Monday, February 5, 2018

Medical Update

We heard back from the Mayo Clinic on their opinion of whether or not I should have a pneumonectomy.  As I suspected,  they believe that the risks of removing my lung outweigh the benefits, so we will not be doing that as long as I remain stable.  I've been out of the hospital a month now with no further bleeding.  If I bleed again, removing my lung will most likely be the solution, but as of right now I am good.

The bleeding was largely due to the fact that I had been sick and coughing very forcefully for over a month prior to the bleeding.  All of that pressure on my vessels and lungs due to the vigorous coughing, I believe (and the doctor agrees) caused the vessels to bleed.  So the main concern right now is to prevent illness; specifically, bronchitis or pneumonia.  

I have started slowly back at work and have cut back on hours.  Seeing as I work in childcare and am surrounded by germs, it is risky.  But I am taking extra precautions as to not get sick, and if I do get sick I will take sufficient time off to recover, so that it does not develop into something serious.  

I'm just trying to go back to normal, without having too much anxiety about my health.  I have appreciated all the prayers.

Thursday, January 18, 2018

"I'm So Sorry, But I'm Probably Going to Shit on This Table" (and other things you don't want to say at 33 yrs old)

My last post was intense, and the entire situation is intense. 

My go-to for dealing with intense situations is humor, which is why I believe that God orchestrated that night in such a way that it would guarantee comedy for me.

My Jesus loves me.

He knows I have to turn my heart aches into comedy in order to deal with them. 

He did not fail me.

Everything I wrote in my last post was accurate.  I simply omitted certain parts of that night.  Parts that I will now share with you in hopes that you will appreciate the humor, as I am now able to do.

In the words of the great Usher Raymond "These are my confessions.  If I'm gonna tell it, then I gotta tell it all..."

Yes, it's true, before I coughed up blood that night I had a pretty low-key evening.  I did light house work and I ate homemade soup.

Sounds lovely, right?

What I failed to mention is that earlier that day, my coworker, Alison Langston - yes, I'm calling you out because this story wouldn't exist without you -  brought me a box of  Flaming Hot Cheetos mac n cheese bites to work, because she knows that I love flaming hot Cheetos, and I've never tried these snacks. 

In case you're unfamiliar with these, they are exactly how they sound; macaroni and cheese bites that are covered in flaming hot Cheetos, and fried.



I ate 8 of these as an "appetizer" with my soup.



Another important fact to know about me is that I'm lactose intolerant, and I have an incredibly sensitive stomach.


 Alison knows this.  But I told her that it would be okay for me to eat them that night, because I had no plans to go anywhere (ha!), and Jacob was going to be gone most of the night helping his dad move, so my thinking was that if it did upset my stomach I would be alone in the comfort of my own home, with access to my own bathroom.  

About 20 minutes after I ate them my stomach started acting up.  I had to use the bathroom immediately.  Of course.

Okay, now bear with me with this next part....

For some reason, I happened to notice that my poop looked weird.  

So weird, in fact, that I felt I should examine it...but with what??  How do you examine your own poop?

I grabbed a plastic fork from the kitchen.

I have never, ever, NEVER examined my poop before, but for some reason this night of all the nights in my 33 years of life, I chose to do so.

Remember in the last post when I said that I laid in bed and was googling something on my phone right before I started coughing up blood?

The truth is that I was googling images of weird poop to compare it with my own. 

THERE. I SAID IT.

Now here is where the comedy comes into this disgusting story.

When I checked into the ER, the nurse and my doctor asked me what I was doing that night - leading up to coughing up blood. *hangs face in shame*  I preceded to tell them about my poop; describing it in detail, and shamefully admitting that I dissected it and sifted through it with a plastic fork.

I also admitted this poop story to every cardiologist, intern, nurse, doctor, etc...who came in to speak with me.  I thought that maybe there was some correlation between my strange dookie and my coughing up blood. 

I was wrong.

You know when you're telling someone a story that you think is relevant and interesting, and midway through you see that slight shift in their pupils, and you realize in that moment that they have no interest whatsoever in what you are telling them?  (you actually may have this look in your eyes right now)

That's exactly what happened.

 Midway through telling the 7th person my detailed description of my bodily excrement I realized that my poop had NOTHING to do with my coughing up blood, and I was just humiliating myself and making everyone incredibly uncomfortable.


I didn't think that I could embarrass myself any more that night, but God had other plans. 

Of course.

My stomach was still feeling gross, and I had the sensation that I will need to use the bathroom again very soon.  The doctor told me that they were going to immediately take me into the cath lab.  He also told me that I would be awake during the procedure. 

I was fine with being awake - mostly because I'm a control freak, and felt more comfortable being conscious so I could watch exactly what they were doing.  I did not realize, however, how long the procedure would take.

