Hodge Podge

Life is back to normal! Everyone is well and we have resumed life as we know it.
Last Friday, we had a great time! We went with the homeschool drama group up to Greeneville to a museum that has loads of Annie Oakley artifacts. We learned lots about Annie and Frank Butler. The kids really enjoyed the rest of the museum as well. Our group was too big, and I think that someday we may go back with just our family so we can take our time and soak it all up. It really helped bring the play to life though.
This week, we have something happening almost every night. How quickly that happens.
Tonight we went to the Y where I did water aerobics, and everyone else swam. It was the first time Zachy has been able to swim since surgery!
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I just started typing out our whole schedule for you, and then realized you really don't care! LOL
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OH!!! This is CHD awareness week! I've been a busy little bee spreading awareness where I can.
I have been busy trying to get "likes" on my Go, Baby, Go! page in an effort to reach more people. I'm currently having a contest to give away 3 bags of Rockin Green. Also, if I hit 200 likes by Wednesday at midnight, I'm going to draw from the fans to giveaway a knickernappies diaper. I also donated a mobywrap to an auction whose proceeds go to CHD awareness. You can click on that Go, Baby, Go! button on the side to like my page for details! I'd appreciate it!
What is Go, Baby, Go! you ask? We carry cloth diapers, baby carriers, teething jewelry, and baby skincare. We also offer local people the opportunity to actually see the dipes and try them on your baby. We offer cloth diapering and baby wearing classes, AND we offer a newborn rental package, which I think is just great!
If any of these things interest you, please go like me!!
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Somehow this got totally rambly...I'm tired..I need to go to bed. Hopefully, next time I'll have something intelligent to say!! HA!

Monday, Monday

No..it's actually Friday...but this Monday is the one I'm referring to.
If y'all could say a prayer for my Zachy, he'll be having surgery.
He has a lead wire that is threatening to break through his skin. If this happens then they would have to remove everything.
To avoid this, they are going to open up the pocket where the pacemaker is and revise that wire. At the same time, they will replace his pacemaker with a new one. One that is better than the one he has in now..and one that has a new battery! His battery currently has about 5 years left on it, but this will boost us back to seven to ten years. Then, if nothing else happens, he won't need another surgery until then.
He will stay overnight in the hospital. We got a hotel room there and will be staying nearby. The hard part will be the fact that no one under 14 is allowed upstairs, so we will have to split ourselves up. We will get through this though, we always do.
In other news, we are settling into our new house nicely. I love it. It is starting to feel like home. Currently, we are painting Emily and Natalie's room pink. Oh my is it pink. And Emmie LOVES it. I can't wait for it to be done so she can move back in to her room. Then we will work on the other bedrooms. After that, who knows what we'll paint.
We are close to being all unpacked, and I just wish we could finish it up and be done. I just keep putting it off though. Tsk Tsk!! I'll get there though.
The kids are enjoying the snow and sledding down our hill. Course they didn't have a sled so they were using the recycling bin! The neighbors felt bad for them and gave them one of theirs. Our neighbors are great, so kind.
This entry is totally all over the place, but I just wanted to jot some things down, but mainly ask for prayer for Zachy.
I'll keep you posted next week!

Zachism

This deserves it's own post.
This morning, the kids and I were having worship.
We were talking about easing one another's burdens.
I asked Zachy and Collin if they knew what a burden was.
I was surprised when Zachy said he did.
He then told me he had heard a song about it.
I was mentally wracking my brain, trying to figure out what song he could possibly be talking about, when he started singing.


"I fell in to a burden ring of fire...."

Oh my goodness, I cracked up. All I could think was that this would have made a GREAT Reader's Digest story!

