Wednesday, December 28, 2011

The Future

As the parent of a child with a broken heart, I often think of what the future holds for Eli. I try not to dwell on it because the world of medicine evolves each and every day. They are constantly discovering new things and coming up with new procedures. Things that were not possible 10 years ago, today are possible. But I still think about things like will Eli ever be able to live on his own? Will he be able to have a job? How will his surgeries get paid for? And then I stop and try to focus on today and what needs to be done. It just so happens yesterday morning before heading off for an appointment at Children's I was reading a post I had responded to previously. This wonderful heart mom, whose son is grown, was giving us her experiences. So as I drove to Children's yesterday I bawled ALL the way there in thought about her response. Knowing that God was using her and her son's life to reach me. And of course she had no idea. As I drove I thought about about this fact - no matter what as Eli grows he will be accountable to God. He will need to learn to love and trust the Savior and allow Him into his life to guide him. THE most important thing is just that. NOTHING more. It won't matter if he can tie his shoes, make his own breakfast, or pay a bill. Accepting Christ and living his life for Him will be it. As I drove I also thought about how I need to be helping him learn to trust and serve our loving Savior. And I thought about the things I need to change in my life. I thought about some of the excuses I've made/make for things and the things that get to me the most. Then today I woke up and a dear friend called to tell me she had a birthday present for me. So she brought it over. And it was a book that I KNOW God encouraged her to buy me. Normally she goes through a process before buying a book. But she just knew she was suppose to buy it so she didn't do any of the normal things she does. And God in His glory knew I would need that book to get over one of my excuses. Seriously He is amazing. And as I sit here and am excited to get started reading I am humbled that in all my sin and ugliness He still loves me and works on my heart. I just pray He helps me teach my son of His awesome love and mercy.

And I wanted to close with this. It is a two part video of a young man who passed on Christmas night. He lost his battle with congenital heart disease. I think he understood what was important.

Wednesday, November 30, 2011

Getting Behind

Yes I am way behind in blogging. I guess I should update a few things. We had an appointment with a new cardiologist at a new clinic on Monday. Both my husband and I liked him. He gave Eli the official diagnosis of Shone's Syndrome. I think it's hard to argue with the fact that the surgeon said at one point "His cardiac anatomy is consistent with Shone's Syndrome". He explained some things about blood pressure between the legs and arms that I didn't know about before and overall totally understood why Eli struggles so much in school and other areas. We really felt like we were heard. He also through out another term. Dysautonomia. I'm not sure that he diagnosed him with that or not. He just told us to not be surprised when we read that in the clinic notes. He is wanting to talk to their neurologists to get their imput and possibly to send us there first. He 100% thinks that some of Eli's issues are neurological. I think I need to sit on that for a while before asking any questions.

But really the being "behind" I'm talking about is delays in Eli's speech, development and overall learning. It's really quite obvious. He is in speech therapy (he has been for over a year now) and Developmental Preschool (his second year), where they also do speech. As I was sitting in therapy today it dawned on me that Eli doesn't use a ton of 3-4 or more syllable words. I mean he does use some, but not a lot. His therapist always gives us worksheets to do at home. And when we did his worksheets in preparation for today I realized what a struggle it was for him. I mentioned it to his therapist, but we try not to "visit" too much since Eli needs as much time as he can get. I held back in asking her about it fully. I'm not sure why. She really is wonderful and I could have but I tried to push it to the back of my mind. Then I came home and it came to the front of my mind like a smack in the face. I've tried pushing these thoughts to the back of my mind before. And then I look at Faith and realize that she will eventually pass him up. This makes it really hard to develope friends with people whose children are typical developing. They don't get this place I'm in. Some who are here can have a great attitude and go about life as if it's perfect. I'm not one of those people. It hurts so deep I cannot express with words the feelings it evokes. It really bothers me. People talk about all the things their kids are doing (and they have a right to brag) and Eli can't do some of the things children three years younger than him are doing. It really breaks my heart. It's hard for me to watch.

Parents of typical children don't really understand this place. They try to comfort me and say things to make it seem as though Eli will get better. Or things will get easier. This is why I love the few friends I do have. They don't try to get me to believe something I know will never be true. I am so thankful for that.

Anyway, I've been trying to just sit and be joyful in the things God has given me. They are perfect in His eyes and really that is all that matters. It's my flesh that's bothered. So I've been trying to ignore my flesh. Today was one of those days though that got to me. Where my flesh took hold and allowed me to be sad for all the struggles Eli will always face. I just felt I needed to let it out somewhere. So here it is.

Friday, September 9, 2011

It's Coming

The world of CHD (Congenital Heart Defect) families tend to become a close group of people. While our experiences may be different, we share a common bond among ourselves. And of course like other causes people have blogs. A few of these ladies I have followed for quite some time. They are encouraging, uplifting and tell it like it is when words fail me. Without knowing they have helped me overcome emotions and get on with the life that the our good Lord and Savior gave me. Three of these amazing ladies are fortunate enough to be giving away a CD. This is no ordinary CD though. This CD is by none other than Matt Hammitt of Sanctus Real. Matt's son Bowen was born with one of the most severe CHD's a person can be born with called Hypoplastic Left Heart Syndrome. I only learned of Matt's son earlier this year. His music has been a huge blessing to me and his newest CD is and will be no different. It is coming out next week. If you want the chance to win and hear a snippet of his amazing music go Here, Here, and/or Here.

