"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16









Tuesday, November 20, 2012

A "little" update


I have realized that it’s been quite a while since my last update, and honestly I was waiting until we had some “answers” to share. Unfortunately we still don’t have many answers.  Meghan has been in the midst of a few different workups to figure out why she hasn't gained any weight in 2 months- she is a peanut! At 12 lbs, 9 oz, she's fallen off the growth chart. The endocrinologist decided after the second round of blood work that she still needs to undergo a stimulation test, to check and see how well the pituitary gland is functioning. It’s a 4 hour test that involves giving her a medication and then testing her blood at different intervals. It’s on the books next month, in addition to an upper GI series (a special XRay with dye that shows her esophagus and stomach).  This was ordered after we were referred to a gastroenterologist, who ordered a fecal fat test to check for malabsorption (it was 72 hours of, ahem, “dedicated parenting”), and had us meet with a dietitian again. We are now adding oils to her baby food, corn syrup to her fruits, and giving her the high calorie formula, plus nursing. The upper GI series is to check and see whether or not she may have an undiagnosed tracheo-esophageal fistula (an abnormal connection between the food pipe, and the wind pipe), which can sometimes lead to poor weight gain. It is one possibility in kids with VACTERL association, and her GI tract is probably the only thing in her little body that hasn't been imaged at some point (I’m not kidding…) so he wanted to rule that out as well. As we were leaving the office of the gastro doc, with our stack of instructions and orders, I happened to glance down at the diagnoses listed as the reason for testing. They were all words I had seen before, until one: FAILURE TO THRIVE. I don’t know why that has hit me so hard, but it has. Mentally, that is a tough one to take as a parent. Even in doing everything to the best of your ability as a parent, that diagnosis can make you feel like you failed. That combined with the fact that her therapy is on hold until we get more answers about her neck makes it feel like we are falling behind. However, I am consciously choosing not to focus on the diagnosis, or the time line, but on the gummy smiles, the giggles, and the BABBLING (yes, she’s starting to talk!!!!) that is coming from this precious little person that remind me that she is in fact thriving in her own way. So far, we've learned that she speaks fluent hippo…

video

Pure, sweet joy, right?? 

The next month will hopefully bring more answers, as we travel to Philadelphia for some expert opinions about her spine. We are praying in the meantime, that her shunt continues to function well, since there has been some significant swelling again lately. If she’s on your prayer list, please pray for her, and for wisdom and direction for us and her physicians. We know that HE already knows what the answers will be, for better or for worse, and there is SO much peace in that….

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7