So the last few years have been something. We had Eon and the diagnosis of Down syndrome and all the appointments/specialists associated with that. Then he had a vascular ring repair. We've also had one child diagnosed with anxiety disorder after baffling behavioral issues and another started medication for long-diagnosed ADHD. I had a kidney stone in pregnancy, and after, with resulting hospitalization and lithotripsy.
It should not have come as a surprise, then, to discover that there may be a problem with our littlest peanut, Keturah (KJ). She has been a slow grower from the beginning. She weighed 7lb, 11oz at birth, but was slow to put on the ounces and was just over 10lbs at 4 months. I was concerned; the doctor was not. She was plotting on the chart in a regular way and there was no cause for alarm.
Until Thursday, at her well-baby 6-month check, when she had gained only 2 ounces. Suddenly, her weight was no longer even on the chart and we were discussing failure to thrive work-ups. We decided to supplement for a month and reassess. Until he heard her heart and detected a murmur. "Have I heard a murmur on her before?" he asked. Nope. And he scheduled her for an echo-cardiogram.
I took it all in stride. In my Down syndrome world, echos, heart issues, and supplementation are all the norm. I am comfortable discussing these things. Only, this is not my hearty kid with Down syndrome. This is my tiny, delicate princess with the typical number of chromosomes. And I am terrified.
In retrospect, I can see so many signs for concern. She has always been "my putziest nurser" I've often said. She takes forever to finish feeding and usually falls asleep long before she's done. She sweats more than the others did. I can see her freakin' ribs when I change her diaper. (DUH!)
So now we wait, with Dr. Google close at hand and all the terrifying possibilities.
I find myself worrying and fretting.
Have I learned nothing over the past two years?!? God's got this. This does not take Him by surprise. Worrying doesn't do any good and cannot change the outcome of any situation. In fact, my life verse is Psalm 37:8b, "Do not fret - it only causes harm." (Other people get really cool life verses. God is very practical with me. :)
God loves my little princess even more than I do. He has a plan for her life, as He does mine. His grace is sufficient for me.
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Phillipians 4:6
Oh Tara...I will be in prayer for Keturah!! Yep, God's got it, but still...
ReplyDeleteBig (((HUGS)))
Amen, Tara! Thanks for sharing. :)
ReplyDeleteGosh that's a lot all in one year! I am hoping the Dr.'s have an answer for your about your princess's heart, I'll be checking back for an update.
ReplyDeleteWe love your little princess, too! Praying for all of you as you walk this bumpy path. Sharing your needs with my own KJ, too.
ReplyDeleteLots of love,
little girls fight...they are strong and your princess is a ROCKSTAR!! I think it is hard to see our children hurt and know we cannot fix right this minute...I am thinking of you all...be careful of Dr. Google...I have lost lots of sleep over his ability to tell me a tad to much...smiles
ReplyDeletePrayers for KJ's health and Mama's peace =)
ReplyDeleteTara, I am sorry to hear about your concerns for your youngest right now! I think sometimes when you have a diagnosis (like DS) "you toughen your skin" a little, but when you aren't expecting it, it comes as such a blow. I will be praying for your little KJ (and you)- if possible, back slowly away from the Google. I've found that it usually causes more stress than relief. And try to remember that there are lots of little baby girls who fall of the growth chart scales--even the ones who are "Failure to thrive"and in the long haul they are FINE. What a cutie KJ is- she certainly doesn't seem to be "suffering". :)
ReplyDeletePraying for your peace and her health!
ReplyDeleteWow, sometimes when you think you've got things sorted, life sneaks up behind you and Wham! It gets you again. Hoping it's nothing, just good things coming in small packages ;) As for Google, I agree with Jen- you never find the good news there!
ReplyDeleteFingers crossed. I am having the anxiety for you today. Luke's having tonsils and adenoids out, and his ears cleaned so they can actually see in there (!) and then grommets if needed. I know in my head that it's a relatively minor op, but in my heart it's another story.
Thinking of you.
Mel
So many prayers. Your feelings make complete sense. She is a beauty and she will be okay! If it is her heart and can be fixed, then life will be good! Please let us know right away!
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