Happy Birthday to Sam!

A year ago we got to meet our cute Sam boy.

What a sweet little body for a beautiful spirit. We love you Sam!

An updated Sam blog...

I have often wanted to write about my feelings concerning Sam, but I hesitate to do it here. I know there isn't really a good reason, but I do. So I decided to update my "I am Sam" blog. You can link to it from the side of this blog. That way, if you want to hear about all things Sam, you can go there.

Our baby Sam bear

The Angel Watch team has done so many neat things for our family. They helped us plan for our hospital stay, they arranged for pictures, they made molds of Sam's hands and feet, and helped us in all kinds of different ways. It's amazing to me that so many people would volunteer their time to be so kind and helpful to people they don't even know at the start. They have become dear friends to me.
Anyway, tonight they brought by a bear that was made from the same fabric as Sam's blankets. It's really cute and something I will treasure forever. Some nice woman out there made this bear for me. She doesn't know me. She probably never will. She just did it because she wanted to use her talents to bless the life of someone else.
I want to be more like that.
I told you this whole experience with Sam has made me want to be a better person. Now I need to act on it too.

So, since this post is about Sam, I'll include one of my favorite pictures. This is a favorite because when I look at it, I can almost hear his little grunts and feel his sweet breath on my face.


Can't you almost hear that sigh? Oh I am a lucky Momma...

Birth Announcement

Long awaited blanket pictures

I finished Sam's big squares blankie a long time ago...then I forgot to post pictures.

I had a harder time getting the smaller blanket done because I couldn't finish it on my own. I have never made a blanket with a binding around the edge, so it just sat there in a half way finished state for a long time. I finally got it done tonight. My friend used her fancy embroidery machine to write on the blanket.

Look at that perfect corner! It's always fun to learn something new and this is my new thing. I can bind a blanket!

I think these are the cutest blankets ever, and if you don't agree just keep your mouth shut...

Plans...

So, in case you wondered why the sudden shift to a private blog, here is the reason. There are lots of people out there in the "heart" community who read blogs about other kids out there born with congenital heart defects. They stop by and check in on me every once in a while and offer support. In the beginning it was great. Now I feel the need to close them off from our family blog and make this the spot where I can write what I feel without worrying about who is reading.

So that's it. I am totally fine with all kinds of people checking in on us, but in the coming months I only want support and love. If you hear of people who want an invite, just e-mail me and I will add them to the list.



Now, for the plans. We have some plans for Sam. I have a c-section date scheduled for 9/9/09. I am really excited to meet him and feel of his special spirit. I am delivering in Logan where I am close to home, I love my Doctor, I like the new wing of the hospital, and I know Sam will be safe.

Mike and I have prayed every day that we would know the will of the Lord concerning Sam. We feel like our prayers have been answered. Sam needs a body, then he can return home. It is heartbreaking to know that we won't have our little boy with us on this earth. We do have faith that we will for eternity, but I still mourn for the long mortal years ahead for us without him.

Mike wrote some beautiful words to me in a letter I got while I was at girl's camp, "let's love him a lifetime for the few days we have him."
This boy is going to know only love. He is going to be spoiled like no other newborn has been spoiled. At our last visit with the Cardiologist at Primary's, he spent extra time looking at the blood flow in Sam's heart. He gave us what I consider great news. He said we will most likely have more time with Sam than I had hoped. He said we would probably be able to bring him home from the hospital. I have clung to that. That has been my prayer is that I would have enough time with him. Now, my new vision of hope is to come home and lay Sam on a blanket on the grass and let him look out at the blue sky and feel the sun on his face.
So...that's the plan. I'll try to be really good about posting things here so you know what is going on. I think I just felt I was at a road block before I went private. I'll be better now.

