Sad News - Kaia Passed Away

This morning I found out that sweet Kaia...a sweet little girl whose blog I have been following has died. She was born with HLHS and her mommy and daddy did not know about it until after she was born. I have been praying for her to be strong and recover from the surgeries and the news this morning devastated me. I think in a way that I was fast-forwarding my life to when Hope was born and I really wanted everything to turn out differently. I wanted and needed Kaia to go home and live a happy and healthy life. I can't seem to stop crying this morning and I know Jerry and Paul don't understand why I am so upset this morning.

Marilyn is coming to get Jerry and Paul this morning so I can do a presentation. My grandma is staying with mom for the week, so we are definitely taking time out of our schedule this week to see her for a while. We haven't been to see her since Christmas and I feel really bad that we haven't made the trip.

I think today is a day of reflection and my feelings have been so hard to hide lately. Hope has been moving more and more lately and I love to feel her. It shows me how strong she is and how hard I am hoping she will fight for her life. I just want to know that I am making the right decision...if she is a candidate for surgery. I don't want her to feel any pain if there is not a very good chance that the surgery will help and that she will be able to grow into a happy and healthy little girl. My biggest fears are that we will put her little body through surgery and she will pass away hooked up to machines, rather than in our arms.

I have more doctors appointments on Wednesday and thankfully Marilyn will be able to watch the boys again. I really can't imagine what I would do if Marilyn were not available to watch them. She has been such an enormous help with all of these appointments.

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 done...it 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 born...do 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 news...at 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.

Paul's 1st Birthday

Today is Paul's 1st Birthday! We had his party with the whole family on Sunday and he had a great time. He fell asleep shortly after opening and playing with his new toys. It was great seeing the whole family together and the kids all had a great time. I kept thinking about how much fun Hope would have at her Birthday parties and I am hoping she will be able to experience them with the whole family.

Destiny has been with us since Friday and she has been a great help with the boys. She plays with them and even watches them when I need a few minutes to get some work done. I really want to do something nice for her this week, but I'm not sure what she would want to do. I know her summer is not all that exciting, but I would at least like to do a few things with her this week. We are not sure how much we will have her this summer as her mom is off most of the summer. We still haven't told her about the problems with Hope and I really think her dad and I need to sit down and talk to her about everything. She is old enough to understand and I don't want her to be surprised after Hope is born.

I talked to the geneticist this week and the results from the micro-array came back. Hope has a deletion on her 15q13.3 chromosome. I did a lot of research and it does affect the neurological system, but they are not sure what effect it will have on each person. Here is the only information I have really found on the 15q13.3 deletion. It just seems like yet another piece of bad information that I really didn't want to know. I guess there are times when I feel like if I didn't know all this information, everything would be better. But then I think at least having this information gives me time to prepare for what might happen. I guess I am just scared of all the unknowns and really wish that I had some concrete information.

I am not spending as much time worrying about everything or really thinking about everything that might happen with Hope. It has been really busy with Paul's Birthday and with Destiny being here for the week. I don't have any appointments until the 24th, so that has helped as well. All in all...everything is going well with the pregnancy that I can tell and I will wait and see what happens on the 24th. I also need to find a chance to talk to my boss sometime soon about what is going on...I really don't want him to be surprised to find out that I am pregnant.

We are off today to go over Marilyn's to go swimming. I know the kids will have a great time today and I am looking forward to spending time with them and with Marilyn.