I attempted to use the bathroom right before we went in, but I couldn't.  

When the nurse took me into the room to put on my gown for the procedure I confessed to her the words I had been thinking but dreaded to say aloud.

"I'm so sorry, but I'm probably going to shit on the table during the procedure.  I had diarrhea earlier and I'm probably going to have it again"

Luckily, I had met this nurse 2 years prior at a barbeque, and we are Facebook friends, so I felt a little bit more comfortable confessing this to her rather than the doctor.  But, as we all know, being Facebook friends with someone that you met once 2 years ago does not make you actual friends, so this confession was still humiliating.

She was very sweet and responded right away with "That's okay. We'll just put extra padding under you.  Don't worry, we've seen it all!"

I appreciated her kindness, and her attempt at trying to make me less embarrassed by claiming they've "seen it all"

But I doubt she has ever seen a 33 yr old woman diarrhea on herself in the children's hospital cath lab.

Yes, that's another thing. I was in a children's hospital.  

The procedure lasted until 2:30 a.m. and  I had to shit the entire time I was laying there. 

So, on top of dealing with the fear of massive bleeding, possible lung removal, death, etc...I was also trying to get my mind off of the fact that I had to poop oh, so badly.

During the procedure they went in through an artery right next to my private area.  As we all know from basic anatomy, the groin region is in very close proximity to the butt hole.  The doctors hands were right there next to my crotch.  So close to my butt. 

The whole time I just kept praying that I wouldn't shit on his hands.

I farted probably 75 times, and was so thankful that they are required to wear those doctor's masks. 

In the end, I did not end up shitting on the table.  As I said before, Jesus loves me.

He gave me just enough comedy to temporarily take my mind off of death, and give me a good laugh, without fully destroying my dignity.

After the procedure, the nurse said to me "You must be so tired.  I saw you squeezing your eyes tight a few times trying to sleep"

I wanted to tell her "No, m'am. I was squeezing my eyes as tight as I was squeezing my butt cheeks, trying to stop myself from shitting on this table"

But I just responded, "Yes, I'm very tired"

It wasn't a complete lie.
















Thursday, January 11, 2018

Naked Trees





Most of my family and closest friends know my medical history.  If you would like details (because it is way too much for me to summarize) please read my previous post from 2 years ago, titled Psalm 73:26

Without getting into too much detail, I was born with heart disease, had 3 open heart surgeries in my first year of life, and pacemaker placed when I was 8 years old.

It is very common for children and adults with congenital heart disease to develop pulmonary collaterals.  Pulmonary collaterals are arteries that develop within the body to "help" bring blood to poorly functioning lungs.  In the majority of cases, this does not help.  The body believes it is doing a good thing, but these arteries are not necessary and can cause a lot of trouble.  The blood pressure in these extra arteries is usually higher and there's a chance they can bleed.

That's exactly what happened in 2007 when I was pregnant.  They coiled the arteries which were bleeding  (coiling is exactly what it sounds like - they take a wire and literally coil/wrap the wire over and over the artery until it stops blood flow), basically cutting off as much blood supply as they were able to.

Unfortunately, that was not the end of my trouble, because there are many, many collaterals within my lungs and it is near impossible to coil them all. They would have removed the entire left lung if my anatomy was normal, but because of excessive scar tissue and other factors, I was told that attempting to remove it was much more risky than leaving it, even though leaving it in meant that it was at risk to bleed again.

So, since 2007, I've lived my life knowing that there was a possibility of bleeding any day, but remaining hopeful that it would not happen.  All procedures to check on these vessels are too invasive, so the only way to know if they are bleeding is if I start coughing up blood again.

I've lived a normal life for 11 years, and for the most part I have not been consumed with the fear of what could happen.  But I'd be lying if I said that I wasn't reminded every now and then.

Every time I cough forcefully there's this tiny fear in the back of mind that says
"This is it.  It's going to happen again"

And this may seem silly, but in the winter I am reminded every time I look out my window or drive down the road.

Every barren, naked tree I pass is a visual reminder of my anatomy.

After the cardio catheterization 2 years ago, my cardiologist showed me images.  Don't get me wrong,  I loved being able to see these images and understand my condition better.  The inner workings of our lungs/veins looks eerily similar to naked branches of a tree.  And he also explained it using the terms "branches"

"See, this artery comes down like this and then branches off into more vessels"

My lungs have so many pulmonary collaterals and my internal "wiring" is so jacked up that it's just a hot mess of branches going every which way.

So, naturally, when I'm sitting at my kitchen table, drinking a cup of coffee, watching the barren trees outside my window, I can't help but be reminded of what's going on internally within me.









Fast forward to January 3, 2018

I had been sick for over a month with a horrible cough.  2 days prior to Januarry 3rd my cough had finally stopped, and I was incredibly relieved. 