Another FYI...I keep getting clean bills of health from Dr. Strebel. This is the longest I have ever been pregnant without being on bed rest. It is also the longest I have ever been pregnant. So, I have been taking advantage of it. Today I cleaned the bathrooms (yeah, wish I could pull the bed rest card on that little chore) and right now I am baking loaf after loaf of zucchini bread with the huge zucchinis the neighbor keeps bringing me. I feel like there is an overwhelming list of things to do before the 9th, so this is a total blessing that I have been able to resume life as usual.
So, life is good. The Lord continues to bless us and bring us comfort. I'm very grateful for that.

New Blog

I have started a new blog. I haven't written much about Sam on this blog and I know there are some of you who want to know more. I have been hesitant to spill my every emotion on this blog, so I started one just for Sam. There's nothing too exciting on that blog, just the old entries about him from this one, but I'll try to update more frequently on it.
Anyway, the site is http://i-am-sam-schwab.blogspot.com/
If any of you are heart parents who check my blog, that's the one to see rather than have to sort through all the stuff I write about our other kids on this blog.
So...there it is!

Another peek...

Yesterday Mike and I dropped the kids off at my friend Natalie's house and rushed to our appointment in Ogden. I couldn't sit still the whole way there because I was watching the minutes tick by on the clock and realizing that there was no way we would make it to the appointment on time. We pulled into the parking lot a few minutes late and I jumped out of the truck and ran into the hospital. I had to stop the elevator at every floor because I couldn't remember where the office was. All the while I am panicking because they say they will reschedule your appointment if you are more than 15 minutes late. I finally found the right floor (4th, so yes, I made 3 other stops) and hurried to the desk. They took their time coming to me and said I could sit and wait.

I sat...and waited. The adrenaline wore off and I was able to relax a little. Mike rushed in (after searching the hospital floors as well) and we laughed at how close we had cut it to the 15 minute limit. Then we sat...and waited.

The waiting room was full... 5 or 6 other expectant mothers (and their rowdy kids). We talked about how we should have brought our kids too. We hate worrying that they are fighting at someone elses house, or worrying that we are putting someone else out while we sit and wait at Dr. appointments. Luckily the kids love it at Natalie's and she assures me that she loves it too.

Anyway, we watched other parents come out of the room in tears and remembered the pain we felt last month when we left the office. We watched others come out having accepted their new fate as parents of babies that won't be "perfect". (That's where we are this month). Still we waited...

Over an hour after arriving a little late, we were finally taken back for an ultrasound. Sam looks great. As I have said before, it will never cease to amaze me as we peek into his little world. As usual he was on the move. The tech took the first picture to figure out his position. She hadn't even typed in the words before he flipped to another position and she had to start over. She measured all sorts of things and took a good look at everything. Then we visited with the doctor. We didn't feel at all guilty taking time to ask all our questions because we had just waited in the waiting room for over an hour. He was great and answered all the questions he knew answers to. He asked if we wanted to do an amniocentesis to determine if there were any chromosomal defects in Sam. He explained that in 2 to 3 percent of kids with a severe heart defect, there is a chromosome disorder behind it. Mike jumped on that. He wants all the information he can get about Sam so we can be prepared for whatever comes. I thought of the big needle and all the risks associated with it and told Mike we'd have to talk about it. Have any of you had an amnio?

Anyway, we discussed all kinds of things and at the end we asked how often we really needed to come down to Ogden for the visits and he said "oh, I guess you could just meet with Dr. Andres when he comes to Logan every other week." Yeah, that would have been good to know weeks ago. It would have been nice to know that we didn't have to drive to Ogden, worry that we would be late, wait for an hour, worry that the kids were beating on Natalie's kids, worry that 5 hours was too long to leave our kids with anyone who wanted to remain sane, and worry that it was all going to have to happen again in 2 weeks. Now I know that the doctor comes to Logan and could just see me there. Hello! They knew we were from the Logan area. They knew all this when we made our first appointment. Why didn't anyone think to suggest that we might rather stay in our home turf if there was an option? Oh well, I guess that's just how it goes in this world. We are going to have to get used to waiting in doctor's offices. We are going to have to get used to figuring out all the red tape. I guess now is a great time to start. My next appointment is at Logan Regional.

