I looked at the calendar and realized that February is almost here. And one year ago we were discussing with Jilly's cardiogist the possibility of needing her Fontan surgery. One year ago I was experiencing some severe anxiety. One year ago I was scared. One year ago I was wondering if we would get to this point.
My friend is pregnant and she keeps talking about being afraid of the pain. She's asked me what the pain is like. I honestly can't remember the pain. I remember that I felt pain. I remember that it was painful. But I can't describe that pain. They say the reason women can't remember the pain of childbirth is because if they could they would never have another baby. But I do remember the pain of giving my daughter over to surgeons. The pain of learning of her defects. The pain of adjusting my life to this new experience. The pain I re-experience every time I think of what my life may be like if she is not in it.
I remember vividly the anxiety I was feeling last year when I was told her surgery date. I guess those kind of feelings of pain never dim with time. I read on other blogs the anxiety that some moms are experiencing due to where they are right now or where they are headed on their journey. And when I read about the anxiety, the fear, the questions it's as if I am right back at that point in time that I was feeling those feelings at the most intense level. The anxiety, the fear, the questions...they are always there. They never leave me. Just sometimes they are more quiet than others. I try to manage the anxiety, I was already an anxious person before Jilly. But it's hard. It's hard to not look at her and be overwhelmed with the what if's. It's hard to not know what happens next. But it is even harder to just let go of all the worry and anxiety and just trust that life will move on.
I met with a student of mine yesterday who had heart surgery as a child. This student made mention of their heart hurting when they walk. As a heart mom I wanted to take this student to the nearest cardiologist and have them checked out. As a heart mom my anxiety rushed in. For this student but also for Jilly. This student is old enought to tell someone that their heart hurts. It made me wonder what Jilly experiences. She likes to run around the house till she gets winded. How does she feel? When will she be able to tell me if her heart hurts?
So you see, the anxiety, the worry, the questions. They never dull with time. It's just new anxiety, new worry, new questions that come. One year. One year has passed since the initial talk of her Fontan surgery. One year of watching my Jilly have surgery, recover and blossom with a newfound energy and zest for life. Amazing that one year ago I was unsure of how or if we would get to this point. But we are here. And life is good.
Wednesday, January 30, 2008
Saturday, January 26, 2008
Wise beyond her years
Conversation between Jilly and pre-school teacher while watching a movie goes something like this (paraphrasing to the best of my recollection of said conversation repeated back to me):
"Why that daddy cry?"
"He's sad"
"Why he sad, daddy's are not sad, daddy's don't cry"
"Sometimes daddy's get sad, sometimes their hearts hurt and that makes them sad and cry"
"My daddy not sad, his heart not hurt anymore because my heart get fixed so my daddy and my mommy not have their heart hurt anymore"
And that's enough to make this mommy's heart hurt.
"Why that daddy cry?"
"He's sad"
"Why he sad, daddy's are not sad, daddy's don't cry"
"Sometimes daddy's get sad, sometimes their hearts hurt and that makes them sad and cry"
"My daddy not sad, his heart not hurt anymore because my heart get fixed so my daddy and my mommy not have their heart hurt anymore"
And that's enough to make this mommy's heart hurt.
Thursday, January 24, 2008
A Whole Lot of Nothing
Haven't posted in a whole week! But not much to write about. Jilly had an ear infection but seems to have recovered from it fine. We went to our cabin this weekend and enjoyed the snow. Poor Russ was cooped up with 5 girls. I think he might have left feeling less relaxed than before we went. Things are quiet at the moment. But that should change soon. Haley will be getting her lamb in the next couple of weeks. I am thinking about getting Jilly into some sort of class, maybe gymnastics or dance. Her coordination is improving and she is running a bit better. Maybe dance will help with her gross motor skills. She would enjoy it I'm sure.
I have an observation...I don't always like the way people act. I guess I operate on the old rule, treat others as you want to be treated. If I need to get my needs met and I am not, I am assertive. But some people think they need to be aggressive and mean. I have had a few difficult situations this week. Dealing with difficult people - I try not to take it personally but sometimes I just want say what is really on my mind. Which runs along the lines of we are all human beings. We don't need to tear each other down to make ourselves feel better. This situation with Jilly has opened me up to so much more - appreciating life, appreciating those in it, making sure to show appreciation to those around me, simple things like saying thank you, please, holding doors open for others. I guess I had those traits in my personality before, I am just more aware of the simple things now. So when people are mean to me or rude or attack me personally I find it hard to sometimes to just let it go. The upside.......one little munchkin waiting for me at home who continually teaches me more and more everyday. Oh yeah, and that husband and those fiesty teenagers too.
