training and then to start his deployment. My friend Nikole is coming up from Hawaii to stay with me and help out with the girls until her husband returns from his deployment.
Of course we naturally want the liver to come early with the situation we are in, or anyone really would want to have their child's liver come quickly. Her weight has dropped once again. Me nor the nurses are very surprised that it has dropped. She hasn't been able to keep anything down. A half ounce of formula comes back just as fast as her meds, all over then floor, hitting everything in its path. The doctors and nurses thought that her NG tube would help her from throwing everything back up. It hasn't. So the next step is an NJ tube. Lets hope that works.

Today was our first day of not having anything to be "discussed" with doctors, nothing to keep us here in the hospital or to cause more worry then we already have. From paraflu to staff infection to managing blood labs we have nothing to tune up for this stay. Harmonee's tummy has even gotten smaller, back down to 50 cm. If she keeps this up maybe we wont have to come back once a week to get her tummy drained. Just MAYBE. We will see how things go.

**PELD SCORE: 24**

Day 12...

The doctors didn't say much about Harmonee or when she might be able to go home. The main point of the conversation was how big her tummy had grown over night. Before they tapped her tummy yesterday her it was at 54.5 cm. After 49 cm. Now, not even a day later her tummy is back to 54.5 cm. The doctors are debating on letting us go home ("in a few days") and coming back once a week or more to tap her tummy. This would be better then saying at the hospital with sis at home missing her little 'Marnee' and mommy. Not to mention us missing her and daddy.

The doctors are debating on putting Harm's NG (feeding) tube back in. She hasn't been able to keep her meds down and her formula is coming back threw projectile vomit! Hitting everything that is in its path, floor, bed, nurses, and of course down the front of her clothes. I have to admit it is entertaining to see four nurses helping to clean up a little five month old yellow baby girl. Of
course Harmonee is spoiled here by the nurses! Cute blankets and comments. She has won the hearts of all that have taken care of her.
(I'll put pictures of her and her nurses up soon!)

She has continued to gain though! Which is good for miss Harm. we are at 6.325 kg, or 13.5 lbs. The doctors are happy with her and her growth and happy to say that she has no illnesses, finally, just a low potassium rate which is easily fixed.

I met new liver parents today who have been staying across the hall from us. Following Liz's (liver mom) example I asked their nurse to introduce me to them. Their little baby boy was going in for his Kasai today to fix his biliary atresia. I remember when I was waiting for Harmonee to have her Kasai, more then I should, along with who the nurses where, what both me and my husband were wearing, times, the night before, the PICU and when we finally got to the floor. I hope their sons Kasai works so they don't end up where Harmonee is now, though she has definitely kept her spirits up and has kept going pretty well! Today Harmonee is stable, we have made it through another week of waiting. Soon though! The doctors are starting her request for higher points today! Cross your fingers!

**PELD SCORE: 24**

Day 11...

Today we got the news that Harmonee's kidneys are starting to fail. The doctors are going to try to reverse this by lowering her does of diuretics, then gradually raising her dose again to keep her acidies low. Her tummy has gotten more fluid in the last couple of days, so today the doctors are going to drain her tummy. This is hopefully going to help her start breathing better.

The doctors are also going to put in a request to get Harmonee's PELD score higher then it is. They seem confident that were she is she will get a liver, but not confident enough to leave it at that with how fast her body is starting to shut down. Dr. Book said it would be better to do her transplant in a few months so that she has time to get a little bigger making the transplant easier and less risky.

Harmonee's nights are bad, filled with vomiting, and little comfort. Her days are better, some more then most, filled with smiles and giggles, and the joys of a 5 month old baby. The hope of going home sooner then later and being with sis and daddy is still there and cross your fingers it will be this week or first of next...

**PELD SCORE: 24** - down 2 points

Easter Day in pictures...

here comes Peter cotton tail, hoppin' down the bunny trail...

Gunner got an Easter Groom this year!
Love the scarf Ellie! Nice touch!

Harmonee's Easter!
I spent all morning making Harmonee
her new Easter bows! I couldn't wait to
see them on her! She looks so cute doesn't she!

Harmonee made out from PCMC, and

also has a lot more coming when she
gets home! The Easter bunny brought
her a basket, a moose, and a duck full
of candy. Brandon and I got her some
new leg warmers and bows (which we
gave her today) but when she
gets home she has a few cute outfits
I cant wait to try on her!

Harmonee's new Baby legs!

LAYLA'S EASTER!
I was able to go home and see Layla

anxious to open her presents!
I loved seeing her and Daddy this weekend!

ALL of Layla's Easter presents! I went

home last night to see Layla get her
Easter baskets this morning.
Her first words when seeing them... "WOW"!
Layla was spoiled by grandparents!
She got a picnic table from Gma and Gpa Jensen.
Her pretty dress and shirt and summer hat from
Gma and Gpa Phillips, and Princess dress ups from
Mommy Daddy and Baby sis.

PRINCESS LAYLA

HAPPY EASTER EVERYONE!

Me and Harm getting her ready to take a long bath.
She had a high temp and didn't want to but after she
was cooled down and was feeling a better then she
had all day!

Another bad day... but she slept it off...

She was feeling REALLY good this day.. can you tell?
Isn't that the prettiest smile?

Okay, her tummy wasn't small enough for her
to lay completely flat... But I thought this was
the cutest thing!

