What a week!

For the last two weeks, Matt has been TDY.  Last week he was in Rhode Island, this week he was in San Antonio.  I so wish we could have made the San Antonio trip with him, but alas, we were all home while he was enjoying our old family and friends!  Maybe next time!

Last week was pretty uneventful, in fact, I can't really remember what we did.

Oh yes, we started school!  It went really well, for a first week.  Still working out some issues, but this happens every year.  I think we're off to a great start!

This week though, it was another story!

We had appointments all week long.  Good to get them all out of the way at once though, I always say!

Matthew is having surgery on Tuesday, so Monday he had his pre-op appointment.  All went well and he was cleared for surgery.

Tuesday, he went to the dentist and had no cavities.  I was trying to remember, and I don't think he has ever had any cavities.  Not bad for a 15 year old!

Wednesday was the exciting day!

It started early with a radio interview!  Myself and two other moms were asked to be the guests on a radio show.  Our half hour show was about mended little hearts and CHD in general.  We were all nervous, but it was so great to get our stories out there.  We only have 70 some families in our group, and with CHD affecting 1 in 100 children, we know that's just the tip of the iceberg.

Dillon is so funny, because he is convinced this will make me famous!  HAHA!! 

I know it airs in October sometime, but I don't think I can listen to it.  I'd pick apart everything I said!

From there we had to rush to the cardiologist for Zachy and Natalie's check ups.  I didn't really think Natalie would cooperate, since she hasn't ever since her RSV.  She managed to make it through the EKG, but that was it.  The doctor tried to echo her, but she wouldn't have it.  She has a questionable pulmonary vein that we need to keep an eye on, but the doc feels comfortable just retrying in six months.  At that point, if she doesn't cooperate, we'll have to do a sedated echo.  The good news, regarding her, is her rhythm looks great!  By now Zachy's was a mess, so things are looking promising as far as her not needing a pacemaker.

Zachy did great, and for the first time since being paced four years ago, has graduated to appointments once a year!  Go Zachy!!

Thursday, Natalie was supposed to follow up with pulmonology, but she and Emily woke up with high fevers.  Emily was vomiting as well.  Poor girls, they were miserable.  No pulmonology for Natalie! 

Friday was spent relaxing and trying to get well!

Matt gets home late tonight, and I am so looking forward to having him here!  I hate when he is away.  We miss him so much.  Emily woke up this morning and the first thing she said was, "today is the day we get Daddy!  YAY!!"

This coming week will be much calmer, I hope!

