Swallow Study

Lucy had another swallow study yesterday.  If you remember, her last one was shortly before we left Denver.  At that point, they were really focused on making sure her airway closed when she swallowed.  In this swallow study, they performed a full upper GI study, looking at her anatomy (looks good) and focusing on the stricture in her esophagus and viewing what happens when she eats orally.

Jason was gone for work, so I took mom with me - her first trip down to Children's here in Minnesota.  It's so helpful to have an extra set of hands to help haul around Lucy's stuff, dress/undress her and entertain her during the time we wait.

The results confirmed what the doctor had seen during her endoscopy.  Her esophagus is very narrow near her surgical site and when she eats, the food pools at that site and gradually works its way down instead of smoothly going from mouth to stomach.  So, if she eats too fast, that pool of food comes back up instead of going down and she is at risk for aspiration if her airway doesn't close properly when it comes up.

The study was kind of rough on her.  First she had to lay extremely still for a series of x-rays (does any 8 month old ever lay completely still if they are not sleeping?)  While flat on her back, they gave her a series of drinks of liquid from a sippy cup in order to watch how she handled it.  She was screaming and by the end had almost cried herself to sleep, poor baby!  It was one of those appointments that I had to remind myself not to cry for her and remember that the end result will be good, but getting there is painful for her and for me to watch!

Then, I had to feed her baby food mixed with barium gel (gross - I'm surprised she ate it!) and they had me feed her extremely fast so they could see it back up, as described above.  Inevitably, it came back up after a few minutes.  Then they had me inject a syringe of liquid into the back of her mouth to see what liquid would do - she ended up coughing on that, because she aspirated some of it.  Now, as a mom who is with Lucy most of the time when she eats, I know what an unrealistic situation this is for us - we would NEVER feed her that fast and I think if someone injected a syringe of liquid into the back of my throat, I would also choke on it!  At the end of the study, the therapist recommended that we not feed her anything orally, which Jason and I totally disagree with.  We feel like we know her and what her body can handle and that stopping all oral feedings at this point would be more detrimental to her long-term development.  We've often read that baby's with TEF repair learn to adjust to eating at a pace that they can handle and we feel like that is what she is doing.  We know that we're not able to feed her Cheerios or won't be able to give her a half a grape when she's 18 months old, but she will adjust to gradually be able to handle those foods.  It's a tough position to be in as a parent, but we have to remind ourselves that we are her biggest advocates and are with her all of the time - not just an hour like these doctors!

Tolerating mommy's silly dress up ideas

At the end of the day, we know that she will need her esophagus dilated, likely several times and we hope to be able to move forward with that soon so that Lucy can be on the road to getting rid of her feeding tube!  It's a long road and we are making baby steps in the right directions - I just wish those steps could be leaps and bounds instead! :(

Standing by the deck door, watching all the birds

Doctors appointments aside, Lucy is such a happy and fun baby.  She is playful and patient and good-natured.  She is so close to being on the move, but can't quite figure out how to get all of her limbs moving together in the right position to let her crawl.  She's been very into standing lately and often will plank when we try to sit her down.

I've been following a couple blogs and Caring Bridge sites of friends who have babies in the NICU and am reminded of what a long journey that time was for us as a family,  Even though we go to the doctor at least once a week, it's so much better to have Lucy home with us - safe and sound despite her challenges!

Next week, we have her 9-month appointment!

After seemingly endless snow days here in Minnesota, I decided we needed some fresh air today - not sure what Lucy thought about it!