The Beginning

We just got back from our Make-A-Wish cruise and I want to tell you the whole story about our trip!
Make-A-Wish is such an amazing organization and I want to start at the beginning.
Zachy's wish process actually started two years ago.
A friend told me we should apply for a wish for Zach. We were skeptical because we were under the impression that you had to have a life threatening illness to be considered for a wish. As it turns out, we were told that at some point you had to have a life threatening illness. Not necessarily right now.
I'm not really sure whether it was just having TAPVR or also being paced that qualified Zachy. I'm also not sure if Nannie will ever get a wish granted. Time will tell.
So anyway, the volunteers came to our home and talked with us and with Zachy about what he wished for. He isn't a very talkative kid, so it was really hard to get anything out of him. He really wanted to be Ben 10, but since he is a human, and not a cartoon, that is kind of impossible. He then stated that he wanted to live on a ship like Zack and Cody. The volunteers got the idea that he wanted to meet the actors from The Suite Life. So, we went with that.
When they first started to look into it, the show was in hiatus. So we waited to see if it was going to continue. By the time we got word that it was, indeed, going to run another season, Zachy was over wanting that. He still wanted to live on the ship though. So the natural direction to go was for a cruise.
We were advised through MAW to choose Royal Caribbean. MAW only works with Disney Cruise Lines and Royal Caribbean. They told us that Royal Caribbean treated their wish kids amazingly. We chose the cruise line, then started looking at the ships. We got to choose the cruise we wanted, and they did the rest.
The time came near for us to depart and we had a going away party with the MAW volunteers. They took us to Chuck E Cheese where Zachy was treated like the guest of honor. They brought him some goodies for the trip, and we just had a great time.







We then got ready to leave.



We flew Air Tran to get to Florida. When we arrived in Florida and claimed our luggage we saw a piece come around that was all taped up. Naturally, you hope it isn't your bag when you see that. However, it was ours. Matt took it to the baggage area and the next thing I knew, he was transferring our stuff to a brand new London Fog suitcase. SCORE!


We took a shuttle to the Marriott. We were supposed to have two rooms with queen beds. The wonderful people at Marriott upgraded us to a king suite with three rooms. Even with everyone having their own beds, they still ended up with us!


The next morning we got a bus to head down to Cape Canaveral. When we pulled up to the port we were greeted with a ginormous ship, and we knew right away it was going to be a week to remember.



We just didn't realize how memorable it would be!

I'm ba-ack

Not that I was missed on this old blog..it's been awhile since I updated. We just got home from Zachy's Make-a-Wish Cruise and it was AMAZING. I have so many pictures to post and entries to write about all the wonderful times and people. For now, I need to get to bed, but I just wanted to write to say we are home and had a fantastic time!!
Be on the lookout for pictures, coming soon.
I really need to do this. I never finished writing about Nannie's hospital stay and I always think about how I need to do that...so I MUST finish this topic..because it's a happy one!

Zachism

So the new year of pathfinders has started and this weekend is the first camporee.
Matt has Matthew and Dillon and the other four kiddies are here with me.
Zachy says, "can we please have a sleepover?"
Me, "ummm, no, we don't do sleepovers"
Zachy, "But Mommy, there are only four of us, and we will be soooo lonely"

Only in a large family will you hear that!! :D

Seven Years Ago

~This ended up being far lengthier than I intended. I understand if you don't read it all. I needed to write this out, for me.


Today is the seventh anniversary of Zachy's heart being fixed.
It was on this day, seven years ago, that we were thrust into the world of open heart surgery.
I remember most of that day, as if it were yesterday. A few things are hazy, but for the most part, it's etched in my mind.
I've never written about this, and decided it was time. Some images may be disturbing to some people, but he's my baby, and he is beautiful.