Pulse Oximetry: Why it should be mandatory

August 5, 2003, my beautiful baby boy was born after an uneventful pregnancy and delivery.  When he was born, however, he didn't cry.  I asked over and over, "what is wrong with my baby?"  The answer repeatedly was, "nothing, he is perfect"  and "we just need to get him started".  They slapped his feet, they jiggled him around, they sat him up, laid him down, finally, he let out a weak cry.  Then it was heartier.  Hooray, he WAS perfect.  They bundled him up and gave him to me. 
The nurses and midwife then left the room in order for us to bond with him.
Our family came in. 
When my mom saw him, the first words out of her mouth were, "he's black!  Look at how dark he is"  I looked at her with a weird look on my face.  She went on, "look at his hands, they are so dark"  I told her it was fine, all babies were born with blue hands and feet.  I was seeing him through mother's eyes.  I saw nothing but perfection.
While we were introducing the brothers to Zachary, unbeknownst to us, my step-dad was in the hallway demanding the nurses take him and run tests.  They refused.  They said he was fine.  My step-dad persisted and finally the nurses took him to give him a bath. 
Time went by, and they didn't bring him back to us. 
After what felt like an eternity, the doctor came in to inform us that they had noticed he was blue while bathing him, did a pulse ox test, and found his SATS to be low.  He was placed under an oxygen hood.
No one knew what was wrong with him.  We were told things like, "he was 3 weeks early, his lungs are immature" "he's a big boy, and big boys tend to have wetter lungs" "his lungs are wet, they'll dry out".  They ran test after test.  All were negative.  They started him on antibiotics in case a pneumonia was missed. 
Finally, an echocardiogram was performed, and our world turned upside down.
The important thing is, because of the pulse ox, they knew something was wrong, and he was put on oxygen right away.
Zachary was diagnosed with a congenital heart defect called Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect.  A complex, life threatening heart defect.  The morning after he was diagnosed, he had open heart surgery.
Then thing was, there was nothing to indicate he had a CHD.  No heart murmur, nothing.  Just a low pulse ox.  While we waited for the cardiologist to read the echo, we asked the pediatrician if she thought it was his heart.  She said no, not at all because he didn't act like a baby with a CHD.
Fast forward six years.  I was pregnant with my sixth child.  I had several fetal echoes and was told that her pulmonary veins could be seen and looked great.  I was told over and over that her heart looked great and there was nothing to indicate anything would be wrong.
When she was born she looked so great.  She was breathing so well.  I remember telling her, "you're such a good baby, not even grunting, you'll avoid a NICU stay!"  Later in my room, Matt was holding her, I told him to cover her up, she looked cold.  I look back and realize how silly that was.
Again, they took her for a bath, and didn't bring her back.  After about an hour, Matt went to the nursery to find out what was going on.  The nurse said she thought that Natalie looked dusky so did a pulse ox test.  She had called in the pediatrician because her SATS were low.  When the pediatrician got there, we told him about Zachary.  He did a blood gas test, which came out bad.  An echo was then ordered and it was discovered she had the same defect as her brother.
The interesting thing is how well she did.  The reason babies stay in the hospital for so long after heart surgery is often because of feeding issues.  Because of this they wanted to hold out as long as they could to give Natalie the chance to really learn how to eat in hopes that she wouldn't forget when she was able to eat again.  She was hooked up to monitors and Matt and I commented on the fact that watching the monitors was like watching someone die.
She looked sooo good.  And yet we watched and one day her respiration rate went up.  The next her O2 SATS went down more.  And still she looked good.  She didn't look like a thing was wrong with her.  Finally at six days old, because the monitors said so, the doctors said she needed her surgery that day.  Still, nothing looked wrong.
TAPVR is so often missed at birth.  The babies look fine.  Unfortunately, many TAPVR babies pass away without being diagnosed.
I will never forget the nurse who decided to test Natalie.  In my opinion, she is a huge reason my daughter is here today.
So, what is pulse oximetry testing and what's the big deal?
We've all seen a pulse ox test.  It is the little red light they put on your finger when checking your vitals.  They are measuring the amount of oxygen in your blood.
To do this test in a newborn, costs less than the cost of a bandaid.  Hospitals crank the prices up and insurance doesn't have to pay for it.
 New Jersey has now made pulse ox testing mandatory on newborns 24 hours old.  This means insurance will have to cover this non invasive test.  It doesn't mean that a parent can't deny it, though I'm not sure why they would.
In recent studies they have learned that about a third of one percent of babies tested at 24 hours old had false positive results. 
A pulse ox test won't catch every CHD, but it will catch many. 
I have been reading study after study to put in here, but I'll let you google it.  Just google Pulse Ox screening newborn and you will find that 1 in 15,000 babies will be born with a critical CHD and half of those will die before a diagnosis is made.
People think that a CHD can be caught by listening to the heart.  This is so wrong.  My kids didn't present with a heart murmur.  Many don't. 
We screen our babies for things like hearing loss and PKU without giving it a second thought.  It's just routine.  The false positives from those tests are so much higher.  Hearing tests cost much more than a pulse ox and while hearing loss is devastating, it isn't life threatening.
It is so important that we make this test mandatory.  Insurance companies need to pay for this, and hospitals need to not jack up the price. 
Babies die from detected CHDs, but how tragic that any baby should die from an undetected CHD, especially when a simple test could pick up a problem.  No parent should have to experience this. 
So, what can you do?
Write a letter to your state representative.  Tell them how important this is. 
Sign the petition that I've linked to on the side bar.
And most importantly, if you are pregnant, or ever get pregnant, please demand a pulse ox test on your baby at 24 hours of age. 
Yes, this is long.  But it's personal to me.  Not a single day goes by that I don't thank God that my babies are still here.  I know how easily it could be different.  TAPVR is one of the top 5 defects that isn't detected at birth.  I am just so, so thankful that people had the sense to perform a pulse ox on them.

