Monday, January 10, 2011

Choosing Faith Over Fear

Today was Claire's 18 month check-up.

It started snowing pretty heavily last night, and even Ben said the roads were bad, so I called a friend and asked her to take me to the check-up. She said she would as long as she got to make fun of me the entire time for my unwillingness to drive in the snow.

I considred- briefly- changing the appointment, but I really didn't want to because of a few concerns I had:

1. Claire's continued lack of weight gain

2. Claire's lips and mouth turn blue/purple on a consistent basis

3. Audra keeps squinting and saying her "eye-bops" (eyeballs) hurt, so I wanted to ask the doctor about how to get her checked out (which I learned I just need to take her in- we don't have vision insurance so I can go anywhere- anyone have a good pediactric eye doctor in the HR area they would recommend?)

So this morning I was chauffered to the doctor. Even though the roads were fine, I am forever grateful she gave me the ride. She took Audra home with her so I didn't have to deal with her during the appointment, and I am so glad she did because it ended up being over 2 hours. Yup, a two hour check-up.

Remember that thing I mentioned earlier about Claire's lips turning blue? Well, that's not a good thing.

It has been happening for a couple of months now- every couple of days (probably 2-4 times a week) they will turn blue and stay that way for a few hours. I had done some internet research on it on Thursday and I was actually on hold with the doctor's office to see if I should bring her in then, when the internet actually CALMED my worries and made me feel like an overreacting parent, so I hung up the phone and decided to wait until today.

What did the internet say? It seems a lot of parents were saying they had this exact same issue with their toddlers. They virtually all said that it turned out to be absolutely nothing. So, I decided it could be one of two things:

1. Nothing

2. A hole in her heart

Because these parents really were describing exactly what I was experiencing with Claire, I decided it could wait until today. I figured she would do some tests and nothing would show up and we would move on with our lives.

The doctor was concerned and we ran some tests- an EKG (monitors her heart) and a pulse ox (monitors her oxygen levels in her blood). The first thought from the doctor is that something is wrong with her heart- it is not normal apparently for children to turn blue.
Here is Claire getting her EKG. Believe it or not, she actually did great. For the pulse ox, I had to hold her and keep her relatively still for 35 minutes. That was hard, but having all these wires on her for the EKG mostly just confused and mesmerized her and she was fine

Both tests came back perfect- nothing was abnormal at all. The doctor did find a slight heart murmur, but nothing that would ordinarily concern her. With the blue, however, it could mean something- or nothing at all.

What's next? She will be seeing a cardiologist sometime this week- I am still in the process of jumping through hoops to get that scheduled. The cardiologist will do an ultrasound of the heart and perhaps a couple of other things to see if he finds anything.***

If he finds nothing, we will then do a sleep study (if that happens, I will need some tips from you Jenny in navigating Children's) to see if it is some kind of sleep disorder like sleep apnea or something.

If nothing is found there, she doesn't think there is much more to do. It could have something to do with her lungs, but because there are NO other symptoms, she doesn't think it is that. She is leaning a little more to something with the heart, but said she is optimistic by the results of the EKG and pulse ox, but that we need to rule out all of the scary stuff to be sure.

I am voting for nothing is wrong. That is what I am going with until I hear otherwise.I am choosing to have faith over fear. Some people might say I am choosing denial over fear. I know very well this could be a tragic road that we could be going down. But when I think about heart surgery or seeing my baby lying in the hospital bed tied up to tubes and wires fighting for her life...well, I can't think that way. Not until I absolutely have to- until I am forced to. So I will choose to believe that her body simply needs to adjust to the high altitude and that she will be just fine.

But prayers would be appreciated.

***UPDATE: Somebody cancelled their appointment and we were able to sneak in tomorrow (Tuesday) morning at 10:30. By noon we should know if and how serious this is.***

Other than that potentially life altering problem, Claire looks great. Here are the stats:

Weight: 21 lbs 3.5 oz- 10% (yea, we can switch to a front facing carsesat!)

Height: 32'' -62%

Head: 47 cm 64%

There is not a whole lot more to add since the Christmas update I gave on her, but she is speaking a whole lot more. Literally in just the past couple of weeks her language skills have really taken hold. I need to try and get some video of her!

