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*)

Harmonee had her Echogram on Wednesday to see why she had bradycardia. Fortunately the the cardiologist saw nothing wrong in any of the ultra sounds. For the procedure she had to have and IV placed because that had to sedate her. When we went back to the room where she was getting her echo done in the nurse gave her 3 medicines to help her fall asleep. Harmonee was so mad that she hadn't been able to eat for about 7 hours now refused to go to sleep at first. For about 20 minutes she was slow motion until finally she gave in and feel asleep. But before they were fully done with the procedure she started waking up hitting the doctors hand to get off of her. By the time we got her to post op she was screaming at everyone to give her some food. She's a stubborn girl!
**
We also had to go to liver clinic earlier in the day. They took her off a her prednisone (steroid) nystatin, and smz-tmp, but added metronidazole. At least it less then before. We start Harmonee's point system to see where she is placed on the transplant list her next clinic. We are taking her blood test, and we also get to take mine to see if we officially match. Dr. Book said we should have all of her tests done in a few weeks and by June we should have an actual 'plan of action' for her transplant. Her newest trademark is healing pretty well, but her tummy keeps swelling. Her tummy measured to be 50 cm at her visit. Hopefully it goes down, it looks so uncomfortable. She proves just how strong she is every time we go see her doctors.

Great news! Brandon (daddy) is back in the running for live donors for Harm! Technically before he wasn't 'out' of the picking. The doctor had said that his liver would probably be to big so there really wasn't a point in taking time to test him. But after having a few in detailed talks with one another we decided he might at well still ought to try. It is his daughter, and I don't think he could live with not even giving it a try. Of course if he is a match, we have to have a few more in detailed talks about income and what not since he is the only set of income coming in right now. But we'll figure something out, we always seem to do.
*
Dr. Book called and wanted to see Harmonee on Tuesday this week. We also have an appointment with the transplant coordinator. This means, we are officially going to start testing for live donors. I still hope that it is me. We are eating healthier and working on getting our livers healthy for our little girl. The first time we gave her her liver it didn't work out, this time, I want it to be perfect for her. Of course I am a little scared about the surgery, and I don't know how I would get along with out seeing Layla for a few months while I'm in the hospital, then not be able to do a lot of stuff with her for a few months until I got fully healed. But I am more then willing to happily give my liver to Harmonee. I am even working on getting my degree early and finishing in June instead of September. This way I'll be able to concentrate on Harm, not worrying about everything else at the same time. I just can't until this is all over and Harmonee can get on with her life... for the most part.

This was one of my better days :)!

Our morning and bed time routine

My sleepy day

Most parents usually would be happy to have their baby's sleep most of the day. It allows them to get things done, and to catch up on rest from the midnight feedings. Of course it would be nice for a day. Harmonee has been asleep for the past 3 days. Waking up long enough to drink half a bottle or to take her medications. During her bath I caught her eyes opening a little just to roll to the white again. Moving her didn't seem to phase her the least bit. At night it is nearly impossible to wake her up, and almost not worth it, just to get not even an ounce down her. I know Dr. Book told us that some of her medicine would make her sleepy, she also mentioned that liver patients tend to sleep more often as it is. We only have a few more days on this medication, I cant wait to be able to entertain my little girl again and see her smile and hear her laugh.

We made our first goals for Harmonee at Liver Clinic on Thursday. After looking at Harmonee's newest ultrasounds, both of her doctors predicted December or maybe even sooner. To help her reach the goals, we have changed her diet to progestamil, which is a formula to help her absorb fats, hopefully to help her gain weight and become an acceptable size. Our long term goal for her is to make it to December, the bigger and older she is the easier the transplant will be.

*

We have started testing for live donors. We are lucky to have so many friends and family who are willing to give Harmonee her gift. Brandon {daddy} was already ruled out of the picking. Next is me. I hope so much to be a donor so that when the time comes, Harmonee will already have a liver waiting for her.

*

But for now, Harmonee is as happy and healthy as a little girl with a liver disease could be. She is playing with Layla and today she is a normal 3 month old baby, who doesn't go to liver clinic, or have a scar across her tummy. Her disease is just a minor delay in her happy little life.

I started this blog so friends and family could track Harmonee's progress through out her disease and transplant. I started the day we found out that her surgery didn't work, and a transplant was inevitable, maybe out of sheer determination to distract my mind away from such ideas. Of course it is nearly impossible to get such things out of your head, especially when it is happening to your own baby. It is difficult to think that I am putting my babies life into anothers hands, trusting them to make the surgery possible, that it will all go well. I don't think any parent with children who are sick and needing a transplant or any other surgery can easily hand over their child for such a serious surgery.
***
The worst part about her disease is the unknown. Not knowing exactly when her transplant will come, who will the person be, that will be giving Harmonee her second chance liver, and what things may happen to her before the transplant. I have to admit, before all of this happened I was not a donor. No reasons as to why I wasn't other than the selfish not understanding. The past few weeks since she was first diagnosed has been such a life changing experience there is no way to describe it. Nothing is quite what I had thought of it before. I still don't qualify Harmonee as 'sick'. 'Sick' to me is a contagious cough or flu like symptoms. Realizing that 'sick' is a much wider range of definitions, and that Harmonee is now a definition of 'sick' has brought a broader understanding to the meaning of life for me.