August 5, 2003, I was induced. Our fourth baby was coming. Our fourth boy. What a joyous occasion! Labor was fast and very painful. I had decided to go with no epidural, and he was sunny side up. When it came time to push, it hurt so bad, I couldn't stop pushing. He was born in four short minutes, and his face would later show the evidence of this. I was told that he didn't actually come face up, but that he came face first, so his nose came out first..no molding of his head, no wonder it hurt so bad.
When he was born, they plopped him on my belly. He was lifeless. I couldn't look at him. All I could do was ask, over and over, "what's wrong with my baby?" The midwife insisted that he was fine, perfect even. After what felt like an eternity (in reality, it was one minute) he let out a cry. A puny, little cry. They whisked him off to be cleaned up and weighed.
We were then allowed to hold him, and the kids and grandparents came in to meet the newest edition to the family.
What I saw, and what others saw, were drastically different. I saw a perfect beautiful baby. The first words out of my mom's mouth were, "he's black". I was so irritated by that comment. Little did I know that my step dad had turned around and left the room. Unbeknownst to me, an argument between him and the nurses was taking place in the hallway outside. He was insisting that they call the doctor, now. They were telling him they knew how to do their jobs and that he was fine, no need for the pediatrician to come. They told him she would be there when she did her rounds. He wouldn't stand for it. After much insistence, they finally called the pediatrician.
When she got there, they took him away, assuring us that they would bring him right back, after they examined him and bathed him.
The next thing we knew, the doctor was talking to us, telling us that his oxygen levels were low and he was on oxygen. They told us he was probably just born too fast and his lungs were still wet. They'd wean him off the oxygen over time.
This was not to be, and before we knew it, we were being blown a terrible blow.
Our baby had a heart defect, and would be transferring to a different hospital.
I was in such shock and so naive, that I asked them how we would get him to the hospital an hour away in our car, with oxygen. They informed me that the helicopter was on it's way. That's when it hit me that this was serious. Much more serious than I wanted to admit.
This all took place August 7. By the time we got to the other hospital, they had him settled in his room in the PICU, and we were greeted by many doctors. They took us in a room to explain to us that Zachary's pulmonary veins hadn't connected right, and that the only option was open heart surgery. They told us that TAPVR occurs in 1 in 15,000 babies. They also told us that he had a 95% chance of survival.
Most people would be thrilled with those odds, but we had just hit something that had a .0015% chance of happening..so 5% seemed huge.
That night, they wanted to put a line in his belly button. They told us it would take about a half an hour. Three hours went by, and when we saw him again, he was intubated. We weren't expecting to see him on a vent. That was hard. Really, really hard.
August 8 came. Surgery day. I will never forget riding in the elevator with him, and kissing him goodbye in the hallway. What a horrible thing. I was trying not to break down and cry, but all I could think about was that this could be the last time I saw my baby alive.
The surgery was to take six hours.
I remember the waiting room so clearly. I remember it being filled with people. My mom and step dad were there, and Matt's parents. Some people from some one's church came to sit. I have no idea who they were, and kept thinking I didn't have it in me to be sociable with people I didn't know. I purposely kept my distance from them. They could pray with my in laws, but I needed them to leave me alone.
Being in the waiting room, was somewhat like being in a fish tank...everything around me was hazy. All the sounds were muffled. And yet, it was all so clear.
At some point, my step dad asked me what I was scared about. I said I was afraid of him dying. He informed me that if he did, we would get through, and to not be scared. I didn't believe him and thought it was a horrible thing to say. I know now, he was just trying to help.
There was a time that I went to the PICU to pump. I rode in the elevator, carrying my "personal belongings" bag that held my pump pieces. There was a lady on the elevator who looked at me excitedly and said, "are you here for the reason I think you're here???" I don't know how I didn't cry. I just quietly told her no. When I got to the PICU the cardiologist expressed his concern about me. He told me I had to sleep, I had to take care of me, or I would end up being readmitted to the hospital. I hadn't left Zachy's side. People wanted me to leave the hospital, but home was 2 hours away. They talked about the Ronald McDonald House. I insisted I had to stay at the hospital to be able to pump. My mind was so set on him not getting formula, only breast milk, when the time came. It was the only thing I felt like I could control. The hospital ended up giving us a cot, and I slept on the cot in the family waiting room in the PICU, and Matt slept on the couch. Some nights, he went home, but I never left. As a side note, I wasn't able to do this with Natalie, and going home without a baby every night was so incredibly difficult.
When I returned from pumping, an elderly lady met me in the hall. She asked me if I had a baby having heart surgery. I told her yes, and she proceeded to tell me that her husband was supposed to have had the first surgery of the morning, but he was pushed back for a very sick little baby. She told us she was thinking of us, and wished us the best.
Somehow, everyone in the waiting room must have known we had a baby in surgery. They all stared, often.
After only four and a half hours, the cardiologist came into the waiting room. A hush fell on the room. You could almost see everyone leaning towards us as the cardiologist spoke to us.
Zachy was out of surgery. And he was doing great.
We were finally reunited with our baby. Mother's eyes are amazing, because when we saw him, I never focused on all the tubes coming out of him. I saw past it all, to my precious baby. People always commented on how many IVs and wires and tubes he had, but I just didn't see it.
The one thing I have no recollection of from that day, is where my other kids were. I'm thinking maybe with Matt's grandparents. I have pictures of my mom holding Collin over Zachy, saying goodbye. At some point, they were there. Did they stay the whole time? I really don't think so. But in all honesty, I don't know. Neither does Matt.
The following days would be a blur. I never left, for fear that something would go wrong, and I wouldn't be there. Matt had to go to work, we were so poor at the time, there was no paid time off. I would miss him fiercely on those days.
One week later, we got to bring our baby home. He had no complications while in the hospital.
He not only survived, but thrived.
By the time he was four, he had developed sick sinus syndrome, and would need a pacemaker. His future holds surgeries for the rest of his life. But that's a different story, for another time.
We know what we have. We know what a gift we were given, and how precious life is. There is not a single day that the thought doesn't go through my head of what could have so easily been. I thank God every day for blessing us with this amazing boy, and all our kids for that matter. We truly are blessed.

