Friday, May 30, 2008

Every Silver Lining Has It's Cloud

I know yesterday I was pretty upbeat... but the realization that one day my child will have to have her chest cracked open is finally sinking in. Yesterday after sending the email out, then posting the email on my blog I came down of the good news high. We will see the pediatric cardiologist again in 2 years, and man... it's going to be a long 2.

Statistically, Emma will have to have surgery one day, and it doesn't matter how long from now, sooner or later she will have it... I feel like there is a heavy thing hanging over us, and knowing that this thing is there just waiting... I'm scared for my child.

Though I have resolved to make sure that we need to stop messing around with the health of our family (John with high triglycerides and high blood pressure, and Anna bordering on being considered obese earlier according to her BMI last summer - which we resolved with a lot of cutting back and watchfulness), but now seriously we are making or breaking Emma. What she learns now in eating habits and exercise is crucial. If we teach her healthy things hopefully it will follow her into her teens and adulthood, making recovery for her much easier.

What is troubling me is that her valve flaps are already showing signs of thickening, which isn't good. If they become very thick and stiff, they will not close properly. Which could mean that surgery could be sooner rather than later in our future.

If you could, please pray for me to see the silver lining, and enjoy her health right now. Not only enjoy it, but continue to nurture and support it so she can go as long as possible without having to have surgery. I'm trying to focus on that right now. Tears , and more tears, and lots of prayer.

I am having trouble with faith. I find it amazing that with Rachel, I had no doubts that she would be healed, and this makes me feel really bad as a mom. *tears again* Why is that? How could I possibly have more faith for a cousin than my own child, who I carried for nine months? Who is a part of my very flesh and heart? How could something so little have a broken heart, when she was so very vital in healing mine after losing a baby?

Sheesh, I think we know where Anna and Emma get their drama genes from *LOL*

Anyway, prayers for me too would be great because my faith is wavering, and I know it is because of fear.

1 John 4:17-19

In this is love perfected with us, that we may have confidence for the day of judgment, because as he is so are we in this world. There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and he who fears is not perfected in love.


Thursday, May 29, 2008

Matters of the heart

Hey y'all,

Just wanted to update you on Emma's heart situation. We went to her appointment yesterday.

If you remember, Emma complained of chest pain April 22nd, and we tool her to the ER. They ordered an chest xray and said they thought it was muscular pain or growing pains, but wanted us to see a pediatrician just in case (we normally just see a family doc). The pediatrician we saw a week later said that- after me telling her that Emma had been known to have a murmur on occasion, only to have it gone on other visits- that she did hear a murmur but didn't think it was anything to lose sleep over. She listened to Em's heart for a very long time, but she said she would like to have it checked out by a pediatric cardiologist just to be sure, and so that we would have a baseline diagnosis/evidence of normalcy for the future things like other doctor visits and checkups, plus sports in the future. I also told her (just as I had the ER doc) that Emma had periods where her lips wold be a little dusky/blue, as well as her nail beds. I would have her move around a bit and she would "pink up" after a few short minutes, always without complaints about the whole thing. Emma was always asymptomatic. The doctor said that this was actually fairly normal for kids Emma's age and to not worry about it.

Surprisingly, no EKGs were done either visit, but the pediatrician said that she would rather have the specialist do it.

So... yesterday, Em had an EKG at the ped. cardiologists office, which was normal. The doc then came in to see her and said that she did hear a murmur and the spot she heard it in seemed to be one of the lower chambers. Her thoughts were that it was most likely a small hole in one of the lower chambers (called a ventricle). She thought that the blue lips/nail beds was normal for her age, that the murmur was slight leading her to believe that the hole was very small because her EKG was normal... but she wanted to do an ultrasound of the heart to check out the size of the hole.

The BAD news:
She checked the heart valves and came across a birth defect that turns out to be pretty common.Normally the aortic valve, when closed usually looks like a Mercedes sign and it has 3 flaps that open and close when the heart pumps blood from from the lower chambers. This is called a tricuspid.

Emma's aortic valve is what is called a Bicuspid because 2 of the flaps are stuck together, and because they are stuck, her valve looks more like a foot ball shape when the flaps are open, instead of a perfect round shape that a tricuspid has when open. She also noted that the valve flaps are a bit thicker than they should be.