The night of January 3rd, I did some light cleaning, ate dinner and then laid in bed at about 8:30 and began googling a random question on my phone.  Out of no where, I had a coughing fit.  As I was coughing I could feel and taste blood gurgling in my throat.  I ran to the bathroom and spit out the mouthful of blood.

Then I calmly called my cardiologist and informed him that I just coughed up blood and would have someone drive me to the hospital.

I called Jacob, he got home in less than 10 minutes, and drove me.

They immediately took me to the cath lab.  They were in my arteries until 2:30 am and never found the source of bleeding.  That's great news!  No active bleeding.  As great as that is, part of me wishes they would have found the source of bleeding and could have coiled it.

The position that puts me in now, is that we are just assuming that it was from my left lung.
And because they are assuming it is that lung (in truth, it most likely is the source of bleeding, but I hate not being certain of things), my doctor believes that I'm at risk for that lung to bleed again at any time.

He believes I should have that lung removed.

I'm hesitant to jump on that wagon, because I had many doctors tell me 10 years ago how risky that procedure would be.

So, here are my current choices:

A.  Get my lung removed, which is risky.

B.  Or...I can choose to not get the surgery (which is also risky) 
That would mean I would be walking around like a ticking time bomb, hoping that I have no further bleeding.  And if I did have further bleeding, then my only option will be A.

Neither choice is appealing.  And the weight of these thoughts and decisions is so heavy.

I am choosing to not choose at the moment.  We are waiting to hear back from the Mayo Clinic on their opinion, and I have a follow up appointment next Tuesday with my cardiologist.

I have faith that I will know the right decision to make, and that God will guide and protect me through either choice. 

I am simply in waiting right now; waiting on the Mayo Clinic; waiting on my body to possibly do something crazy; waiting on God to give me peace about a decision.

All  prayers, positive energy, encouraging words, and kind thoughts that have been given have been so appreciated.  Please keep them coming until we get this all figured out.









Saturday, August 22, 2015

For Such A Time As This



As a Christian, and as an adoptive mother, I have a very strong opinion on abortion, and with all of the recent Planned Parenthood videos being released I think now is the best time to talk about this subject. Please, please, hear me out, because this has been weighing so heavily on my heart for such a long time. And now that there's a chance that abortion laws and funding may change, maybe now people will finally act.


There are over 1 million abortions performed per year in the United States.

If there is Planned Parenthood defunding and new abortion laws, the number of abortions will decrease (yay!)  And, inevitably, the number of babies born each year will increase (yay! right...?) There will be many more infants up for adoption (yay?) , and even more children will enter the foster care system, as unfit mothers try their damn hardest to raise a child in unhealthy environments.

  Oh, wait, did we not think of that...?


Currently there are 397, 122 children living in foster care, without permanent families, in the United States. 101, 666 of these children are adoptable (meaning the parental rights were either terminated by the court, or relinquished by their parents)


Do you know what happens to the children who remain in foster homes and are never adopted? They 'age out of the system', which means that when they turn 18 they are completely on their own.
 Each year more than 20,000 children age out of foster care. 2 out of 3 of these children become homeless, or imprisoned.

I'm not saying that I support abortion. I'm also not saying that I don't. 

 Here is what I am saying: regardless of where you stand on the issue, there is another bigger issue on our hands- and it is only going to get bigger if these laws and defunding actually go through, which is what so many Christians are praying and fighting for.

We demand that 1 million more babies be born, yet we are not caring for the ones who are already here. If we can't even step up and care for the thousands of children up for adoption, how could we possibly care for hundreds of thousands more that will inevitably be added if abortions decrease?

And how can we condemn a woman who looks at the circumstances around her and comes to the heartbreaking conclusion that she simply cannot support a child at this time in her life, and chooses to abort, yet we sit here, knowing that there are literally thousands of children who desperately need a home (right here! already alive!)

And we also know that we are called by God to care for orphans ('Pure and undefiled religion is this: to care for the orphans and widows in their suffering..." James 1:27) and yet we don't condemn ourselves for not acting on this?

We are doing exactly what that woman is doing; looking at our circumstances and deciding that we simply aren't ready, not financially secure enough, or whatever the excuse may be.

Those against abortion label the women who choose abortion as being incredibly selfish.
 But who is more selfish: a woman who chooses (based on her current circumstances) to not have a child...or a Christian, who is called to care for orphans, but also chooses (based on their current circumstances) to not care for a child?

How about, instead of focusing on what she is doing wrong, we take a look at ourselves.

If you would do anything to save the millions of unborn babies, then  please also  do something about the babies who are already born...and abandoned, and in front of you.  If you were unaware of the number of orphans and foster children in the United States, now you know.  Once you are aware of an injustice, it then becomes your responsibility to act, and to make others aware so that they may act.

