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.

Tuesday, June 16, 2009

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.

Tuesday, June 9, 2009


Hope is finally moving around. I am so excited that I can feel her moving around and it makes me feel good that she finally decided to be active. It was getting scary because she wasn't moving around very much at all. I remember a lot more movement with Jerry and Paul and now I get to feel it with Hope too.

Life has been going really good lately and I have been feeling a lot better about everything. I have been doing so much research and learning as much as I can about babies with HLHS and I feel better every day.

I have been getting stuff ready for Paul's 1st birthday and that has been taking up a lot of my time. It is really exciting to be celebrating his birthday around the same time as mine. I can't believe I am turning 40 tomorrow. It doesn't seem possible that I am turning 40! I remember when I thought 40 was it seems really young.

I have made an OB appointment for the 24th and another echocardiogram for that day as well. I don't know if I'm going to meet with anyone else, but I know that the Palliative Care Team wants to meet with me as well. I would really like a tour of the NICU and the maternity area pretty soon. I just want to be comfortable with where Hope will be delivered and where she will probably go shortly after she is born. I am kind of afraid to see all of this, but I know it will be better to see it now, rather than waiting until she is born.

Thursday, June 4, 2009

No New News

It has been a great couple of days. I have been focusing on feeling Hope kicking...which is not really strong, but it is there in the morning and right before I go to sleep. I have also been spending a lot of time with Jerry and Paul and I know that they love the extra time we have been able to spend together. It seems really strange that I don't spend every hour of every day thinking about Hope. I spend a lot of time and have been doing a lot of reading and searching the Internet. My next appointments are on June 24th and Kristin wants me to start thinking about a Birth Plan. I am having a really hard time thinking about that right now, but I know I need to in the next few weeks. I decided to copy a few down that I found and I will look at them after mine and Paul's birthdays.

There are so many things that I really need to get off my chest and it feels good to type them and look back at them. I feel really good with our decision to carry Hope to term and see what God has in store for us and for her. It makes me sad some days when I think that she will not make it, but I want to give her a chance. I am not very hungry lately, but I know I need to eat to give her a chance to grow as big as she can...she needs to be at least 6 pounds when she is born.

I guess the hardest part of all of this is that no one close to me really understands what I am going through right now. I find a lot of support on the Internet, but it would be great to have a friend or relative that knows how I am feeling. There are times when I feel so alone and wish that people would at least acknowledge that I am pregnant and that Hope is sick. Everyone seems to avoid it all the time. I know it is hard for everyone to think about, but I am going to be showing really soon and then they won't be able to deny it.

I plan to ask my mother in law (Rosie) and sister in law (Danielle) to make a couple outfits for Hope. I want her to have something new to wear when she is born...and if she passes away, I would like to have an outfit for her to wear. I know the request will be hard to make, but I will feel better knowing they are a part of my pregnancy and Hope's birth. I also want to ask Marilyn to make a scrapbook for me after Hope is born. There are so many memories that I want to make sure I keep secure and there is so much that I want for the future. Finally, my last request will be for my mom and will probably be the hardest of all. I am going to need her to take some time off work when Hope is born to take care of Jerry and Paul. I know it will be hard for her, but I want the boys at the hospital as soon as possible after she is born. We really don't know what will happen and I want them to meet her and spend time with her and with us as a family. As much as Jerry does not want to think about it, I really want to make sure all of the nurses and he are able to take as many pictures as possible. I know they will help me in the future if she does not make it. I plan on buying a few throw-away cameras just in case something happens to my camera. I want as many family members to come and visit and take as many pictures as they can as well. I don't know how much time we will have with Hope and I want to treasure every minute.

I am filling out this questionnaire for a Gift of Time. The information will be used for a new book about women that have decided to continue their pregnancy after they have received a bad prenatal diagnosis. I will post it here when I am done with it and I hope some of my feelings will make it to the book.

My poem for today...maybe because I am feeling sorry for myself and thinking that no one around me really understands what I am going through:

Don't tell me that you understand,
Don't tell me that you know...
Don't tell me that I will surely survive,
How I will surely grow...

Don't tell me this is just a test,
That I am truly blessed,
That I am chosen for the task,
Apart from all the rest...

Don't come at me with answers,
That can only come from me...
Don't tell me how my grief will pass,
That I will soon be free...

Don't stand in pious judgement,
Of the bonds that I must untie...
Don't tell he how to suffer,
And don't tell me how to cry...

My life is stilled with selfishness,
My pain is all I see...
Bu I need you, I need your love,

Accept me in my up's and down's,
I need someone to share...
Just hold my hand and let me cry,
And say, My Friend, I care...

~Unknown Author~

Monday, June 1, 2009


Although I cannot see you,
I still know your are there.
You are warm and snug inside me,
and require gentle care.

Although I cannot hold you,
or give you a hug goodnight.
I feel you move inside me
and know that you are alright.

Although I cannot kiss you,
or show you how I feel.
I know you share my feelings
and that our bond is real. are with me all the time
and always on my mind.
Already I have fallen in love
with my precious gift from up above.

I have been feeling good about my decision to continue the pregnancy. I am going to enjoy the rest of my pregnancy and try really hard not to focus on all the negative things that may/may not happen. I don't have any appointments scheduled and I don't plan to schedule any new ones until the end of June. I think this will give me almost a month to really enjoy being pregnant and to focus all of my attention on Hope. I don't want to think about her heart problems or the future...I just want to concentrate on feeling her inside of me and telling her how much I love her every single day. I want to focus on Jerry and Paul and give them the attention they deserve and let them know every day how much I love them and how much they mean to me. I feel like I have spent the last few months upset and worried about everything with this pregnancy and the possibilities Hope may face and not enough time on the positives of being pregnant and the joy of carrying a life.

Jerry and I have been getting along a lot better and spending more 'couple time' together. It is hard with the boys, but we are trying to make time for each other alone to just enjoy each others' company. I know we are both growing from this experience and even though it has been hard, we are going to make it through this stronger and more focused on our family.