Day 5: She slept on her TUMMY!! Her tummy was
small enough it didn't hurt her to rest on it! First
time on tummy since December!

Day 4: not feeling to good again this day
she just had her bath and didn't want to
wake up again...

Day 3: A few hours after getting her new PICC line.
Its hard to say if she was more happy that she was able
to take her NG tube out, or that her meds were going through
her PICC instead of her mouth...

Not feeling to good the next day. Before getting her
PICC line on Saturday. She was very congested and
tired...

Day 1: Feeling pretty good after getting her tummy drained!

Never alone...

a sister is gods way of proving he doesn't want us to walk alone...


Harmonee wasn't feeling to well the day we were admitted...
This was taken before we came down to liver clinic.
Layla gave big sis loves to her to make her feel better.

Big sis loves... they always make everything better...

Hush, little sister
Please don't you cry
I wish I could be there
To sing you a lullaby
I know you scream
When I'm not there
Hush, little sister
I know you're scared
I can see the scars
and things they do to you
I'm sorry, little sister
but they have too
they will make you feel better sister
and soon you'll come home
That makes me excited, little sister
You shouldn't have to feel alone
Hey, little sister
mommy is right there
don't worry, little sister
this I will help you bare.
You see, little sister
mommy will hold you close by her side
sleep good sister in your crib
Mommy's right there.. so don't you cry
don't worry about me
I will be waiting by the door
see you soon, little sister
we can play upon the floor.
You know, little sister
I haven't lied
so don't be bothered
don't let me hear your cries
hush, little sister
soon you'll be home
tucked away in your bed
we'll never be apart
I'm sorry little sister
you had to go through this right from the start
Be brave little sister
the call will come soon
Hush little sister
You don't need to cry
I will be here by your side...

Day 9...

Newest discharge date... Monday. Looks like we are spending another holiday with PCMC nurses. Last night things were looking fairly well that she would be going home today. She was eating, not congested, no temp, no stool replacement, until last night about midnight. It was a long night. I was able to get Harmonee to eat an ounce before she vomited. Thinking this was not only normal for her, but for her disease I brushed it off, changed her bed and went to bed myself. In a while I was wondering if Harmonee was really still asleep. Harmonee wasn't asleep but half awake. So I put her binky back in just in time to have it pushed out with vomit. This continued for a while.

After looking at a few high lab results and hearing a lot of congestion the doctors decided to watch her. Tomorrow she will get another chest x-ray if her congestion doesn't clear. The doctors are thinking it could be pneumonia, RSV, or paraflu again.

Tonight I am going to go home to wake up Easter morning with Layla and see her get her Easter basket, and to spend time with her. Brandon isn't able to come up this weekend because of work obligations. Tomorrow once he gets home we will come back up and see Harmonee and I will stay here until she is allowed to go home, or until the weekend when Brandon comes up to spend the weekend with her. We will see what happens.

**PELD SCORE: 26** -up two points...

One week later...

I have been horrible at posting this hospital stay. I have been distracted by online classes I have been trying to get done so when I have the time to go back to school I wont be as far behind. Its been a week since we have been back at PCMC. Its starting to feel like this stay will never end. We were first admitted to drain Harmonee's tummy on Thursday, our first discharge day was assumed to be Saturday. On Friday they diagnosed Harmonee with Paraflu, pushing our discharge day to Monday. On Sunday she was diagnosed with a staff infection in her central line. They put her on antibiotics and hoped that it would stop by Tuesday and we could go home. Tuesday came and Harmonee was again diagnosed... this time with a bladder infection. Our new discharge date was Thursday. Which happened to be yesterday. Unfortunately yesterday came and gone and the GI doctors told us Harmonee's temp had to stay down and constant for 48 hours. Friday (today) was our new discharge date. This time with no expectations of home the doctors told us Harmonee's sodium is to high. "Tomorrow" they say, but then adding, "don't plan on it though". What's that suppose to mean?

Harmonee has started to gain weight again though! Not as fast as she dropped but it is coming back. Her tummy looks so good too! It has stayed at 48.5 since Monday(ish). Yay Harm!

Yesterday while talking to her transplant coordinator she seemed not to have much hope of going home before her transplant. In a way that would be a good thing. Since we have been back so many times in the past 2 months and only staying home for hardly a week at a time, it seems more realistic. The hospital is where you come to feel better... after that your just open for more illness, especially a baby in her situation. Which is the draw back along with not going home in itself. Hopefully we will be able to be home by Easter. It would be our first holiday out side of the hospital since thanksgiving! Not to mention Layla is just missing her little sister. Nap time isn't the same with out cuddling up next her little Marne. Brandon (daddy) hasn't been able to come up as much as he would like either, making him want his sleepless nights back, at least for a week (hopefully more).

I will be happy to get home to sleep in an actual bed and be able to see Layla and Brandon everyday! I am due for a week of stress free family time AT HOME.

Everyone has been emailing me and text messaging me, "where are the pictures?" I am sorry, I left my phone hook up at home this time. As soon as I get my hook up I will put some on. I was looking at the pictures I have taken from this hospital stay. Healthy days and sick days, the pictures seem to go in a roller coaster with her ups and downs. You will be surprised how one night changes the way she even looks in pictures.

**Harmonee's PELD score is 24**...it dropped :/.