Saturday, January 30, 2010

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.

Sunday, January 24, 2010

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.

Friday, January 22, 2010

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.

Sunday, January 17, 2010

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.

Thursday, January 14, 2010

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.