I have an observation...I don't always like the way people act. I guess I operate on the old rule, treat others as you want to be treated. If I need to get my needs met and I am not, I am assertive. But some people think they need to be aggressive and mean. I have had a few difficult situations this week. Dealing with difficult people - I try not to take it personally but sometimes I just want say what is really on my mind. Which runs along the lines of we are all human beings. We don't need to tear each other down to make ourselves feel better. This situation with Jilly has opened me up to so much more - appreciating life, appreciating those in it, making sure to show appreciation to those around me, simple things like saying thank you, please, holding doors open for others. I guess I had those traits in my personality before, I am just more aware of the simple things now. So when people are mean to me or rude or attack me personally I find it hard to sometimes to just let it go. The upside.......one little munchkin waiting for me at home who continually teaches me more and more everyday. Oh yeah, and that husband and those fiesty teenagers too.
Thursday, January 17, 2008
A Year in Review
So I finally figured it out - enjoy my little Jilly Bean. And listen to the music - I love this song.
Tuesday, January 15, 2008
Reality
Lately I have begun venturing out of my little world and seeking out stories of other heart families. It is actually very easy now with this blog world. Somedays I link to a blog from one blog only to link to another blog and several links later I forget how I even stumbled upon a certain blog.
I resisted doing this for some time. Mainly because everytime I did I always stumbled upon the story of a child, usually older than Jilly, who had died. I would be all excited to find another heart family to then come crashing down. But I started searching again. And I have found inspiring stories, touching stories, happy stories. I even allowed myself to leave a few comments here and there. You know that feeds in to my reluctance to reach out for fear of rejection, etc. etc. etc. But I have done it anyway to offer support, to make connections with other heart families.
Recently I linked from a link from a link from a link to a few heart families who are going through some very trying and heart wrenching times. My initial reaction is to look the other way, to leave as fast as I came. I feel guilty. Here I am a mom of a daughter with some pretty severe heart defects who is doing amazingly well. And I feel almost like a voyer. But it helps me to stay grounded in our reality.
Sometimes I feel like I have begun to relax too much into this new normal. Jilly is doing so well I have begun to let my guard down and almost feel as if I take her newfound health for granted. Things can change so fast with these kids. I don't ever want to take Jilly and the medical miracles that have allowed her to be with us for granted.
When another heart child looses their fight it makes me profoundly sad. Sad for that family. Sad for all the children out there fighting their battle against CHD. Sad for my Jilly. When I read Kate's blog last night I cried. I don't even know this family personally. But I know them through membership into this club. I know them as another heart mom who worries daily about my own heart child. So I scooped up Jilly, hugged her tight, told her how much I love her and read as many books as she wanted to her before we both fell asleep cuddled up tight together.
I will continue to venture out and follow these heart families, silently cheering them on through the good and unforunately, when needed, silently holding them up through the bad. I read the following on Valerie's support blog and I think it is very fitting at this time:
What It Means To Be The Parent Of A Child With A Heart Defect by Anna Jaworski© 1996
What does it mean to be the parent of a child with a heart defect? It means going into your baby’s room a dozen times a night just to check to see if she’s still breathing. It means standing over the crib to watch the chest rise and fall and when you don’t see it move, you begin to panic and put your head down close to your baby’s face to try and hear her breathe. It means that when you don’t see the chest move and you don’t hear her breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs and you’re thankful, so thankful that she’s still with you.
What does it mean to be the parent of a child with a heart defect? It means feeling a huge sense of relief when she hears you and opens her eyes and smiles. It means saying a prayer of thanks for another day.
What does it mean to be the parent of a child with a heart defect? It means measuring out her medication and panicking if she spits some of it out. How much did she spit out? One cc? Two or three? Then wondering if you should guesstimate how much more she should have and if you’d overmedicate her.
What does it mean to be the parent of a child with a heart defect? It means checking her nail beds against your own to determine how blue she is today. It means asking your husband, your mother, or your sister, "Do her lips look blue to you?" It means snuggling her in an extra blanket for fear she won’t be warm enough.
What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm her heart. It means taking your baby to the doctor and worrying that she will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.
What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
What does it mean to be the parent of a child with a heart defect? It means praying for a miracle to save your baby’s life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn’t.
What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.
What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child’s accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.
So What Does All Of This Mean? It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.
I resisted doing this for some time. Mainly because everytime I did I always stumbled upon the story of a child, usually older than Jilly, who had died. I would be all excited to find another heart family to then come crashing down. But I started searching again. And I have found inspiring stories, touching stories, happy stories. I even allowed myself to leave a few comments here and there. You know that feeds in to my reluctance to reach out for fear of rejection, etc. etc. etc. But I have done it anyway to offer support, to make connections with other heart families.
