Thursday, June 19, 2014

Unexpected Feeding Glitches for Juliet

So our new baby adventures have not quite turned out the way we thought they would.  Juliet has been having some struggles, hence the lack of time to post updates.

A basic summary of our first month with our sweet baby girl.  She was unable to gain weight initially.  Her three week weigh in showed that she was still significantly below her birth weight.  After several doctor and lactation appointments, the decision was made to switch to bottle feeding.  You know its not a great situation when the lactation consultant tells you to stop nursing.

Then from week 3 to week 4, she made huge progress when being bottle fed.  She gained one pound in a week.  We figured the main problem was over, we'd let her gain some weight, and switch back to nursing.  However the parenting roller coaster had a few more unexpected twists and hills.

She had a swallow study the day after we learned of her great weight gain.  This is a test where the baby drinks from a bottle with barium so specialists can watch the child in a live-action kind of x-ray.  It was immediately detected that Juliet has been aspirating many times every feeding, meaning she has been inhaling milk along with swallowing it.  We knew she choked sometimes, but it turns out she was also silently aspirating - meaning she was aspirating with no outward signs.

We were admitted to the hospital that day and an ng feeding tube was placed.  This is a feeding tube that runs from her nose to her stomach.  She seems to be tolerating the tube feedings and has been gaining weight.  The goal is that using the tube will give her throat and lungs a chance to heal and eventually she will be able to switch to thickened liquid from a bottle to nursing.

Since we can't confirm what is causing these issues, we don't know when she will no longer need the tube.  It could be weeks, months, or longer. 

The uncertainty is tough.  So is the round-the-clock pumping to provide her milk and maintain my supply in addition to the time spent on her feedings.  So is the triple-check system to make sure her tube is still properly placed every time before she eats to be sure that we don't accidentally pump her lungs full of fluid during exhausted middle-of-the-night feedings.

But, at least we have a game plan and a goal.  We know why she wasn't gaining weight and have a plan to address it.   We have a way of keeping her safe.  We have insurance.  We have access to excellent medical care.  We have family and friends that have been outstanding supports through all of this. 

And not to be overshadowed by these unexpected challenges, God has given us this incredibly sweet baby to love. 

My goodness that is one of the seven cutest kids I have ever seen.

1 comment:

JillR said...

Glad I took the time to catch up on your news & read about your newest family member. I'm sorry to hear about the issues with Juliet but glad you're on the right track. She sure is a cutie pie!