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.

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:

Jenn
Danielle
Sherry
Katrina
Lyndie

Glorious Day

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.

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.

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.

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.