Please excuse the quality of the phots, they are either scans of pictures, or pictures of pictures. No digital camera back then!



Being weighed, after birth. Notice, no crying. He really never cried very much.

This was right after he was born..well after they got him to cry.


His poor face was so swollen from being delivered so quickly. He couldn't even open his eyes, and his face was completely purple from the bruising.


Getting ready to go for a ride in the helicopter.


This is what we were greeted with after they told us they wanted to put a line in his belly button. He ended up intubated.


The morning of surgery. In all of these pictures, we are smiling. I think we were at a place of trying so hard not to break down, so we laughed instead.


Right after surgery. I was certain he would end up bald, because for days all I could touch was his head. I would just sit and rub his head, I will never forget the feel of that baby fuzz.


Another pic from right after surgery.


On his birthday...surviving..and THRIVING!! Love you, Zachy!

Diagnoses

The other day, I once again, felt that kick in the gut.

In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.

So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt's file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can't go to that base.

Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.

The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.

Since I always feel the need to read every report I'm ever given, I decided to read this one too.

I read through Zachy's. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.

I then went to Natalie's. Her diagnoses read TAPVR, and Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.

So here's where I felt the kick in the gut....we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won't. But the fact that it was written in her records, it just makes it that much more real.

I'm sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.

Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It's just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.

I know everything will be just fine, it was just another one of those times that took my breath right out of me.

Things I Just Don't Understand

There are things in this life that I just don't understand. Ranging from simple things to more complex things.
And sometimes, I think I may be a little crazy. But that's OK, we're all a little crazy. Right? Somebody please tell me I'm right!



For instance...
Why does Rockin Green Laundry soap work so well? I can fill my washer up with the soap and water and it's crystal clear. I add my clothes, and I can no longer see through the water. How are our clothes so dirty? I've washed clean diapers in it, same thing. How long does it take for all the built up laundry soap to be removed? Will our clothes always cause the water to be filthy? I just don't understand.
And on the topic of laundry...I don't understand how Collin can insist on wearing the same clothes day in and day out, and yet when I wash his clothes, he has a bigger pile of clothes to be put away than anyone.

How come when Matt leaves, and tells the kids they can't come with him, it suddenly becomes my fault? Today, Matt has been cleaning out the van. He took out all the seats so he could vacuum it. When he left to vacuum it, of course no one could go with him. Emily cried her eyes out. And it was me she was mad at. As if I was the one who took all the seats out and wouldn't let her go.
I just don't understand.

I just don't understand how it can be, that doctors can go through years of medical school, learn a fraction of the workings of the human body, and still not believe in God. How can you learn all the intricate details of cells and think it all happened by chance? I do understand that they see people die, and it could cause them to wonder how a loving God could allow an innocent person to die. I get that. I don't get how they can't recognize all the miracles that happen around them, daily.