I hate feeling like this

Everyone once in awhile, I get to feeling so down about the CHD world.
I know I've written it before, but it just kills me that so many people deal with this.
I know that writing about it can't make it go away.  I just hate it so, SO bad.
Last night I was thinking that if you want job security, you should become a pediatric cardiologist.  There will never not be a need for them.
At the YMCA I am constantly scanning everyone's chest.  I never see any scars.  I wonder why.
I scan because even though I hate all of this, I'm always desperately looking for someone who has been where I have.  I need someone I can connect with.  Someone who understands what it's like to have gone through this hell.  To live this life.
I have loads of CHD friends on line, but I really need someone in real life.
Tonight is my second meeting with the local Mended Little Hearts group.  Could you please pray for me?  That I might meet someone who I can share my fears and joys with.  I would so appreciate it.
I know we'll be ok, and I will survive all of this.  I just need to be lifted up in prayer once in awhile.  :-)

A Rare Breed

I'm writing this for no particular reason. Nothing has happened, all is well. It's just something that I often have thought, and figure I'll write out so others can understand.
There are 35 (I think) known CHDs...ranging from simple to complex.
TAPVR is considered a complex CHD. However, if everything goes well, once repaired, TAPVR shouldn't cause any problems later in life. Now, TAPVR does present in several different ways, and can be very, very complex..then it does cause issues later in life.
However, for what I'm talking about is my kids.
Technically, they should be fine from here on out. Yes, Zachy has a pacemaker, but he should be fine.
Most TAPVR kids have the same prognosis.
And yet, I don't know a single TAPVR mom who doesn't worry every time their child goes to the doctor. Or wonder if their lips look blue, or if it's just the lighting. I don't know any TAPVR moms who don't wonder, with every cold, what horrible thing could happen.
Again, technically, we shouldn't have to worry about any of this. But, we are moms, and dads, and we have watched our children fight for their lives, and we will never forget that. And it scars us, as much as it does them...if not more. Always, it is in the back of our mind, no matter how logical that may seem. It's just par for the course, being a TAPVR parent.
However, I feel like it sets us apart in the CHD world. We don't have to deal with multiple open heart surgeries (again if all goes well..TAPVR kids sometimes DO need multiple open heart surgeries), and we don't have to wonder every day, if today will be the last day we have with our child.
I feel like it kind of makes it hard to fit in, in this CHD world.
I have been in actual support groups, where the moms of the HLHSers (a VERY serious defect, where the child is essentially born with half a heart) in a sense feel better than us...like they have it so much harder, so they deserve to be part of the group more. They deserve to have the heart walk teams, because they deal with so much more.
And they do deal with more! And I am SO thankful that we got TAPVR instead of HLHS.
However, it doesn't make our TAPVR road any less real. It doesn't mean we don't deal with feelings that are so real.
We hurt at seeing our babies hurt just as much as they do.
I see it all over the CHD community. I don't understand it.
I love my new support group here, I haven't felt this with them.
The thing is, we are all fighting for the same thing. We are all on the journey together. It shouldn't matter who has it worse off, because really, if you look hard enough you can always find someone worse off than you!
I think doctors often don't realize it either. We are often discharged from the hospital and just sort of left. No one ever reaches out to be sure the parents are ok. No one suggests support groups. No one tells us that it's ok that the feelings never go away.
Anyway, I'm rambling, and I really have no idea why I'm even sharing this. Us TAPVR parents know who we are, we have our own support groups for other TAPVR parents who understand where we are, we are ok.
It's just been on my mind lately.

