We are back again... to our home away from home PCMC. It's not so bad anymore. They drained her tummy this morning just minutes after being admitted and getting to her room. The nurses were even rushed to get her vitals, height, weight, etc... the usually when being admitted, and get her to x-ray as fast as they could. It would so nice not having to starve her, then wait on typical delays of everyday hospital problems. This time they drained 240 ml from her poor tummy, which has now dropped to 46.5 cm from a 51 cm when measured in liver clinic this morning. I wasn't able to be a match for Harmonee, which has added more stress. But to help, Amy, Harm's transplant coordinator said they have received liver offers specifically for Harmonee. Unfortunately, these offers had to be declined because of problems with the liver. One liver was actually excepted but given to another baby because Harmonee was the "runner up". I know it sounds like bad news, but its easier to look at the brighter side then get overly jealous of the baby who received the liver instead Harmonee. Now I can say that Harmonee is on the top of the transplant list and the wait is going to be much shorter then the 7 months wait I was at first expecting. I am so happy that it is going to be sooner. Dr. Book said she is very sick now and needs one as soon as one becomes available it is Harmonee's. This news came at the right time! The stress was getting to be to much and all to often were the walls closing in with no way out, and tears start runny with out even a second thought of emotions going through my head. I have the optimism that this is going to end soon! No more waiting. No more painful nights. No more admits to drain a tummy that will be just as big in a week. No more waiting next to the phone with crushed hopes when its not the hospital calling. It will soon all be better! Although lets hope that it isn't for a few more days! Harmonee was also admitted because of a little fever she has been running. They did tests to see what it was today, we found out that it was a respiratory infection. If a liver did come in at the moment, she wouldn't be able to receive it due to her fever.
***
Harmonee now has an at home PT as well who has been working with her. She is getting better at balancing her tummy on top of her little legs and letting the rest of the strength in her back help her to sit up. She is learning to reach out for stuff in front of her and using her little fingers. Her PT, Anna, said that she was on schedule for her age, except because of not being able to do tummy time, we have to do a few different exercises to keep her on that schedule. Mentally she is caught up... plus some! Since it is really the only thing she has been allowed to work on because her physical attire doesn't allow much, mentally she has gotten very strong and getting stronger!

Harmonee is back home! We are all a little surprised that she came home on a holiday instead of spending the full day with the nurses down at PCMC as she has with every other Holiday. She is tucked in bed with her new pump working its wonders, doing great! Hopefully getting ready to have a FULL nights sleep since formula is being constantly ran into her little tummy. Her at home care nurse just left after giving Brandon and I the education how to work her new NG tube and pumps and everything else that she came home with from this hospital stay. Layla is staying at Grandpa Phillips house with Brandons sister who just flew in from Michigan, Harmonee is anxiously awaiting to see her tomorrow. But, as for this quick up date, I am off to bed to hopefully catch up on the lost sleep we had at the hospital. Today is a good day and we all have our fingers crossed that this day turns into a good week with maybe some good news!

Harmonee's hospital stay wont be very long, she gets to go home to her sister tomorrow! I have sadly started to love these random hospital stays for the simple reason that even though Harmonee hates her stays, she goes home feeling better then when she first was admitted. Today her little tummy was drained, and while I was finishing being tested for live donor, Harmonee was loving' life being the nurses little helper. Harmonee had a fun day and is now sleeping it off happy and comfortable!

This hospital stay has reassured me that nothing is a for sure go until Harmonee has her new liver in its place in her body and she is getting ready to be taken to the PICU. I was able to finish my 'live liver donor' testing today, and have been given the go ahead, although following has also been the agonizing delay of 'NO' and 'Maybe'. This morning I was able to start the day with a positive attitude since the first thing I was told was everything was a go and there would be no more delays. They were going to set the transplant up for May, I was even letting my excitement get the best of me by seeing wishful visions of Harmonee walking along the furniture and crawling after Layla. Unfortunately due to Harmonee losing weight and not growing, a maybe came into the equation on if she would be big enough to receive my liver. After a few hours of waiting while the doctors had meetings and calculated weight by size, they came to the conclusion that she would have to gain her another 6 pounds before my liver would acceptable. Harmonee doesn't have that long. A cadaver would become available before the live donor transplant could take place. But that was no problem, I would still be able to be her donor in the case that a cadaver does not become available before time. So to end the night we are again at the worry of waiting for 'the call', either to tell me that everything will be okay for the live donor, or the call that Harmonee has a cadaver waiting for her. At least we get to look forward to going home tomorrow and being with Layla and Daddy. Right?