Also, she now really loves dollies or this stuffed Pooh bear she got from a friend. She likes to hold them and love them. She hasn't figured out how to give kisses yet, but she still gives awesome hugs and great pats on the back.

Oh, and she loves walking on her tippy tippy toes- it is super cute.

We sure do love our "Little Pooch" (as Audra now calls her), and we plan on having her around for a long, long time!

10 comments:

  1. Best of luck Christina, that is really scary. We'll be praying for you guys.

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  2. I'm voting for nothing too. I have to smile at your reference to faith over fear vs. denial over fear. That was me just a month ago and I had all the same thoughts (my mom has breast cancer but she's like your dad--doing fine now after a scare). I don't know if it's optimism or denial, but either way, it helps you get through it. And remember, most of the time, it's nothing so chances are, it really is nothing. Good luck and keep us posted.

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  3. I hope you don't have to do a sleep study - I can imagine they really do suck for typical kids. I won't sugar coat it for you - but I would suggest a portable DVD player or something if you do end up going. I will definitely help you with Children's and stuff - as you know Cici had HORRIBLE apnea and other stuff while sleeping and she was on oxygen all night! Her pulse ox would drop to as low as 59 (!!!!) at night. Not good at all. But, since you say her lips are turning blue during the day, I would doubt that it's a sleep issue, actually (not that I know, or anything). What is she doing when that happens? How long does it last? You know - they sell little pulse ox machines at Walgreens for about $50 - we have one to just check if she's off or sick - they don't work great on little kids, but you can use them in a pinch. I would check her pulse ox when her lips are blue! If that's normal then I would probably be a lot less worried! I know several friends whose kids would hold their breath until they turned blue and passed out and they were totally fine. So who knows - and take it from someone who knows the worst scenario - being diligent, but hoping for the best and believing the best will happen is the way to go. There's just not a lot that thinking there is something wrong does for you. Go with your gut!

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  4. Katie-
    I didn't know about your mom- I am sorry you guys had to go through that, but so grateful she is OK!

    Jenny-
    Now that I know what a good pulse ox score is- 59! YIKES!!! She was between a 95-100 the whole time, so she looked great in that area. Is the pulse ox score related to the funcions of her heart? I should have asked that- but didn't think to. Her blue lips are totally random. Sometimes the evening, sometimes right when she wakes up, it totally comes and goes with no rhyme or reason. I am positive she is not holding her breath- I have never seen that at all. One person said their daughter would get blue lips from sucking on a sippy, but that doesn't fit Claire either. That's what's weird about it- there are truly no other symptoms. But if there is a sleep study, I will be in contact with you for sure! It seems like there must be something that is causing this, but hopefully it is something really minor.

    And thanks for the prayers, Shells- we'll take all we can get.

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  5. Pulse-ox tells them how much oxygen is in her blood. A good number means that her blood is properly oxygenated. (I know this because we Nathan has had it tested on a couple of occasions due to him developing asthma complications with his allergies)

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  6. So what does it mean if they have a low pulse ox? Obviously that they have low oxygen, but what is that connected to? Bad lungs? Heart?...

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  7. I'm guessing it could be either. With Nathan he was wheezing so they were concerned about lung function. I'm pretty sure it's important for people who've had a heart attack or stroke too to determine the function of the heart (they checked my dad's a lot after he had a stroke). I have a heart murmur too - have always had it. It's big enough to freak out doctor's who don't know about it, but not big enough to cause me any sort of problems or need intervention. Hopefully that's the deal with her too. If that's the case, when she gets older you'll just want to make sure she knows about it so she can warn anyone who is going to need to listen to her heart.

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  8. Wow, potentially scary stuff. I hope things go well at the appt tomorrow. Keep us posted, and we join our prayers with yours.

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  9. Oh wow Christina! I'm sorry you and Claire have to go through this, but I'm with you...it's most likely nothing. I'll keep you guys in my prayers. good luck tomorrow!

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  10. Kids sometimes do funky things as they develop. I use to freak out over Jacob, but I decided to not truly worry unless I had a good reason to do so. Sometimes the unknown can be scary, but it takes a lot of time and energy to be afraid of what might be. So I think choosing faith over fear is the exact right thing to do. By-the way, Jacob had sleep apnea and I think Alex does too (Dr. visit tomorrow for that one) and once we got his tonsils and adenoids out he has been perfect :)

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