If you are going to be passionate about abortion, then you must be equally, if not more, passionate about adoption. There should never be a conversation about abortion without an even lengthier one about adoption.





If there is any way that you can adopt or foster at this time, please step up.You are desperately needed.  We have a tendency to sit back and pray for the orphans, and pray for others to step up, but God asks us to not only pray but to also act.

 "What does it profit, if someone says he has faith but does not have works?  If a brother or sister is naked and destitute of daily food and one of you says to them, 'Depart in peace, be warmed and filled' but you do not give them the things which are needed for the body, what does it profit? Thus also faith by itself, if it does not have works, is dead" (James 2:14-17)


"For if you remain silent at this time, relief and deliverance will arise from another place...but perhaps you were brought to this kingdom for such a time as this" (Esther 4:14)

And if you truly cannot, but are still passionate about abortion/adoption, and want to do something, then please share this information with others.

Or.. support a family who is fostering or adopting (babysit for them, donate to them, bring them dinner)


***Share this information with your pastors; ask to have an adoption education night at your church, so that those who have a heart for adoption can be provided with resources and information, and also so that they will know they have the support from their church. Why is this not already happening in every church?!?


NOW is the time to step up.



 

 

                  If God has instilled in you a desire to adopt, and you still hesitate, why?


"I don't think I could financially support a/another child"


Did you know that adoption through the foster care system in many states costs nothing? NOTHING. If there is fee, it is small, and can be written off on your taxes.  Travel expenses can also be reimbursed. And there is a thing called "adoption assistance' which is a monthly payment given by the state to help with expenses until the children are 18. Call your local Department of Human Services and attend the information class to see what the costs would actually be in your state before dismissing the idea.

If you are looking at private adoption fees, you can do many fundraisers. You could also get your church involved and ask for donations. Don't be ashamed to ask for help when it's a worthy cause; we are talking about children's lives.


"I would really like to, but 40 hrs of classes, plus the length of time to complete a home study is just too time-consuming...how would i find the time?"


Really? When God puts a fire in your soul and commands you to care for a child, do you think this is an acceptable response? WWJD, eh?

How long did it take Noah to build the ark?  They predict it was over 100 years.  Not sure if that's true, but the point is that when God commands something of us, the length of time it may require to complete the task is irrelevant.  We make time for what really matters, and if it is a passion of yours then this excuse is silly.

40 hours out of your life in order to give a lifetime of love and hope to a child is too much for you? Come on...

I'm not trying to be insensitive, honestly. I understand first hand that there are real fears and concerns people have when trying to decide to adopt or foster. I had the same thoughts, and my husband had immense anxiety as well.

But when we look back on those fears, we can see how minuscule and silly they were compared to the big picture.



I'm going to end this with my story of having to face my own excuses:

A few months before officially deciding to start the adoption process I was standing in line at the grocery store when I saw a woman with a young boy (barely 2 yrs old) and he was in the grocery cart acting a fool; yelling, not buckled in, half hanging out. She was yelling at him and slapped him (hard) repeatedly, and I kept glancing over, my blood boiling, about to say something to her.

All of a sudden he fell out of the cart and hit the floor, and i felt my heart drop into my stomach. He was crying and bleeding and she was screaming at him, and by this time the store manager had gone over to them, and I heard whispers that he had also called the cops. I could feel my heart pounding and i had this insane thought that I should stay and wait, and offer to care for him. Which is ridiculous, because that's not the way it works.

If the state did decide to remove him from the home, he would have to go to a family member first, and then if a family member is not available he would go into emergency foster care. But I'll never forget what God spoke to me in that moment.

Call it God, the universe, my soul, whatever your faith...the point is that I heard these words.

(my internal dialogue)

Me: I will take him. I can care for him

God: Why?

Me: Because he needs a home, and i can provide that. He needs love, and I can love him.

God: But why him?

Me: Because his mother is clearly abusive and neglectful. He needs me.

God: There are thousands of children in abusive and neglectful homes. Why him?

Me: Because he's right here. I can see him.

And that's when it hit me. I had been wanting to adopt for years, and had discussed it with my husband many times. Yet we hesitated and hesitated, even when I knew that the majority of the children waiting for adoption came from abusive and/or neglectful homes.

 How sad it is that it took having to actually see a child being neglected in front of my eyes, before I felt called to action.

More than likely you will never actually see children being beaten or neglected in front of you, but it is happening. You do not see these children, but they are here. And they are then tossed into the system, where they just wait.

Open your eyes and SEE these children.

They are not in orphanages; they are in foster homes, and the longer we wait to act the longer they wait.




Here are some resources:

ccainstitute.org (congressional coalition on adoption institute)

childrensrights.org

childwelfare.gov

davethomasfoundation.org (yes, the founder of Wendy's created a foundation to help children in foster care find forever homes)

adoptuskids.org (Click on the state you are in and get specific facts and steps for adopting in your state. Some states even show pictures/info of their adoptable children)



We live at a time where information is right at our fingertips, so please Google any questions you have and you are sure to find forums, blogs, websites to answer any of your questions.