I haven't updated in a while and since we are back in the hospital and I am having troubles sleeping, I feel a need to be on my lap top to pass time. What better way to pass time on my lap top then to blog about updates and such for those of you who follow Miss Harmonee throughout her sickness. Last Monday at liver clinic daddy got to go with us. Since it was his first time being able to come the transplant team was more then welcoming keeping him up to date and filling him in on the missing/forgotten words I had not relayed to him. Of course it was rather nice having him at the appointment, doing all of the talking and filling the team in on Harmonee's latest. Unfortunately they set a goal for Harm to be eating at least 24 ounces out of 28 ounces a day with micro lipids. Telling a baby with no appetite and no will to eat more then maybe 15 a day after being pushed too... it just doesn't go well. Harmonee ate okay for the first few days, but soon started to vomit everything back up and once again dropped her eating habit to about 7 ounces in a 24 hour period.
**
Today we came to the ER, where they did some lab work and waiting for a room, while daddy and grandparents got education on the transplant surgery by our lovely coordinator Amy. Finally back in our room we got a lot of breaking news.

News #1: We were given the news that her ultrasound (which they had done while she was in the ER) showed a lot of fluid build up in her little tummy. The doctors decided to drain it in the morning, (which brings us to why we are having to spend the night) Fortunately, Harmonee gets the be the first one to get her little tummy drained right at 8:00 a.m.! No delays. But once again Harmonee will be NPO until after her procedure.

News #2: Harmonee had to have an NG placed. Which for those who don't no it is a feeding tube that goes down through her nose into her tummy. They have been dripping formula since we got to her room. Harmonee looks like she is already starting to feel better getting a little something her tummy along with the formula she does manage to eat by mouth. Which has only been about an ounce so far but with constant formula going into her tummy that is pretty good. This will also help her not being able to eat since she will have gotten plenty to hold her.

News #3: I am a match! I still have a few more tests to go through before we are able to actually do the transplant, but at least there wont be any more waiting! The scare that Dr. Book gave us by telling us that by how sick Harmonee is she would need a transplant within 3 months to prevent a constant stay until a liver became available is over! I am a match and hopefully soon Miss Harmonee wont be just watching Big Sissy Layla play and run around but will soon be crawling after her as fast as she can! The two besties will finally be able to play!

Since my time is running short of sleep and Harmonee will soon be awaken and hungry I should probably try to manage a few minutes of sleep before then. Thank you all so much for your prayers and for following Harmonee and taking the time to learn about her disease and others like hers. God has truly been with us.

Sitting with Daddy 1 day before getting admitted to drain my tummy.

The works...

Playing with my rattle in the hospital, passing time...

Sleeping off the anesthesia

After having my tummy drained

After...

Before going to get my tummy drained...

Before

Before...

My crib... Can you tell mommy has a lot of extra time on her hands???
Not that much...

My cute butterfly wand from London!

***

The past week has certainly been eventful. Last Monday during liver clinic Harmonee was admitted during her first appointment. Her belly was very tight, the doctors didn't have to think twice about admitting her. Monday we spent waiting in her room relaxing preparing for Tuesday morning where Harmonee was not allowed to eat any formula after 3 a.m. and no clears after 6 a.m. Her belly was scheduled to be drained at 12, noon. At 12 noon ultrasound called her nurses and told us it would be delayed a few more hours because of a stubborn case. As we tried to entertain Harmonee as to help her not to think about her tummy growling she was finally taken to ultrasound and put to sleep. After finally getting her to fall asleep, the doctor drained 500 ml from her poor tummy putting 300 ml into infection tests. Harmonee slept the rest of the night. Wednesday brought a big surprise to all of us! Harmonee was doing so much better! Her poor tummy was so much smaller, she was able to move and be comfortable and was happy to feel a little more normal! On Friday we went to Ogden Regional to have some more labs done which also came back good! Today, was another liver clinic. After a close call of almost being admitted for the 3rd week in a row, we were allowed to come home on the condition we come back next Monday to check on her little tummy and make sure the fluid hadn't built up again.
***
Today at liver clinic we saw another liver mom, Liz, whose daughter, London (lulu) had just received her transplant in January. It was so nice to see her and such a reassurance that this might be a long road that we are on, but there is a goal. I asked her how she did it, and I really look up to her for how much she has been through. Sometimes it feels that I don't know how much more I can see Harmonee go through but seeing Liz and London gave me hope. London gave Harmonee a little butterfly wand which we found out today is the symbol for organ donation.

Tired after a long day of jumping with Layla in my new bouncer!
Daddy told mum "That is a peaceful angel"

Yeah... That's right... My feet reach the floor!

