Early in March, I took Natalia to her annual cardiologist appointment. She did pretty well through the 2 hour visit (EKG, echocardiogram, etc.) and there has always been some leakage from the sites where the two main arteries of her heart were reattached after her arterial switch surgery at 6 days old. And every year when we go for her check-up, the leakage has been about the same.This year her test results showed more leakage/spurting, caused by slightly tightening arteries, putting strain on those old incision sites. They wanted to put her on blood pressure medication to help the arteries relax. (We have not had any restrictions or medication for her since she came home from the hospital at 3 weeks old--just routine checkups.)
Listed side effects from the medication are mainly tiredness and sore throat, both of which we noticed right away. I guess we just expected the tiredness to be at the beginning...not chronic.
We didn't foresee...the bear. The shortened fuse. Scratch that--the non-existant fuse.
She's a determined and vocal little gal, and has never been shy when expressing herself, the good, the bad, and the ugly. But what I've been struggling with, (since I'm the one at home doing the bulk of the disciplining), is how do I allow for real chemical imbalances, yet viligantly shepherd her heart?
I know I am more prone to put my inner sinner on full display when I am physically feeling low. Especially when it is for days on end. Especially with my closest family members.
This little one has been chronically tired for nearly 2 months, no matter how diligently we get her to bed early. She's been a different girl since we started the medication. Very different.
If this new medication is inducing these changes in her behavior, (the frequent explosions of anger, the rebellion and ignoring correction, the regressing on the potty front--though it seems only at home) then how best do I (we) respond?
We do not believe her behavior is caused by the medication alone--but think it is definately heightening her responses. Increasing them to the tenth degree.
I've been crying out to the Lord for wisdom. To know what questions to ask and how best to navigate the confusing and overwhelming medical scene. (We're dealing with her vital organ, afterall.) For God to quiet our daughter with His peace, and give us wisdom how to discipline her. For Him to instruct my heart as I've grown weary at times, feeling like I'm continually walking through a minefield. And to keep my attitude soft and compassionate towards her, not frustrated or angry because of yet another meltdown over something I deem insignificant.
I suspect that for Natalia, life probably feels out of control. She's trying to keep it together all day long, and then the littlest thing feels like too much. Pray that I openly model dependance on the Lord to her. Pray for healing.
She is our gift, our miracle baby. God has a future and a purpose for her life, and He can be trusted at all times.
9 comments:
Oh man, that sounds really tough! It reminds me of when Owen was on steroids. And that was only for a weekend. It was awful. I'll be praying for you guys, for wisdom in every area of all this!
Wow. I have no advice for you except for you to keep doing what you are already doing seeking God to shepherd your dear daughter's heart.
Have you discussed any other meds instead of this one?
Love and prayers!
I am so sorry you're going this, Krista. It's hard to watch kids suffer, and it's hard to know when they're using their affliction for attention vs. genuinely affected emotionally. Since you noticed a marked difference that coincides with starting the meds, it seems reasonable to expect that her behaviors (tiredness ,outbursts) are largely to blame. I hear what you're saying, though, and certainly you still have to discipline her regardless of affliction.
My question is Annette's: have you discussed other meds? I would think that the quality of life would greatly improve for all of you if you had a different med. I'll pray for wisdom.
Krista,
I will be praying for you. I struggle with these questions without the added trigger of medication. I can only imagine the daily struggles you are facing.
Lord, I pray you grant Krista your wisdom and Natalia your peace. Only you, by your Spirit, can accomplish this!
I can so closely relate to your struggles, Krista, as we're struggling with similar things with Ryan, and his seasonal allergies and medications. I share your heart of not wanting to use medical issues/medications as an excuse, but at the same time, not wanting to discount the fact that the medication correlated with the behaviors.
I can't offer any amazing advice, but just know that you as her parents, know your child best of all, and you need to follow your heart, as the Lord leads you, in making the best decisions for Natalia. I will pray specifically for wisdom to hear God, patience and grace as you discipline and train Natalia, and healing for the leaking in her heart. Medical challenges are tough to endure and even tougher when it affects your child!
Hey Krista. So sorry to hear of your struggles. One thing that has been encouraging to me on the parenting front is that things are always a season and there will always be another opportunity to "ramp up" the discipline so-to-speak. So for example, you just have a baby and your toddler is getting away with things while you sit and nurse. Instead of fretting, know that those same behaviors will be there in a few months and when you are not sitting as much and have more energy to be consistent you can more aggressively address them.
So I'm not advocating no discipline for you, just saying for your heart to rest in trusting God. It is helpful to know that that she is being affected by her meds and giving her some mercy will be helpful to you and her!
Thanks for sharing your heart. You clearly love the Lord and your daughter. Life on this earth is TOUGH! Praying for you.
Not easy parenting, Krista.
I do believe God will supply specific wisdom for you and Pete, though. I've seen it in my own life so many times when it's specific wisdom I am needing. Keep reminding yourself and her of God's promises and actively seek out encouragement from those around you...not advice necessarily (b/c there are those that are too ready to give it and shouldn't. It's usually the ones who don't readily share advice that have the best wisdom to share.:)
But, do ask others to be praying and helping you to see the grace in this hard season of figuring out what it means to be faithful to God and faithful to Natalia.
GOd is faithful to His own.
love you much, friend.
I have been away from the blog world for so long... I am just reading this now. I can feel your pain... Maddie's condition tires her out very quickly as well, and we see a lot of behavior issues as a result (?). It will be a long-term battle, but hang in there!!! Keep praying for wisdom.
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