And finally, how can I be going about my day, cleaning out a cupboard, and have my world flipped upside down again? Every once in awhile, this happens. Today, I was cleaning a cupboard. It happens to be the cupboard that holds some meds. I came across a bunch of tiny medicine droppers. Droppers that were given to us when we took Natalie home from the hospital. Droppers for Lasix. And my heart dropped. All the feelings came rushing back, and for a moment, it was as if someone had sucked the breath out of me.
How can this still happen??? Why does this still affect me this way? Why is it so much harder this time than when it was Zachy? Or is it? Maybe it was like this with him, and I just got over it. I know I'll get over it this time too. I know I am so blessed. My baby is here. Alive. THRIVING. And yet, these things still hit me like a kick in the gut. Why?
I just don't understand.

I really need to stop ranting!

I know I've been a bit ranty lately, but please, allow me to rant one more time.
If you are a member of facebook, you have undoubtedly heard of the Chase Community Giving. If not, here's a rundown. Every person on FB has 20 votes they can use to vote for their favorite charities. Now, you can't use all 20 one one charity, you have to spread them out.
The top two hundred charities split a huge amount of money. I can't remember exactly how much it is, but it is enough per charity to make a difference.
So, the voting ended, and you could check out the winners.
What I saw really made me so mad.
Charity after charity related to animals. ANIMALS!!
Now, don't get me wrong, I like animals as much as the next person, but COME ON!!
You know what I didn't see?
I didn't see Saving Little Hearts, or any other CHD charity. I'm sure if any others signed up, but I know that SLH came in like 234 or something.
People...CHDs are REAL. They aren't something that is minor. They are major.
There were pediatric charities that won, which is wonderful. But CHDs will kill more children in one year than all childhood cancers combined.
Does anyone know that? Nope.
Why?
The awareness isn't out there. I cannot understand that. I'm sure it's hard for me because CHD is everywhere I look. I have many CHD friends, and it almost seems like the norm.
But here's a problem. Everyone knows about childhood cancer, it's visible. Everyone has seen the heart wrenching pictures of the child with no hair. Everyone has seen the St. Jude commercials. It's out there.
No one knows about CHD because, unless you see the children with their shirts off, you don't see it. There are no heart wrenching stories on TV. We have celebrities that do nothing, Shaun White, Brett Michaels, a Backstreet Boy, and I'm sure the list goes on. Why aren't they saying anything? They have the perfect platform to spread awareness. It makes me so upset to think about it. Because I'm just a person, I don't have the platform, but they are out there.
Then there was Boston Med. Those of us in the heart community were so excited. Finally, reality was going to be shown. And then. It wasn't. It was totally sugar coated. The baby was born with HLHS, which is serious. Many babies die from HLHS. But in the show, they just showed the baby going home like all would be fine.
And that's how many people think of CHD. That it gets fixed and everything is fine.
Only it's not.
These kids have to live with this for the rest of their lives. It is never fixed.
Yes, they can lead normal lives, sometime, but it will never be normal like a heart healthy child.
And the parents are never fine either. There is always worry in the back of our minds. When anything goes somewhat askew, we wonder. We wonder 'what if something is happening?' It never, EVER goes away.
And yet, we vote for animals. Animals.
And so, to show you the heart wrenching, I'm sharing what CHD is. The heart wrenching part of it.
It is this.

Natalie


Zachary

And it is funerals for babies or children who passed away far too young.
It isn't pretty. But it is very real.
There is hope, though. Back when Zachy was born, we were hard pressed to find anything regarding TAPVR on the Internet. Not so much, anymore. And through networking sites like Facebook, we are able to connect with so many more people, and spread the word.
CHD is real.

Zachy is so smart!

I took down my VBS montage because I wanted the music back on my blog. Also, something happened and the one that showed up here wasn't the finished product. Only, now we can't find the finished product.

Anyhow, as I was saying, Zachy is so smart.

The boys are all hungry and complaining that there is nothing to eat.
Zachy says, "you could have an apple"
Then, "you could have carrots"
"ORRR you could eat everything in the fridge!!"

He is so silly, but really if we would all think like he does, we would all be nice and skinny. Apples and carrots indeed!