Wednesday, August 3, 2011

5 Years

Five Years ago today God gave me a miracle as our lives were turned upside down. Our beautiful baby who seemed so healthy showed us his heart was broken. Eli went into cardiogenic shock (due to heart failure) and we nearly lost him. But God gave us a mircle. HE brought him back.

After his first surgery.

I was in such an ingnorance is bliss state when we first found out. I didn't know what a congenital heart defect really was. I didn't know it is THE most common birth defect, affecting 1 in every 100 babies. I thought they could just fix it like they fix a broken bone and we go home with no other issues. That was so far from the truth. Our lives are filled with doctors appointments, therapy, special education, and watching him for signs of cardiac emergencies. It's waiting for the shoe to drop and hear he will have to undergo another surgery. And with each surgery he endures knowing that he may not wake up. Or he may have to have a permanent pacemaker implanted. Or numerous other senarios.

It amazes me that when a woman is pregnant they push for all sorts of tests. All but ones that are MOST needed to detect the most common birth defect. Heart defects. In this day of modern medicine there is so much hope for these babies. Yet sadly some of these babies die UNNECESSARILY. There are life saving surgeries and procedures that can be preformed to save them, but they go home with an undected heart defect and pass away.

I am truly thankful for my amazing son. He fills our lives with such joy. Joy that is irreplaceable.


Tuesday, August 2, 2011

I Can Fix That

So yesterday was Eli's cardiology appointment. Somehow I dread them more and more every time. Not because I don't like his cardiologist, because he's actually an awesome doctor. Eli's heart is just very complicated. He has lots of issues. In fact, when people ask what his specific heart problem is, it's easier to say "Shone's Complex without the Mitral Ring". He's hasn't been diagnosed with it because his cardiologist is of the practice he has to have 100% of the symptoms to be diagnosed with it (not all are under this practice). And he actually has more issues than that. And I'm okay with that fact. It would change absolutely 100% NOTHING so it's okay. He is watched for all the same stuff, treatment is still pretty much the same and I get a mental break from having to accept that diagnosis. So we call him Shonesesk.

So on to the appointment.

When we first got called back the first person we saw was the same echo technician (I'm sure there's a different name for his title) who gave us bad news two years ago. He's a nice guy and VERY good at his job, but it still makes you nervous. (Dejavu is not always nice.) So he does the echo and we go wait for Dr. C.

I have to say most of the appointment was a blur because God helped me focus on the good and not the bad. Dr. C acknowledged that at some point in time we WILL hear the word SURGERY dun dun dun (evil music). So it's a matter of WHEN not if. So before every appointment we walk in having prepared ourselves (if that's even possible) for the fact that today might be THE day. Dr. C acknowledged our nerves being normal and understandable. Well yesterday was NOT the day to hear the evil word. PRAISE JESUS!!! For now his heart is stable. PRAISE JESUS!!! Eli has several things wrong, but it seems that changing one of his problems affects the other(s). So even though yes he needs things fixed they really NEED to wait until they are forced to deal with them. Because at some point Eli's body WILL determine what needs addressed the most. So stable is AWESOME!!! However, we also needed to address the subclavian steal syndrome (more we just needed things confirmed) and the other "episodes" he's having. The subclavian steal really cannot be completely fixed. And it's VERY dangerous to do something unless he's basically passing out from it. And none of us think the passing out he's doing is from that. We think it's something else. Eli's cardiologist is a "sudden death" doctor (those are words you do NOT want to really hear). He is an amazing man with skills that I am so grateful and thankful that God gave him and he uses. Basically what this means being a "sudden death" doctor is he deals with the hearts pacemaker system. So his specialty is dealing with arrythmia issues. It's what he does. And he in his gut as a doctor and knowing Eli so well believes what we are seeing is an arrythmia problem. (He is actually surprised Eli doesn't already have a permanent pacemaker from his other surgeries.)

We had an event monitor sent to us which we got Friday. The one they sent has wires that attach to Eli from the machine. The machine actually can work two ways. It can either use the wires placed on Eli and the device can be in his pocket when you press the button. OR You can hold the machine up to him and when you press the button it will take the reading properly as long as the machine is against his chest. Easier said than done on a wiggly child. The problem with the wireless one (besides the wiggle factor) is that if I have the machine and he's accross the playground then the chances of getting the machine on him and the button pressed in time decreases. So if you have the wires attached to him then anywhere he is the button can be pressed even if he's the one that does it (I don't trust him yet to do this). The problem is this.


See the rash? He's allergic to the glue. We already knew this before but most of the time we just deal with it and most of the time it's not so painful and itchy. That's after less than 72 hours of wearing the machine. Can you imagine what 27 more days would do? So unfortunately we changed the machine to the cordless version. He then talked about a type of monitor that is implanted. (Stef - I totally had dejavu when he talked about this and thought of you and your amazing heart warrior.) He also talked about a procedure you can do in the cath lab and manipulate the heart to go into arrythmia's. The problem is that this only works for fast arrythmia's. I don't believe all of Eli's are fast. I do believe some of them are, but I think some of them are slow. So unfortunately I don't think that is really a great option either. In the end of this conversation though, Dr. C sounded almost hopeful that if it has to be anything, arrythmia's would be the cause. Because? "I can fix that" says Dr. C. And I believe him that he can deal with them. It is the heart and this Eli so at some point this becomes not true. But compaired to the subclavian steal he can fix it. The subclavian steal cannot be fixed. He mentioned a procedure called an ablation. I'm still a bit puzzled by it. My hubby related it to me in terms of being an electrician and the signal getting caught up before it gets to where it needs to go. So the next plug doesn't have power. It eventually does get the power back, but the ablation kind of fixes this short. At least for the time being.