Our Decision

I've been asked about our decision to have another baby after having a heart baby.
I figured I'd write about it here.
I am aware that our decision is not the popular one, but that's ok.
To understand our decision, you sort of have to know some details.
After we had Zachy, we had no idea what we were going to do. We had always wanted lots of kids and hadn't made a decision about whether or not we would have more. We kind of assumed we would but had never said yes or no, for sure.
After awhile, I had my usual baby fever. I couldn't imagine not having another baby. Matt was pretty scared about ever having a heart baby again, but I was pretty confident that we wouldn't have to worry about that. After all, the chances of having another heart baby only raises to 3% after having one heart baby.
We finally had decided to just let go and let God.
Shortly after that, we were surprised to find out we were pregnant with Emily.
I won't lie, that pregnancy with her was super stressful.
Because of Zachy, I was given monthly level II ultrasounds and a few fetal echoes. I chose my doctor based on where she delivered. Everything I did was centered around having another heart baby.
Thankfully, it was all for nothing. Emily was born perfectly healthy. We were so thrilled and were reassured that the TAPVR that affected Zachy truly was just a fluke occurrence.
After that we were open to however many kids God wished to bless us with.
When Emily was 2, we learned we were pregnant again. I now had the doctor and my pregnancy went along like Emily's. Including the level II ultra sounds and fetal echoes.
We were in such shock when we learned she also had TAPVR. My pregnancy was pretty stress free because we didn't know, and we assumed it wouldn't happen again. I'm grateful for that.
We have now been told our chances of another CHD baby are pretty high. What to do.
We have talked and talked and prayed and prayed about this. The only decision that brings us peace is to continue to allow God to bless us with however many children he chooses.
I know so many people think we are crazy. And that's OK. When you are in constant turmoil over what to do, and when you both agree that the only decision that brings peace is to go on, you have to go with it.
Are we nervous that we will, at some point, have another heart baby? Absolutely. It terrifies me. However, missing out on a blessing terrifies me more.
We have been blessed in the fact that our children are OK and alive. We know how easily this could not be the case. And how it could turn out bad for future children. We have faith, however, that whatever happens, God is in control. He chooses when we live and die. His plans are certainly not always ours, but we have to have faith that they are best. Someday, all our questions will be answered.
Again, I realize that our choice is not the popular one. In fact, there are very few people I can think of who would choose to have more after what we've been through. It's OK though, because we are confident in our choice.
We won't ever consciously try for another baby, but we won't do anything, other than nursing, to prevent a pregnancy.
I hope this answers some questions people may have. I know that I always wanted to hear other's opinions when we were in the midst of choosing what to do. :)

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!

Once again, I marvel

Once again I'm marveling at God's wisdom.
Last year, at this time, I was heavily pregnant.
Christmas Eve would make me 37 weeks.
Due to a blood clotting issue, my doctor induced me at 37 weeks with Emily. We assumed the same would hold true this time.
I have always wanted a Christmas baby. I cannot imagine a better Christmas gift than a new baby.
I was so excited. This might finally be the Christmas babe I'd dreamt of.
And why not? If the doc induced me right at 37 weeks before, surely she would this time.
I knew no doctor would want to work during the holidays if they had a choice, but I still held out hope.
Except, part of me was nervous about having a Christmas baby. I told Matt that part of me really wanted a Christmas baby, but part of me was terrified. What if something was wrong with this baby? What if this baby passed away? I didn't want Christmas to forever be marred with that memory. Or the memories of open heart surgery.
I knew. Deep inside, I knew.
I look back and I marvel at God's wisdom. I can celebrate Christmas with nothing but the memory of being pregnant. Joyful memories of life within me.
You see, memories of NICU stays and open heart surgery days...they stay with you. Even if your baby goes on to be healthy, those days, they haunt you. January 11 will come, and I will remember the events of that day. I will vividly remember the feelings, seeing her for the first time, the swollen baby, the vent, the incision...all of it will come rushing back.
For Christmas though, only sweet memories linger. I am so grateful.
Thank you God, for always doing what is best for us, even when we dig our heels in and think we know better than You!!

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!

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.