Also, pick up the phone and call your local office to attend an introductory meeting on fostering/adopting in your state.

Because of the current uproar involving Planned Parenthood here in the United States, my focus of this post has been on domestic adoptions.  For the record, though, I believe that all adoption, whether domestic or international, is beautiful.

Do you see that we have the power to end the world's orphan crisis, if only we chose to stand up and fight for it as strongly as we stand against abortion?





 

Monday, February 23, 2015

Psalms 73:26 My flesh and my heart may fail; but you are the strength of my heart and my portion forever



I am scheduled to meet a new pulmonologist tomorrow, so I've been going over my medical history in preparation for the appointment.  Most people know of the health complications with my pregnancy, that I have a pacemaker, and that I had surgeries as an infant. But I've recently realized that most of my family and even closest friends do not know the full story.

I like to make jokes that I'm a "miracle baby".  I also jokingly blame my health problems for anything I am unable to do  (i.e. I cannot swim, nor whistle, nor flip a coin- all because of my poorly functioning heart)  I will vaguely mention things like "I was born with heart disease" or "I have bad lungs", but never expand on it, simply because it's too long and complicated to explain.  I don't want to bore anyone with the details.

 The truth, though, is that the full story is pretty incredible.  I am slightly ashamed that I've had this testimony and never shared it before.  And, regardless of your beliefs, it's still really interesting from a medical stand point.  So here it is....

I am not a medical professional, but tried my hardest to make sure all information was correct.  Please excuse any mistakes.  I used information gathered from my medical records, The Annals of Thoracic Surgery, and the book "Running The Midnight Marathon" by Craig Brian Larson (at the time of my heart surgeries, my parents' pastor came to visit and pray with them at the hospital through every surgery.  Years later he wrote a book on faith and perseverance, and used my story as one of the examples)

Excerpts from Running the Midnight Marathon:

"On July 26th 1984 Terri gave birth to their second child, a girl, whom they named Rebekah.  The delivery had gone beautifully, and Rebekah appeared to be in perfect condition.  As the weeks passed she continued to appear healthy, except for some discoloration in her skin, thought to be jaundice.  At her 6 week check-up, however, the doctor, noticing a slight blue tint to her lips, became immediately alarmed, and ordered that she be taken to the hospital.

The terrifying diagnosis:  Rebekah was in heart failure.  She had only days to live.  'Her heart' said the cardiologist, 'is a mess'  The four pulmonary veins that pipe clean, oxygenated blood from the lungs to the heart were detached, dangling behind her heart.  There were two holes in her heart allowing clean and dirty blood to mix.  Also, instead of left and right ventricular outlets, she had two right outlets, and no left.  More revealing than the surgical report was the cardiologist's grim face.

Open-heart surgery was scheduled.  The doctors planned to do just enough to keep her alive: attach those four dangling pulmonary veins.  Her other defects would have to wait until her body was
stronger.

Even doctors know their limitations.  At the beginning of the crisis, as Vince and Terri conferred with the surgeons, Vince asked point-blank what Rebekah's chances were.  The doctor pointed to the ceiling, looked up, and said, 'It's not in my hands'

Vince recalls, 'He said that he had only seen or read about 10 cases like Rebekah's in the last 10 years.  I asked how many had survived.  He wouldn't even answer'


For those who like technical terms and details (as I do) here are the clinical terms of my defects and explanation:


1. total anomalous pulmonary venous return(TAPVR- also called total anomalous pulmonary connection): all four pulmonary veins are malpositioned. Normally, your pulmonary veins take blood from the lungs back to the heart through the left atrium. In TAPVR the pulmonary veins connect to the right atrium, hepatic portal vein, superior vena cava, or some other vein.

The point being that they are not connected correctly to the heart, therefore, not bringing oxygenated blood back to the heart properly.

But here is what made my condition different than most cases they see:
Usually in TAPVR  the 4 pulmonary veins are connected to some vein (not to where they are normally supposed to be attached, but still some sort of connection...somewhere)

All 4 of my pulmonary veins coming from the lungs were not attached to anything. They were just hanging, draining blood down towards my diaphragm. So there was no oxygenated blood coming back to my heart. 

This is why my diagnosis is called TAPVD: total anomalous pulmonary venous drainage (not return/connection)


2. atrial septal defect : this is a type of "hole in the heart" While babies are in the womb there is an opening between the upper chambers of the heart, but it should close before birth. Atrial septal defect is actually beneficial to TAPVR, because the hole allows small amounts of blood to kind of leak into the heart; this hole is what keeps an infant with TAPVR alive at birth.