The other thing pressing on my mind is how Eli is when he is physically active. His therapist, the school teachers, and well most people that truely know him and watch him see how he struggles when he plays like a typically active 5 year old should. He gets short of breath, grabs his chest and gets cold, clammy, and sweaty all at the same time. Not to a point of needing to call 911, but enough where he is forced to sit down or go do a sitting down activity. Normally Eli does this on his own so it's so subtle that most people don't even know it's happened. I was finally able to ask about activity level. This can be tricky. Because at some point you don't want him using his heart as an excuse to limit himself. But at the same time you don't want him having a heart attack either. So I told Dr. C. what we do. If we go somewhere like the zoo or the mall or anywhere he is going to need to walk a great distance we make sure we have a stroller he can ride in. If we are at home I let him jump and run and play with his brothers and sister and friends. If he gets to a point where he is not making himself rest and it's obvious (he's screaming in pain, can't breath, etc.) then we step in. We hardly ever have to step in because he forces himself to slow down but this has happened. So while I don't eliminate specific things from his activity, I do watch him and make sure he has an option to sit if he needs to. And he said that was an awesome plan. He said although his pressures are stable while his is laying down for the echo it does not shock him that his pressures go to much higher rate when he's active and that in turn makes him have lots of symptoms. And some might think that he would need to rest more or be restricted more. The problem then becomes me having a lazy teenager with a heart problem who uses it as an excuse rather than having a valid reason. Think of the boy who cried wolf when I ask him to walk 100 feet to go get the mail. It's behavior that can backfire if you encourage it. The ultimate would be to do a stress test. This would help us GREATLY. However, since he's 5 years old he can't really do it. He won't be able to follow all the speed up, slow down, do this, do that orders. So for now we go on Eli's symptoms and resting pressures via the echo.

Honestly I'm still trying to process the appointment. There are no words to describe how happy I am he is stable. That doesn't mean his heart doesn't have problems or that he's okay. It just means he's not in a place to need surgery yet. For that fact I am grateful.

One thing I have always said to my husband and I've mentioned it to Dr. C and I'm sure other people is that I truely believe Eli will have a permanent pacemaker at some point as a minor. I believed this before Eli's 2009 surgery. Before any of the doctors realized how many other heart problems he actually has including his risk for arrythmias. I honestly without a doubt believe this is why God gave us Dr. C. And as scary as these arrythmia issues and the thought of them are, I am glad God is easing me into them a bit slower than coming out of surgery in complete heart block suddenly.

Tuesday, July 26, 2011

Another Event Monitor

I wasn't going to actually post anything on my actual blog (I did on caringbridge), but something is just eating at me to just post it. Eli is getting another event monitor to record his heart activity at the push of a button at home, when he has the "episodes" we have been seeing. We fear he may be having arrythmia problems, but we can't say for sure since they need to catch them. He's at high risk for them with his heart defects. I'm just afraid we won't see them so I keep saying what's the point. However, on Facebook some wonderful parents of other heart kiddos and adult congenital heart defect survivors have encouraged me to request one. So I did. At first the nurse said they would probably just wait until his appointment on Monday. Afterall it is just six days away. However, shortly after I got off the phone with her, she phoned back saying they were going to send one out and we would talk more about what we are seeing on Monday. So anyway, if you could send some prayers our way we all would GREATLY appreciate it. (And that is an understatement.)

Monday, May 23, 2011

How Are You?

That is a really loaded question and one I get often. Sometimes I'm not sure if people ask because they really care or are being polite. I have my friends that ask and truly care, both because they want to know and they want to know specifically how to pray. I know the people who are asking to be polite are trying to make conversation and don't realize what they are getting into by asking that simple question. I don't blame them. I think we all do it or have done it not realizing someone is going through difficult times. But if you were to ask me that question right now I will tell you I'm NOT good. Fear has taken over and taken me to a place where I cannot function. I don't want to do anything. I don't want to go anywhere. And I don't really want to be social. I can feel myself becoming more and more isolated. People want to know what is going on and it's hard to explain sometimes. Eli has what I call "episodes". They are periods where he gets a LOT of symptoms in a short amount of time. They come on very quickly, without any warning and can last for a day (meaning 7-8 hours) or less than one hour. He typically has 1-3 "episodes" every week. We know what causes 95% of them. We never know if the next episode is going to end or end by taking his life.

I was talking to my husband about when Eli was a baby. Before we knew about his heart problem. Before they did the chest x-ray and realized what the symptoms I was describing were from. Before the doctors actually saw the symptoms come on. Then you could feel the panic of everyone around us. We weren't alone. The doctors had joined us. But we are now wondering when will they join us in having the same panic now? I don't blame the doctors. When Eli was a baby they hooked him up to the heart monitor and the pulse oximeter but it showed normal. He still had a heart problem, but the tests didn't show anything. This is VERY typical Eli. It takes specific probing before you find the answer. Usually it's a doozy of an answer. I honestly feel sorry for the doctors because attempting to find the answers is very tricky because Eli from a medical standpoint is VERY confusing and difficult to figure out. It's not just take him to the doctors and have them look here and do this test or that. So as I sit and wait for whatever is next I am slowly
quickly loosing my mind, patience, temper at pretty much any given opportunity. And strangers are just as much a target. I know that is bad. It's not showing Jesus' love. I am weak. I'm trying to lean on Jesus' and I'm failing once again. Thankfully HE loves me inspite of my weakness and failures.