So there it is.

And here's the best part of the post...

A new perspective

Our baby has a broken heart. There is no other way to describe it than to say that it totally stinks.

However, we have already seen some blessings in our lives. One of them has been the outpouring of love that we have felt. Another is the door that has been opened to us in the community of Heart parents. We have met some really neat people. Another thing is that it has made me appreciate my "healthy heart" kids so much more. I realize that it is an absolute miracle that any child is born healthy. There are so many things that come into play when a child is developing. I find myself looking at Allie and Jake with new eyes. I love everything about their little bodies. I love everything about their little faces. I love everything about their personalities (well, almost everything). I have started to notice that when I lose my patience, it really isn't that big of a deal in the grand scheme of things. My perspective has changed. I want to enjoy each moment more, because really that moment doesn't last forever.

I already love Sam, and I love his little beating half heart. I love that his spirit is strong enough to face this challenge and I know that he will bless our family. He already has. He has made me remember more each day about the miracle of life. He has made me remember to laugh more each day. He has made me look at the world with new eyes.

I went on a 4 wheeler ride up the canyon the other day. Picture me on Jake's little wheeler because that's what it was. Anyway, as I drove up, slower than everyone else, I took the time to look at all the beauty of the Earth. The birds were chirping, the trees were in bloom, the wild flowers were out on the hillside, the river was bubbling...it was amazing. I have always appreciated nature and the beauty of the world we live in, but I saw things with new eyes. I thought of Sam and wondered what he might know of this life. I thought of Allie and Jake loving every minute of their ride. I thought of all these things that were created to give us joy. I thought about how really precious life is. None of us know the exact moment that we could return to live with our Father in Heaven. We need to enjoy the time we have. I am enjoying the time I have with Sam. I don't know if I treasured my other pregnancies as much as I am this time. I don't know if I was as aware of each movement. I hope I can keep enjoying it so much when I start to get big and uncomfortable.

So, on to the point. I can thank Sam for my new perspective. Jake and Allie can thank him too, because I am trying each day to be a better Mom. If you really get down to it, Mike can thank him too because I think I'm even a better wife. So thanks Sam!

Sam

I think baby #3 will be Sam. We have never named a baby until we are at the hospital and they are asking us to fill out the paper work before we go home. This time, I wanted a name. We have talked about him so much and we keep saying "him" and "the baby"... I just wanted a name. I have always liked the name Sam, but it hasn't really been high on the list. Now it is.

We had a fetal echocardiogram at Primary Children's Hospital the other day and got more information about what we are facing.

Sam has Hypoplastic Left Heart Syndrome (HLHS). While his heart was forming, things didn't go according to plan. Now he is left with 3 chambers instead of 4. The left side of his heart can't do the job that it is supposed to do, so the burden for the entire job falls upon the right side. (Mike's description of it is to take an 8 cylinder motor, put some crappy gas in it and tell it to pull a trailer up the canyon only running on 4 cylinders and see how well it does. He also has a description for the other things we learned about, using the words "intake valves" and "compression chambers" if you want to learn it the "man" way from him).
When the doctors at McKay told us that there was a procedure to fix the problem, I wondered how they could fix something that wasn't there. After our appointment at Primary's, I now know that they can't fix something that isn't there. They can make what is there work to do the job of both sides of the heart, but they can't make it whole and complete. I think that is the most discouraging news for me, I just had a different picture in my mind. This whole process has been a lot to take in.

I have loved my little glimpses into Sam's world. He is a busy and wiggly baby. Each ultrasound has taken much longer than usual because the tech has to spend most of the time chasing him around to get a good look.