Day of Rejoicing

Today, Zachy and Natalie both had appointments with the cardiologist. It was quite funny when they brought us back to the exam room. I only had Matthew, Zachy, and Natalie with me. We went to a tiny exam room. A nurse took us. Zachy got on the bed and she started working with his pacemaker. At the same time, another nurse was doing an EKG on Natalie. Then, two residents came in...one to ask me questions about Zachy, one about Natalie. We were all crammed into this little room, and it just made me chuckle.
So Zachy is doing great. His pacemaker battery still says it will last 5-7 years. Great news. The only downer was that the doctor said if Zachy grows like Matthew, then we'll be needing to replace the lead wires sooner than they thought. That's kind of a bummer. It was so hard to get those leads in, I hate to think of how it will go next time. But, that's several years from now...no sense thinking about it now. He goes back in six months, for his last visit before we move.
Good news for Natalie too. Her heart looks great. She does have a bit of narrowing at the repair site, but nothing to worry about. The doc thinks that it would be good in a couple years to do an MRI to see the structure of her heart better. However, he won't be her doctor in a couple of years, so we'll see what the new doc says. The most exciting thing is she has graduated to 6 month visits. She will go one more time with Zachy. So hard to believe, but oh so wonderful!

Just One More Reason I Hate You, CHD...

Last night, Zachy asked me if I thought we were going to have another good Christmas this year.
I told him that sure we would
He then asked if we were going to have another baby this Christmas.
I told him that no, we wouldn't be.
He was so sad and asked me why. Then Dillon chimed in, "yes, why not?"
I had to explain to them that not all babies with CHDs live, and I could not handle losing one of them. It would just be too much.
Dillon said, "yes, but isn't it really rare to have three babies with heart defects?"
Then I had to explain that it is indeed, very, very rare...but it is also incredibly rare to have two with the same defect. A rare defect, at that.
Zachy then told me he guessed it wouldn't be a good Christmas this year,after all, not without a new baby.


Yes, CHD, we would have loved to have more kids, but you have ruined those plans for us. I hate you intensely because of that. I grieve the children we won't have, because of you. I hate you.

Unbreakable Bond

I have been meaning to write about this..and every day it gets better.
The bond between Zachy and Natalie is unbelievable.
Zachy tells her every day that he is so glad she didn't die, and that God let her stay with us. He truly means it.
He kisses her all the time and is always whispering in her ears.
Today, he asked me if we were going to have anymore babies.
I explained to him that I didn't know, because I couldn't have handled if either of them had actually died, and we weren't sure we wanted to risk that again.
He said, "that's why I want to protect babies. I want to be a doctor"
"oh really? A doctor that takes care of babies? Or a doctor that takes care of babies hearts?"
"A doctor that takes care of their hearts. I don't ever want a baby to die because of their heart"
This is the first time he has expressed an interest in being a doctor.
We have often asked him if he wanted to grow up and be like Dr. Bush, and the answer was always no.
Apparently, seeing what it does to someone, other than yourself, totally changes things.
He never used to really talk about his heart, but now he does.
He tells me, "me and Natalie have the specialist hearts in the family".
He loves her so deeply, and it touches me so much. They will be bound for life.
He is young, and time will tell if he becomes a pediatric cardiologist, but I can't imagine anyone more empathetic than him.

Dear TAPVR

Dear TAPVR and your faithful sidekick ASD,
I'm writing to you because they say that sometimes it is easier to talk about your feelings in writing. I'm willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don't particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I'm not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor's minds. They will do x-rays to be sure blood isn't backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone's minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I'm sorry no one informed you of their ability to do that.
I don't like you. In fact, I hate you. And I don't hate easily. In fact, I can't think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat...no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I'm so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn't know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.

Not a call I really wanted

So I got a call bright and early this morning. It was the nurse from the electrophysiologist's office.
By the way, I've never gotten a call from her before, which of course makes my heart drop.
She told me that Zachy's last phone transmission showed his leads all look great, but he is having several episodes of high rates. She said it's nothing life threatening..yet..and that he needs to be seen.
We already had an appointment set up for October 14, and we are just keeping that appointment.
I am praying it is an easy fix. However, one of the reasons we paced him when we did, was to avoid getting to the point of tachy rhythms. Tachy is much harder to correct than brady. The hope was that by getting the brady under control, it would be like a normal heart and he wouldn't ever get to the tachy point.
I don't know how they are going to correct it. Before they paced him the doc talked about having to control tachy rhythms with meds. I keep hoping maybe the can just set a high threshold. But that doesn't make sense to me. It is easy to zap a heart and make it beat, but how do you zap it to make it slow down? Of course, I'm not the doctor and it may very well be possible. We'll see.
Have I ever mentioned how much I hate CHD. I hate that any child has to suffer through any of this.
I wish the Lord would just reach down and heal my baby's heart. And at the same time, I know how incredibly selfish that is. My baby is here and alive, so many aren't that lucky.
I find it almost comical that this is happening now. This seems to be our pattern. Things will be quiet in our house for awhile, then Matthew and Zachy will be hit at the same time. In fact, when Zachy was paced, Matthew had surgery a week later. So it figures that we would be dealing with all we are with Matthew and things would pop up with Zachy!
Anyway, his appointment isn't until the 14TH and I am going to try hard to not think about it until then!!

