Thursday, February 18, 2010

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.

Tuesday, February 16, 2010

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

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.

Sunday, February 14, 2010

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."

Friday, February 05, 2010

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.

Wednesday, February 03, 2010

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*)