Recently I linked from a link from a link from a link to a few heart families who are going through some very trying and heart wrenching times. My initial reaction is to look the other way, to leave as fast as I came. I feel guilty. Here I am a mom of a daughter with some pretty severe heart defects who is doing amazingly well. And I feel almost like a voyer. But it helps me to stay grounded in our reality.
Sometimes I feel like I have begun to relax too much into this new normal. Jilly is doing so well I have begun to let my guard down and almost feel as if I take her newfound health for granted. Things can change so fast with these kids. I don't ever want to take Jilly and the medical miracles that have allowed her to be with us for granted.
When another heart child looses their fight it makes me profoundly sad. Sad for that family. Sad for all the children out there fighting their battle against CHD. Sad for my Jilly. When I read Kate's blog last night I cried. I don't even know this family personally. But I know them through membership into this club. I know them as another heart mom who worries daily about my own heart child. So I scooped up Jilly, hugged her tight, told her how much I love her and read as many books as she wanted to her before we both fell asleep cuddled up tight together.
I will continue to venture out and follow these heart families, silently cheering them on through the good and unforunately, when needed, silently holding them up through the bad. I read the following on Valerie's support blog and I think it is very fitting at this time:
What It Means To Be The Parent Of A Child With A Heart Defect by Anna Jaworski© 1996
What does it mean to be the parent of a child with a heart defect? It means going into your baby’s room a dozen times a night just to check to see if she’s still breathing. It means standing over the crib to watch the chest rise and fall and when you don’t see it move, you begin to panic and put your head down close to your baby’s face to try and hear her breathe. It means that when you don’t see the chest move and you don’t hear her breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs and you’re thankful, so thankful that she’s still with you.
What does it mean to be the parent of a child with a heart defect? It means feeling a huge sense of relief when she hears you and opens her eyes and smiles. It means saying a prayer of thanks for another day.
What does it mean to be the parent of a child with a heart defect? It means measuring out her medication and panicking if she spits some of it out. How much did she spit out? One cc? Two or three? Then wondering if you should guesstimate how much more she should have and if you’d overmedicate her.
What does it mean to be the parent of a child with a heart defect? It means checking her nail beds against your own to determine how blue she is today. It means asking your husband, your mother, or your sister, "Do her lips look blue to you?" It means snuggling her in an extra blanket for fear she won’t be warm enough.
What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm her heart. It means taking your baby to the doctor and worrying that she will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.
What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
What does it mean to be the parent of a child with a heart defect? It means praying for a miracle to save your baby’s life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn’t.
What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.
What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child’s accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.
So What Does All Of This Mean? It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.
Monday, January 14, 2008
Cool
The advancements in medicine are just amazing:
http://www.cnn.com/2008/HEALTH/01/14/rat.heart.ap/index.html
Who knows, with research like this the future of kids like Jilly might be a little brighter.
I finally added some links to the heart kids that I have been following.
There are a few that could use some support and positive thoughts/prayers/crossed fingers thrown their way.
Isaac
Madeline
Kate
Justin
http://www.cnn.com/2008/HEALTH/01/14/rat.heart.ap/index.html
Who knows, with research like this the future of kids like Jilly might be a little brighter.
I finally added some links to the heart kids that I have been following.
There are a few that could use some support and positive thoughts/prayers/crossed fingers thrown their way.
Isaac
Madeline
Kate
Justin
Friday, January 11, 2008
Terribly Unexciting
Nothing new going on here. We are all back in school, having a hard time going to bed at a decent hour and not happy when it is time to get up.
Jilly is coming down with a cold, has a nice barking cough. Hopefully it does not develop into anything more serious.
We went to our cabin the weekend before New Years and Jillian got to experience snow for the first time. She was not to thrilled with it and after about 5 minutes she was ready to go back inside, sit by the fire and work on her puzzles. I haven't had Russ download the pictures but as soon as he does I'll post a picture of her hanging in the snow. The older girls had fun making snowmen and irritating each other with snowball attacks. It was a very nice, relaxing time away from home. Jillian's oxygen level does go down when we;re there - the cabin is at about 4000 feet. It goes from 97 to 90. I checked with her PC to make sure that is ok and she felt that as long as it does not go down past 80 she would be ok. We have talked about resuming our family vacations to Yosemite (where we stay in Curry Village is also about 4000 feet), something we did every year with the girls until Jilly was born. She gave us the green light for that as well.
I have been somewhat sad this week. A mom of a classmate of Mikayla's, who she has known since kindergarden, died unexpectedly this past weekend. She was only 38. I did not know her very well, had only spoken to her a handful of times, but she was a constant at school functions and very involved in her daughter's life. Things like that just seem so unfair to me and make me question life, cause and effect, higher powers, etc. etc. I have been reading a lot of other blogs of heart kids and have found some very interesting blog entries about these same question and great comments from readers - one in particular is Erika's.
