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…
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