Usually when someone asks this question I want to tell them the whole story. And I'm an open book so I let go. I sense sometimes the person who asked the original question is sorry they did. I can't say I blame them. Right now I'm trying to avoid the question because I'm NOT good. I cry a lot. Sometimes all day. All I can think is God's going to take my baby. I will NOT be okay. Eli would be healed and safe in Jesus' arms. I would be angry, heartbroken, bitter and I would not have Eli.

Tuesday, April 26, 2011

It Has A Name

Subclavian Steal Syndrome (SSS). That's what the wrongway blood flow through Eli's left vertebral artery is called. We 100% know he has this. And we 100% know it's causing symptoms. He gets dizzy and has headaches. Especially when he is active. The problem is it can also cause you to pass out. Well Eli passes out. However, we (meaning his pediatrician, cardiologist, my husband and I) do not know if these passing out epidsodes are because of the SSS or something completely different (they think it could be narcolepsy but that needs a COMPLETELY different post that I MIGHT someday get around to posting). The passing out from SSS typically is very short. Meaning usually they will pass out and wake up quickly. Except Eli doesn't wake up quickly. In fact he can be very difficult to wake up. The issues with the SSS? It's a very rare complication from his orginal subclavian flap repair surgery for his coarctation of the aorta. It's rare, meaning it's rare in children. And most children who have it are asymptomatic (they don't have symptoms). So for a child to have SSS and symptoms is as rare as it gets. If he was an adult and it was caused from the typical reason, which is a blocked artery from plaque build-up, they would remove the plaque from his artery and/or put a stent in the artery. But his is caused because they took out part of his artery so he doesn't have anything there to fix. Therefore they can't do the typical method to fix it. Honestly I don't know that they've ever really seen any kids at Children's Hospital with this. So they are just as confused as we are. As much as I need prayer, my son's doctors need it that much more. They need prayer for wisdom to know what to do. There are some very scary things that can happen in a child who has this and undergoes additional heart surgery. Yes brain death is one of them. Well Eli has to have more heart surgery eventually. The ONLY thing I can do is rely on God to get us through.

The question I'm getting asked a lot is "should his activity be limited". Well I spoke with one of his doctors yesterday. She put it like this. If a person had a sprained ankle or broken leg you would limit activity for a bit for the affected part to heal. If a person has asthma you limit the things that they do to prevent attacks. Since he is symptomatic, as with any other condition, we would want to prevent his symptoms from surfacing. But we also need to keep in mind he is only almost 5 years old and we can't prevent everything. We can only do our best. So this only leaves me with questions and decisions doctors can't answer or decide for me. Since I know physical activity causes his symptoms to surface and we are going to the zoo for my daughters birthday and both of my little boys birthdays, do I need a separate stroller for Eli? He's almost 5 and he doesn't have something that makes it obvious he needs a wheel chair or special stroller. So what does a parent do? On one hand you don't want to baby him and on the other hand you don't want him having symptoms. Back when my daughter was born I questioned whether we should get a sit-and-stand stroller but since I'm a cheapskate I couldn't justify the cost. I am borrowing a friends for one of our trips. But what about the future? Does it justify the cost? And of course there is a space issue with fitting it in my vehicle. I need God to drive a mini-van into my driveway with my name on it and a stroller in the back for Eli. Because short of that I have a feeling I'm not going to be able to decide.

Friday, April 8, 2011

About Me (Tag Your It)

Thank you Robin :)

Here are a few of my favorite things in this blog hop.....

Food: Spaghetti and the more veggies it had the better.
Color: Lime Green (It's my signature color.)
Animal: Elephants, but of course I love turtles (for Eli), frogs (for Dakota) and Ladybugs (for Faith)
Dessert: Cheesecake and I never get to eat it because no one in my house will eat it. I do not need to weigh 500 pounds.
Artist: I have several friends who I would call artists. They take amazing pictures, create amazing crafts, and can decorate anything to look beautiful from a pile of garbage.
Pair of shoes: Definitely sandles. But I do love high heels if I'm not with my kids.
Outfit: When my kids are not with me - a skirt, heals, and a nice blouse. When my kids are with me. It must be comfy, roomy, and allow me to leap tall buildings in a single bound.
Skinny Jeans: Surprisingly yes. I never thought I would but they fit great and are comfy.
Brand: I'm actually not brand loyal. As long as it's cute, comfy, and cheap a good price we are good.
Perfume: Imari Seduction by Avon. I must wear perfume every day or I don't feel completely put together.
Accessory: Chunky necklaces. I love them. I just wish I owned more.
City: Maui, Hawaii. It's where hubby and I got married. It has a very special meaning to me. I hope someday we can go back.
Hobby: I actually have just started gardening. I do love it, but I hate the rain and cold so unfortunately I haven't gotten to go outside and play in a while. I also have a couple of internet sites I visit often. Oh and watching movies. I just wish I could watch them while the children were awake.
Beauty Product: That would definitely be eyebrow pencil (since I have no eyebrows practically) and lip stick or lip gloss.
Holiday: Christmas, but I specifically like Christmas Eve. We don't have a real meal. We snack all night, open a present (a family game to play) and watch movies. An awesome day to spend just being together as a family.
Snack:Do I really just have to pick one? LOL I love all sorts of snacks. Popcorn, chips and dip, veggies, and I really could go on and on and on and on..............(you get the point)
Movie: Well my favorite movie changes all the time, but right now it's "P.S. I Love You" and "Letter's To God". If you watch "Letter's To God" you MUST watch it with a box of kleenix. Here's a trailer just to show you.