I have also stumbled upon many great heart family blogs in other areas of our nation - reading them just gives me a sense of connection to a whole other group of people, people I have never met and probably never will, but the writings of these parents sometimes echo the very thoughts going on in my head. And the stories of some of the heart kiddos is heartbreaking, inspiring, heart melting.
And of course there are the great heart families locally who I have started to connect with and it makes me feel really good. That I am finally able to open up and reach out to connect with people, admit that sometimes this is a scary place all on my own and even though I would have never asked for membership into this group by way of having a baby with a CHD it's a great group to be a part of with many wonderful and supportive people willing to lift each other up when needed, cheer each other, lend a shoulder to cry on and an ear to listen. Thanks.
I am going to be posting links to all of these wonderful heart families blogs soon because they have such great things to say and such beautiful families, it would be a shame to keep them all to myself. And a few of them could use that same support and encouragement that I have found in other heart families.
Jilly is coming down with a cold, has a nice barking cough. Hopefully it does not develop into anything more serious.
We went to our cabin the weekend before New Years and Jillian got to experience snow for the first time. She was not to thrilled with it and after about 5 minutes she was ready to go back inside, sit by the fire and work on her puzzles. I haven't had Russ download the pictures but as soon as he does I'll post a picture of her hanging in the snow. The older girls had fun making snowmen and irritating each other with snowball attacks. It was a very nice, relaxing time away from home. Jillian's oxygen level does go down when we;re there - the cabin is at about 4000 feet. It goes from 97 to 90. I checked with her PC to make sure that is ok and she felt that as long as it does not go down past 80 she would be ok. We have talked about resuming our family vacations to Yosemite (where we stay in Curry Village is also about 4000 feet), something we did every year with the girls until Jilly was born. She gave us the green light for that as well.
I have been somewhat sad this week. A mom of a classmate of Mikayla's, who she has known since kindergarden, died unexpectedly this past weekend. She was only 38. I did not know her very well, had only spoken to her a handful of times, but she was a constant at school functions and very involved in her daughter's life. Things like that just seem so unfair to me and make me question life, cause and effect, higher powers, etc. etc. I have been reading a lot of other blogs of heart kids and have found some very interesting blog entries about these same question and great comments from readers - one in particular is Erika's.
I have also stumbled upon many great heart family blogs in other areas of our nation - reading them just gives me a sense of connection to a whole other group of people, people I have never met and probably never will, but the writings of these parents sometimes echo the very thoughts going on in my head. And the stories of some of the heart kiddos is heartbreaking, inspiring, heart melting.
And of course there are the great heart families locally who I have started to connect with and it makes me feel really good. That I am finally able to open up and reach out to connect with people, admit that sometimes this is a scary place all on my own and even though I would have never asked for membership into this group by way of having a baby with a CHD it's a great group to be a part of with many wonderful and supportive people willing to lift each other up when needed, cheer each other, lend a shoulder to cry on and an ear to listen. Thanks.
I am going to be posting links to all of these wonderful heart families blogs soon because they have such great things to say and such beautiful families, it would be a shame to keep them all to myself. And a few of them could use that same support and encouragement that I have found in other heart families.
Wednesday, January 2, 2008
Cardiology Appointment
Jillian saw Dr. H today for her 3 month cardiology appointment. She had an echo and an EKG. Russ and I just knew something was wrong during the echo because the technician was having a hard time getting a view of the top of her heart. Then Dr. H came in and kept viewing it over and over again. Then stayed behind after she was done as we left and went over to the other exam room.
The news? Everything is great! Her oxygen level was 97. And Dr. H said the echo looked great. Her Fontan looks great. Everything about Jillian was great! Of course I couldn't agree more. So we do not have to see her for another 6 months, at which time she assures us she will be back from maternity leave. Her parting assessment was that she is so optimistic about Jillian's future, partly because she has both ventricles pumping as one, which creates a stronger pumping action for her heart and the hope that her heart doesn't wear out as fast. The other part being that Jillian is just........
The news? Everything is great! Her oxygen level was 97. And Dr. H said the echo looked great. Her Fontan looks great. Everything about Jillian was great! Of course I couldn't agree more. So we do not have to see her for another 6 months, at which time she assures us she will be back from maternity leave. Her parting assessment was that she is so optimistic about Jillian's future, partly because she has both ventricles pumping as one, which creates a stronger pumping action for her heart and the hope that her heart doesn't wear out as fast. The other part being that Jillian is just........
ELECTRIFYING
Our hope is that this new year brings her peace, good health, happiness and lots of chocolate...she needs to gain some weight....
HAPPY NEW YEAR!!
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