Friday, February 29, 2008

Good times

Yesterday, Matt had to stop at the BX to buy some stamps. They just opened a Starbucks there, and were having the grand opening. There were two full boxes of entries for a 46" Sharp Aquos LCD HDTV. Matt put his name in.
About an hour later, they called to say that he won the TV. He went and picked it up today. It's a thing of beauty I tell ya!

Thursday, February 28, 2008

Fire Department Field Trip

Today we went on a field trip with other homeschoolers to the fire department. The kids had such a great time. The highlight of the day was spraying the hose. And since we were all headed home, they got to get soaked. The picture of Collin and Zachy I took while they were waiting for their turn to spray the hose. The wind would blow the water towards us, and I kept seeing them huddled together to stay dry. It didn't last long. All four of them were soaked by the time we left.
They also thought the fire truck was pretty cool. Everyone told me they want to be firemen now. Except for Collin, he wants to be a cowboy!









Tuesday, February 26, 2008

Fear

Today, as Emmie was sitting at Matthew's feet, bobbing up and down with her arms in the air, signalling him to pick her up, I was reminded of something.
After Zachy was born, we would ask the kids if they ever wanted another baby. Matthew's response was always a very hesitant yes. We would ask him why he hesitated, and he would tell us that he very much would like another baby in the family, but that he was afraid that the baby would be sick like Zachy.
And we were too. We let that fear grip us for quite awhile.
But then, I fell pregnant. And I was very frightened. I think people assume that we went into another baby completely lighthearted and carefree. In reality, nothing could have been further from the truth. We saw all the specialists I was supposed to see, and still, we were afraid. When I first went to the doctor, I was asked if I wanted to abort. Why? Because she was my fifth? I don't think so. When I first went in, I was a wreck. I told the doctor I was terrified, and wasn't sure if I was able to do this. But I never meant I wanted to abort. I had faith that no matter what was to be, God would carry us through. But still, I was afraid. I was afraid that I wouldn't like what it was God was about to carry us through. I was afraid that our lives would forever be changed. I was afraid our baby would die. I was afraid of seeing another baby in pain. I wasn't sure I could handle open heart surgery again, and I knew it wasn't the worst thing possible. I was afraid.
And I was afraid all throughout my pregnancy. You may remember me touring all the hospitals. All I was looking for was the NICU. How well they were equipped to handle my baby. It was something I could control, where this baby would be born.
And then she was born. All pink and perfect. All I said when she was born was, "she's pink" over and over. I sobbed. She was pink. And she cried. And suddenly, all was right in the world.
And then she was taken to the NICU because her breathing was labored. And everything they were telling me about her, was the same thing they had told me about Zachy. And I was afraid.
And now, in less than one week, that perfect pink baby, will be one year old. And she is perfect.
And I was watching how deeply she loves Matthew, and how deeply he loves her, and I was hit with this thought...you cannot let fear rule your life. If you do, you will miss out on some very wonderful things, and people.
I can't imagine life without our Emmie. And I know Matthew can't either. And had we let our fear run our lives, we wouldn't have her.
I need to learn to forever been leaning on the everlasting arms of my Lord. And then, the fear won't be there. I think I always try to take it back. I need to just give it. Because He always takes care of us. Even if something horrible had happened, He would carry us through.

Monday, February 25, 2008

Guess what this weekend is

Go on..guess...THE PHANTOM OF THE OPERA!!
Oh my, I'm so excited.
My dad took me when I was in high school, and I really don't know how the traveling show will compare to the one we saw in LA, but I'm still really excited to be sharing it with Matt.

Sunday, February 24, 2008

I have no idea what to title this post!

Zachary had an appointment with his electrophysiologist this past Wednesday. I meant to get on and post about it, but I woke up with mastitis Wednesday morning. By the time we got home my fever was climbing higher and higher. My whole body ached, even the joints in my toes ached. I was pretty miserable.
And trying to get into a doctor around here is really difficult. So, I started on some old antibiotics and hoped it wouldn't get worse.
By Thursday night my temp had climbed to 103 and I couldn't get it down. I also couldn't unplug the duct that was giving me all the problems. Matt said I needed to go to the ER, but there was no way I could drive there. I was so weak.
I tossed and turned all night and was just sweating through my jammies.
When I awoke, my temp was finally down. But I still hurt horribly. So I tried calling again for an appointment. I got the run around. Finally, I was given the number to OB triage, which is where the lactation consultant is. They told me to get to the ER.
I was able to leave all the kids with Matt in the afternoon, and finally get to the ER. They did an ultra sound and said the duct was NOT abcsessed, which is what I was afraid of because it wouldn't drain. That was great news. She started me on a stronger antibiotic with instructions to come back in 24 hours if I wasn't better.
After just one dose I was feeling so much better. I'm still sore, and my temp still goes to about 100 throughout the day, but there is improvement. YAY!
It was horrible and I wouldn't wish it on anyone.
So all of that to say that I didn't update about Zachy.
He's looking good. The pacemaker is working 95% of the time. Holy smokes that's alot. The doctor says he will lower the threshold at about 6 months in order to get the battery to last longer. How that will work is really too complicated to try to explain here, but it will actually be allowing one of his natural pacemakers to pick up some of the slack.
In a few weeks we get to use a machine that will send all the pacing info to the doctor over the phone. Zachy is super excited about this, and carried the machine around for days when it came in the mail.
Yesterday, was pathfinder and adventurer sabbath. Our kids all worked really hard and did such a great job. We were so proud of all of them. And when I say that, I'm not talkig about our 5 kids, but all the kids. We direct the club, so they're our kids!
Soon we will be moving onto planning VBS. Oh the fun never ends here!!