Song: I have a lot. Christian music is healing for me. Yes I'm usually bawling while singing my heart out, but God uses it to speak to me. So I love Healing Begins by Tenth Avenue North, Glorious Day by Casting Crowns, Come Thou Fount by Chris Rice, I Will Follow by Chris Tomlin (I just love hearing Eli sing this), and Lead Me by Sanctus Real just to name a few.
Guilty Pleasure: Ice cream (usually anything with peanut butter), the imitation Samoa's (the girl scout cookie) by Keebler (I don't actually know what they are called), and shopping where I actually can spend money on myself. Yes I'm a clothes horse.

So tag your it:


Friday, March 25, 2011

Back To Neurology

After talking with Eli's cardiologist about his blue neck, he ordered an ultrasound of the vessels. We had that at the end of the same week his cardiology appointment was. They were trying to coordinate an appointment we had already scheduled for that same day. I thought great why drive down there twice right? The first appointment time they tried to give me was only 30 minutes before and I thought there is no way. You need to leave time for it taking longer than expected, time to walk from point A to point B, check in time, etc. So then they gave me 1 1/2 hours before the other appointment and I thought surely that should be enough time. Well what was suppose to take 40-50 minutes took over 2 hours. And the location of the ultrasound they were doing typically are only performed 5 times a year total, if that. So the ultrasound tech they gave me had never actually performed the test. So another tech ended up coming in and taking over. Totally not the other techs fault. The last image she went to capture showed something VERY wrong. The picture she was trying to get, she had to place the wand on the back of Eli's neck. The vessels are suppose to be the same color. Eli's were NOT. One was CLEARLY blue and one was CLEARLY red. This means one of the vessels is carrying the blood the wrong way. So there were other images she was trying to get to give us an answer but it wasn't presenting itself for her. We went to the other appointment and I was fine. But as always the longer I have to think the more panic, reality, and not good thoughts set in. So I called the cardiologist to let him know how things went and that if he could he should look at the results. He called back and we talked. He gave me some explainations that totally made sense (you have to know Eli's not so normal anatomy to understand), but also said he wanted to talk to Neurology. Of course this was at 5pm on a Friday and Neurology was gone. And of course it takes time for doctors to talk, email, etc. because of how busy they are. I've been fairly successful at not worrying thinking about the test and what it means. That is until yesterday. The cardiologist and the head of the neurology department concluded that Eli needs to be seen at the very least for a consult. They can't rule out some of his symptoms as being caused by this wrong way blood flow.

Now of course I know nothing about how the brain or blood flow works. Talk about the heart and well I completely understand that. The more time my husband and I have to think and contemplate this information or the lack of information the more we don't really understand how it can be good that the blood is flowing the wrong direction. Of course with all this information (or the lack thereof) you have to take into account Eli's abnormal anatomy.

So there you have it. Back to neurology we go.

Thursday, March 17, 2011

Happiness Is.......

Watching my little "superman" "fly" up the driveway after he gets off the bus. (Notice his arms out in back of him?)


A musical performance. (Make sure your sound is turned up. He really gets going on the chorus.)

The first signs of spring.


Monday, March 7, 2011

That's Not What I Was Hoping

Having a child who has multiple serious heart defects that WILL get worse and it's just a matter of when, tends to make me think in different terms than most. Before I take Eli to the cardiologist I start thinking "I hope it's not....." or "if it's going to be anything let it be......". When I say things like this people think it's me just being pessimistic. Nobody wants to have things get worse. Everybody wants things to get better. But when the fact is you eventually will get the dreaded news of "surgery" you start preparing yourself.

So shortly after Christmas we began seeing changes in Eli that could be his heart. However, we couldn't jump to conclusions and assume it was his heart. Afterall he's going to have normal kid things happen too. I was just watching him as I always do to see if they go away. I was doing rather well until my husband noticed Eli's neck turning blue. It was only his neck, it wasn't all the time, he had no other emergent symptoms and it only seemed to happen when he exerted lots of energy. And as always we had other people see it just to make sure we weren't imagining things. Of course this magnified my already normal anxiety before our cardiology appointment. So of course I started in with my "I hope it's not....." and "if it's going to be anything let it be......". This appointment couldn't have come fast enough.