3. double outlet right ventricle:    Normally the aorta connects to the left ventricle, and the pulmonary artery is connected to the right ventricle.

With Double Outlet Right Ventricle both pulmonary artery and aorta flow from the right ventricle.
No arteries were connected to the left ventricle (the chamber that normally pumps blood back to the body)


The doctors were unable to explain how I had survived for 6 weeks with all pulmonary veins detached from my heart, and malpositioned arteries.  The atrial septal defect allows a small amount of blood to leak into the heart, but certainly not enough to sustain my entire body for 6 weeks.


"Rebekah's frail body was deathly weak when I went to visit her prior to her first surgery.  After donning a sterile yellow gown and scrubbing my hands with a plastic brush and brown, disinfectant soap, I pressed with Vince into the thick tension of the intensive care unit of Children's Memorial Hospital in Chicago.

I greeted Terri, whose face was taut with strain, and then turned my attention to Rebekah.  She lay unconscious, her eyes moist and swollen.  She was wrapped, not in pink baby blankets, but in technology.  A clear plastic, saucer-like bed, a welter of wires and tubes networked her tiny body, and around the bed stood monitors and IVs and shelves filled with medical supplies.  Two feet overhead a light radiated heat.  On the screen, I observed the slow fluttering record of her heartbeat, now in such jeopardy. 

Then I noticed something with a human touch.  Taped above Rebekah's head was a hand written note.

"My flesh and my heart may fail," it said, "but God is the strength of my heart and my portion forever Psalm 73:26" 

"While I was in bed last night," Terri told me "I prayed, 'God you have to tell me if she's going to live, or if she will die. You have to tell me.  I just can't stand the not knowing' Then I opened the Bible and read that scripture.  My eyes fell right to it.  So I wrote it out, ran to the ICU and taped it to her bed"

I survived the 1st surgery.

The next two weeks lasted forever. "The recovery involved constant monitoring," says Vince.  "She could have died at any second.  My wife lived at her bedside.  Rebekah couldn't eat for three days.  She couldn't drink for three days.  We watched tears pour down her face.  After a day's worth of crying, all we saw were tears, and her mouth open but no sound came out; her voice was gone.  So it was horrible.  It was just horrible."

Nevertheless, she made it. And after 2 weeks they brought Rebekah home.


Unfortunately, when I was 7 months old a cardio catheterization revealed pulmonary stenosis.  The repaired pulmonary veins were closing, and the damage to my lungs was severe.  The doctors suspected I may have interstitial lung disease.  If that were the case, it would be irreversible.

They would try to reopen her pulmonary veins, and if she was not too weak, get a lung biopsy.  They braced Vince and Terri for nothing but negative:  even if they could reopen the veins, there's a chance they could close up again; more critical, if the lung biopsy showed lung disease, death was inevitable.
 
...The surgery was scheduled for the next day.  Vince and Terri went home to pack a suitcase for the hospital.  While there, Terri opened her scripture calendar to the next day's date:
 
February 22, 1985: "A new heart also will I give you, and a new spirit I will put within you; I will take away the stony heart out of your flesh, and I will give you a new heart of flesh" Ezekiel 36:26
 
Terri says, "I'm not into fortune cookies, or superstitions, but when I turned the calendar to that date, I just stood there crying.  I yelled to Vince 'You have to see this.  You have to see this' The next day I taped that to her bed when she went into surgery.  I knew God was speaking to me"
 
 
The surgery was successful, and they were able to collect a sample from the lungs to biopsy.  They had to wait a week for the results. 
 
During this waiting period Terri says "While the lung biopsy was in route, you see her struggle; you see them put a chest tube in her, and all of a sudden your mind starts flip flopping.  But even in moments of disappointment, there was a peace that would come over me.  I didn't flip out or say "God, you lied to me"  Instead, my heart would say "It's going to be okay.  God's just going to do it in a different way"
 
Terri's peace was justified.  The biopsy report finally returned-negative.  Eight month old, brown-eyed Rebekah, still weighing only 8 pounds, had bounded over another huge hurdle.
 
Vince and Terri sat down with the heart surgeon after the 2nd operation for a briefing on Rebekah's future. "We'll have to wait several months and see what happens to the pulmonary veins.  If they begin to close again, there's no sense in attempting the final surgery"
 
Over the following weeks, Terri often wrestled with the feeling that time was running out.  She would walk into the nursery, see her baby sleeping, and think of the painful procedure ahead and the risks.  Frequently she knelt by the crib and after crying for a while would pray "Touch her heart and let everyone see your power"
 
Months passed, and finally the doctors scheduled Rebekah's 4th cardio cath.  The procedure was supposed to take 2 hours.  After the 3rd hour passed without report, tension mounted. For 3 hours they had been trying to insert the testing instrument into her veins; first in one leg, then the other, then her arm - all without success.  They had to call in another cardiologist.
 
