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Monday, August 8, 2011
Surgery Has Started
David went to the operating room about 30 minutes ago. I feel very peaceful. I slept for about 5 hours last night. More to come throughout the day.
Wednesday, August 3, 2011
Preparing for Open Heart Surgery Compares to Preparing for Childbirth
It just hit me recently while deciding what to pack for the hospital: clothes for me, clothes for the baby, camera, phone, charger, phone lists, change for the vending machine snacks for waiting, etc, that this experience is very similar to preparing for the birth of your child. Sounds weird I know.
Seriously, at work I am finishing up all my tasks and assigning my projects. I have delegated my calendar to someone else. I will be setting my out of office for 8 weeks. I had a little send off party. I am going to lunch "for the last time" with some of my friends.
I research what to expect and read blogs to hear other peoples accounts of surgery. How long did it take, were there complications, did you have a long hospital stay, how were the nurses, did you tour the hospital first. Knowing our experience won't be exactly the same as other peoples but wanting to get a glimpse of what to expect.
We have to make arrangements for our other son. Thank god for daycare. I am sure Steve and Zac will eat out a lot. And I have a feeling someone will talk daddy into sleeping in our bed when I am at the hospital.
You discuss who will be in the waiting room, who will come visit in the hospital, who is on the call list, the email list, or we will just post on facebook.
It becomes harder to sleep at night. Your mind wanders to the what ifs both good and bad. And deep down you know all the preparing in the world won't really prepare you for the experience. But you have waited and prepared months for this moment, you knew it was coming you just didn't know when.
So the count down is now only 5 days until surgery. Friday is our pre-op appointment, 2 hours of needles and machines. Wish me luck and sanity as I make my way to Monday.
Seriously, at work I am finishing up all my tasks and assigning my projects. I have delegated my calendar to someone else. I will be setting my out of office for 8 weeks. I had a little send off party. I am going to lunch "for the last time" with some of my friends.
I research what to expect and read blogs to hear other peoples accounts of surgery. How long did it take, were there complications, did you have a long hospital stay, how were the nurses, did you tour the hospital first. Knowing our experience won't be exactly the same as other peoples but wanting to get a glimpse of what to expect.
We have to make arrangements for our other son. Thank god for daycare. I am sure Steve and Zac will eat out a lot. And I have a feeling someone will talk daddy into sleeping in our bed when I am at the hospital.
You discuss who will be in the waiting room, who will come visit in the hospital, who is on the call list, the email list, or we will just post on facebook.
It becomes harder to sleep at night. Your mind wanders to the what ifs both good and bad. And deep down you know all the preparing in the world won't really prepare you for the experience. But you have waited and prepared months for this moment, you knew it was coming you just didn't know when.
So the count down is now only 5 days until surgery. Friday is our pre-op appointment, 2 hours of needles and machines. Wish me luck and sanity as I make my way to Monday.
Sunday, July 31, 2011
Things That Make Me Smile
1) My five year old screaming for me to come to his room..when I get there he just wants to give me a kiss
2) Being married for 11 years and thinking back to our wedding in Hawaii
3) David's smile
4) David's laugh
5) My five year old wanting to stay up until 11 pm to watch a special on tigers
6) Seeing David attacking Zac and kissing him and pulling his hair.
It is easy to get caught up in the day to day lifes challenges and worries. Living with a five year old and a one year old really brings lots of laughter and smiles throughout the day. I wouldn't change a thing about the time we spend together. I love my family.
2) Being married for 11 years and thinking back to our wedding in Hawaii
3) David's smile
4) David's laugh
5) My five year old wanting to stay up until 11 pm to watch a special on tigers
6) Seeing David attacking Zac and kissing him and pulling his hair.
It is easy to get caught up in the day to day lifes challenges and worries. Living with a five year old and a one year old really brings lots of laughter and smiles throughout the day. I wouldn't change a thing about the time we spend together. I love my family.
Friday, July 22, 2011
Save the Date
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In a perfect world, on August 8th at 8 a.m., I will be turning my sweet baby over to a surgeon to do the unthinkable. Just like everything else in my life this past year I know it sounds strange to those outside looking in, but it is my reality. David is having open heart surgery. Where they crack open his chest, hook him up to the heart-lung machine, stop his heart and lungs, fix the holes, and then start up his heart and lungs and hope for the best. So the picture above is how he looks pre-surgery, with minimal scars.
You may be wondering what is different now then it was a couple of months ago. Well the first thing is his last echocardiagram showed the pressure in his lungs is decreasing, which leads to the flow through the holes in his heart increasing. Once again, strange to say, but this is a good thing. The bad lungs with the high pressure has been delaying this surgery. And the surgery must be done some day and it is better to do before the lung pressure increases or becomes permanent. The other big part of this story is made possible through technology. David had a virtual second opinion from the guru pulm hypertension doctor at a leading Children's Hospital in Philadelphia. They package up the cd's and dvd's of all of David's imaging from the last year and this doctor was able to assess David's progress and give an opinion. Surgery is not as risky as originally feared due to the decreasing lung pressure and leaving the holes longer than 6 months could pose long term problems so lets get er done.
You may be wondering what is different now then it was a couple of months ago. Well the first thing is his last echocardiagram showed the pressure in his lungs is decreasing, which leads to the flow through the holes in his heart increasing. Once again, strange to say, but this is a good thing. The bad lungs with the high pressure has been delaying this surgery. And the surgery must be done some day and it is better to do before the lung pressure increases or becomes permanent. The other big part of this story is made possible through technology. David had a virtual second opinion from the guru pulm hypertension doctor at a leading Children's Hospital in Philadelphia. They package up the cd's and dvd's of all of David's imaging from the last year and this doctor was able to assess David's progress and give an opinion. Surgery is not as risky as originally feared due to the decreasing lung pressure and leaving the holes longer than 6 months could pose long term problems so lets get er done.