Well the cardiology appointment was today and as the title says it wasn't the news I was hoping. If it had to be anything naively I was hoping for his mitral valve or coarctation (we learned today we probably don't want the coarctation either). That's not what it was. It was the one thing that scares me to the core (before today that is). His subaortic stenosis (SAS) is back, it's growing and now his aortic valve is leaking. Thankfully it is growing at a much slower rate than it did before. It's not at a place we need to go back in and do surgery yet. But if it continues on its current path my prediction of the next surgery being between the age of 6 and 7 will be correct (he turns 6 is 1 year and 4 months). Out of all his problems I HATE this one the most. It causes NO symptoms. If it changes it's mind on how fast it wants to develop and developes quicker, Eli could drop while simply running around being a kid. Not because the cardiologist isn't watching this SAS, but because that is just the way Eli's body works. It likes to throw you for a loop. The other reason this scares me is that out of all the times we've come so close to loosing Eli the only time he was in surgery was when they were fixing this problem. I really am having a hard time putting into words the fear in my mommy heart. Thankfully Jesus knows.

So all the symptoms we were seeing are not really heart related. I now have to question whether he is getting anemic again. Unfortunately heart issues and being anemic often go hand in hand and the symptoms of anemia actually are some of the same as heart problems including: fatigue, weakness, pale skin, chest pain, dizziness, coldness in your hands and feet, trouble breathing, fast heartbeat, and headache. It seems to be a never ending cycle.

As for the blue neck? Well we got three explanations. 1) Eli's aorta is formed like a steeple instead of a candy cane. His coarctation is where the carotid arteries and other vessels go to the brain (this is why surgery or cath procedures to fix it would be very bad). Because of the way the blood flows through his aorta and into these arteries and veins it can cause these to enlarge. This would make all his vessels much more visible. 2) When they do heart surgery there are certain tubes and wires that go down the veins and arteries in his neck. After you have had several surgeries these vessels can develop what is essentially scar tissue which could cause a blockage or kink. The fluid will then go from the main vessels into new smaller ones. 3) They have no idea but they will be watching it and adding it to the many other puzzle pieces that make up Eli. I don't have a preference which one of these it is. I just would like an answer instead of adding more pieces to an already difficult puzzle.

It typically takes me a few hours at least to process how the appointment went and right now I think I'm worse than I was before the appointment. I was okay at first. But now the more I think about it I realize the more I was hoping for something I was could at least see symptoms. Not something he could die while running around like a normal little boy.

Wednesday, February 23, 2011

Healing Begins

I must start this post by saying that this is NOT a vent about my husband or our relationship. I truly believe that the evidence of Christ in our lives is most profoundly seen by the circumstances we go through and the trials we face. It's in our stories that people most readily see His unending love.

I did this post last week in response to a blog event a fellow heart mommy hosted. In my post I admitted that the relationship with my husband had not brought us closer together through our dealing with Eli's heart defects. Another heart mommy read my post and was very thankful for my honesty because she too is struggling. She asked me to do a follow up post on how we have gotten to the place of beginning to heal. I think in order to see how we have gotten to this healing place you need to look back to where it began.

I will never forget that moment in the ER as they took my dying infant son from my arms and began to work on him to save his life. As they took him, I held my husband as he sobbed uncontrollably (and understandably) as he truly believed our son was going to die. That was the first moment God gave me the instinct to know that Eli was going to be okay. I couldn't tell you why or how I knew that. I just did. What I didn't know is that was to be the last time I truly saw my husband sob uncontrolably over our son until very recently. As we went through the process of Eli being transferred to the Children's Hospital more than an hour away, the eight days we were in the hospital, the surgery and the following week after we were released we coped together as a couple quite well I thought. Sharing thoughts, fears, feelings, etc. As we rushed (at more than 80 mph - I'm glad we didn't get pulled over) back to the Children's Hospital somehow our relationship began to change with that trip. Once we arrived at the hospital, they inserted the drain tubes to allow the fluid to escape from my son's chest cavity and we were taken to our room "on the floor". I had to go eat and make some phone calls. My husband and I made plans on where to meet. I went to go get food and wait for my husband to arrive at "the" meeting place. But he never showed up. I called his cell, waited and finally called the nurses on the floor and asked if they had seen him. They told me he was in my son's room. When I got back, I lost it. My husband started to shut down that day. He shut off his emotions, his feelings, and most importantly he shut off his communication with me. After we returned home from that seven week stay, the communication continued to break down. When I would want to talk about Eli, my husband would do this exhale of breath that would signal he didn't want to talk about it. So I stopped turning to him. Thankfully God put a WONDERFUL AMAZING person that is my BFF into my life. During the last two years I was able to turn to her with EVERYTHING about Eli. She listened, cried, talked, laughed, worried ...... right along with me. My husband continued to bury his feelings instead turning to cigarettes. If he was worried, scared, angry or anything else he smoked. We began spending less and less time just spending time together in our own home. We would each get on the computer or do anything but spend time together. Of course this lack of communication spread to other areas other than just Eli. It spread to our finances as well. My husband made some decisions without communicating to me what exactly was happening and what he was doing. It was these circumstances that brought our communication issues to the surface. Some might not think this has anything to do with our road with CHD's but it truly was our lack of communication that really had spread it's ugly arms. It was just in other areas. The other side to this is that my husband was trying to protect me. From everything. He didn't want to see me suffer. So it made communication all the more difficult. Of course I didn't see this at first. I was too angry about the financial issues. I wanted a divorce and told my husband so. My husband did not and was willing to do anything to fix it. Once the financial issues surfaced, communication had to follow. It had no choice. They were caused by not communicating. Our pastor told each of us to focus on ourselves and let God deal about the rest. So my husband was to focus on changing himself and turn to God and I was to focus on myself and turn to God. So we each did what we were advised. I was still angry, but we started reading our Bibles together. As we began reading our Bibles together communication slowly started to begin. At first we began to talk about just the money. I took control of our finances and I am better at communicating what is happening with them than my husband. But then the communication about Eli started to open up. I finally admitted to my husband that when I get testy and nitpicky about things that seem so trivial it's actually that I'm struggling to not obsessively worry about Eli. I had never been able to say that before. Then slowly my husband started to open up. And then he broke down and sobbed just as he had done in the ER that night that changed our lives forever. He admitted how scared he is. He admitted that if something happens to Eli and he is taken home to be with Jesus, I would not be the only one sporting a white coat. It has taken off from there. It is slow and gradual and whenever my husband does that annoyed exhale, I remind him that is how we got into our mess in the first place.