Thoughtful Thursday

Painted by Nathan Greene, this is arguably one of my favorite pictures.
I know this scene has played out several times in my own life. Well, not mine, but the lives of my children.
So many people prayed so hard for them, and I know that God heard those prayers, and He was there, guiding the surgeons hands every step of the way.
I've been thinking lately, and I have to say, I think that CHD parents are amongst the strongest people around. Only, I don't feel strong. Not at all. I know that most of them are leaning heavily on Christ. It's only by the grace of God that we have gotten through what we have.
People tell me all the time that they don't know how we do what we do. The reality is, we have no choice. These children are our precious gifts from God, and He has a plan for them. What are we to do? Deny that gift? I think not.
I am so thankful to know a kind and loving God, who wants nothing but the best for our family. He is so wise! He knows the perfect kids for us. He knows exactly what we can handle (and what we can't). Isn't it wonderful to know that there is someone out there in charge? That we aren't just walking around by chance. That whatever happens, there is a plan. It might not be our plan, but we are at peace with the knowledge that there is a plan. And His plan is far better than ours could ever be.
And just as He guides us day to day, I know He guides the surgeons hands when they are operating on our tiny little babies.
Thank you, Jesus, for all you do for us. We are so unworthy of your care, and yet, you give it without a second thought. You, my Lord, are mighty and wonderful. I cannot wait for the day when we are all together, worshipping you all day long, in Your presence.

Having a Rough Time Tonight

My heart is heavy tonight.
On facebook, there have been so many posts about babies losing their battles with CHD. Or babies in the hospital dealing with surgeries and infections.
It is just killing me. The pain these families who have lost their little ones, I cannot imagine.
I feel so blessed to have my babies here with me, alive and well.
I just wish there was something I could do to make CHD go away, and the pain these families are going through.
Big heavy sigh.

ER last week

ER the show. Not us in the ER. Thank goodness. Because there was a point, when Em had a temp of 105, that I thought we would end up at the ER.
But the show, ER. You know, the one that is going to end this week. So very sad!
Anyway, last Thursday's episode was so great.
It basically focused on kids who had heart disease, and who had had open heart surgery. It was all about a camp for kids with CHD. Camp del Corazon. The camp really exists, but it is in California, NOT Chicago. But that is neither here nor there.
The point is, it was awesome. They talked about Tetrology of Fallot and the surgeries that go along with that. About Hypoplastic Righy Heart Syndrome and surgeries that go with HLHS. And one other that I can't remember right now. One girl even had a defibrilator implanted. At the end, Morris told a girl a bedtime story about a blood cell that was blue, but desperately wanted to be red.
I was in tears the whole time. It was soo good to see CHD getting media coverage.
I was also in tears because the Chief of the ER was adopting a baby. Oh man, my heart is yearning for a baby. Matt too. So I figure I'll tell you all now so that if God decides to bless us with another baby, it won't surprise you!
Anyway, kudos to ER for doing this!

CHD Awareness Week

This has been CHD Awareness week, tomorrow is CHD Awareness day.
I'm reposting the information I posted last year.

~~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.

How to look good Naked

Lifetime has a show called How to Look Good Naked. I have never watched this show, but was alerted by the CHD community that last night's episode would be about a girl named Heather.
Heather had a complex chd and had a very hard time getting past her scars.
Ya'll I sat there with tears streaming down my face the entire show. It was so good.
Kudos to Lifetime for even getting the words Congenital Heart Defect out there. I believe people can live their entire lives and never hear that term. And yet, it's the number one birth defect. Go figure.
I desperately hope that boys view their scars differently. Although, in some ways I think it may be harder for them. After all, girls wear swimsuits that cover the midline scar nicely.
The other day, we were looking through scrapbooks. Now, Zachy asks me why his face was purple. At five, he doesn't get that his heart was broken. That makes no sense to him. He will also ask why he has scars. Again, he doesn't grasp that there is a machine in his body telling his heart to beat!
I just hope that he doesn't deal with self esteem issues because of his scars. I hope he knows always that he is a hero.