The GOOD news is that she couldn't find the hole in the lower chambers of the heart, she she believes it is a pin sized hole. Also, even though she has this heart defect, she said the heart is beating normally, not working too hard to compensate. Also she said there was no regurgitation of blood back into the lower chamber of the heart, meaning , as she put it " the heart isn't back washing blood back into the lower section". VERY good news. Also, the valve is closing completely right now. She believes that Emma will have a normal childhood, the heart is beating perfectly. The problem will be if and when her body grows but the aortic valve doesn't, therefore causing the Bicuspid (two flapped) valve to remain partially open, causing back flow of blood and making the heart work twice as hard. If this happens - most likely near or into adulthood- she will need surgery to fix it.

There are no restrictions to her activity, thank goodness. She is allowed to run and play like any normal kid. ;)

She wants to see Emma back in 2 years for a full work up, and wants both of the kids to have their cholesterol checked since Johns side (maternal and paternal) all pretty much have high cholesterol.

Through all of this Emma was very watchful yet grouchy, but she didn't cry once. She did complain when the doc was doing the ultrasound of her heart. A few times she cracked us up by saying "OW!" when the doc wasn't even touching her. I said that she was probably complaining because she's pretty bony, Emma is a peanut. The doc was trying to distract Emma by asking her questions and encouraging her to look at the screen, but Emma- in TRUE 'vich fashion (John's side of the family)- ignored her out of sheer stubbornness, which we also thought was hilarious. She would only answer the questions if I re-asked them, refusing eye contact while watching Nemo.

Anywho, we are praying that God keeps her heart working normal, the hole heals up... I might even get the courage up to ask for complete healing... Because we have had evidence recently that God is an awesome God, and he hears our prayers, haven't we (my cousin Rachel)? *big grin*

Thanks for listening, and your prayers too.


Tuesday, May 13, 2008

What a gem ;) OR Happy Mother's Day to me

Last Friday Anna went to a children's museum some 45 minutes away from, for a field trip with her first grade class. As always (I had trouble sleeping the night before, and) I had a talk with her about general safety and what was acceptable and unacceptable.

Did I happen to mention that I am neurotic? It couldn't possibly have anything to do with the nightmare I had the night before about Anna coming home from the museum and telling us that a stranger had harmed her.

Anyway... this is the talk we always have when she will be away from us, or when we go anywhere that is a good distance away from home, especially if there will be a lot of people.

I can't help but be this way because I know what dangers lurk around every corner. For me , as a child, they lurked in the very corners of my own home and I guess this makes me a little over protective. I know that when she gets a bit older I will have to trust that I have taught her as best as I could, and send her on her way with a few "gentle" reminders. ;)

Just as she walked out of the door for school, I said a prayer for her and her class. I asked that God keep them all safe from... "them", the sick and twisted people that live just to hurt children. I prayed that they be surrounded by so many angels that they would be invisible to "them".

The day went by very slowly for me, but Anna did eventually come home. I asked her happily, after giving her a hug, how the day went. We sat down on the couch together to snuggle.

"Well, I didn't... It wasn't very much...'" she sputtered as she teared up. "I-," She began as she turned away from me in embarrassment.

"Anna, it's ok... calm down. You don't have to be embarrassed, you can tell me anything. Remember how many times I have told you the embarrassing things that have happened to me?" Anna nodded, slowly turning towards me as I put my arm around her. "You can always talk to mommy and daddy, no matter how embarrassing or upsetting it may be. Even if you are in big trouble, please always talk to us about it. OK?"

She nodded again. "I didn't have a very good time at the museum," she said as she choked back tears," I was home sick."

I breathed a sigh of relief. "It's OK, I think most kids are a bit nervous on their first field trip that far away from home. You didn't have fun at all?"

She settled in and relaxed against me,"No, not until we went outside to play on the museum play ground."

"That's OK," I said as I patted her," At least you had a little fun."

"Well, I had fun buying my mood ring too," she smiled up at me.