So if someone were to ask me the short answer to the question "how did you come to the place of beginning to heal"? I would tell them Jesus. He is the ONLY reason that I didn't leave. He is the ONLY reason we started to communicate. We both followed our pastor's advise. You focus on you and let God take care of the rest.

Thursday, February 17, 2011


I am not eloquent with words. They don't come easy. Instead my emotions speak when I cannot. This is why you'll see me crying and it could be I'm happy, sad, excited, angry, frustrated or just about any other emotion. When something happens my initial reaction is harsh emotionally. Most people can't take it. Those closest to me know that after the first 48 hours (in severe cases) I move on to forgiveness and allow the Holy Spirit to work. If another round of hurt comes up I will repeat my harsh emotional reaction. It then takes another 48 hours of allowing things to process until I sit back and allow Christ to work.

Some things have happened recently between me and my husband. There are only a few people that I told. My husband also confided in a few people. Because one of those people whom we trusted doesn't know me and that I will get over it, they felt it was their duty, instead of coming to me, to go elsewhere to talk about me. This person also does not know all the other things that are going on in our family. I don't talk about how I think Eli's heart is doing. Mainly because I want medical confirmation and don't want to jump to any conclusions. But also because again I'm not good with words. They don't know of the non-medical problems we are having with our children. They jumped to conclusions. My husband and I were FINALLY at a place after almost five years where we were turning to our fellow believers in Christ. We were opening up and my husband was actually seeking out growth. Now I feel like going back in my hole I was in. Not seeking people out. Feeling judged. All because people think they need to do the work of God. God IS in control and HE will get us through ALL our trials. Gossiping and murmuring is not needed. Prayer is.

Tuesday, February 15, 2011


Stephanie at When Life Hands You A Broken Heart is hosting a blog event about how CHD affects your relationships. Here is my story.

When you think of relationships, the first idea that pops into most peoples mind is their interactions with other people. For me the first thought is how I act/react to situations, circumstances and life with CHD's now compared to life BEFORE CHD's. Before CHD's I was the kind of mom that a cold didn't send me to the doctor, bumps and bruises happened, and if the kids weren't being rowdy then life must not be okay. Then along came Eli and his broken heart. The first thing I did after we found out in those early morning hours at Children's Hospital is ask "what did I do to cause this". Then there was the moment they were releasing him after his first heart surgery when he was 22 days old. I was NOT okay with them releasing us so early. After all it had only been 3 days. I knew in my mommy heart it was too early and I told them. Of course they didn't listen and I told them we WOULD be back and things would NOT be okay. I know they thought I was crazy but I didn't care. They sent us home and one week later we were back. And I was right. Things were not okay. He had developed a delayed chylothorax from the surgery and had over 8 ounces of fluid in his chest. His lungs were collapsed. They were amazed that he was still able to breath and doing as well as he was. They told us it was going to be a long stay and they were right. It was seven weeks one day (but who's counting). That was the longest period of my life. It was during those 7 weeks that I bonded so close to Eli that I know when things are going to happen before they happen. It is actually scary sometimes and I think I'm crazy. I have actually predicted when we would notice changes after his surgery in 2009 or somehow I knew when he had ear infections with NO symptoms. But of course being the mom I was before CHD's I don't like to over react. So I fight with myself. Being concerned is something we have to do as a parent. But being overly worried is not productive. So I constantly fight with myself to stay on the concerned side and away from worried. Of course I had never been able to put that into words until VERY recently. I finally admitted to my husband that those times where I tend to get snappy with him over something that before NEVER would have bothered me, is when I'm trying to distract myself and struggling. So I've become stronger at making doctors know my thoughts and when I disagree. I have come to trust my instincts. The instincts God has given me.

Of course this journey changes every relationship you have. While in the hospital for those 7 weeks the person who I thought was my BFF got mad at me because my husband asked someone else to watch our kids while he had to work (since his vacation ran out) and I backed up my husband instead of her. Never mind the fact that she never called except to yell at me for this. I actually was not upset about the lack of phone calls. But she no longer wanted to be my friend. About a year later I tried to reach out to her and she seemed to want to be friends again. So we seemed to pick up where we left off. Until I received the news that Eli needed surgery again in 2009. She basically said I was over reacting and I needed to get over it (my words not hers). I knew I had to end the friendship. Not because she said harsh things, but because I knew she wasn't going to be the type of friend I needed to endure this road that is CHD's. Luckily I have a BFF now who is ALWAYS there. No matter how little we are able to talk because life gets in the way, when something comes up she is there. Whether it's in prayer, thoughts, a phone call or an actual visit. I KNOW she is there and will support me to the end of the earth.