Thank you, Thank you, Thank you

Yesterday morning, Zachy was praying for our breakfast.
He was saying, "thank you for the food. Thank you for our family." etc. Then he ended with, "and thank you, thank you, thank you that we are getting a new baby sister".
So sweet! He is so excited and asks all the time if it is Christmas yet.

Fat Tummy

Zachy was sitting with me, patting my tummy.
He said, "why do mommies' tummies get fat when a baby is in there?"
I told him because they were growing babies, and asked where else they would grow if not in their mommy's tummy.
He replied, "in the house!" while looking at me like I must not be very smart.

Collin was talking to Emmy when I heard him singing. He was singing "Soon and very Soon" Only instead of "soon and very soon, we are going to see the King" he was singing, "soon and very soon, we are going to have a baby sister". So cute.

When we have a baby boy......

Zachy often talks about when we have a baby boy. I try to tell him that he is my baby boy, and I get a look of, "get real mom!!"

One thing he is adamant about is that when we have a baby boy, we must name him Tarzan. If you've been reading for a long time, you know that he wanted to name Emily, Tarzan. He says it is because Tarzan is just "ho, ho cute" (so so cute). And don't you agree???




The other day we were at the outlet mall, and the strollers were in the shapes of cars.
Zachy said, "when we have a baby boy, can we come back here so he can ride in one of those cars??"
It was ho, ho cute.

Zachy's Heart

I have asked you, in the past, to pray for Zachy and his lack of endurance.
He saw the doctor last week, and I figure the least I can do is share with you what happened! How generous, I know.
A pacemaker works in a couple of ways. First, they set a threshold for minimum beats per minute. Zachy's is set at 80. So, anytime his heart rate drops below 80, the pacemaker strikes. Which, is essentially all the time.
The other way it works is by sensor. This is for activity. There is a crystal in the pacemaker, and basically, when it jiggles, it tells the pacemaker that the person is active and needs a higher pulse rate.
Before November, the crystal hadn't been activated. He was able to raise his own heart rate when he was active.
In November, they activated it. So, when it jiggled, it told his heart to beat at 120 beats per minute.
What the doctor expected to happen was that after the pacemaker got the beats up, his heart would take over and function like a normal heart and allow the heart rate to go down naturally.
On Monday, he saw his doctor.
They drew out the information from the pacer and a bar graph showed up. Different heart rates. 120 and 80 had high bars. The rest were basically non existent.
What was happening was his pacer would tell his heart to get up to 120 bpm, then as soon as he stopped moving, his rate would crash down to 80 bpm. There was no gradual decline. Just sharp drops.
Talk about tiring a person out!
Dr. Bush has now set it so that after the jiggling stops, his heart rate will decline slowly over ten minutes.
We are back in the wait and see how it all plays out stage. We are praying this will help tremendously.
When we stop and think about it, it totally amazes us. Nothing about his heart working is natural. They did turn the threshold down to 40 on Monday to see what happened and his heart dropped immediately. The doc still says he isn't pacemaker dependent, which only means that he won't die without being paced. But he is currently being paced nearly 100% of the time.
We are so thankful for technology, and the fact that our little boy is here with us.
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Totally related to absolutely nothing...why in the world can't someone invent a universal power cord? I have pictures to upload for you, but cannot find the cord. I just used it, and now it has disappeared. I have a gazillion other cords, none of which fit. It seems so simple to me...one universal cord.
It would certainly make life easier!