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 old...now 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.
Tuesday, June 9, 2009
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,
Unconditionally...
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~
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,
Unconditionally...
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
Feelings
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.
.....you 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.
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.
.....you 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.
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