Another CDH Awareness Day….

People would always ask after learning of Finley’s birth defect – “so she’s ok now, right?” And I would pause and say, “well, so far she has done really well, but there is a long list of things that can still happen.”

Of all the things on that long list, I don’t think I ever thought twice about her patch becoming infected.

Tomorrow, which is one of two national CDH Awareness days, we will go to Randall Children’s Hospital for Finley to have her non-healing wound excised. This is our last option before going in and taking out all the Gortex and seeing what options they have once they see how much diaphragm she has now. The infection on the patch is not healing because there are no blood vessels to deliver the antibiotics. That is why infections love man-made materials. After this procedure, If she continues to seep puss and the wound doesn’t heal, then it is time for the bigger, complicated (scary) surgery.

But, God.

I don’t need to fear.

“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” Psalm 46:1-3

Six years ago on this date, I was giddy with excitement about finding out the gender of my child the next day. I did not know it was CDH Awareness Day. I did not fear for her life, or that the anatomy scan would reveal anything other than a healthy baby and whether Rowan would have a sister or a brother. I was blissfully unaware of just how miraculous it is when the Doctor calls and says, “everything is exactly where it is supposed to be and everything is measuring within normal limits.” Many parents don’t hear those words. My life was forever changed on 3/31/10. I am thankful for the road we have traveled, and I am so thankful for every moment we have been blessed with both our daughters.

I have spent too much time worrying about things that never happen, and then shellshocked by things I never expected. There is a reason why God tells us 366 times in the Bible not to worry. Because we waste precious time. Because he has us and is with us every step of the way. Finley has battled an infection for the past 6 months, but she has stayed amazingly healthy. The infection is not making her “sick”, which is why we have been able to stay the course and wait. I praise God that other than the frequent upset stomach (which may be due to long term antibiotic use), she has been able to do most activities and go to school and be her spunky, joyful little self. I am thankful for the talented medical team we have here in Portland. Not one children’s hospital – but two. Our surgeon’s office has been incredible throughout this recent trial. I am thankful that we have excellent insurance through Jon’s work, so that even though we hit her deductible by February, and her out of pocket max in March- that this will not bankrupt us.  I am thankful for all the people CDH has brought into our lives. Our CDH family all across the world that is bonded by this dreadful birth defect. Today I will focus on the praises to drown out the fear. So much of fear is just lies. Remembering the monuments of what God has already done in Finley’s life and rejoicing- and I don’t think he’s done. So we continue to walk in faith and trust him.

Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone. The Lord is at hand;  do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” Phil 4:4-7

So tomorrow, please wear turquoise, or a Ladybug Run shirt and tell someone about CDH.


2 thoughts on “Another CDH Awareness Day….”

  1. Reblogged this on alohaina and commented:
    A beautiful blog speaking the truth about worrying (and CDH!) Ironically, I too woke up this morning thinking similar thoughts and thanking God.. I was so worried about “this” and “that” happening to Weston these past few months …and not one of those worries have ever happened.

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