We are still facing an uncertain future. I only wrote this post as an update of what we know. Although Mike and I are filled with sadness, I do still feel the comfort and peace that can only come from the Savior and Heavenly Father.

Sam is a special baby for sure.

I have found an entire network of "Heart" families online. These wonderful people have chosen to share their experiences with people like our family who are just getting our feet wet. I have seen their heart aches and their joys and it has been good to read their words saying the exact same things I think and feel.
In the end, I found this poem on one of the blogs. It doesn't have an author cited so I can't give anyone credit, but here it is...

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that the angel is just going for a visit.
The little angel is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. He asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help you out, and you will be fine."
Then Jesus gives the angel more details about His plan. He says, "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart."
"Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Welcome to Holland

We got some pretty sad news about our cute little baby #3. The doctors have discovered that he has a pretty serious heart defect. I have spent many hours crying about it and many more hours thinking about the future. The other day I called my Aunt Kristy who has a daughter who has gone through more surgical procedures than any child should endure. I knew she had gone through open heart surgery too and I wanted to get her advise. She told me the story "Welcome To Holland" by Emily Pearl Kingsley. It really struck a chord with me so I looked it up on the internet and put it here if you would like to read it.


She writes:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place.
It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

Although our baby has a heart defect rather than the disabilities she wrote this story for, it is still not what I expected when I bought my tickets. We aren't going to get a healthy little baby to bring home like when we brought home Allie and Jake. But we get a really cute little boy that will need our love and attention just as much. He's not Italy, but Holland is amazing too.
I don't know what the future holds (besides lots of visits to the doctor and lots of sadness), but I do know that this is all part of Heavenly Father's plan. I know that He is mindful of our family. I know that this calm feeling of peace and warmth that has been placed over our home comes from Him. Most importantly, I know that no matter what happens with our little guy, I know that because our Savior died for us we can be reunited with our loved ones and live again.

I had a pretty serious mind battle over whether or not to even write about all this in the blog. I can't really put a reason to it, but I think it just feels too personal to put out there. I know that most of the people that read this are just my family and they know all this is going on anyway. But I know I would want to know more about what was going on if one of you were going through something like this, so I decided to write about it. I'll keep updates of things we find out on here, then if I don't call you personally you will still know what is going on.

Before I end this sad post, I'll write about the silver lining (when bad things happen I have to look for the good things that come about from it, otherwise what's the point.)


I have gotten two little peeks into this baby's world and he is so cute. He's a wiggly little guy and he never wanted to cooperate with the ultrasound techs. He lounged on his belly and kicked his cute little legs but never wanted to sprawl out so they could get a good look at his heart. Next week I get to see him again, and again in a month. I think that's a pretty great thing.

People keep asking what they can do...really no one can do anything except pray and have faith. I want this little baby to be a fighter and I will fight for him too. We keep praying for the continuing comfort and I know it will stay. I've been so grateful for all the love and support we have gotten. You are all amazing...thanks!

3 is my favorite number

Does that mean this will be my favorite kid?

Yep...we're going for number three. I had my first appointment today and I am already in love with that cute little heart beat.
Some of my favorite stories so far...

The kids were playing "jump on Mom" and I told them to be careful because there's a baby in my tummy.
Allie yelled, "There's no baby in yo tummy!" She looked at me suspiciously and tried to process it.
Then Jake said "Open your mouth. I want to see."

Allie also walks around saying (dramatically) "The baby in my belly makes me sick...I need to frow up" Then she walks to the sink and spits in there. Nice.

When I asked the kids if they wanted a brother or a sister, Jake said "A brother for me, named Megan, and a sister for Allie."
I asked if a boy would really want to be named Megan and he said "yes, Megan or Jenny".

They both still think that Heavenly Father gives away babies at the temple, and Jake insits that he remembers when Heavenly Father gave him to us.

They both say that they are going to be nice to their future sibling. They are so excited that I think they will be nice. I think we are all really excited for the new member of our family to come!