Wednesday, June 24, 2009

Today's Appointments

So many appointments, so much of the day at the hospital. It is always such a blur when I get back from the doctor's office. I never know how I should feel or why I always feel so upset. I know Hope is sick and it just seems to make it seem so real when I have to spend the day with doctors.

So, here's how the day progressed:

1st - I get my ultrasound. I used to love getting an ultrasound, but now I just spend the whole time worrying that they may find something else wrong with Hope. Today was actually pretty good...I got to see my little girl again and boy was she moving around and giving the tech a hard time. Everything is pretty much as expected. She is a little smaller than Dr. Silber would like, but Jerry and Paul were small too, so I am not worried.

2nd - I get to meet with Dr. Silber and have my blood pressure and my urine tested. All is good there! Dr. Silber ordered a glucose test for the next appointment (July 8th - two weeks...I was hoping not to come back for a month). I am hoping I can talk Dr. Silber into waiting a month after my next appointment.

3rd - Meeting with Palliative Care and Genetics. This meeting is probably the hardest one for me all day. There is so much to think about before Hope is born and I know it needs to be is just so hard to think about. I have a few Birth Plans to look over and think about before we meet again. I have also found a few online and want to incorporate everything I can think of into the Birth Plan. The hardest things to think about right now are the 'what-ifs'. What if Hope is not doing very well when she is we want to intubate her, do we want a Chaplain to be there, do we want everything to be done to keep her alive or just let her go naturally...I just don't want to think about all of that and I think that is why it is taking me so long to write up a Birth Plan. We talked about different ways we can ensure that we have as many memories as possible and everyone was very supportive of making sure I have pictures, foot imprints, hand imprints, and basically eveyrthing I could think of to make sure I have memories. The last thing we talked about was the possibility of Hospice Care and that was by far the hardest discussion I have ever had in my life. I feel very strongly that if there is nothing Dr. Smith can do for Hope that we will let her die naturally. The only issue I really have is that I don't want her to die at our house. I just don't think there is any way that I would be able to live her if she died here. It would be too depressing and I don't know if I would ever be able to get over the pain. There are options, including staying at the hospital or having her admitted as an inpatient at a hospice care facility. I am really not ready to make that decision and I don't know if I ever will be able to make that decision.

4th - Echocardiogram with Dr. Patel. This was also pretty uneventful. No new information and everything seems to be staying exactly the same. Dr. Patel thinks this is good least she is not getting worse. I like how he thinks. He doesn't talk much while he is doing the echocardiogram, but when he is done he always spends time with me going over what he found. He really didn't have much to report today, but at least it wasn't bad news.

After all my appointments it was really nice coming home. Jerry did a lot of work on the stairs while I was gone and the boys were happy to see me. I love knowing how much they miss me when I am gone. They bring more joy to my life than I ever imagined.

1 comment:

  1. Hi, I read this and my heart just aches because I know that I will have to go through the same things as you. I have my next appointment on July 7th and I am looking forward to it but at the same time dreading it. I hope I can keep strong like you.