We sat for awhile , snuggling while watching the Food Network. I had a sudden realization that usually in our world being sensitive was viewed as having a weakness. How many times have we heard ourselves or someone else say to their child " Stop being such a baby"? "Stop being a drama queen" or "grow up"? I can't count how many times my own mother made me feel like I was less than human for crying or being sad over something she had said or done to me.

"You know Anna... feeling this way isn't a bad thing. I mean being sensitive or the fact that you were feeling home sick. It just means that you feel things deeply." I thought about all of the thousands of times she seemed to have overreacted, or played the "drama queen" over the span of her 7 years and smiled. There was no middle ground with this girl for the most part. She experienced things at the highest highs and the lowest lows, and I smiled again to myself.

I gave her another squeeze, "You are one of the strongest people I have ever met. You're smart, beautiful, funny... you're like a diamond. You know how a diamond has little cuts in it? Those are called facets. Each one of your facets- or the little things about you, including being sensitive- make up the whole you... a beautiful little diamond."

She looked up at me and lit up with such a brilliance that words fail to adequately describe it.

Being sensitive and feeling things deeply isn't anymore flawed than a diamond that is pink or canary yellow. Those diamonds are actually valued more for their rarity and color.

I choose to see my girl for the rare and priceless gem that she is.

Wednesday, May 07, 2008

Update on little Emma Rose

Well, we had a follow up appointment for Emma today, our little peanut. Just so you know how much of a peanut... she's3 feet tall and 27 pounds fully clothed. ;)

Anyway, our new pediatrician said that she did hear a slight systolic heart murmur, classified as a stage 1. She said if I hadn't mentioned that Emma was diagnosed with a heart murmur (at birth, which they recanted later at a peds appointment because they couldn't find it- then last year when she had pneumonia they heard it again, only to not be able to find it during a follow up after antibiotics), she might not have caught it.

So... Emma has an appointment to see a pediatric cardiologist out of town on May 28th. They will do an EKG there and will look at her chest xray from her ER visit... and based on those the doctor will decide whether or not she needs to have an echocardiogram.

The doc did say that overall, she isn't too worried about it, and that I shouldn't lose sleep over it and that it's good to just have it checked out and documented now because later in life other doctors will notice it and will want all of these tests done anyway (if we don't look into it).

I want it looked at anyway, whether or not it is considered minor. This is my baby we are talking about here... nothing is minor to me LOL!

I let the doc know about Emma having gray/ grayish-blue lips at times, and dusky nail beds... and that it usually resolves itself within a few minutes, and she listened intently. She asked if her fingers and toes were cold during these episodes and said it was common for children with heart murmurs to experience this. I was really glad that she took me seriously because when I mentioned this during her bout with pneumonia last year they blew me off because she was fine by the time we got her to the ER.

Emma did well, she followed directions during the exam and didn't shed a single tear. She did however scowl at the doctor while the doc listened several minutes to her heart, moving the stethoscope every 5 seconds or so. Emma was awarded with a sucker, which was blue of all things... but at least her lips are tinted blue for a good reason for once. ;)

I will let you guys know what the pediatric cardiologist says after the 28th, thanks in advance for your thoughts and prayers. We really appreciate it!

Here are a few pics of miss thang after her appointment, sporting a pony tail, my sunglasses and blue (sucker tinted) lips. :D

PS- I forgot to add that as of 2 days ago, Emma has told us that she isn't afraid of bugs anymore. Her kitty cat- the one she has a death grip on in the photos above- IS afraid of bugs, but she isn't. ;)

Friday, May 02, 2008

Ahhhhh, finally

What's new pussy cat? I know... I really need to get my buns over to your blog, like yesterday. ;)

I haven't been able to squeeze in blogging except a random post here and there to let you guys know that I haven't mysteriously lost my gravitational pull, therefore floating off the face of the earth in into the heavens. There has been no spontaneous combustion, freak accidents (except for Emma spraining her knee this last Tuesday). Nope, just me, tired and whiny me, still unable to manage my time enough to squeeze in some good quality blogging.

What, you say? Emma? Knee? seeing a doctor for a second week in a row? Why yes! My little one has suddenly grown accustomed to waiting rooms and has developed a need for a physicians intervention.