Hi Mum!... wait... is this ANOTHER picture?
***

Harmonee is finally in never land, dreaming of kittens, and puppies, or perhaps visiting her heavenly friends. Whatever a little baby of her age finds pleasing to dream about. I have been sitting here watching her smiled and give little giggles as she dreams, thinking about what kind of things could have happened to have her be the one to have the disease that she does. I have been wondering lately what happened to all of my medical knowledge, or if I had any at all in the first place. After all the years of schooling, all of the tests and quizzes, nights of studying odd subjects to perfection. When it comes down to it, I wonder where it might disappear to when it comes down to my own little babe. Why when the doctors start talking about Harmonee's illness, labs, or other such things that she will have to endure, why it might seem like a completely foreign language, not the same language I have spoken for many years at work, to different patients, doctors or other nurses. Why does it all seem to disappear when it comes down to my own child?
**
Harmonee has made considerable amounts of progress the past few days! Grandmum and Grandpa Jensen brought her a bouncer that has helped her sit up better with out hurting her little belly. Layla taught her how to bounce in it today! They both bounced all day giggling with each other! It was such an amazing sight to see! She looked at me with the "look at me mum!" smile! I almost started crying, of course those tears came later when I was able to hold her with out her crying out in pain, but welcomed my hugs with a smile!
**
Its overwhelming how much has happened in the past month and a half! Let alone the past week. Starting her PELD was such a big step. It ended a short, but tough chapter in our lives but opened a new, more intense and eager chapter. The chapter of waiting on a liver. When we found out that we were not able to do live donor a haunting thought came to mind, and hasn't quiet left yet, but has gotten stronger, and more frequent. The thought that someone out there is getting ready to give Harmonee her second chance liver. It breaks my heart knowing someone out there will be giving there life to god in just a few short months. My heart breaks for the family, but already I am in love with them for allowing their loved one to be a donor. Even though they don't know that it may happen yet, and I don't know who it will be, I am very grateful to them! I hope someday, somehow, whoever gives Harmonee their liver, that I will be able to meet their family someday and give them my deepest respects. It may be early to think of that, but knowing our last choice is a cadaver liver... it is hard not to.

Home at last!

Harmonee and Layla were happy to see each other. Layla kept
asking for Harmonee to come sit by her! She was so happy and full
of hugs and kisses for her little sister! It was the sweetest thing!

I got to sleep while I was in the ER. Mum didn't, it turned
into and exhausting night!

I had a lot of nice long naps after we got to the CSU

I was in the PICU this day, waiting for a room in the CSU
LETS GET OUT OF HERE!!!

Sitting in my bumbo passing the time so I can see my daddy tonight!

Blowing Kisses to my angels!

Fell asleep... Again...

Mom just likes taking pictures... can you tell???

Its been an eventful few days. On Sunday Harmonee was able to come home from the hospital a lot sooner then we had expected. Granted from my license and degree's in nursing, I was more persuasive as to not to come home Monday (which was the plan) and turn around and come back on Tuesday. After deciding that it was safe for her to come home with me, not having a very big 'trouble' area the GI doctor decided that it was fine for her to go since I would know what she would look, or act like if she needed to return. Monday her belly started to swell again and got up to almost 56. Her scar looks like its stretching, and looks painful, but you would never guess if she was in pain from the big smiles and chuckles she gives you! Today we went to her transplant evaluation meetings to receive an estimated PELD. From the labs that she had in the hospital, her PELD was 16. In order to be at the top of the list she has to be in the 30's, which is not what is wanted. For now we are fairly low and grateful. She had her labs drawn and an EKG done. Next week she will receive a few more educational meetings with a chest x-ray, and ultrasound of her liver for the cherry on top. All in all its been an eventful week and hoping not to have one in the near future, unless for her cadaver liver.