So you may be wondering how does David's mom feel about all of this. On most days happy, excited, positive, confident. And so far on just two occasions scared out of my mind on the possibility of him not coming home again. It happened last week at the gym while listening to my nano I heard this song and while the song was about a man/woman relationship it hit me as a mommy/David thing and I teared up on the teadmill (don't worry I didn't go flying off of the back or anything). So do you want to know what the song is.....Shania Twain Forever and For Always (listen to it thinking what I just said, I bet you will cry too).And there ain't no way--
I'm lettin' you go now
And there ain't no way--
and there ain't no how
I'll never see that day....
[Chorus:]
'Cause I'm keeping you
forever and for always
We will be together all of our days
Wanna wake up every
morning to your sweet face--always
I'm lettin' you go now
And there ain't no way--
and there ain't no how
I'll never see that day....
[Chorus:]
'Cause I'm keeping you
forever and for always
We will be together all of our days
Wanna wake up every
morning to your sweet face--always
So you probably wonder why do I need to share all of this with you. I need to say it out loud and release it so I can let it go and move on. I need to do it for my inner peace. I love David so much and every day I am so happy to have him in my life. I want to yell it from the rooftops. I want everyone to know the joy he brings me and the love that I feel for him. He is so much fun working on trying to crawl and pull up to stand. Hell, he even said momma the other day. How can you not love this face.....
Thursday, June 30, 2011
Vacation Pictures
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| Our Family |
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| Brotherly Love |
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| David's personality shining through |
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| Nothing like the beach in San Diego |
Wednesday, June 29, 2011
You Will Love Your Child and They Will Bring You Great Joy
I am part of a strange society. One I did not know before David was pre-natally diagnosed with down syndrome. I have on-line friends, people I have never met in real life. And they mean a lot to me. We know the same lingo, we share similar worries, we have a team of medical professionals, and we pray a lot for little ones being born or having surgery or being sick.
Recently another little boy was born. He fought so hard. His story brought back a rush of memories of when David was born. Pulmonary Hypertension, blood transfusion, kidney's shutting down, fluid filling up the body, ventilator, oscilating ventilator, medications, and more medications. But this dear sweet boy did not come home. He did not get to see his house or his room. His parents did not get to get up with him in the night or take him to doctors appointments or therapy appointments or worry about his future or how he would do in school or if he would live on his own someday. And that is all they wanted. They just wanted to love their son and be part of his life and the diagnosis didn't matter. And this is always the case.
There have been some amazing babies that have passed away and not all of my on-line friends have children with down syndrome. Some have children with congenital heart defects and some have children with feeding tubes and some have children with cerebal palsy and some have children with brain injury and some have undiagnosed medical conditions. But we all have something in common. We love our babies and a lot of the times we see past the diagnosis. I am not going to lie and say the diagnosis is not part of our lives. There are doctors appointments and therapies and stares and comments, but we really just see our children.
Every mother that has lost her child will tell you they just want their baby at home. Two more mommies shared this week that they miss their babies so much (sweet William has been in heaven for two months and beautiful Kenzie has been in heaven for a month) and wish they had them at home to care for and love them, the diagnosis and the medical worries just don't matter.
I know some people wonder didn't I have a pre-natal diagnosis, couldn't I have made a different decision. Yes, I could have but we knew two things we will love this boy and he will bring us great joy. And we were right and we feel blessed every day to have David be part of our lives, part of our family, and part of the community.
In loving memory of Jordan, William, Kenzie, Max, Gabby, Brielle. Your mommies love you and miss you every day. Your stories touched the heart of so many.
Recently another little boy was born. He fought so hard. His story brought back a rush of memories of when David was born. Pulmonary Hypertension, blood transfusion, kidney's shutting down, fluid filling up the body, ventilator, oscilating ventilator, medications, and more medications. But this dear sweet boy did not come home. He did not get to see his house or his room. His parents did not get to get up with him in the night or take him to doctors appointments or therapy appointments or worry about his future or how he would do in school or if he would live on his own someday. And that is all they wanted. They just wanted to love their son and be part of his life and the diagnosis didn't matter. And this is always the case.
There have been some amazing babies that have passed away and not all of my on-line friends have children with down syndrome. Some have children with congenital heart defects and some have children with feeding tubes and some have children with cerebal palsy and some have children with brain injury and some have undiagnosed medical conditions. But we all have something in common. We love our babies and a lot of the times we see past the diagnosis. I am not going to lie and say the diagnosis is not part of our lives. There are doctors appointments and therapies and stares and comments, but we really just see our children.
Every mother that has lost her child will tell you they just want their baby at home. Two more mommies shared this week that they miss their babies so much (sweet William has been in heaven for two months and beautiful Kenzie has been in heaven for a month) and wish they had them at home to care for and love them, the diagnosis and the medical worries just don't matter.
I know some people wonder didn't I have a pre-natal diagnosis, couldn't I have made a different decision. Yes, I could have but we knew two things we will love this boy and he will bring us great joy. And we were right and we feel blessed every day to have David be part of our lives, part of our family, and part of the community.
In loving memory of Jordan, William, Kenzie, Max, Gabby, Brielle. Your mommies love you and miss you every day. Your stories touched the heart of so many.
Tuesday, June 7, 2011
Recent Slice of Life
Haven't had much that I wanted to post lately. I was feeling overdue for some recent pictures of my little man, so here you go.
Practicing bearing weight on my legs
I love to make raspberries
I still love playing with rings
This may end up being my motivator to crawl
The zoo wears me out
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