Forsooth and whatnot. ;)

I cannot explain it except that she was happily jumping one minute, then screaming in agony the next. I had her rest for an hour, and she woke a dozing me with crying. I found her crumpled on the floor next to the couch, just a few feet from me. So then I decided to give her some medicine and see if she could walk, she limped a little. Then I had her try to climb the stairs (for nap time) and the moment she used her right leg to climb the first step, she cried in agony.

I called the hubs and contemplated taking her to the ER again, but after John came home he convinced me that she probably didn't need to see the ER doc, and possible could wait a day to see if she really needed to see a doc at all. Over protective me? I convinced him that neurotic me wouldn't rest until she was seen and I knew that it was nothing more than a sprain (as evidenced by her slightly swollen knee).

I had to work, but found out 5 hours later *rolls eyes*, after I got home, that she had a sprain and took some children's motrin before bed.

On another note, and more on Emma, thank you for all of your comments and prayers concerning the chest pains and the buggie issues. She has an appointment next week to see a pediatrician ( we normally see a family doc), and I will update you guys with more info as we have it.

On the buggie front, we went outside this week so that the girls could try out the new side walk paint. Em immediately began to scream because of the ants on the side walk. SO... I sprayed her with invisible spray (insect repellent), gave her her buggie sunglasses, then armed her with bug "happy spray" (20 parts water to 1 part febreeze, to make the bugs be nice, not to kill them) in her own special squirt bottle.

One commenter said that they thought that "indulging her fears" wasn't exactly the way to go (thanks for the comment Sue), but I would just like to say that I have tried the "get over it" approach and it actually made her more afraid. I think she trusted me a little less, and that bothered me. The problem with parenting (and childhood) is that one approach does not work for every child. My girls are very high strung and stubborn. My oldest is afraid of water but because we got her a pool that she could comfortably stand up in (she was almost 4 foot and the pool was 30 inches deep), she had a blast after getting used to the pool for only a 1/2 hour. the year before year I accidentally dropped her when my husband was tossing her to me in a deeper pool and she didn't trust me after that, and refused to let me hold her while in the pool. Though the school of hard knocks approach might work for some children, I have learned that suggesting that they just get over it makes them mistrust me and even fear me. I really dislike the idea of them not trusting me since I've had an inherent (but well deserved) fear and mistrust of my abusive mother my whole life.

What I did do though was try several things until I found something that made her more comfortable. I brought her her dad's comfy butterfly chair outside for her to sit in, and brought out her Magnadoodle to keep her occupied and distracted, all the while not giving in to her pleas to go inside. I did give in to her demands to have her feet up off of the ground because she didn't calm down after 1/2 hour and was shaking terribly, and considering her recent bout with chest pain I felt this was necessary... but also I think compromise is in order her for her to feel like she is being heard, has options and is at least a little in control. Baby steps right? She IS only 3 years old. Spraying her "happy bug spray" seemed to help and I think she felt in control some what. Of course once she got going there was no stopping her until I convinced her that she had adequately drenched a 2 foot radius from her chair.

As for the 'ahhhhh, finally" part, I found a yoga DVD that I just love. This is not an official review, I just really love it!

Yoga For Beginners truly is a DVD for beginners. What I love about Barbara's approach to yoga is that she gives you tips on breathing, body movement and placement. She also says pointers like ,"If you feel a strain in Y or Z, then your X is too far off center". She also gives reminders to watch for neck or face strain, etc. There is an intermediate section also, but I'm not there yet so I can't tell about that yet, but I have noticed increased flexibility just from doing her DVD every other day. I also noticed that I am less sore after work (***TMI ALERT*** I usually have horrible groin/pelvic floor pain from all the walking on those hard floors, and my back is pretty stiff), that my upper body strength has increased, and ***TMI ALERT*** that my boobs have perked up a bit.

So, to sum up... I can now officially call it Yog-ahhhhhh instead of Yog-ouch. ;) If you are interested in giving yoga a try, but don't like the fact that most exercise DVD's don't take the time to explain proper body mechanics for each exercise, or you think that yoga is too hard based on what you have seen on TV I highly recommend this DVD to get you going.