Back at PCMC updates

We are back at PCMC. We got to the ER Friday. Turns out Harmonee has c-diff, something caused by antibiotics treated with antibiotics, a diarrhea, that made Harmonee get dehydrated. Dr. Book called Friday and told us to come as soon as we could. I have never see a more crowded ER. There were kids who had been raped and kids who had been hit with a car, it made for a long wait. I started thinking about the people who had scarred those poor kids for life. Thinking of what they were doing right then, knowing they had just done what they had, could they really be proud of something like that? I couldn't imagine being the parent! I don't know what I would do if it was Layla or Hramonee. After getting some fluids in the ER we finally got Harmonee a room in the PICU. We spent most of the day here, trying to finish her fluids and get her ''well'' enough to go to the floor.
**
I am beginning to think Harmonee would rather spend the holidays with the nurses her at PCMC than at home, since we haven't yet been only able to celebrate Thanksgiving with her. I guess that was enough of that. Once again we are on the 3rd floor at PCMC, and it is Valentines day. Harmonee is doing good, is off all of her IV's and intensive monitoring. Her eating had dropped to about an ounce every 4 to 6 hours, and then to nothing at all. Daddy came to visit us to bring some cloths and other necessity's. Surprisingly enough, being a daddy's girl, she wouldn't eat for him either. They started her meds for her c-diff, and the nurses get to dress up in yellow suits to come into our room until the end of our stay, which will hopefully be short. The on call GI said Harmonee would be receiving her feeding tube today. We all have our fingers crossed that it wont happen, Harmonee ate a whole 6 ounces in one sitting last night and again in the morning! Doing good!
**
The bet is still on! What color of hair will Harmonee have? Any guesses? There is a tally bored, provided by our dear primary nurses betting her hair will be red, brown, or blonde. The eye color was also added yesterday, green like daddy or blue like mommy? Every time I think about Harmonee's hair it reminds me of getting her put into the Dears system for the army. "What color of hair does she have?" the airman asked me, "well... she doesn't have any." the airman looked at me and smiled, putting "not applicable" as the hair color. Her belly is a round 51 cm this morning and shrinking (another time to cross your fingers and pray). I think everyone was relieved last night when we got the news that her liver wasn't any sources of as to why she was not eating. Prays are certainly answered for this little girl! I have many pictures for everyone to follow, only I forgot my device to upload them onto the computer... so as for right now "pictures coming soon."

Liver Clinic



Quick stop at Wal-Mart, then its off to a day at PCMC... notice the long face

My start to a LONG day at PCMC... waiting to get my IV placed, then its off to Dr. Book,
and then down to my Echogram, when dream land comes against my own will.

Dreaming of a new Liver... and some food... while waiting for Dr. Book
(I wish she would keep bows in her hair. I have really cute ones but she just keeps pulling them off)

Newest Trademark

Healing nicely... :)
f(Notice, yet again no bow... its in her left hand... the one out of the picture :( )

Dream Land...

Miss Harmonee

***

It's been a late night. One of those nights that you go to bed and can't seem to stop thinking about one thing long enough to go to dream land. I read another "liver mom's" blog today. Her daughter had just received her transplant. The process is so quick after you receive the call that a liver has become available. But the healing process seems so hard, even though her daughter is such a trooper, an amazing inspiration and someone to look up to. This ''liver mom'' has gotten us through more then expected. We met during Harmonee's first days at PCMC, the advice she gave us has worked wonders. I cant imagine how it must be to finally be at the point where your baby isn't waiting for a liver anymore. But its even harder to imagine the person, child, or baby who will give Harmonee her liver if we can not find a live donor for her. The liver mom said how hard it was to think that she hadn't held her baby in a week, but a week ago, another family held their baby for the last time. I cant imagine how hard it must have been for that family to make the decision of their little baby going back to live with god. I wonder if they know just how many lives they saved that day by making that choice. That day the donor gave the gift of life, by giving their own little life back to god.
**
Harmonee just called me to feed her her midnight bottle. It seems that she eats less and less each week that passes. Each day seems like another little bit of a bottle is sewn out of her feedings. Today, between a 12 hour span, I was able to feed her 10 ounces. We have had better days. I have seen and I have heard of how baby's with liver disease slowly stopping eating as much and a feeding tube will be placed, but before seeing it first hand it has all just been stories. I wish I knew how things were going to turn out for Harmonee, knowing that we are just at the beginning of this whole process seems like a negative way of thinking. I can't wait until Harmonee can know the feeling of ''healthy'' or at least ''healthier'' in her sense. She knows nothing more, and hasn't had the privilege yet of knowing what ''healthy'' really feels like. Or so I am reminded by people who are hearing her story for the first time. Harmonee does know how to fight. Fight for a life she hasn't yet been able to live. But for that life she knows how to appreciate it more then any other "healthy" person who has "lived" knows how to appreciate their own. She will also learn, like so many other children or people who have had a transplant or needs a transplant how to respect her body in a higher sense then any one thought possible. Her body truly is a heaven on earth.

Harmonee and her puppy Gunner
(my little baldy LOL...)

Harmonee and Layla (Harm pulled her bow off just in time for pictures. Unfortunately she would scream every time I put it back on. So, no bows today :( )

Layla and Harmonee

Harmonee in her blessing dress
(She left her bow on *YAY*)