Of course family has been invaluable to me. While I was with my son in the hospital, my parents came up and stayed and helped my husband. I know he is forever grateful for what they did. And of course there is my Uncle Tim. He has come and stayed for the last two surgeries, and I know when the next one occurs and we need his help he will be there to spoil all my other kiddos with love while Eli and I are away. I love them and am grateful and will NEVER be able to tell them in enough words or actions what they mean to me.

And finally the relationship with my husband. In all the other blogs I read on this topic almost all have said how the relationships with their husbands have grown for the better. I can't exactly say that. I think we could be so much worse off, but I can't say we got closer either. It has been almost five years and we have just now started to come to terms with some things. My husband recently admitted how scared he has been and how he was terrified to bond fully with Eli. Don't get me wrong he so loves his son more than anyone could, but he stuffed all of his emotions. So when I would talk about Eli's heart he would tell me he would be okay and I just needed to relax. We basically accepted our rolls and that really is what has gotten us through. Now that we have begun to talk more it's gotten a bit easier. He knows when I'm snappy that in truth I'm very concerned fighting to stay away from worried. He's learning how to comfort me and help me let worry go on it's way. I am grateful for that. If I have to go through this with someone, I'm glad it's him.

So as I've grown in this life that is CHD, and I think back to that question "what I did to cause this", I realize it's not what I did to cause it but it's how strong God knows I am. This is a road that I now feel honored to travel because God knows I'm strong enough. I can be truely thankful HE has chosen me for this special journey.

Monday, February 14, 2011

I Failed

I failed at posting every day obviously. I tried, but things came up within our family and when things come up I tend to blog less instead of more. Bad me.

I did want to leave you with one last blog. Scarlet's story. Scarlet's picture is up at the top on the right side of the blog. Does she look like a child with a congenital heart problem?

Heart problems are not always obvious. So here are the facts.

*This year 40,000 babies will be born with a congenital heart defect.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

We did not know until Eli was two weeks old that he had congenital heart defects. I wish that I would have known before hand. I have since learned that there are VERY important questions you can ask during your "20 week" ultrasound. Sadly these things are not always checked. I know they were not checked with Eli.

1. Do you see 4 chambers?

2. Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.

3. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

5. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

I cannot stress the importance of these questions. If you are pregnant or know someone that is. Please take these questions with you and ask.

Thursday, February 10, 2011

So as I mentioned in yesterday's post they are making great strides in the field of CHD's. However, we still have stories such as Cora's. Cora's story comes so close to home for me. If you know Eli's story from birth you know that he nearly died in my arms four seperate times within the first two weeks of life. These stories should NOT exist. But the sad fact is they do. No child should die like this when the answer is so clear. Better CHD screening prenatally and in EVERY newborn. PERIOD!

Wednesday, February 9, 2011

Welcome To Adulthood

As a parent of a child with CHD's, the biggest worry we face is "will my child make it adulthood". Fortunately there are people like Lauren who are a testiment that it can be done and, the fact is, they ARE making it to adulthood. I'm so thankful for the advancements they have and are making with CHD's.

Tuesday, February 8, 2011

Half A Heart

It's hard to imagine a baby being born with only half a heart. A baby who doesn't have all four chambers. However, these kids exist. These kids and their families have a special place in my heart. Although Eli has all four chambers, his left side is smaller than it should be. However, we are lucky because it does work. Some kids like Owen were not so fortunate. Someday Owen will need a new heart. Soon they will be heading off to surgery to "patch" parts of his heart to buy more time. This is one of the many faces of CHD.

Monday, February 7, 2011

Congential Heart Defects (CHD) Awareness Week

Although I am not good about posting on my blog every single day, or every week for that matter, this week I hope to be different. As a blogger and the mother of a child with congenital heart defects, I of course want to do my part to spread awareness this week. But what? I'm not creative. Lots of other blogs will give you the facts? So what can I do? Well, I think you need to see the faces of these children. When someone says congenital heart defects I think most picture a child who is on oxgyen 24/7 or somehow you think you can "just tell" by looking at them. That is so far from the truth. Yes when things get bad as it often does for lots of kiddos with heart issues you might see them not keeping up, or turning blue, but for the most part you won't be able to tell. I will warn you now there are pictures below that WILL disturb some. But they are a reality for us. The scars are a reminder to hold my son close and be thankful for every moment I have with him here on earth.

Can you tell he has congenital heart defects?

This is after his fourth surgery at 2 1/2 years old.
CICU 2009


And this is after his fifth surgery at 3 1/2 years old.

The first blog I want to show you is When Life Hands You A Broken Heart
This week she is interviewing the parents of these children. If you think you will just "be able to tell", reading this may change your mind.

Thursday, February 3, 2011

Happy Birthday Brice AND Eli?

Screech (insert scratchy record noise here)

Some who read this may know Eli's birthday is NOT today. At least the day he turns another year older doesn't happen on this date. His real birthday is in July. Then why the title of this post? If you're a heart mom you know the answer. Two years ago today Eli was in the hospital recovering after open heart surgery. Two years ago our world was turned upside down. They took Eli in to surgery and he very nearly did not make it out alive. I still cry. God's love and mercy amaze me. I am forever grateful God chose to leave Eli with us. It's hard to put into words.

So today we remember how very fortunate we are. Today we are thankful for not being at the hospital waiting to hear if Eli made it through the operation okay.

So Happy Birthday to both my husband and Eli.