The next day they tried again, and were finally able to get through.
 
With few words and no emotion, the cardiologist informed them that the veins were open, and they were clear to proceed with the 3rd surgery.  He knew, all too well, that what lay ahead was nothing to get excited about.
 
 
Finally it was the night before surgery.  Before putting Rebekah to bed, Terri anxiously danced with her in their hospital room, quoting scriptures, and singing praises. 
 
The nurses wheeled 11 month old Rebekah - weighing only 10 pounds, but now with blondish brown curly hair - down to the second-floor operating room with her parents by her side.  They had taped a new scripture to her bed:
"I will not die but live, and I will proclaim what the Lord has done" Psalm 118:17
 
 
 
 Aside from the fact that I am alive today, and survived 3 open heart surgeries, the thing that strikes me as a  "miracle" is that I was alive for 6 weeks with no immediate sign of heart disease.  Yes, sometimes infants can go months before discovery of a hole, or a common heart defect.  But it is pretty miraculous that my body somehow sustained itself for 6 full weeks, without any medical intervention, with all 4 pulmonary veins detached and just draining, and the great arteries misplaced.

I absolutely believe God sustained me those first 6 weeks of life.  I absolutely believe in miracles.

.
Recently my father sent me an article from the "The Annals Of Thoracic Surgery:  Surgical Management of Infants with Complex Cardiac Anomalies Associated with Reduced Pulmonary Blood Flow and Total Anomalous Pulmonary Venous Drainage" dated April 1986

I am patient #2 in the study.  Within the last 10 yrs the hospital had seen only 8 patients with a similar combination of cardiac anomalies.  4 patients died during surgery, 3 were alive and well, and 1 was alive but doing poorly.  I was one of the 3 that were living and doing well at 18 months old.

Interesting fact, the other 2 patients who were alive and doing well had their first surgery within the 1st week of birth; one at 4 days old, the other at 7 days old. 

Another interesting thing was that all 4 children who died had shunts put in prior to attempted correction of TAPVD.  There were two points that this article makes:

1. Time was crucial.  The sooner the TAPVD was repaired the greater the survival rate
2. Shunts should be placed after the repair of TAPVD, as fatality rate was higher when shunts were placed first. 

I was first seen at one hospital and then transferred to Children's Memorial hospital.   The doctors at the previous hospital could not see my pulmonary veins clearly through the cardio cathetizeration, and therefore did not know I had TAPVD.  Their plan was to place a shunt.  If it wasn't for the incredible doctors at Children's Memorial Hospital in Chicago, who did a second cardio cath with pulmonary angiography upon my arrival, which showed my pulmonary veins draining down towards the diaphragm, I would have had an unnecessary pulmonary shunt placed, and an even greater chance of death.

My father is very intelligent, rational and analytical.  He was the one who asked the doctors every possible question, and he memorized every detail of my conditions.  He researched to find the top heart surgeon in Chicago.  He was the one who requested that I be transferred to Children's Memorial, and have Dr. Michel Albawi perform my surgeries.  When he was told that they would not accept me as a patient, because of the type of insurance we had, he went up to the hospital and confronted the director of the hospital.  They made an exception.  If it wasn't for his persistence, I would have never been transferred, and I would have had a shunt placed at the first hospital. 

I am eternally grateful to my parents; my father's intelligence and persistence, and my mother's wisdom, prayers and unyielding faith.

I am eternally grateful to my surgeon, Dr. Michel Albawi, and every doctor and nurse that cared for me.

I've had issues with my health since those surgeries.  I've had a pacemaker since 8 yrs old, and I've had 3 replacements.  I also developed aorto-pulmonary collaterals during my first pacemaker surgery, which required coil embolization.  I formed those collaterals again during my pregnancy.  It was life threatening and required an 8 hour coiling procedure.  I have come close to death multiple times, but each time God has sustained me.  I may have complications in my future, and that is okay.

Because when I read a report of 8 infants (simply known as Patient 1, Patient 2, Patient 3, etc...) and then I scroll across to the final column of the report which states "Outcome", and read next to each infant the words "died" or "alive", it puts everything into perspective.

 Patient 2: Alive. I've lived 30 yrs more than predicted.  30 years more than Patient 3, 4, 7, and 8.  And for that I am forever grateful.

Even if I were to die tomorrow, it would not be a tragedy.  Every day on this earth is an incredible blessing that I may have never known. 



Friday, March 15, 2013

Adoption Update

The committee date was moved to March 12 (Dan's birthday).  It usually takes them 3 hours to decide. Technically, they have 24 hours to make the final decision, although it is rare that they take that long.