Sunday, February 17, 2008

The story about Matthew

I promised you a story about Matthew!
So without further ado.....
Thursday night, the youth of our church had a dinner for the couples. It was a fundraiser and the kids were the servers and hostesses.
Several kids were assigned more than one table.
Matthew, however, was assigned one.
When I looked in, I saw that he was assigned to Sandra's table.
Sandra is an elderly lady, who is nearly blind.
I think she tries to appear not so blind at church, because she will open the hymn book and hold it right up to her face. But Matt has seen it upside down on more than one occasion.
Matthew told me afterwards that he only had her table, and that he helped her read the menu, and when he brought her the food, he told her where on her plate different items were.
Then he said, "when I first was assigned to her, I thought, "oh no, why her??" but then I realized that she was really, really nice"
Now you have to understand that Matthew is pretty shy. And I was concerned about him getting her table. I wasn't sure how he would be able to handle it, because she is a talker too.
When he said that, I was so proud. I told him that I thought God had put him with Sandra on purpose, because none of the other kids could understand what it was like to have no vision. I imagine her vision is as good as Matthew's bad eye. And he was able to empathize with her.
I'm not sure many of the other kids would have had the compassion to read to her and help her out like he did. And he ended up learning such a valuable lesson.
He makes me so proud.

Saturday, February 16, 2008

Have I mentioned?

Have I mentioned that Emily is walking all over the place? Sure, she still falls, and thinks that crawling is much better. But she is indeed walking. How can this be? The boys all were at least a year old, with Matthew being the earliest walker. He took his first steps on his birthday.
The horrible thing is, I cannot remember what day she started. How can I record something I don't remember? Maybe I'll just fudge it in the baby book. I'll forget by next year anyway!
I have a great story to tell you about Matthew, but it will have to wait until a decent hour. It's midnight here, and I need to get to bed to be up for church in the morning.

Friday, February 15, 2008

Trees

I love the trees in Texas. Especially this time of year. I don't particularly care for them when they have leaves because the leaves are all really puny. But at this time, I love them. I think they have such character. All bendy and knobby. They all seem like halloween trees, if halloween had trees. No, they aren't the pine trees I'm so used to, but they have a uniqueness all their own.
Usually, these trees are just full of Grackles, and I have really come to enjoy their calls, as well.
Matt thinks I'm nuts for liking the sound of these birds, they sound a bit like crows, only not. And I'm sure he'll also think I'm crazy for dedicating an entire entry to the trees.
They are just so beautiful.



Thursday, February 14, 2008

Just the facts please

Today is Congenital Heart Defect awareness day. Here are some facts you need to know.

~~1 in 85 babies in the US will be born with a CHD. This does NOT include the babies who are lost during pregnancy.

~~CHDs are the most common type of birth defect, and the #1 cause of DEATH from a birth defect

~~CHDS are 2 times as likely and kill 2 times as many children as cancer EVERY YEAR

~~ There are 35 known types of CHDs

~~Most Drs believe that CHD is a genetic defect, but new research shows that mothers who take antidepressants and painkillers while pregnant raise the risk of CHD by 3 times.

~~Many children born with a CHD will not live to see their first birthday

~~CHDs are not always found at birth. Some are found years later. And sometimes after death, when it is too late.

~~CHD can NOT be cured. The heart will NEVER be normal. It must be treated for life.

~~Only one penny of every dollar donated to the American Heart Association goes towards pediatric cardiology research.

So many people do not know about CHDs...it doesn't make the news like cancer does. Why is this? The word needs to get out so that research can be done. Zachy's surgery has only been performed for about 40 years. So much can happen in the future, but research needs to be done!!

Hug your children today, and thank God for their hearts...even if they are special hearts.

Wednesday, February 13, 2008

Poem

You passed me in the shopping mall..(You read my faded tee)
You tapped me on the shoulder...Then asked....."What' a a CHD?"
I could quote terminology. ..There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin, Captopril. ...
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician. ..
She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying.. .it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected.. .
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I' ve stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

~~Stephanie Husted.....

Friday, February 8, 2008

Zach's heart

I've been wanting to share pictures here..but I am having a hard time getting to them. So instead, I will do this.

In honor of this
Photobucket

I'll tell you about Z's heart.

This is a normal heart..




And this is how Z's was at birth.



He also had one of these

Photobucket

It's really hard to tell on these pictures, but his pulmonary veins were connected to his superior vena cava instead of to his heart. The superior vena cava is the vein that his pacemaker leads are now through. Doing the surgery on that vein, is what caused it to be narrow and what caused all the problems during this last surgery.

You can see that the atrial septal defect repair would be in the right atrium. Unfortunately, this is where the sinus node is as well. The sinus node is what tells your heart to beat. The repair of the ASD is what caused the damage to the sinus node in the first place. And all the scarring from the repair is what caused it to be so hard to place the leads in the atrium.

There, now you know a bit more about Zachy's miraculous heart.
Related Posts Plugin for WordPress, Blogger...