Well, I was driving with my mother from Chicago to Memphis on the 12th, so Dan was the one to get the call from our adoption worker.  They thought all families presented at committee had great strengths, and decided they needed to take the full 24 hours to decide.  It was a bit disappointing, because I was anticipating the decision all day and just wanted an answer.  At the same time, it was great to know that they were not making a rash decision, and reviewed each family thoroughly.  And I was also happy to hear that the other families were good, because if we were not chosen I wanted the boys to go to a great family.

We found out March 13th around 1 pm that we had been the selected family. Ah!!

It is insanely exciting...and a little scary.  I'm excited that they thought highly enough of our family to entrust 2 boys to us.  I'm excited that I potentially have 2 sons.  I'm excited to see Adalee and the boys grow up together.  There is a lot to be excited about.  Scary, only because nothing is final until it's legally final, and that always gives me a bit of anxiety. 

The boys are 3 and 5 years old (just turned 5 this month)  I still do not want to publicly post their names until after the transition into our home.

Here are a few questions you may have that I have gotten from others:

1.  Have we met them yet?  No.  We have never met them.  We have seen 2 pictures and that is all.  It is a very weird process, and, yes, I wish we could have met them before committee, but that is not how the process goes.

2.  When do they come home?  They have been in their current foster home for 1 yr and are attached to the foster parents.  It will be a slow transition.  We are hoping to meet them the week I get home, but they will not move in with us for maybe a month or more after the initial visit.

3.  How does Dan feel about it all?  He is very excited.  He has already started planning how he will insulate the garage and turn it into a playroom for the kids. He's cute :)  He has already started collecting "boy" toys, and pirate outfits.  He's anxious to meet them.

4.  Are you sure you can handle 2 boys?  This is a weird question to me.  We obviously would not be at the point we are at, if we didn't think we could "handle 2 boys".  Our adoption worker, after hours of interviews and stacks of paperwork, would not have approved us for 2 boys if she didn't think we were capable.  The committee would not have chosen our family if they felt we could not properly care for 2 boys.  It's a silly question to ask us at this point...and quite insulting, too. 

5.  How much does Adalee know about the adoption?  She knows we are adopting.  For the past year at bedtime we have been praying for whoever God has chosen for our family.  Some days she is very excited and talks about having siblings, and other days she says she does NOT want to be a sister.  She's a normal 5 year old, and it's going to be a transition for her, just as much as it will be for the boys.  If I was growing a child inside of me, she would have the same anxiety about becoming a sister.  We are doing our best to help her understand what is happening.

Luckily, we haven't been asked too many weird questions.  Mostly everyone we know is supportive, and we really, really appreciate that.  Thank you for all the prayers.


Sunday, February 24, 2013

Adoption Committee

My initial intent was to start a separate blog, solely devoted to our adoption process, but that has not happened...obviously.  Instead, I rarely write about the adoption, and the posts I do write involving the subject are dispersed among other posts about fitness, family and ridiculousness.  Sorry.

Here is what has happened and what is currently going on:

Dec. 22nd - Home study was complete and we became certified
January 10- We were matched with 2 boys (brothers, 3 and 4 yrs old)

Once you are "matched" you get the children's bios, stating why they came into foster care, all family history that is known, education/special needs, etc.  After you read their bios, you tell the case worker if you are still interested in the children.  If you are, you then begin the process of collecting further info (talking to their foster parents, requesting school tests, sometimes even speaking to their teachers, doctor's reports...etc.) 

So, this has been going on since January.  Once you collect all information available, you then decide:
 A.  No longer interested/do not believe it is a good match for your family  or
 B.  Still interested and wanting to "go to committee" for the children

The phrase "going to committee" is a bit misleading, because Dan and I are not actually present at the committee meeting.  Our adoption worker is the one actually going and representing our family.  The children's case worker is at committee and has narrowed it down to the families that she feels would be best for the children.  Out of the many many home studies she received, she chose us as one of the best matches, which is very encouraging, since we were worried my health concerns would make it hard to get a match.  At committee they present our family to a panel of children advocates/social workers and they decide if we are the best match for the boys.

 There can, however, be up to 3 families total at the committee.  We do not know if there are 2 other families involved, we just know it is a possibility.  The reason I have refrained from getting too excited and spilling all the info is because there is still a chance we may not be chosen.  If we are chosen, we would begin visitations, and then they would move into our home.

After a lot of prayer, phone conversations with the foster mother, and conversations with each other, Dan and I decided we do want to "go to committee".  We just kept waiting for God to lead us in a certain direction; to show us any red flags that would make it clear it wasn't the best choice, or to open our hearts and minds to see that it very well could be a great match.  He did the latter, so we will continue on this journey and trust that if we are meant to be their parents we will be chosen, and if we are not, they will be placed with the right family. 

 I don't think it would be right for me to give any more information on the boys until we know if we are chosen, but I would love prayers and positive thoughts.   Committee should take place on March 14th and we will find out that day.